Virtualization of open-source secure web services to support data exchange in a pediatric critical care research network

PubMed Central

Sward, Katherine A; Newth, Christopher JL; Khemani, Robinder G; Cryer, Martin E; Thelen, Julie L; Enriquez, Rene; Shaoyu, Su; Pollack, Murray M; Harrison, Rick E; Meert, Kathleen L; Berg, Robert A; Wessel, David L; Shanley, Thomas P; Dalton, Heidi; Carcillo, Joseph; Jenkins, Tammara L; Dean, J Michael

2015-01-01

Objectives To examine the feasibility of deploying a virtual web service for sharing data within a research network, and to evaluate the impact on data consistency and quality. Material and Methods Virtual machines (VMs) encapsulated an open-source, semantically and syntactically interoperable secure web service infrastructure along with a shadow database. The VMs were deployed to 8 Collaborative Pediatric Critical Care Research Network Clinical Centers. Results Virtual web services could be deployed in hours. The interoperability of the web services reduced format misalignment from 56% to 1% and demonstrated that 99% of the data consistently transferred using the data dictionary and 1% needed human curation. Conclusions Use of virtualized open-source secure web service technology could enable direct electronic abstraction of data from hospital databases for research purposes. PMID:25796596

Clinical Research Careers: Reports from a NHLBI Pediatric Heart Network Clinical Research Skills Development Conference

PubMed Central

Lai, Wyman W.; Richmond, Marc; Li, Jennifer S.; Saul, J. Philip; Mital, Seema; Colan, Steven D.; Newburger, Jane W.; Sleeper, Lynn A.; McCrindle, Brain W.; Minich, L. LuAnn; Goldmuntz, Elizabeth; Marino, Bradley S.; Williams, Ismee A.; Pearson, Gail D.; Evans, Frank; Scott, Jane D.; Cohen, Meryl S.

2013-01-01

Background Wyman W. Lai, MD, MPH, and Victoria L. Vetter, MD, MPH. The Pediatric Heart Network (PHN), funded under the U.S. National Institutes of Health-National Heart, Lung, and Blood Institute (NIH–NHLBI), includes two Clinical Research Skills Development (CRSD) Cores, which were awarded to The Children's Hospital of Philadelphia and to the Morgan Stanley Children's Hospital of New York–Presbyterian. To provide information on how to develop a clinical research career to a larger number of potential young investigators in pediatric cardiology, the directors of these two CRSD Cores jointly organized a one-day seminar for fellows and junior faculty from all of the PHN Core sites. The participants included faculty members from the PHN and the NHLBI. The day-long seminar was held on April 29, 2009, at the NHLBI site, immediately preceding the PHN Steering Committee meeting in Bethesda, MD. Methods The goals of the seminar were 1) to provide fellows and early investigators with basic skills in clinical research 2) to provide a forum for discussion of important research career choices 3) to introduce attendees to each other and to established clinical researchers in pediatric cardiology, and 4) to publish a commentary on the future of clinical research in pediatric cardiology. Results The following chapters are compilations of the talks given at the 2009 PHN Clinical Research Skills Development Seminar, published to share the information provided with a broader audience of those interested in learning how to develop a clinical research career in pediatric cardiology. The discussions of types of clinical research, research skills, career development strategies, funding, and career management are applicable to research careers in other areas of clinical medicine as well. Conclusions The aim of this compilation is to stimulate those who might be interested in the research career options available to investigators. PMID:21167335

Health Communications Specialist | Center for Cancer Research

Cancer.gov

Here’s an exciting opportunity for a talented communicator to be part of the effort to find cures for rare cancers and join our multidisciplinary team launching the My Pediatric and Adult Rare Tumor Network (MyPART). The mission of MyPART is to increase patient and patient family involvement in rare tumor research and develop new therapies for rare pediatric and adult solid

Pediatric Gastroenterology in Cuba: Evolution and Challenges.

PubMed

Castañeda-Guillot, Carlos

2016-10-01

INTRODUCTION The professional practice of pediatric gastroenterology arose in Cuba as an expression of the specialty's development internationally and Cuba's new strategies in public health, and in response to national needs for health care expertise in digestive diseases of infants, older children and adolescents. OBJECTIVES Describe the history of pediatric gastroenterology's development in Cuba since its inception at the National Gastroenterology Institute in the early 1970s, its contributions, and efforts to extend it to pediatric hospitals throughout Cuba. EVIDENCE ACQUISITION This is a historical review based on document analysis. Institutional sources from the National Gastroenterology Institute and Ministry of Public Health were reviewed, as well as international and national literature on the history of pediatric gastroenterology and unpublished texts since its emergence in 1972. DEVELOPMENT Although pediatric gastroenterology has not been formally recognized as a medical specialty in Cuba, there have been important achievements in establishing a network of specialized health care services for digestive diseases of children and adolescents. Gastrointestinal endoscopy and other auxiliary diagnostic modalities have been introduced for children and play a major role in clinical trials and research. This article describes the international context that promoted the specialty's development in Cuba. Reference is made to specialized training from its initial stages in 1972, its consolidation as an emerging discipline in Cuban medicine, and its diffusion in Latin American and Caribbean countries. Professional development and specialized training to meet health human resource needs in pediatric hospitals are described, as well as Cuban participation in the Latin American Society for Pediatric Gastroenterology, Hepatology and Nutrition. National and international milestones, publications, awards and recognitions that indicate advances despite difficulties are also presented. CONCLUSIONS Since 1972, there have been major strides in the development of pediatric gastroenterology practice in Cuba. The establishment of a national network of specialized services in pediatric hospitals throughout Cuba has provided quality health care for digestive diseases of childhood. Pediatric gastroenterology's development and achievements in healthcare and research are such that it deserves official recognition as a medical specialty Cuba. KEYWORDS Pediatric gastroenterology, history of medicine, national health system, service network, hepatology, children, adolescents, Cuba.

Research training of Developmental-Behavioral Pediatrics fellows: a survey of fellowship directors by Developmental-Behavioral Pediatrics Research Network.

PubMed

Wiley, Susan; Schonfeld, David J; Fredstrom, Bridget; Huffman, Lynne

2013-01-01

To describe research training in Developmental-Behavioral Pediatrics (DBP) Fellowship Programs. Thirty-five US-accredited DBP fellowships were contacted through the Developmental-Behavioral Pediatrics Research Network to complete an online survey on scholarly work and research training. With an 83% response rate, responding programs represented 110 (87 filled) fellowship positions. External funding for fellowship positions was minimal (11 positions fully funded, 13 funded above 50% of cost). Structured research training included didactic lectures, web-based training, university courses, direct mentoring, journal clubs, and required reading. Of the 159 fellows described, spanning a 5-year training period, the majority chose projects relying on their own data collection (57%) rather than joining an existing research study and focused on clinical research (86%). Among 96 fellows with completed scholarly work, 29% were observational/epidemiological studies, 22% secondary analyses of large data sets, 16% community-based research, and 15% survey design. A limited number of fellows pursued basic science, meta-analysis/critical appraisal of the literature, or analysis of public policy. Barriers to successful fellow research are as follows: lack of time and money, challenges in balancing clinical demands and protected faculty research time, limited faculty research opportunities, time or expertise, and a lack of infrastructure for fellow research mentoring. The scholarly work of fellows in DBP fellowship programs has primarily focused on clinical research using observational/epidemiological research and secondary analysis of large data set. Barriers largely in faculty time and expertise for research mentoring and inadequate funding in programs that have high clinical demands and little resources for research efforts were noted.

Researching asthma across the ages: insights from the National Heart, Lung, and Blood Institute's Asthma Network.

PubMed

Cabana, Michael D; Kunselman, Susan J; Nyenhuis, Sharmilee M; Wechsler, Michael E

2014-01-01

Clinical asthma studies across different age groups (ie, cross-age studies) can potentially offer insight into the similarities, differences, and relationships between childhood and adult asthma. The National Institutes of Health's Asthma Research Network (AsthmaNet) is unique and innovative in that it has merged pediatric and adult asthma research into a single clinical research network. This combination enhances scientific exchange between pediatric and adult asthma investigators and encourages the application of cross-age studies that involve participants from multiple age groups who are generally not studied together. The experience from AsthmaNet in the development of cross-age protocols highlights some of the issues in the evaluation of cross-age research in asthma. The aim of this review is to summarize these challenges, including the selection of parallel cross-age clinical interventions, identification of appropriate controls, measurement of meaningful clinical outcomes, and various ethical and logistic issues. Copyright © 2013 American Academy of Allergy, Asthma & Immunology. Published by Mosby, Inc. All rights reserved.

Proceedings of the Inaugural Pediatric Dermatology Research Alliance (PeDRA) Conference

PubMed Central

Siegel, Dawn H.; Choate, Keith; Drolet, Beth A.; Frieden, Ilona J.; Teng, Joyce M.; Tom, Wynnis; Williams, Mary; Eichenfield, Lawrence F.; Paller, Amy S.

2014-01-01

Abstract/Statement of the problem Skin disease research involving children currently faces several major hurdles and as a result, many therapies are only available for off-label use in children and many of the most pressing clinical needs of our pediatric population remain unsolved. A strategic planning committee of the Society for Pediatric Dermatology (SPD) identified the need for an organized, inclusive research alliance to augment the resources of individual practitioners and pre-existing smaller collaborative groups and facilitate robust, multicenter basic, translational, and clinical research and therapeutic trials. A December 2011 National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Roundtable on Pediatric Dermatology further detailed the therapeutic gaps and barriers to translation of scientific advances to clinical practice. Building on these forums, in July 2012, a group of interested investigators met in Monterey, CA to develop the infrastructure for collaborative pediatric skin research, now called the Pediatric Dermatology Research Alliance (PeDRA). The vision of PeDRA is to create sustainable collaborative research networks to better understand, prevent, treat and cure dermatologic diseases in children. From that starting point, subcommittees and expert members were added, stakeholders identified, and seed funding garnered, with the first PeDRA stand-alone research meeting* realized in Chicago, IL in October 2013. PMID:25318428

Federating clinical data from six pediatric hospitals: process and initial results for microbiology from the PHIS+ consortium.

PubMed

Gouripeddi, Ramkiran; Warner, Phillip B; Mo, Peter; Levin, James E; Srivastava, Rajendu; Shah, Samir S; de Regt, David; Kirkendall, Eric; Bickel, Jonathan; Korgenski, E Kent; Precourt, Michelle; Stepanek, Richard L; Mitchell, Joyce A; Narus, Scott P; Keren, Ron

2012-01-01

Microbiology study results are necessary for conducting many comparative effectiveness research studies. Unlike core laboratory test results, microbiology results have a complex structure. Federating and integrating microbiology data from six disparate electronic medical record systems is challenging and requires a team of varied skills. The PHIS+ consortium which is partnership between members of the Pediatric Research in Inpatient Settings (PRIS) network, the Children's Hospital Association and the University of Utah, have used "FURTHeR' for federating laboratory data. We present our process and initial results for federating microbiology data from six pediatric hospitals.

Virtualization of open-source secure web services to support data exchange in a pediatric critical care research network.

PubMed

Frey, Lewis J; Sward, Katherine A; Newth, Christopher J L; Khemani, Robinder G; Cryer, Martin E; Thelen, Julie L; Enriquez, Rene; Shaoyu, Su; Pollack, Murray M; Harrison, Rick E; Meert, Kathleen L; Berg, Robert A; Wessel, David L; Shanley, Thomas P; Dalton, Heidi; Carcillo, Joseph; Jenkins, Tammara L; Dean, J Michael

2015-11-01

To examine the feasibility of deploying a virtual web service for sharing data within a research network, and to evaluate the impact on data consistency and quality. Virtual machines (VMs) encapsulated an open-source, semantically and syntactically interoperable secure web service infrastructure along with a shadow database. The VMs were deployed to 8 Collaborative Pediatric Critical Care Research Network Clinical Centers. Virtual web services could be deployed in hours. The interoperability of the web services reduced format misalignment from 56% to 1% and demonstrated that 99% of the data consistently transferred using the data dictionary and 1% needed human curation. Use of virtualized open-source secure web service technology could enable direct electronic abstraction of data from hospital databases for research purposes. © The Author 2015. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Strategies for addressing barriers to publishing pediatric quality improvement research.

PubMed

Van Cleave, Jeanne; Dougherty, Denise; Perrin, James M

2011-09-01

Advancing the science of quality improvement (QI) requires dissemination of the results of QI. However, the results of few QI interventions reach publication. To identify barriers to publishing results of pediatric QI research and provide practical strategies that QI researchers can use to enhance publishability of their work. We reviewed and summarized a workshop conducted at the Pediatric Academic Societies 2007 meeting in Toronto, Ontario, Canada, on conducting and publishing QI research. We also interviewed 7 experts (QI researchers, administrators, journal editors, and health services researchers who have reviewed QI manuscripts) about common reasons that QI research fails to reach publication. We also reviewed recently published pediatric QI articles to find specific examples of tactics to enhance publishability, as identified in interviews and the workshop. We found barriers at all stages of the QI process, from identifying an appropriate quality issue to address to drafting the manuscript. Strategies for overcoming these barriers included collaborating with research methodologists, creating incentives to publish, choosing a study design to include a control group, increasing sample size through research networks, and choosing appropriate process and clinical quality measures. Several well-conducted, successfully published QI studies in pediatrics offer guidance to other researchers in implementing these strategies in their own work. Specific, feasible approaches can be used to improve opportunities for publication in pediatric, QI, and general medical journals.

Noninvasive Brain Stimulation in Pediatric ADHD: A Review

PubMed Central

Rubio, Belen; Boes, Aaron D.; Laganiere, Simon; Rotenberg, Alexander; Jeurissen, Danique; Pascual-Leone, Alvaro

2015-01-01

Attention-deficit hyperactivity disorder (ADHD) is one of the most prevalent neurodevelopmental disorders in the pediatric population. The clinical management of ADHD is currently limited by a lack of reliable diagnostic biomarkers and inadequate therapy for a minority of patients that do not respond to standard pharmacotherapy. There is optimism that noninvasive brain stimulation may help to address these limitations. Transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS) are two methods of noninvasive brain stimulation that modulate cortical excitability and brain network activity. TMS can be used diagnostically to probe cortical neurophysiology, while daily use of repetitive TMS or tDCS can induce long-lasting and potentially therapeutic changes in targeted networks. In this review we highlight research showing the potential diagnostic and therapeutic applications of TMS and tDCS in pediatric ADHD. We also discuss the safety and ethics of using these tools in the pediatric population. PMID:26661481

Medical education practice-based research networks: Facilitating collaborative research.

PubMed

Schwartz, Alan; Young, Robin; Hicks, Patricia J

2016-01-01

Research networks formalize and institutionalize multi-site collaborations by establishing an infrastructure that enables network members to participate in research, propose new studies, and exploit study data to move the field forward. Although practice-based clinical research networks are now widespread, medical education research networks are rapidly emerging. In this article, we offer a definition of the medical education practice-based research network, a brief description of networks in existence in July 2014 and their features, and a more detailed case study of the emergence and early growth of one such network, the Association of Pediatric Program Directors Longitudinal Educational Assessment Research Network (APPD LEARN). We searched for extant networks through peer-reviewed literature and the world-wide web. We identified 15 research networks in medical education founded since 2002 with membership ranging from 8 to 120 programs. Most focus on graduate medical education in primary care or emergency medicine specialties. We offer four recommendations for the further development and spread of medical education research networks: increasing faculty development, obtaining central resources, studying networks themselves, and developing networks of networks.

Medical education practice-based research networks: Facilitating collaborative research

PubMed Central

Schwartz, Alan; Young, Robin; Hicks, Patricia J.; APPD LEARN, For

2016-01-01

Abstract Background: Research networks formalize and institutionalize multi-site collaborations by establishing an infrastructure that enables network members to participate in research, propose new studies, and exploit study data to move the field forward. Although practice-based clinical research networks are now widespread, medical education research networks are rapidly emerging. Aims: In this article, we offer a definition of the medical education practice-based research network, a brief description of networks in existence in July 2014 and their features, and a more detailed case study of the emergence and early growth of one such network, the Association of Pediatric Program Directors Longitudinal Educational Assessment Research Network (APPD LEARN). Methods: We searched for extant networks through peer-reviewed literature and the world-wide web. Results: We identified 15 research networks in medical education founded since 2002 with membership ranging from 8 to 120 programs. Most focus on graduate medical education in primary care or emergency medicine specialties. Conclusions: We offer four recommendations for the further development and spread of medical education research networks: increasing faculty development, obtaining central resources, studying networks themselves, and developing networks of networks. PMID:25319404

Pediatric Emergency Care Applied Research Network head injuryprediction rules: on the basis of cost and effectiveness

PubMed

Gökharman, Fatma Dilek; Aydın, Sonay; Fatihoğlu, Erdem; Koşar, Pınar Nercis

2017-12-19

Background/aim: Head injuries are commonly seen in the pediatric population. Noncontrast enhanced cranial CT is the method of choice to detect possible traumatic brain injury (TBI). Concerns about ionizing radiation exposure make the evaluation more challenging. The aim of this study was to evaluate the effectiveness of the Pediatric Emergency Care Applied Research Network (PECARN) rules in predicting clinically important TBI and to determine the amount of medical resource waste and unnecessary radiation exposure.Materials and methods: This retrospective study included 1041 pediatric patients presented to the emergency department. The patients were divided into subgroups of "appropriate for cranial CT", "not appropriate for cranial CT" and "cranial CT/observation of patient; both are appropriate". To determine the effectiveness of the PECARN rules, data were analyzed according to the presence of pathological findings Results: "Appropriate for cranial CT" results can predict pathology presence 118,056-fold compared to the "not appropriate for cranial CT" results. With "cranial CT/observation of patient; both are appropriate" results, pathology presence was predicted 11,457-fold compared to "not appropriate for cranial CT" results.Conclusion: PECARN rules can predict pathology presence successfully in pediatric TBI. Using PECARN can decrease resource waste and exposure to ionizing radiation.

Federating Clinical Data from Six Pediatric Hospitals: Process and Initial Results for Microbiology from the PHIS+ Consortium

PubMed Central

Gouripeddi, Ramkiran; Warner, Phillip B.; Mo, Peter; Levin, James E.; Srivastava, Rajendu; Shah, Samir S.; de Regt, David; Kirkendall, Eric; Bickel, Jonathan; Korgenski, E. Kent; Precourt, Michelle; Stepanek, Richard L.; Mitchell, Joyce A.; Narus, Scott P.; Keren, Ron

2012-01-01

Microbiology study results are necessary for conducting many comparative effectiveness research studies. Unlike core laboratory test results, microbiology results have a complex structure. Federating and integrating microbiology data from six disparate electronic medical record systems is challenging and requires a team of varied skills. The PHIS+ consortium which is partnership between members of the Pediatric Research in Inpatient Settings (PRIS) network, the Children’s Hospital Association and the University of Utah, have used “FURTHeR’ for federating laboratory data. We present our process and initial results for federating microbiology data from six pediatric hospitals. PMID:23304298

European perspectives on pediatric formulations.

PubMed

Breitkreutz, Jörg

2008-11-01

The 2007 European Union (EU) regulation on medicinal products for pediatric use may change the present unsatisfying situation in the EU by stimulating research and development of medicines for use in children through rewards and incentives. This commentary reflects on the new EU regulations and guidelines, with special attention paid to the impact on pediatric formulation science. The focus of this article is on the EU perspective for pediatric formulations and highlights the differences compared with the pediatric drug formulation situation in the United States. Materials for this article were gathered during a literature search of MEDLINE and Chemical Abstracts (1970-October 2008) using the following terms: paediatric/pediatric drug formulations, age-appropriate dosage forms, child-appropriate medicines, and paediatric/pediatric regulation. Since the EU legislation on medicines for children came into force in 2007, a great emphasis has been placed on creating new organizations, scientific networks, and programs dealing with pediatric medicines and child-appropriate drug formulations. Although the US legislation was an appropriate model, the EU introduced some novel measures to improve the current situation, such as the Paediatric Investigation Plan and the Paediatric Use Marketing Authorisation. For globally operating pharmaceutical companies, the peculiarities of the European market have a strong impact on their product development strategies. Because the European approach demands early investigations into drug formulations for children, various issues must be resolved, including the following: choosing formulations for each age group, determining which excipients may be used in the formulation and which delivery device is appropriate, and predicting the taste sensation of an oral formulation. Numerous initiatives and networks are evolving in Europe. An important future task will be the coordination of these activities and the linking to other groups working on pediatric formulations outside the EU. Similar to the research in pediatric drug formulations that was stimulated by the US legislation and incentives of the last decade, the 2007 EU legislation promises improvements in the availability of child-appropriate drugs in Europe.

Feasibility and perceived benefits of a framework for physician-parent follow-up meetings after a child's death in the PICU.

PubMed

Meert, Kathleen L; Eggly, Susan; Berg, Robert A; Wessel, David L; Newth, Christopher J L; Shanley, Thomas P; Harrison, Rick; Dalton, Heidi; Clark, Amy E; Dean, J Michael; Doctor, Allan; Nicholson, Carol E

2014-01-01

To evaluate the feasibility and perceived benefits of conducting physician-parent follow-up meetings after a child's death in the PICU according to a framework developed by the Collaborative Pediatric Critical Care Research Network. Prospective observational study. Seven Collaborative Pediatric Critical Care Research Network-affiliated children's hospitals. Critical care attending physicians, bereaved parents, and meeting guests (i.e., parent support persons, other health professionals). Physician-parent follow-up meetings using the Collaborative Pediatric Critical Care Research Network framework. Forty-six critical care physicians were trained to conduct follow-up meetings using the framework. All meetings were video recorded. Videos were evaluated for the presence or absence of physician behaviors consistent with the framework. Present behaviors were evaluated for performance quality using a 5-point scale (1 = low, 5 = high). Participants completed meeting evaluation surveys. Parents of 194 deceased children were mailed an invitation to a follow-up meeting. Of these, one or both parents from 39 families (20%) agreed to participate, 80 (41%) refused, and 75 (39%) could not be contacted. Of 39 who initially agreed, three meetings were canceled due to conflicting schedules. Thirty-six meetings were conducted including 54 bereaved parents, 17 parent support persons, 23 critical care physicians, and 47 other health professionals. Physician adherence to the framework was high; 79% of behaviors consistent with the framework were rated as present with a quality score of 4.3 ± 0.2. Of 50 evaluation surveys completed by parents, 46 (92%) agreed or strongly agreed the meeting was helpful to them and 40 (89%) to others they brought with them. Of 36 evaluation surveys completed by critical care physicians (i.e., one per meeting), 33 (92%) agreed or strongly agreed the meeting was beneficial to parents and 31 (89%) to them. Follow-up meetings using the Collaborative Pediatric Critical Care Research Network framework are feasible and viewed as beneficial by meeting participants. Future research should evaluate the effects of follow-up meetings on bereaved parents' health outcomes.

Assessment in Multisite Randomized Clinical Trials of Patients with Autistic Disorder: The Autism RUPP Network.

ERIC Educational Resources Information Center

Arnold, L. Eugene; Aman, Michael G.; Martin, Andres; Collier-Crespin, Angie; Vitiello, Benedetto; Tierney, Elaine; Asarnow, Robert; Bell-Bradshaw, Felicia; Freeman, Betty Jo; Gates-Ulanet, Patricia; Klin, Ami; McCracken, James T.; McDougle, Christopher J.; McGough, James J.; Posey, David J.; Scahill, Lawrence; Swiezy, Naomi B.; Ritz, Louise; Volkmar, Fred

2000-01-01

This paper explains how the Autism Research Units on Pediatric Psychopharmacology (RUPP Autism Network) resolved common assessment problems including communication problems compromising use of the patient as informant, broad subject heterogeneity, difficulties in assessing low-end IQs, scarcity of autism-adapted cognitive and neuropsychological…

General practitioners' use of caries-preventive agents in adult patients versus pediatric patients: findings from the dental practice-based research network.

PubMed

Riley, Joseph L; Gordan, Valeria V; Rindal, D Brad; Fellows, Jeffrey L; Williams, O Dale; Ritchie, Lloyd K; Gilbert, Gregg H

2010-06-01

In this study, the authors tested the frequency of dentists' recommendations for and use of caries-preventive agents for children as compared with adults. The authors surveyed 467 general dentists in the Dental Practice-Based Research Network who practice within the United States and treat both pediatric and adult patients. They asked dentists to identify the percentage of their patients for whom they had administered or recommended dental sealants, in-office and at-home fluoride, chlorhexidine rinse and xylitol gum. Dentists were less likely to provide adult patients than pediatric patients with in-office caries-preventive agents. However, the rate at which they recommended at-home preventive regimens for the two groups of patients was similar. Dentists with a conservative approach to caries treatment were the most likely to use and recommend the use of caries-preventive agents at similar rates in adults as in children. In addition, dentists in practices with a greater number of patients who had dental insurance were significantly more likely to provide in-office fluoride or sealants to adult patients than to pediatric patients. General dentists use in-office caries-preventive agents more commonly with their pediatric patients than with their adult patients. General dentists should consider providing additional in-office caries-preventive agents for their adult patients who are at increased risk of experiencing dental caries.

Media, social networking, and pediatric obesity.

PubMed

Vandewater, Elizabeth A; Denis, Laurence M

2011-12-01

The 5 years leading up to 2011 witnessed unprecedented transformations in the technology and media available to American consumers. These changes have led to major paradigmatic shifts in the way people think about media, how they use it, and the role they expect it to play in their lives. This article discusses the new media landscape and summarizes the evidence regarding media influences on pediatric obesity. Various effects on pediatric obesity are discussed and some conclusions and implications are provided, including possibilities and future directions for clinical practice and research. Copyright © 2011. Published by Elsevier Inc.

Noninvasive Brain Stimulation in Pediatric Attention-Deficit Hyperactivity Disorder (ADHD): A Review.

PubMed

Rubio, Belen; Boes, Aaron D; Laganiere, Simon; Rotenberg, Alexander; Jeurissen, Danique; Pascual-Leone, Alvaro

2016-05-01

Attention-deficit hyperactivity disorder (ADHD) is one of the most prevalent neurodevelopmental disorders in the pediatric population. The clinical management of ADHD is currently limited by a lack of reliable diagnostic biomarkers and inadequate therapy for a minority of patients who do not respond to standard pharmacotherapy. There is optimism that noninvasive brain stimulation may help to address these limitations. Transcranial magnetic stimulation and transcranial direct current stimulation are 2 methods of noninvasive brain stimulation that modulate cortical excitability and brain network activity. Transcranial magnetic stimulation can be used diagnostically to probe cortical neurophysiology, whereas daily use of repetitive transcranial magnetic stimulation or transcranial direct current stimulation can induce long-lasting and potentially therapeutic changes in targeted networks. In this review, we highlight research showing the potential diagnostic and therapeutic applications of transcranial magnetic stimulation and transcranial direct current stimulation in pediatric ADHD. We also discuss the safety and ethics of using these tools in the pediatric population. © The Author(s) 2015.

A framework for conducting follow-up meetings with parents after a child's death in the pediatric intensive care unit.

PubMed

Eggly, Susan; Meert, Kathleen L; Berger, John; Zimmerman, Jerry; Anand, Kanwaljeet J S; Newth, Christopher J L; Harrison, Rick; Carcillo, Joseph; Dean, J Michael; Willson, Douglas F; Nicholson, Carol

2011-03-01

To describe a framework to assist pediatric intensive care unit physicians in conducting follow-up meetings with parents after their child's death. Many childhood deaths occur in pediatric intensive care units. Parents of children who die in pediatric intensive care units often desire a follow-up meeting with the physician(s) who cared for their child. Prior research conducted by the Collaborative Pediatric Critical Care Research Network on the experiences and perspectives of bereaved parents and pediatric intensive care unit physicians regarding the desirability, content, and conditions of follow-up meetings. The framework includes suggestions for inviting families to follow-up meetings (i.e., developing an institutional system, invitation timing, and format); preparing for the meeting (i.e., assessing family preferences; determining location, attendees, and discussion topics; reviewing medical and psychosocial history); structure of the meeting (i.e., opening, closing, and developing a meeting agenda); communicating effectively during the meeting; and follow-up for both parents and physicians. This framework is based on the experience and perspectives of bereaved parents and pediatric intensive care unit physicians. Future research should be conducted to determine the extent to which physician-parent follow-up meetings provide a benefit to parents, families, physicians, and other healthcare providers participating in these encounters.

Strategic Planning for Research in Pediatric Critical Care.

PubMed

Tamburro, Robert F; Jenkins, Tammara L; Kochanek, Patrick M

2016-11-01

To summarize the scientific priorities and potential future research directions for pediatric critical care research discussed by a panel of experts at the inaugural Strategic Planning Conference of the Pediatric Trauma and Critical Illness Branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Expert opinion expressed during the Strategic Planning Conference. Not applicable. Chaired by an experienced expert from the field, issues relevant to the conduct of pediatric critical care research were discussed and debated by the invited participants. Common themes and suggested priorities were identified and coalesced. Of the many pathophysiologic conditions discussed, the multiple organ dysfunction syndrome emerged as a topic in need of more study that is most relevant to the field. Additionally, the experts offered that the interrelationship and impact of critical illness on child development and family functioning are important research priorities. Consequently, long-term outcomes research was encouraged. The expert group also suggested that multidisciplinary conferences are needed to help identify key knowledge gaps to advance and direct research in the field. The Pediatric Critical Care and Trauma Scientist Development National K12 Program and the Collaborative Pediatric Critical Care Research Network were recognized as successful and important programs supported by the branch. The development of core data resources including biorepositories with robust phenotypic data using common data elements was also suggested to foster data sharing among investigators and to enhance disease diagnosis and discovery. Multicenter clinical trials and innovative study designs to address understudied and poorly understood conditions were considered important for field advancement. Finally, the growth of the pediatric critical care research workforce was offered as a priority that could be spawned in many ways including by expanded transdisciplinary and multiprofessional collaboration and diversity representation.

Strategic Planning for Research in Pediatric Critical Care

PubMed Central

Tamburro, Robert F.; Jenkins, Tammara L.; Kochanek, Patrick M.

2016-01-01

Objective To summarize the scientific priorities and potential future research directions for pediatric critical care research discussed by a panel of experts at the inaugural Strategic Planning Conference of the Pediatric Trauma and Critical Illness Branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Data Sources Expert opinion expressed during the Strategic Planning Conference. Study Selection Not applicable Data Extraction Chaired by an experienced expert from the field, issues relevant to the conduct of pediatric critical care research were discussed and debated by the invited participants. Data Synthesis Common themes and suggested priorities were identified and coalesced. Conclusions Of the many pathophysiological conditions discussed, the multiple organ dysfunction syndrome emerged as a topic in need of more study that is most relevant to the field. Additionally, the experts offered that the inter-relationship and impact of critical illness on child development and family functioning are important research priorities. Consequently, long-term outcomes research was encouraged. The expert group also suggested that multidisciplinary conferences are needed to help identify key knowledge gaps to advance and direct research in the field. The Pediatric Critical Care and Trauma Scientist Development National K12 Program and the Collaborative Pediatric Critical Care Research Network were recognized as successful and important programs supported by the branch. The development of core data resources including biorepositories with robust phenotypic data using common data elements was also suggested to foster data sharing among investigators and to enhance disease diagnosis and discovery. Multicenter clinical trials and innovative study designs to address understudied and poorly understood conditions were considered important for field advancement. Finally, the growth of the pediatric critical care research workforce was offered as a priority that could be spawned in many ways including by expanded transdisciplinary and multiprofessional collaboration and diversity representation. PMID:27679964

Limited capacity in US pediatric drug trials: qualitative analysis of expert interviews.

PubMed

Wasserman, Richard; Bocian, Alison; Harris, Donna; Slora, Eric

2011-04-01

The recently renewed Best Pharmaceuticals for Children and Pediatric Research Equity Acts (BPCA/PREA) have continued industry incentives and opportunities for pediatric drug trials (PDTs). However, there is no current assessment of the capacity to perform PDTs. The aim of this study was to deepen understanding of the capacity for US PDTs by assessing PDT infrastructure, present barriers to PDTs, and potential approaches and solutions to identified issues. Pediatric clinical research experts participated in semi-structured interviews on current US pediatric research capacity (February-July 2007). An initial informant list was developed using purposive sampling, and supplemented and refined to generate a group of respondents to explore emerging themes. Each phone interview included a physician researcher and two health researchers who took notes and recorded the calls. Health researchers produced detailed summaries, which were verified by the physician researcher and informants. We then undertook qualitative analysis of the summaries, employing multiple coding, with the two health researchers and the physician researcher independently coding each summary for themes and subthemes. Coding variations were resolved by physician researcher/health researcher discussion and consensus achieved on themes and subthemes. The 33 informants' primary or secondary roles included academia (n = 21), federal official (5), industry medical officer (8), pediatric research network leader (10), pediatric specialist leader (8), pediatric clinical pharmacologist (5), and practitioner/research site director (9). While most experts noted an increase in PDTs since the initial passage of BPCA/PREA, a dominant theme of insufficient US PDT capacity emerged. Subthemes included (i) lack of systems for finding, incentivizing, and/or maintaining trial sites; (ii) complexity/demands of conducting PDTs in clinical settings; (iii) inadequate numbers of qualified pediatric pharmacologists and clinician investigators trained in FDA Good Clinical Practice; and (iv) poor PDT protocol design resulting in operational and enrollment difficulties in the pediatric population. Suggested potential solutions for insufficient PDT capacity included (i) consensus-building among stakeholders to create PDT systems; (ii) initiatives to train more pediatric pharmacologists and educate clinicians in Good Clinical Practice; (iii) advocacy for PDT protocols designed by individuals sensitive to pediatric issues; and (iv) physician and public education on the importance of PDTs. Insufficient US PDT capacity may hinder the development of new drugs for children and limit studies on the safety and efficacy of drugs presently used to treat pediatric conditions. Further public policy initiatives may be needed to achieve the full promise of BPCA/PREA.

Specialty Networking in Pediatric Surgery

PubMed Central

Coran, Arnold G.; Blackman, Phyllis M.; Sikina, Cynthia; Harmon, Carroll M.; Lelli, Joseph L.; Geiger, James D.; Hirschl, Ronald B.; Teitelbaum, Daniel H.; Polley, Theodore Z.; Golladay, Eustace S.; Austin, Edward; Adelman, Susan H.

1999-01-01

Objective To review retrospectively a 4-year experience with pediatric surgical networking at a major academic medical center in the Midwest. Background The growth of managed care in the United States during the past decade has had a major impact on the practice of medicine in general, but especially on academic medicine. In some academic medical centers, the loss of market share has not only affected clinical activity but has also compromised the educational and research missions of these institutions. Methods At the authors’ institution, a networking strategy in pediatric surgery was established in 1993 and implemented on July 1, 1994. In 1994, one new satellite practice was established; over the next 4 years, four additional practices were added, including one in another state. To assess the impact on financial status, clinical activity, education, and academic productivity, the following parameters were analyzed: gross and net revenue, surgical cases, clinic visits, ranking of the pediatric surgery residency, publications, grant support, and development and endowment funds. Results Gross and net revenue increased from $3,273,000 and $302,000 in 1993 to $10,087,000 and $2,826,000, respectively, in 1998. Surgical cases and clinic visits increased from 1240 and 3751 in 1993 to 5872 and 11,604, respectively, in 1998. At the medical center’s children’s hospital, surgical cases and clinic visits increased from 1240 and 3751 to 2592 and 4729 during the same time period. During this 4-year period, the faculty increased from 4 to 11. Since 1997, the National Resident Matching Program has provided data on how pediatric surgery residency candidates ranked a training program. In 1997, this program received the second-most one to five rankings; in 1998, it tied for first. This exceeds the faculty’s perception of previous years’ rankings. Publications increased from 26 in 1993 to a peak number of 62 in 1996; in 1997 and 1998 the publications were 48 and 37, respectively. External grant support increased from $139,882 in 1993 to a total of $6,109,971 in 1998. Development and endowment funds increased from $103,559 in 1993 to $2,702,2777 in 1998. Conclusions Pediatric surgical networking at the authors’ institution has had a markedly positive impact on finances, clinical activity, education, and academic productivity during a 4-year period. The residency training program appears to have improved in popularity among candidates, probably because of the increased referral of complex cases to the medical center from the various networking satellites. External grant support and basic laboratory research significantly increased, most likely because of the greater number of faculty with protected time for research recruited. Development and endowment funds dramatically grew because of the excellent fiscal health of the pediatric surgical program. This experience may serve as a model for other academic surgical specialties. PMID:10493480

Using Information Technology and Social Networking for Recruitment of Research Participants: Experience From an Exploratory Study of Pediatric Klinefelter Syndrome

PubMed Central

Smaldone, Arlene; Fennoy, Ilene; Reame, Nancy; Grey, Margaret

2013-01-01

Background Recruiting pediatric samples for research may be challenging due to parental mistrust of the research process, privacy concerns, and family time constraints. Recruitment of children with chronic and genetic conditions may further complicate the enrollment process. Objective In this paper, we describe the methodological challenges of recruiting children for research and provide an exemplar of how the use of information technology (IT) strategies with social networking may improve access to difficult-to-reach pediatric research participants. Methods We conducted a cross-sectional descriptive study of boys between the ages of 8 and 18 years with Klinefelter syndrome. This study presented unique challenges for recruitment of pediatric participants. These challenges are illustrated by the report of recruitment activities developed for the study. We reviewed the literature to explore the issues of recruiting children for research using conventional and IT approaches. Success rates of conventional recruitment approaches, such as brochures, flyers in medical offices, and physician referrals, are compared with IT-based outreach. The IT approaches included teleconferencing via a Klinefelter syndrome support group, services of a Web-based commercial recruitment-matching company, and the development of a university-affiliated research recruitment website with the use of paid advertising on a social networking website (Facebook). Results Over a 3-month period, dissemination of over 150 recruitment brochures and flyers placed in a large urban hospital and hospital-affiliated clinical offices, with 850 letters to physicians and patients were not successful. Within the same period, face-to-face recruitment in the clinical setting yielded 4 (9%) participants. Using Web-based and social networking approaches, 39 (91%) agreed to participate in the study. With these approaches, 5 (12%) were recruited from the national Klinefelter syndrome advocacy group, 8 (19%) from local and teleconference support groups, 10 (23%) from a Web-based research recruitment program, and 16 (37%) from the university-affiliated recruitment website. For the initial 6 months, the university website was viewed approximately 2 to 3 times per day on average. An advertisement placed on a social networking site for 1 week increased website viewing to approximately 63 visits per day. Out of 112 families approached using all of these methods, 43 (38%) agreed to participate. Families who declined cited either travel distance to the study site (15, 22%) or unwillingness to disclose the Klinefelter syndrome diagnosis to their sons (54, 78%) as the reasons for nonparticipation. Conclusions Use of Web-based technologies enhances the recruitment of difficult-to-reach populations. Of the many approaches employed in this study, the university-affiliated recruitment website supported by a Facebook advertisement appeared to be the most successful. Research grant budgets should include expenses for website registration and maintenance fees as well as online advertisements on social networking websites. Tracking of recruitment referral sources may be helpful in planning future recruitment campaigns. PMID:23512442

Using information technology and social networking for recruitment of research participants: experience from an exploratory study of pediatric Klinefelter syndrome.

PubMed

Close, Sharron; Smaldone, Arlene; Fennoy, Ilene; Reame, Nancy; Grey, Margaret

2013-03-19

Recruiting pediatric samples for research may be challenging due to parental mistrust of the research process, privacy concerns, and family time constraints. Recruitment of children with chronic and genetic conditions may further complicate the enrollment process. In this paper, we describe the methodological challenges of recruiting children for research and provide an exemplar of how the use of information technology (IT) strategies with social networking may improve access to difficult-to-reach pediatric research participants. We conducted a cross-sectional descriptive study of boys between the ages of 8 and 18 years with Klinefelter syndrome. This study presented unique challenges for recruitment of pediatric participants. These challenges are illustrated by the report of recruitment activities developed for the study. We reviewed the literature to explore the issues of recruiting children for research using conventional and IT approaches. Success rates of conventional recruitment approaches, such as brochures, flyers in medical offices, and physician referrals, are compared with IT-based outreach. The IT approaches included teleconferencing via a Klinefelter syndrome support group, services of a Web-based commercial recruitment-matching company, and the development of a university-affiliated research recruitment website with the use of paid advertising on a social networking website (Facebook). Over a 3-month period, dissemination of over 150 recruitment brochures and flyers placed in a large urban hospital and hospital-affiliated clinical offices, with 850 letters to physicians and patients were not successful. Within the same period, face-to-face recruitment in the clinical setting yielded 4 (9%) participants. Using Web-based and social networking approaches, 39 (91%) agreed to participate in the study. With these approaches, 5 (12%) were recruited from the national Klinefelter syndrome advocacy group, 8 (19%) from local and teleconference support groups, 10 (23%) from a Web-based research recruitment program, and 16 (37%) from the university-affiliated recruitment website. For the initial 6 months, the university website was viewed approximately 2 to 3 times per day on average. An advertisement placed on a social networking site for 1 week increased website viewing to approximately 63 visits per day. Out of 112 families approached using all of these methods, 43 (38%) agreed to participate. Families who declined cited either travel distance to the study site (15, 22%) or unwillingness to disclose the Klinefelter syndrome diagnosis to their sons (54, 78%) as the reasons for nonparticipation. Use of Web-based technologies enhances the recruitment of difficult-to-reach populations. Of the many approaches employed in this study, the university-affiliated recruitment website supported by a Facebook advertisement appeared to be the most successful. Research grant budgets should include expenses for website registration and maintenance fees as well as online advertisements on social networking websites. Tracking of recruitment referral sources may be helpful in planning future recruitment campaigns.

Federating Clinical Data from Six Pediatric Hospitals: Process and Initial Results from the PHIS+ Consortium

PubMed Central

Narus, Scott P.; Srivastava, Rajendu; Gouripeddi, Ramkiran; Livne, Oren E.; Mo, Peter; Bickel, Jonathan P.; de Regt, David; Hales, Joseph W.; Kirkendall, Eric; Stepanek, Richard L.; Toth, Jamie; Keren, Ron

2011-01-01

Integrating clinical data with administrative data across disparate electronic medical record systems will help improve the internal and external validity of comparative effectiveness research. The Pediatric Health Information System (PHIS) currently collects administrative information from 43 pediatric hospital members of the Child Health Corporation of America (CHCA). Members of the Pediatric Research in Inpatient Settings (PRIS) network have partnered with CHCA and the University of Utah Biomedical Informatics Core to create an enhanced version of PHIS that includes clinical data. A specialized version of a data federation architecture from the University of Utah (“FURTHeR”) is being developed to integrate the clinical data from the member hospitals into a common repository (“PHIS+”) that is joined with the existing administrative data. We report here on our process for the first phase of federating lab data, and present initial results. PMID:22195159

National Pediatric Research Network Act of 2012

THOMAS, 112th Congress

Sen. Brown, Sherrod [D-OH

2012-07-31

Senate - 07/31/2012 Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions) Tracker: This bill has the status IntroducedHere are the steps for Status of Legislation:

National Pediatric Research Network Act of 2013

THOMAS, 113th Congress

Sen. Brown, Sherrod [D-OH

2013-02-28

Senate - 02/28/2013 Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions) Tracker: This bill has the status IntroducedHere are the steps for Status of Legislation:

Training pediatric clinical pharmacology and therapeutics specialists of the future: the needs, the reality, and opportunities for international networking.

PubMed

Gazarian, Madlen

2009-01-01

In recent years there has been a rapid and marked increase in global recognition of the need for better medicines for children, with various initiatives being implemented at global and regional levels. These exciting developments are matched by recognition of the need to build greater capacity in the field of pediatric clinical pharmacology and therapeutics to help deliver on the promise of better medicines for children. A range of pediatric medicines researchers, educators, clinical therapeutics practitioners, and experts in drug evaluation, regulation, and broader medicines policy are needed on a larger scale, in both developed and developing world settings. The current and likely future training needs to meet these diverse challenges, the current realities of trying to meet such needs, and the opportunities for international networking to help meet future training needs are discussed from a global perspective.

A framework for conducting follow-up meetings with parents after a child's death in the pediatric intensive care unit*

PubMed Central

Eggly, Susan; Berger, John; Zimmerman, Jerry; Anand, Kanwaljeet J. S.; Newth, Christopher J. L.; Harrison, Rick; Carcillo, Joseph; Dean, J. Michael; Willson, Douglas F.; Nicholson, Carol

2012-01-01

Objective To describe a framework to assist pediatric intensive care unit physicians in conducting follow-up meetings with parents after their child's death. Many childhood deaths occur in pediatric intensive care units. Parents of children who die in pediatric intensive care units often desire a follow-up meeting with the physician(s) who cared for their child. Data Sources Prior research conducted by the Collaborative Pediatric Critical Care Research Network on the experiences and perspectives of bereaved parents and pediatric intensive care unit physicians regarding the desirability, content, and conditions of follow-up meetings. Results The framework includes suggestions for inviting families to follow-up meetings (i.e., developing an institutional system, invitation timing, and format); preparing for the meeting (i.e., assessing family preferences; determining location, attendees, and discussion topics; reviewing medical and psychosocial history); structure of the meeting (i.e., opening, closing, and developing a meeting agenda); communicating effectively during the meeting; and follow-up for both parents and physicians. Conclusion This framework is based on the experience and perspectives of bereaved parents and pediatric intensive care unit physicians. Future research should be conducted to determine the extent to which physician-parent follow-up meetings provide a benefit to parents, families, physicians, and other healthcare providers participating in these encounters. PMID:20625339

A framework for measurement and harmonization of pediatric multiple sclerosis etiologic research studies: The Pediatric MS Tool-Kit.

PubMed

Magalhaes, Sandra; Banwell, Brenda; Bar-Or, Amit; Fortier, Isabel; Hanwell, Heather E; Lim, Ming; Matt, Georg E; Neuteboom, Rinze F; O'Riordan, David L; Schneider, Paul K; Pugliatti, Maura; Shatenstein, Bryna; Tansey, Catherine M; Wassmer, Evangeline; Wolfson, Christina

2018-06-01

While studying the etiology of multiple sclerosis (MS) in children has several methodological advantages over studying etiology in adults, studies are limited by small sample sizes. Using a rigorous methodological process, we developed the Pediatric MS Tool-Kit, a measurement framework that includes a minimal set of core variables to assess etiological risk factors. We solicited input from the International Pediatric MS Study Group to select three risk factors: environmental tobacco smoke (ETS) exposure, sun exposure, and vitamin D intake. To develop the Tool-Kit, we used a Delphi study involving a working group of epidemiologists, neurologists, and content experts from North America and Europe. The Tool-Kit includes six core variables to measure ETS, six to measure sun exposure, and six to measure vitamin D intake. The Tool-Kit can be accessed online ( www.maelstrom-research.org/mica/network/tool-kit ). The goals of the Tool-Kit are to enhance exposure measurement in newly designed pediatric MS studies and comparability of results across studies, and in the longer term to facilitate harmonization of studies, a methodological approach that can be used to circumvent issues of small sample sizes. We believe the Tool-Kit will prove to be a valuable resource to guide pediatric MS researchers in developing study-specific questionnaire.

The Pediatric Emergency Care Applied Research Network Registry: A Multicenter Electronic Health Record Registry of Pediatric Emergency Care.

PubMed

Deakyne Davies, Sara J; Grundmeier, Robert W; Campos, Diego A; Hayes, Katie L; Bell, Jamie; Alessandrini, Evaline A; Bajaj, Lalit; Chamberlain, James M; Gorelick, Marc H; Enriquez, Rene; Casper, T Charles; Scheid, Beth; Kittick, Marlena; Dean, J Michael; Alpern, Elizabeth R

2018-04-01

 Electronic health record (EHR)-based registries allow for robust data to be derived directly from the patient clinical record and can provide important information about processes of care delivery and patient health outcomes.  A data dictionary, and subsequent data model, were developed describing EHR data sources to include all processes of care within the emergency department (ED). ED visit data were deidentified and XML files were created and submitted to a central data coordinating center for inclusion in the registry. Automated data quality control occurred prior to submission through an application created for this project. Data quality reports were created for manual data quality review.  The Pediatric Emergency Care Applied Research Network (PECARN) Registry, representing four hospital systems and seven EDs, demonstrates that ED data from disparate health systems and EHR vendors can be harmonized for use in a single registry with a common data model. The current PECARN Registry represents data from 2,019,461 pediatric ED visits, 894,503 distinct patients, more than 12.5 million narrative reports, and 12,469,754 laboratory tests and continues to accrue data monthly.  The Registry is a robust harmonized clinical registry that includes data from diverse patients, sites, and EHR vendors derived via data extraction, deidentification, and secure submission to a central data coordinating center. The data provided may be used for benchmarking, clinical quality improvement, and comparative effectiveness research. Schattauer.

NCI, NHLBI/PBMTC First International Consensus Conference on Late Effects after Pediatric Hematopoietic Cell Transplantation: The Need for Pediatric Specific Long Term Follow-up Guidelines

PubMed Central

Pulsipher, Michael A.; Skinner, Roderick; McDonald, George B.; Hingorani, Sangeeta; Armenian, Saro H.; Cooke, Kenneth R.; Gracia, Clarisa; Petryk, Anna; Bhatia, Smita; Bunin, Nancy; Nieder, Michael L.; Dvorak, Christopher C.; Sung, Lillian; Sanders, Jean E.; Kurtzberg, Joanne; Baker, K. Scott

2012-01-01

Existing standards for screening and management of late effects occurring in children who have undergone hematopoietic cell transplantation (HCT) include recommendations from pediatric cancer networks and consensus guidelines from adult-oriented transplantation societies applicable to all recipients of HCT. While these approaches have significant merit, they are not pediatric-HCT focused and they do not address post-HCT challenges faced by children with complex non-malignant disorders. In this article we discuss the strengths and weaknesses of current published recommendations and conclude that pediatric-specific guidelines for post-HCT screening and management would be beneficial to the long-term health of these patients and would promote late-effects research in this field. Our panel of late effects experts also provides recommendations for follow up and therapy of selected post-HCT organ and endocrine complications in pediatric patients. PMID:22248713

Innovating to enhance clinical data management using non-commercial and open source solutions across a multi-center network supporting inpatient pediatric care and research in Kenya

PubMed Central

Tuti, Timothy; Bitok, Michael; Paton, Chris; Makone, Boniface; Malla, Lucas; Muinga, Naomi; Gathara, David; English, Mike

2016-01-01

Objective To share approaches and innovations adopted to deliver a relatively inexpensive clinical data management (CDM) framework within a low-income setting that aims to deliver quality pediatric data useful for supporting research, strengthening the information culture and informing improvement efforts in local clinical practice. Materials and methods The authors implemented a CDM framework to support a Clinical Information Network (CIN) using Research Electronic Data Capture (REDCap), a noncommercial software solution designed for rapid development and deployment of electronic data capture tools. It was used for collection of standardized data from case records of multiple hospitals’ pediatric wards. R, an open-source statistical language, was used for data quality enhancement, analysis, and report generation for the hospitals. Results In the first year of CIN, the authors have developed innovative solutions to support the implementation of a secure, rapid pediatric data collection system spanning 14 hospital sites with stringent data quality checks. Data have been collated on over 37 000 admission episodes, with considerable improvement in clinical documentation of admissions observed. Using meta-programming techniques in R, coupled with branching logic, randomization, data lookup, and Application Programming Interface (API) features offered by REDCap, CDM tasks were configured and automated to ensure quality data was delivered for clinical improvement and research use. Conclusion A low-cost clinically focused but geographically dispersed quality CDM (Clinical Data Management) in a long-term, multi-site, and real world context can be achieved and sustained and challenges can be overcome through thoughtful design and implementation of open-source tools for handling data and supporting research. PMID:26063746

Innovating to enhance clinical data management using non-commercial and open source solutions across a multi-center network supporting inpatient pediatric care and research in Kenya.

PubMed

Tuti, Timothy; Bitok, Michael; Paton, Chris; Makone, Boniface; Malla, Lucas; Muinga, Naomi; Gathara, David; English, Mike

2016-01-01

To share approaches and innovations adopted to deliver a relatively inexpensive clinical data management (CDM) framework within a low-income setting that aims to deliver quality pediatric data useful for supporting research, strengthening the information culture and informing improvement efforts in local clinical practice. The authors implemented a CDM framework to support a Clinical Information Network (CIN) using Research Electronic Data Capture (REDCap), a noncommercial software solution designed for rapid development and deployment of electronic data capture tools. It was used for collection of standardized data from case records of multiple hospitals' pediatric wards. R, an open-source statistical language, was used for data quality enhancement, analysis, and report generation for the hospitals. In the first year of CIN, the authors have developed innovative solutions to support the implementation of a secure, rapid pediatric data collection system spanning 14 hospital sites with stringent data quality checks. Data have been collated on over 37 000 admission episodes, with considerable improvement in clinical documentation of admissions observed. Using meta-programming techniques in R, coupled with branching logic, randomization, data lookup, and Application Programming Interface (API) features offered by REDCap, CDM tasks were configured and automated to ensure quality data was delivered for clinical improvement and research use. A low-cost clinically focused but geographically dispersed quality CDM (Clinical Data Management) in a long-term, multi-site, and real world context can be achieved and sustained and challenges can be overcome through thoughtful design and implementation of open-source tools for handling data and supporting research. © The Author 2015. Published by Oxford University Press on behalf of the American Medical Informatics Association.

Neuroblastoma, a Paradigm for Big Data Science in Pediatric Oncology

PubMed Central

Salazar, Brittany M.; Balczewski, Emily A.; Ung, Choong Yong; Zhu, Shizhen

2016-01-01

Pediatric cancers rarely exhibit recurrent mutational events when compared to most adult cancers. This poses a challenge in understanding how cancers initiate, progress, and metastasize in early childhood. Also, due to limited detected driver mutations, it is difficult to benchmark key genes for drug development. In this review, we use neuroblastoma, a pediatric solid tumor of neural crest origin, as a paradigm for exploring “big data” applications in pediatric oncology. Computational strategies derived from big data science–network- and machine learning-based modeling and drug repositioning—hold the promise of shedding new light on the molecular mechanisms driving neuroblastoma pathogenesis and identifying potential therapeutics to combat this devastating disease. These strategies integrate robust data input, from genomic and transcriptomic studies, clinical data, and in vivo and in vitro experimental models specific to neuroblastoma and other types of cancers that closely mimic its biological characteristics. We discuss contexts in which “big data” and computational approaches, especially network-based modeling, may advance neuroblastoma research, describe currently available data and resources, and propose future models of strategic data collection and analyses for neuroblastoma and other related diseases. PMID:28035989

Neuroblastoma, a Paradigm for Big Data Science in Pediatric Oncology.

PubMed

Salazar, Brittany M; Balczewski, Emily A; Ung, Choong Yong; Zhu, Shizhen

2016-12-27

Pediatric cancers rarely exhibit recurrent mutational events when compared to most adult cancers. This poses a challenge in understanding how cancers initiate, progress, and metastasize in early childhood. Also, due to limited detected driver mutations, it is difficult to benchmark key genes for drug development. In this review, we use neuroblastoma, a pediatric solid tumor of neural crest origin, as a paradigm for exploring "big data" applications in pediatric oncology. Computational strategies derived from big data science-network- and machine learning-based modeling and drug repositioning-hold the promise of shedding new light on the molecular mechanisms driving neuroblastoma pathogenesis and identifying potential therapeutics to combat this devastating disease. These strategies integrate robust data input, from genomic and transcriptomic studies, clinical data, and in vivo and in vitro experimental models specific to neuroblastoma and other types of cancers that closely mimic its biological characteristics. We discuss contexts in which "big data" and computational approaches, especially network-based modeling, may advance neuroblastoma research, describe currently available data and resources, and propose future models of strategic data collection and analyses for neuroblastoma and other related diseases.

Training highly qualified health research personnel: The Pain in Child Health consortium

PubMed Central

von Baeyer, Carl L; Stevens, Bonnie J; Chambers, Christine T; Craig, Kenneth D; Finley, G Allen; Grunau, Ruth E; Johnston, C Celeste; Riddell, Rebecca Pillai; Stinson, Jennifer N; Dol, Justine; Campbell-Yeo, Marsha; McGrath, Patrick J

2014-01-01

BACKGROUND AND OBJECTIVES: Pain in Child Health (PICH) is a transdisciplinary, international research training consortium. PICH has been funded since 2002 as a Strategic Training Initiative in Health Research of the Canadian Institutes of Health Research, with contributions from other funding partners and the founding participation of five Canadian universities. The goal of PICH has been to create a community of scholars in pediatric pain to improve child health outcomes. METHODS: Quantitative analyses enumerated PICH faculty, trainees, training activities and scientific outputs. Interviews with PICH stakeholders were analyzed using qualitative methods capturing perceptions of the program’s strengths, limitations, and opportunities for development and sustainability. RESULTS: PICH has supported 218 trainee members from 2002 through 2013, from 14 countries and more than 16 disciplines. The faculty at the end of 2013 comprised nine co-principal investigators, 14 Canadian coinvestigators, and 28 Canadian and international collaborators. Trainee members published 697 peer-reviewed journal articles on pediatric pain through 2013, among other research dissemination activities including conference presentations and webinars. Networks have been established between new and established researchers across Canada and in 13 other countries. Perceptions from stakeholders commended PICH for its positive impact on the development of pediatric pain researchers. Stakeholders emphasized skills and abilities gained through PICH, the perceived impact of PICH training on this research field, and considerations for future training in developing researchers in pediatric pain. CONCLUSIONS: PICH has been successfully developing highly qualified health research personnel within a Canadian and international community of pediatric pain scholarship. PMID:25299474

National Pediatric Research Network Act of 2012

THOMAS, 112th Congress

Rep. McMorris Rodgers, Cathy [R-WA-5

2012-07-19

Senate - 09/20/2012 Received in the Senate and Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions) Tracker: This bill has the status Passed HouseHere are the steps for Status of Legislation:

National Pediatric Research Network Act of 2013

THOMAS, 113th Congress

Rep. Capps, Lois [D-CA-24

2013-01-14

Senate - 02/07/2013 Received in the Senate and Read twice and referred to the Committee on Health, Education, Labor, and Pensions. (All Actions) Tracker: This bill has the status Passed HouseHere are the steps for Status of Legislation:

Using goal-directed design to create a novel system for improving chronic illness care.

PubMed

Fore, David; Goldenhar, Linda M; Margolis, Peter A; Seid, Michael

2013-10-29

A learning health system enables patients, clinicians, and researchers to work together to choose care based on the best evidence, drive discovery as a natural outgrowth of patient care, and ensure innovation, quality, safety, and value in health care; all in a more real-time fashion. Our paper describes how goal-directed design (GDD) methods were employed to understand the context and goals of potential participants in such a system as part of a design process to translate the concept of a learning health system into a prototype collaborative chronic care network (C3N), specifically for pediatric inflammatory bowel disease. Thirty-six one-on-one in-depth interviews and observations were conducted with patients (10/36, 28%), caregivers (10/36, 28%), physicians/researchers (10/36, 28%), and nurses (6/36, 17%) from a pediatric gastroenterology center participating in the ImproveCareNow network. GDD methods were used to determine the context and goals of participants. These same methods were used in conjunction with idealized design process techniques to help determine characteristics of a learning health system for this pediatric health care ecology. Research was conducted in a clinic and, in the case of some patients and caregivers, at home. Thematic analysis revealed 3 parent-child dyad personas (ie, representations of interviewees' behavior patterns, goals, skills, attitudes, and contextual information) that represented adaptation to a chronic illness over time. These were used as part of a design process to generate scenarios (potential interactions between personas and the learning health system under design) from which system requirements were derived. These scenarios in turn helped guide generation, prioritization, design, measurement, and implementation of approximately 100 prototype interventions consistent with the aim of C3N becoming a learning health network. GDD methods help ensure human goals and contexts inform the design of a network of health care interventions which reflect the shape and purpose of a C3N in pediatric chronic illness care. Developing online and in-person interventions according to well-documented context and motivations of participants increases the likelihood that a C3N will enable all participants to act in ways that achieve their goals with grace and dignity. GDD methods complemented quality-improvement methods to generate prototypes consistent with clinical and research aims, as well as the goals of patient disease management.

Evaluating computer capabilities in a primary care practice-based research network.

PubMed

Ariza, Adolfo J; Binns, Helen J; Christoffel, Katherine Kaufer

2004-01-01

We wanted to assess computer capabilities in a primary care practice-based research network and to understand how receptive the practices were to new ideas for automation of practice activities and research. This study was conducted among members of the Pediatric Practice Research Group (PPRG). A survey to assess computer capabilities was developed to explore hardware types, software programs, Internet connectivity and data transmission; views on privacy and security; and receptivity to future electronic data collection approaches. Of the 40 PPRG practices participating in the study during the autumn of 2001, all used IBM-compatible systems. Of these, 45% used stand-alone desktops, 40% had networked desktops, and approximately 15% used laptops and minicomputers. A variety of software packages were used, with most practices (82%) having software for some aspect of patient care documentation, patient accounting (90%), business support (60%), and management reports and analysis (97%). The main obstacles to expanding use of computers in patient care were insufficient staff training (63%) and privacy concerns (82%). If provided with training and support, most practices indicated they were willing to consider an array of electronic data collection options for practice-based research activities. There is wide variability in hardware and software use in the pediatric practice setting. Implementing electronic data collection in the PPRG would require a substantial start-up effort and ongoing training and support at the practice site.

Altered structural brain changes and neurocognitive performance in pediatric HIV.

PubMed

Yadav, Santosh K; Gupta, Rakesh K; Garg, Ravindra K; Venkatesh, Vimala; Gupta, Pradeep K; Singh, Alok K; Hashem, Sheema; Al-Sulaiti, Asma; Kaura, Deepak; Wang, Ena; Marincola, Francesco M; Haris, Mohammad

2017-01-01

Pediatric HIV patients often suffer with neurodevelopmental delay and subsequently cognitive impairment. While tissue injury in cortical and subcortical regions in the brain of adult HIV patients has been well reported there is sparse knowledge about these changes in perinatally HIV infected pediatric patients. We analyzed cortical thickness, subcortical volume, structural connectivity, and neurocognitive functions in pediatric HIV patients and compared with those of pediatric healthy controls. With informed consent, 34 perinatally infected pediatric HIV patients and 32 age and gender matched pediatric healthy controls underwent neurocognitive assessment and brain magnetic resonance imaging (MRI) on a 3 T clinical scanner. Altered cortical thickness, subcortical volumes, and abnormal neuropsychological test scores were observed in pediatric HIV patients. The structural network connectivity analysis depicted lower connection strengths, lower clustering coefficients, and higher path length in pediatric HIV patients than healthy controls. The network betweenness and network hubs in cortico-limbic regions were distorted in pediatric HIV patients. The findings suggest that altered cortical and subcortical structures and regional brain connectivity in pediatric HIV patients may contribute to deficits in their neurocognitive functions. Further, longitudinal studies are required for better understanding of the effect of HIV pathogenesis on brain structural changes throughout the brain development process under standard ART treatment.

Pediatric allergy and immunology in Italy.

PubMed

Tozzi, Alberto E; Armenio, Lucio; Bernardini, Roberto; Boner, Attilio; Calvani, Mauro; Cardinale, Fabio; Cavagni, Giovanni; Dondi, Arianna; Duse, Marzia; Fiocchi, Alessandro; Marseglia, Gian L; del Giudice, Michele Miraglia; Muraro, Antonella; Pajno, Giovanni B; Paravati, Francesco; Peroni, Diego; Tripodi, Salvatore; Ugazio, Alberto G; Indinnimeo, Luciana

2011-05-01

In Italy, according to the International Study on Asthma and Allergies in Childhood study, the prevalence of current asthma, allergic rhinoconjunctivitis, and atopic eczema in 2006 was 7.9%, 6.5%, and 10.1% among children aged 6-7 and 8.4%, 15.5%, and 7.75% among children aged 13-14 yr. University education in this field is provided by the Postgraduate Schools of Pediatrics and those of Allergology and Clinical Immunology, as well as several annual Master courses. The Italian Society of Pediatric Allergology and Immunology (SIAIP) was founded in 1996 and counts about 1000 members. SIAIP promotes evidence-based management of allergic children and disseminates information to patients and their families through a quite innovative website and the National Journal 'Rivista Italiana di Allergologia Pediatrica'. In the last decade, four major regional, inter-regional, and national web-based networks have been created to link pediatric allergy centers and to share their clinical protocols and epidemiologic data. In addition, National Registers of Primary Immune-deficiencies and on Pediatric HIV link all clinical excellence centers. Research projects in the field of pediatric allergy and immunology are founded by the Italian Ministry of Education, University and Research (MIUR) and by the National Research Council (CNR), but the overall investments in this research area are quite low. Only a handful Italian excellence centers participate in European Projects on Pediatric Allergy and Immunology within the 7th Framework Program. The European Academy of Allergy and Clinical Immunology currently hosts two Italians in its Executive Committee (EC) and one in the EC of the Pediatric Section; moreover, major European Academy of Allergy and Clinical Immunology meetings and courses in the area of pediatrics (e.g., PAAM, Venice, 2009) have been held in Italy in the last 3 yr. Italian hallmarks in the management of allergic diseases in childhood are a quite alive and spread interest in Molecular Allergology and a remarkable predominance of sublingual (SLIT) compared to the subcutaneous (SCIT) immunotherapy. © 2011 John Wiley & Sons A/S.

The child and adolescent psychiatry trials network (CAPTN): infrastructure development and lessons learned

PubMed Central

Shapiro, Mark; Silva, Susan G; Compton, Scott; Chrisman, Allan; DeVeaugh-Geiss, Joseph; Breland-Noble, Alfiee; Kondo, Douglas; Kirchner, Jerry; March, John S

2009-01-01

Background In 2003, the National Institute of Mental Health funded the Child and Adolescent Psychiatry Trials Network (CAPTN) under the Advanced Center for Services and Intervention Research (ACSIR) mechanism. At the time, CAPTN was believed to be both a highly innovative undertaking and a highly speculative one. One reviewer even suggested that CAPTN was "unlikely to succeed, but would be a valuable learning experience for the field." Objective To describe valuable lessons learned in building a clinical research network in pediatric psychiatry, including innovations intended to decrease barriers to research participation. Methods The CAPTN Team has completed construction of the CAPTN network infrastructure, conducted a large, multi-center psychometric study of a novel adverse event reporting tool, and initiated a large antidepressant safety registry and linked pharmacogenomic study focused on severe adverse events. Specific challenges overcome included establishing structures for network organization and governance; recruiting over 150 active CAPTN participants and 15 child psychiatry training programs; developing and implementing procedures for site contracts, regulatory compliance, indemnification and malpractice coverage, human subjects protection training and IRB approval; and constructing an innovative electronic casa report form (eCRF) running on a web-based electronic data capture system; and, finally, establishing procedures for audit trail oversight requirements put forward by, among others, the Food and Drug Administration (FDA). Conclusion Given stable funding for network construction and maintenance, our experience demonstrates that judicious use of web-based technologies for profiling investigators, investigator training, and capturing clinical trials data, when coupled to innovative approaches to network governance, data management and site management, can reduce the costs and burden and improve the feasibility of incorporating clinical research into routine clinical practice. Having successfully achieved its initial aim of constructing a network infrastructure, CAPTN is now a capable platform for large safety registries, pharmacogenetic studies, and randomized practical clinical trials in pediatric psychiatry. PMID:19320979

Rising utilization of inpatient pediatric asthma pathways.

PubMed

Kaiser, Sunitha V; Rodean, Jonathan; Bekmezian, Arpi; Hall, Matt; Shah, Samir S; Mahant, Sanjay; Parikh, Kavita; Morse, Rustin; Puls, Henry; Cabana, Michael D

2018-02-01

Clinical pathways are detailed care plans that operationalize evidence-based guidelines into an accessible format for health providers. Their goal is to link evidence to practice to optimize patient outcomes and delivery efficiency. It is unknown to what extent inpatient pediatric asthma pathways are being utilized nationally. (1) Describe inpatient pediatric asthma pathway design and implementation across a large hospital network. (2) Compare characteristics of hospitals with and without pathways. We conducted a descriptive, cross-sectional, survey study of hospitals in the Pediatric Research in Inpatient Settings Network (75% children's hospitals, 25% community hospitals). Our survey determined if each hospital used a pathway and pathway characteristics (e.g. pathway elements, implementation methods). Hospitals with and without pathways were compared using Chi-square tests (categorical variables) and Student's t-tests (continuous variables). Surveys were distributed to 3-5 potential participants from each hospital and 302 (74%) participants responded, representing 86% (106/123) of surveyed hospitals. From 2005-2015, the proportion of hospitals utilizing inpatient asthma pathways increased from 27% to 86%. We found variation in pathway elements, implementation strategies, electronic medical record integration, and compliance monitoring across hospitals. Hospitals with pathways had larger inpatient pediatric programs [mean 12.1 versus 6.1 full-time equivalents, p = 0.04] and were more commonly free-standing children's hospitals (52% versus 23%, p = 0.05). From 2005-2015, there was a dramatic rise in implementation of inpatient pediatric asthma pathways. We found variation in many aspects of pathway design and implementation. Future studies should determine optimal implementation strategies to better support hospital-level efforts in improving pediatric asthma care and outcomes.

RNA transcriptional biosignature analysis for identifying febrile infants with serious bacterial infections in the emergency department: a feasibility study.

PubMed

Mahajan, Prashant; Kuppermann, Nathan; Suarez, Nicolas; Mejias, Asuncion; Casper, Charlie; Dean, J Michael; Ramilo, Octavio

2015-01-01

To develop the infrastructure and demonstrate the feasibility of conducting microarray-based RNA transcriptional profile analyses for the diagnosis of serious bacterial infections in febrile infants 60 days and younger in a multicenter pediatric emergency research network. We designed a prospective multicenter cohort study with the aim of enrolling more than 4000 febrile infants 60 days and younger. To ensure success of conducting complex genomic studies in emergency department (ED) settings, we established an infrastructure within the Pediatric Emergency Care Applied Research Network, including 21 sites, to evaluate RNA transcriptional profiles in young febrile infants. We developed a comprehensive manual of operations and trained site investigators to obtain and process blood samples for RNA extraction and genomic analyses. We created standard operating procedures for blood sample collection, processing, storage, shipping, and analyses. We planned to prospectively identify, enroll, and collect 1 mL blood samples for genomic analyses from eligible patients to identify logistical issues with study procedures. Finally, we planned to batch blood samples and determined RNA quantity and quality at the central microarray laboratory and organized data analysis with the Pediatric Emergency Care Applied Research Network data coordinating center. Below we report on establishment of the infrastructure and the feasibility success in the first year based on the enrollment of a limited number of patients. We successfully established the infrastructure at 21 EDs. Over the first 5 months we enrolled 79% (74 of 94) of eligible febrile infants. We were able to obtain and ship 1 mL of blood from 74% (55 of 74) of enrolled participants, with at least 1 sample per participating ED. The 55 samples were shipped and evaluated at the microarray laboratory, and 95% (52 of 55) of blood samples were of adequate quality and contained sufficient RNA for expression analysis. It is possible to create a robust infrastructure to conduct genomic studies in young febrile infants in the context of a multicenter pediatric ED research setting. The sufficient quantity and high quality of RNA obtained suggests that whole blood transcriptional profile analysis for the diagnostic evaluation of young febrile infants can be successfully performed in this setting.

The Programme for Global Paediatric Research.

PubMed

Zipursky, Alvin

2011-12-01

When it comes to global health, there is no 'them'... only 'us.'" - Global Health Council There is a major anomaly in child health research. The majority of pediatric research resources and expertise is located in the developed world, whereas the vast majority of childhood disease and mortality is in the developing world. This disequilibrium has been referred to as the "10/90 gap", suggesting that only 10% of global health research dollars are devoted to conditions that account for 90% of the global disease burden (Global Forum for Health Research). The Programme for Global Paediatric Research (PGPR) began as an effort to include, in a major pediatric research conference, topics dealing with diseases of children in the developing world in order to engage more interest and more research dollars. It has evolved into a program educating and linking professionals, and developing global networks of colleagues working collaboratively to solve major childhood health problems.

Commentary: Launch of a quality improvement network for evidence-based management of uncommon pediatric endocrine disorders: Turner syndrome as a prototype

USDA-ARS?s Scientific Manuscript database

Traditional, hypothesis-oriented research approaches have thus far failed to generate sufficient evidence to achieve consensus about the management of children with many endocrine disorders, partly because of the rarity of these disorders and because of regulatory burdens unique to research in child...

Hypothetical Network Adequacy Schemes For Children Fail To Ensure Patients' Access To In-Network Children's Hospital.

PubMed

Colvin, Jeffrey D; Hall, Matt; Thurm, Cary; Bettenhausen, Jessica L; Gottlieb, Laura; Shah, Samir S; Fieldston, Evan S; Goldin, Adam B; Melzer, Sanford M; Conway, Patrick H; Chung, Paul J

2018-06-01

Insurers are increasingly adopting narrow network strategies. Little is known about how these strategies may affect children's access to needed specialty care. We examined the percentage of pediatric specialty hospitalizations that would be beyond existing Medicare Advantage network adequacy distance requirements for adult hospital care and, as a secondary analysis, a pediatric adaptation of the Medicare Advantage requirements. We examined 748,920 hospitalizations at eighty-one children's hospitals that submitted data for the period October 2014-September 2015. Nearly half of specialty hospitalizations were outside the Medicare Advantage distance requirements. Under the pediatric adaptation, there was great variability among the hospitals, with the percent of hospitalizations beyond the distance requirements ranging from less than 1 percent to 35 percent. Instead of, or in addition to, time and distance standards, policy makers may need to consider more nuanced network definitions, including functional capabilities of the pediatric care network or clear exception policies for essential specialty care services.

Pediatric post-marketing safety systems in North America: assessment of the current status.

PubMed

McMahon, Ann W; Wharton, Gerold T; Bonnel, Renan; DeCelle, Mary; Swank, Kimberley; Testoni, Daniela; Cope, Judith U; Smith, Phillip Brian; Wu, Eileen; Murphy, Mary Dianne

2015-08-01

It is critical to have pediatric post-marketing safety systems that contain enough clinical and epidemiological detail to draw regulatory, public health, and clinical conclusions. The pediatric safety surveillance workshop (PSSW), coordinated by the Food and Drug Administration (FDA), identified these pediatric systems as of 2010. This manuscript aims to update the information from the PSSW and look critically at the systems currently in use. We reviewed North American pediatric post-marketing safety systems such as databases, networks, and research consortiums found in peer-reviewed journals and other online sources. We detail clinical examples from three systems that FDA used to assess pediatric medical product safety. Of the 59 systems reviewed for pediatric content, only nine were pediatric-focused and met the inclusion criteria. Brief descriptions are provided for these nine. The strengths and weaknesses of three systems (two of the nine pediatric-focused and one including both children and adults) are illustrated with clinical examples. Systems reviewed in this manuscript have strengths such as clinical detail, a large enough sample size to capture rare adverse events, and/or a patient denominator internal to the database. Few systems include all of these attributes. Pediatric drug safety would be better informed by utilizing multiple systems to take advantage of their individual characteristics. Copyright © 2015 John Wiley & Sons, Ltd.

Children's health and the environment: an overview.

PubMed

Landrigan, Philip J; Miodovnik, Amir

2011-01-01

Environmental pediatrics, the branch of pediatric medicine that studies the influence of the environment on children's health, has in the past decade grown exponentially. Rising rates of pediatric chronic disease and growing recognition of children's extensive exposures and great vulnerabilities to toxic hazards in the environment have catalyzed this expansion. New scientific initiatives have resulted. They include 14 Centers for Children's Environmental Health and Disease Prevention Research supported by the US National Institutes of Health and the US Environmental Protection Agency; a global network of Pediatric Environmental Health Specialty Units supported by the US Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry; new postdoctoral training programs in pediatric environmental medicine; and the National Children's Study, the largest prospective epidemiological study of children's health ever undertaken in the United States, which launched in 2009 and will follow 100,000 children from conception to age 21 to assess environmental influences on health and development. These research initiatives have delineated the exquisite vulnerability of fetuses, infants, and children to toxic hazards in the environment. They have led to discovery of new environmental causes of disease and disability in children. This issue of The Mount Sinai Journal of Medicine focuses on children's health and the environment. We have brought together thought leaders in children's environmental health to critically examine new research findings, to explore new opportunities for translating research to treatment and prevention, and to offer a vision for the future of this rapidly expanding field. © 2011 Mount Sinai School of Medicine.

Geo-Distinctive Comorbidity Networks of Pediatric Asthma.

PubMed

Shin, Eun Kyong; Shaban-Nejad, Arash

2018-01-01

Most pediatric asthma cases occur in complex interdependencies, exhibiting complex manifestation of multiple symptoms. Studying asthma comorbidities can help to better understand the etiology pathway of the disease. Albeit such relations of co-expressed symptoms and their interactions have been highlighted recently, empirical investigation has not been rigorously applied to pediatric asthma cases. In this study, we use computational network modeling and analysis to reveal the links and associations between commonly co-observed diseases/conditions with asthma among children in Memphis, Tennessee. We present a novel method for geo-parsed comorbidity network analysis to show the distinctive patterns of comorbidity networks in urban and suburban areas in Memphis.

Trends in the number and the quality of trial protocols involving children submitted to a French Institutional Review Board.

PubMed

Gautier, Isabelle; Janiaud, Perrine; Rollet, Nelly; André, Nicolas; Tsimaratos, Michel; Cornu, Catherine; Malik, Salma; Gentile, Stéphanie; Kassaï, Behrouz

2017-08-23

There is a great need for high quality clinical research for children. The European Pediatric Regulation aimed to improve the quality of clinical trials in order to increase the availability of treatments for children. The main purpose of this study was to assess the evolution of both the number and the quality of pediatric trial protocols that were submitted to a French Institutional Review Board (IRB00009118) before and after the initiation of the EU Pediatric Regulation. All protocols submitted to the IRB00009118 between 2003 and 2014 and conducting research on subjects under eighteen years of age were eligible. The quality of randomized clinical trials was assessed according to the guidelines developed by the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) Network and ranked using the Jadad score. Out of 622 protocols submitted to the Institutional Review Board (IRB), 21% (133/622) included children. Among these 133 pediatric protocols, the number of submitted pediatric protocols doubled between the two studied periods. From 2003 to 2008, 47 protocols including 21 institutionally sponsored were submitted to the IRB and from 2009 until 2014, 86 protocols including 48 institutionally sponsored were submitted. No significant trend was observed on the quality of RCTs. The overall median score of RCTs on the Jadad scale was high (3.5), 70.0% of protocols had a Jadad score ≥ 3, and 30.0% had a score < 3. Following the EU Pediatric Regulation, the number of pediatric protocols submitted to the IRB00009118 tends to increase, but no change was noticed regarding their quality.

Building a Common Pediatric Research Terminology for Accelerating Child Health Research

PubMed Central

Bailey, L. Charles; Forrest, Christopher B.; Padula, Michael A.; Hirschfeld, Steven

2014-01-01

Longitudinal observational clinical data on pediatric patients in electronic format is becoming widely available. A new era of multi-institutional data networks that study pediatric diseases and outcomes across disparate health delivery models and care settings are also enabling an innovative collaborative rapid improvement paradigm called the Learning Health System. However, the potential alignment of routine clinical care, observational clinical research, pragmatic clinical trials, and health systems improvement requires a data infrastructure capable of combining information from systems and workflows that historically have been isolated from each other. Removing barriers to integrating and reusing data collected in different settings will permit new opportunities to develop a more complete picture of a patient’s care and to leverage data from related research studies. One key barrier is the lack of a common terminology that provides uniform definitions and descriptions of clinical observations and data. A well-characterized terminology ensures a common meaning and supports data reuse and integration. A common terminology allows studies to build upon previous findings and to reuse data collection tools and data management processes. We present the current state of terminology harmonization and describe a governance structure and mechanism for coordinating the development of a common pediatric research terminology that links to clinical terminologies and can be used to align existing terminologies. By reducing the barriers between clinical care and clinical research, a Learning Health System can leverage and reuse not only its own data resources but also broader extant data resources. PMID:24534404

Gastrointestinal Symptoms in a Sample of Children with Pervasive Developmental Disorders

ERIC Educational Resources Information Center

Nikolov, Roumen N.; Bearss, Karen E.; Lettinga, Jelle; Erickson, Craig; Rodowski, Maria; Aman, Michael G.; McCracken, James T.; McDougle, Christopher J.; Tierney, Elaine; Vitiello, Benedetto; Arnold, L. Eugene; Shah, Bhavik; Posey, David J.; Ritz, Louise; Scahill, Lawrence

2009-01-01

Objective: To evaluate gastrointestinal (GI) problems in a large, well-characterized sample of children with pervasive developmental disorders (PDDs). Methods: One hundred seventy two children entering one of two trials conducted by the Research Units on Pediatric Psychopharmacology (RUPP) Autism Network were assessed comprehensively prior to…

Pediatric hospital medicine: a strategic planning roundtable to chart the future.

PubMed

Rauch, Daniel A; Lye, Patricia S; Carlson, Douglas; Daru, Jennifer A; Narang, Steve; Srivastava, Rajendu; Melzer, Sanford; Conway, Patrick H

2012-04-01

Given the growing field of Pediatric Hospital Medicine (PHM) and the need to define strategic direction, the Society of Hospital Medicine, the American Academy of Pediatrics, and the Academic Pediatric Association sponsored a roundtable to discuss the future of the field. Twenty-one leaders were invited plus a facilitator utilizing established health care strategic planning methods. A "vision statement" was developed. Specific initiatives in 4 domains (clinical practice, quality of care, research, and workforce) were identified that would advance PHM with a plan to complete each initiative. Review of the current issues demonstrated gaps between the current state of affairs and the full vision of the potential impact of PHM. Clinical initiatives were to develop an educational plan supporting the PHM Core Competencies and a clinical practice monitoring dashboard template. Quality initiatives included an environmental assessment of PHM participation on key committees, societies, and agencies to ensure appropriate PHM representation. Three QI collaboratives are underway. A Research Leadership Task Force was created and the Pediatric Research in Inpatient Settings (PRIS) network was refocused, defining a strategic framework for PRIS, and developing a funding strategy. Workforce initiatives were to develop a descriptive statement that can be used by any PHM physician, a communications tool describing "value added" of PHM; and a tool to assess career satisfaction among PHM physicians. We believe the Roundtable was successful in describing the current state of PHM and laying a course for the near future. Copyright © 2011 Society of Hospital Medicine.

Gaps and opportunities in refractory status epilepticus research in children: a multi-center approach by the Pediatric Status Epilepticus Research Group (pSERG).

PubMed

Sánchez Fernández, Iván; Abend, Nicholas S; Agadi, Satish; An, Sookee; Arya, Ravindra; Carpenter, Jessica L; Chapman, Kevin E; Gaillard, William D; Glauser, Tracy A; Goldstein, David B; Goldstein, Joshua L; Goodkin, Howard P; Hahn, Cecil D; Heinzen, Erin L; Mikati, Mohamad A; Peariso, Katrina; Pestian, John P; Ream, Margie; Riviello, James J; Tasker, Robert C; Williams, Korwyn; Loddenkemper, Tobias

2014-02-01

Status epilepticus (SE) is a life-threatening condition that can be refractory to initial treatment. Randomized controlled studies to guide treatment choices, especially beyond first-line drugs, are not available. This report summarizes the evidence that guides the management of refractory convulsive SE (RCSE) in children, defines gaps in our clinical knowledge and describes the development and works of the 'pediatric Status Epilepticus Research Group' (pSERG). A literature review was performed to evaluate current gaps in the pediatric SE and RCSE literature. In person and online meetings helped to develop and expand the pSERG network. The care of pediatric RCSE is largely based on extrapolations of limited evidence derived from adult literature and supplemented with case reports and case series in children. No comparative effectiveness trials have been performed in the pediatric population. Gaps in knowledge include risk factors for SE, biomarkers of SE and RCSE, second- and third-line treatment options, and long-term outcome. The care of children with RCSE is based on limited evidence. In order to address these knowledge gaps, the multicenter pSERG was established to facilitate prospective collection, analysis, and sharing of de-identified data and biological specimens from children with RCSE. These data will allow identification of treatment strategies associated with better outcomes and delineate evidence-based interventions to improve the care of children with SE. Copyright © 2013 The Authors. Published by Elsevier Ltd.. All rights reserved.

The Child and Adolescent Psychiatry Trials Network

ERIC Educational Resources Information Center

March, John S.; Silva, Susan G.; Compton, Scott; Anthony, Ginger; DeVeaugh-Geiss, Joseph; Califf, Robert; Krishnan, Ranga

2004-01-01

Objective: The current generation of clinical trials in pediatric psychiatry often fails to maximize clinical utility for practicing clinicians, thereby diluting its impact. Method: To attain maximum clinical relevance and acceptability, the Child and Adolescent Psychiatry Trials Network (CAPTN) will transport to pediatric psychiatry the practical…

The Affordable Care Act and Health Insurance Exchanges: Advocacy Efforts for Children's Oral Health.

PubMed

Orynich, C Ashley; Casamassimo, Paul S; Seale, N Sue; Litch, C Scott; Reggiardo, Paul

2015-01-01

To evaluate legislative differences in defining the Affordable Care Act's (ACA) pediatric dental benefit and the role of pediatric advocates across states with different health insurance Exchanges. Data were collected through public record investigation and confidential health policy expert interviews conducted at the state and federal level. Oral health policy change by the pediatric dental profession requires advocating for the mandatory purchase of coverage through the Exchange, tax subsidy contribution toward pediatric dental benefits, and consistent regulatory insurance standards for financial solvency, network adequacy and provider reimbursement. The pediatric dental profession is uniquely positioned to lead change in oral health policy amidst health care reform through strengthening state-level formalized networks with organized dentistry and commercial insurance carriers.

Pediatric Diabetic Ketoacidosis, Fluid Therapy and Cerebral Injury: The Design of a Factorial Randomized Controlled Trial

PubMed Central

Glaser, Nicole S.; Ghetti, Simona; Casper, T. Charles; Dean, J. Michael; Kuppermann, Nathan

2013-01-01

Treatment protocols for pediatric diabetic ketoacidosis (DKA) vary considerably among centers in the United States and worldwide. The optimal protocol for intravenous fluid administration is an area of particular controversy, mainly in regard to possible associations between rates of intravenous fluid infusion and the development of cerebral edema, the most common and most feared complication of DKA in children. Theoretical concerns about associations between osmotic fluid shifts and cerebral edema have prompted recommendations for conservative fluid infusion during DKA. However, recent data suggest that cerebral hypoperfusion may play a role in cerebral injury associated with DKA. Currently there are no existing data from prospective clinical trials to determine the optimal fluid treatment protocol for pediatric DKA. The Pediatric Emergency Care Applied Research Network FLUID (Fluid Therapies Under Investigation in DKA) Study is the first prospective randomized trial to evaluate fluid regimens for pediatric DKA. This 13-center nationwide factorial-design study will evaluate the effects of rehydration rate and fluid sodium content on neurological status during DKA treatment, the frequency of clinically-overt CE, and long-term neurocognitive outcomes following DKA. PMID:23490311

Factors influencing pediatric Injury Severity Score and Glasgow Coma Scale in pediatric automobile crashes: results from the Crash Injury Research Engineering Network.

PubMed

Ehrlich, Peter F; Brown, J Kristine; Sochor, Mark R; Wang, Stewart C; Eichelberger, Martin E

2006-11-01

Motor vehicle crashes account for more than 50% of pediatric injuries. Triage of pediatric patients to appropriate centers can be based on the crash/injury characteristics. Pediatric motor vehicle crash/injury characteristics can be determined from an in vitro laboratory using child crash dummies. However, to date, no detailed data with respect to outcomes and crash mechanism have been presented with a pediatric in vivo model. The Crash Injury Research Engineering Network is comprised of 10 level 1 trauma centers. Crashes were examined with regard to age, crash severity (DeltaV), crash direction, restraint use, and airbag deployment. Multiple logistic regression analysis was performed with Injury Severity Score (ISS) and Glasgow Coma Scale (GCS) as outcomes. Standard age groupings (0-4, 5-9, 10-14, and 15-18) were used. The database is biases toward a survivor population with few fatalities. Four hundred sixty-one motor vehicle crashes with 2500 injuries were analyzed (242 boys, 219 girls). Irrespective of age, DeltaV > 30 mph resulted in increased ISS and decreased GCS (eg, for 0-4 years, DeltaV < 30: ISS = 10, GCS = 13.5 vs DeltaV > 30: ISS = 19.5, GCS = 10.6; P < .007, < .002, respectively). Controlling for DeltaV, children in lateral crashes had increased ISS and decreased GCS versus those in frontal crashes. Airbag deployment was protective for children 15 to 18 years old and resulted in a lower ISS and higher GCS (odds ratio, 2.1; 95% confidence interval, 0.9-4.6). Front-seat passengers suffered more severe (ISS > 15) injuries than did backseat passengers (odds ratio, 1.7; 95% confidence interval, 0.7-3.4). A trend was noted for children younger than 12 years sitting in the front seat to have increased ISS and decreased GCS with airbag deployment but was limited by case number. A reproducible pattern of increased ISS and lower GCS characterized by high severity, lateral crashes in children was noted. Further analysis of the specific injuries as a function and the crash characteristic can help guide management and prevention strategies.

Patient and Community-Level Socio-Demographic Characteristics Associated with Emergency Department Visits for Childhood Injury; A Retrospective Analysis of Data from the Pediatric Emergency Care Applied Research Network (PECARN) Core Data Project 2004–2008

PubMed Central

Macy, Michelle L.; Zonfrillo, Mark R.; Cook, Lawrence J.; Funai, Tomohiko; Goldstick, Jason; Stanley, Rachel M.; Chamberlain, James M.; Cunningham, Rebecca M.; Lipton, Robert; Alpern, Elizabeth R.

2015-01-01

Objective To examine pediatric emergency department (ED) visits over 5 years, trends in injury severity, and associations between injury-related ED visit outcome and patient and community-level socio-demographic characteristics. Study design Retrospective analysis of administrative data provided to the Pediatric Emergency Care Applied Research Network Core Data Project, 2004–2008. Home addresses were geocoded to determine census block group and associated socio-demographic characteristics. Maximum Abbreviated Injury Scale severity and Severity Classification System scores were calculated. Generalized estimating equations were used to test for associations between socio-demographic characteristics and admission or transfer among injury-related ED visits. Results Overall ED visits and injury-related visits increased from 2004 to 2008 at study sites. Of 2,833,676 successfully geocoded visits, 700,821 (24.7%) were injury-related. The proportion of higher severity injury-related visits remained consistent. Nearly 10% of injury-related visits resulted in admission or transfer each year. After adjusting for age, sex, payer, and injury severity, odds of admission or transfer were lower among minority children and children from areas with moderate and high prevalence of poverty. Conclusions Pediatric injury-related ED visits to included sites increased over the study period while injury severity, anticipated resource utilization, and visit outcomes remained stable, with low rates of admission or transfer. Socio-demographic differences in injury-related visits and ED disposition were apparent. ED-based injury surveillance is essential to understand disparities, inform targets for prevention programs, and reduce the overall burden of childhood injuries. PMID:26141551

Children's health and the environment: a new agenda for prevention research.

PubMed Central

Landrigan, P J; Carlson, J E; Bearer, C F; Cranmer, J S; Bullard, R D; Etzel, R A; Groopman, J; McLachlan, J A; Perera, F P; Reigart, J R; Robison, L; Schell, L; Suk, W A

1998-01-01

Patterns of illness in American children have changed dramatically in this century. The ancient infectious diseases have largely been controlled. The major diseases confronting children now are chronic and disabling conditions termed the "new pediatric morbidity"--asthma mortality has doubled; leukemia and brain cancer have increased in incidence; neurodevelopmental dysfunction is widespread; hypospadias incidence has doubled. Chemical toxicants in the environment as well as poverty, racism, and inequitable access to medical care are factors known and suspected to contribute to causation of these pediatric diseases. Children are at risk of exposure to over 15,000 high-production-volume synthetic chemicals, nearly all of them developed in the past 50 years. These chemicals are used widely in consumer products and are dispersed in the environment. More than half are untested for toxicity. Children appear uniquely vulnerable to chemical toxicants because of their disproportionately heavy exposures and their inherent biological susceptibility. To prevent disease of environmental origin in America's children, the Children's Environmental Health Network (CEHN) calls for a comprehensive, national, child-centered agenda. This agenda must recognize children's vulnerabilities to environmental toxicants. It must encompass a) a new prevention-oriented research focus; b) a new child-centered paradigm for health risk assessment and policy formulation; and c) a campaign to educate the public, health professionals, and policy makers that environmental disease is caused by preventable exposures and is therefore avoidable. To anchor the agenda, CEHN calls for long-term, stable investment and for creation of a national network of pediatric environmental health research and prevention centers. PMID:9646038

O8.10A MODEL FOR RESEARCH INITIATIVES FOR RARE CANCERS: THE COLLABORATIVE EPENDYMOMA RESEARCH NETWORK (CERN)

PubMed Central

Armstrong, T.S.; Aldape, K.; Gajjar, A.; Haynes, C.; Hirakawa, D.; Gilbertson, R.; Gilbert, M.R.

2014-01-01

Ependymoma represents less than 5% of adult central nervous system (CNS) tumors and a higher percentage of pediatric CNS tumors, but it remains an orphan disease. The majority of the laboratory-based research and clinical trials have been conducted in the pediatric setting, a reflection of the relative incidence and funding opportunities. CERN, created in 2006, was designed to establish a collaborative effort between laboratory and clinical research and pediatric and adult investigators. The organization of CERN is based on integration and collaboration among five projects. Project 1 contains the clinical trials network encompassing both adult and pediatric centers. This group has completed 2 clinical trials with more underway. Project 2 is focused on molecular classification of human ependymoma tumor tissues and also contains the tumor repository which has now collected over 600 fully clinically annotated CNS ependymomas from adults and children. Project 3 is focused on drug discovery utilizing robust laboratory models of ependymoma to perform high throughput screening of drug libraries, then taking promising agents through extensive preclinical testing including monitoring of drug delivery to tumor using state of the art microdialysis. Project 4 contains the basic research efforts evaluating the molecular pathogenesis of ependymoma and has successfully translated these findings by generating the first mouse models of ependymoma that are employed in preclinical drug development in Project 3. Project 5 studies patient outcomes, including the incorporation of these measures in the clinical trials. This project also contains an online Ependymoma Outcomes survey, collecting data on the consequences of the disease and its treatment. These projects have been highly successful and collaborative. For example, the serial measurement of symptom burden (Project 5) has greatly contributed to the evaluation of treatment efficacy of a clinical trial (Project 1) and investigators from Project 2 are evaluating potential predictive markers from tumor tissue from the same clinical trial. Results from genomic and molecular discoveries generated by Project 4 were evaluated using the clinical material from the Tumor Registry (Project 2). Agents identified from the high throughput screening in Project 3 are being used to create novel clinical trials (Project 1). As a complimentary effort, CERN's community outreach efforts provide a major gateway to patients, families, caregivers and healthcare providers, contributing to greater awareness of ependymoma, and supporting clinical trial accrual in Project 1. In summary, CERN has successfully created a collaborative, multi-national integrated effort combining pediatric- and adult-focused investigators spanning from basic science to patient outcomes measures. This research paradigm may be an effective approach for other rare cancers.

Children's Oncology Group's 2013 blueprint for research: behavioral science.

PubMed

Noll, Robert B; Patel, Sunita K; Embry, Leanne; Hardy, Kristina K; Pelletier, Wendy; Annett, Robert D; Patenaude, Andrea; Lown, E Anne; Sands, Stephen A; Barakat, Lamia P

2013-06-01

Behavioral science has long played a central role in pediatric oncology clinical service and research. Early work focused on symptom relief related to side effects of chemotherapy and pain management related to invasive medical procedures. As survival rates improved, the focused has shifted to examination of the psychosocial impact, during and after treatment, of pediatric cancer and its treatment on children and their families. The success of the clinical trials networks related to survivorship highlights an even more critical role in numerous domains of psychosocial research and care. Within the cooperative group setting, the field of behavioral science includes psychologists, social workers, physicians, nurses, and parent advisors. The research agenda of this group of experts needs to focus on utilization of psychometrically robust measures to evaluate the impact of treatment on children with cancer and their families during and after treatment ends. Over the next 5 years, the field of behavioral science will need to develop and implement initiatives to expand use of standardized neurocognitive and behavior batteries; increase assessment of neurocognition using technology; early identification of at-risk children/families; establish standards for evidence-based psychosocial care; and leverage linkages with the broader behavioral health pediatric oncology community to translate empirically supported research clinical trials care to practice. Copyright © 2012 Wiley Periodicals, Inc.

Gene Network for Identifying the Entropy Changes of Different Modules in Pediatric Sepsis.

PubMed

Yang, Jing; Zhang, Pingli; Wang, Lumin

2016-01-01

Pediatric sepsis is a disease that threatens life of children. The incidence of pediatric sepsis is higher in developing countries due to various reasons, such as insufficient immunization and nutrition, water and air pollution, etc. Exploring the potential genes via different methods is of significance for the prevention and treatment of pediatric sepsis. This study aimed to identify potential genes associated with pediatric sepsis utilizing analysis of gene network and entropy. The mRNA expression in the blood samples collected from 20 septic children and 30 healthy controls was quantified by using Affymetrix HG-U133A microarray. Two condition-specific protein-protein interaction networks (PINs), one for the healthy control and the other one for the children with sepsis, were deduced by combining the fundamental human PINs with gene expression profiles in the two phenotypes. Subsequently, distinct modules from the two conditional networks were extracted by adopting a maximal clique-merging approach. Delta entropy (ΔS) was calculated between sepsis and control modules. Then, key genes displaying changes in gene composition were identified by matching the control and sepsis modules. Two objective modules were obtained, in which ribosomal protein RPL4 and RPL9 as well as TOP2A were probably considered as the key genes differentiating sepsis from healthy controls. According to previous reports and this work, TOP2A is the potential gene therapy target for pediatric sepsis. The relationship between pediatric sepsis and RPL4 and RPL9 needs further investigation. © 2016 The Author(s) Published by S. Karger AG, Basel.

Applying social network analysis to understand the knowledge sharing behaviour of practitioners in a clinical online discussion forum.

PubMed

Stewart, Samuel Alan; Abidi, Syed Sibte Raza

2012-12-04

Knowledge Translation (KT) plays a vital role in the modern health care community, facilitating the incorporation of new evidence into practice. Web 2.0 tools provide a useful mechanism for establishing an online KT environment in which health practitioners share their practice-related knowledge and experiences with an online community of practice. We have implemented a Web 2.0 based KT environment--an online discussion forum--for pediatric pain practitioners across seven different hospitals in Thailand. The online discussion forum enabled the pediatric pain practitioners to share and translate their experiential knowledge to help improve the management of pediatric pain in hospitals. The goal of this research is to investigate the knowledge sharing dynamics of a community of practice through an online discussion forum. We evaluated the communication patterns of the community members using statistical and social network analysis methods in order to better understand how the online community engages to share experiential knowledge. Statistical analyses and visualizations provide a broad overview of the communication patterns within the discussion forum. Social network analysis provides the tools to delve deeper into the social network, identifying the most active members of the community, reporting the overall health of the social network, isolating the potential core members of the social network, and exploring the inter-group relationships that exist across institutions and professions. The statistical analyses revealed a network dominated by a single institution and a single profession, and found a varied relationship between reading and posting content to the discussion forum. The social network analysis discovered a healthy network with strong communication patterns, while identifying which users are at the center of the community in terms of facilitating communication. The group-level analysis suggests that there is strong interprofessional and interregional communication, but a dearth of non-nurse participants has been identified as a shortcoming. The results of the analysis suggest that the discussion forum is active and healthy, and that, though few, the interprofessional and interinstitutional ties are strong.

Discordant identification of pediatric severe sepsis by research and clinical definitions in the SPROUT international point prevalence study.

PubMed

Weiss, Scott L; Fitzgerald, Julie C; Maffei, Frank A; Kane, Jason M; Rodriguez-Nunez, Antonio; Hsing, Deyin D; Franzon, Deborah; Kee, Sze Ying; Bush, Jenny L; Roy, Jason A; Thomas, Neal J; Nadkarni, Vinay M

2015-09-16

Consensus criteria for pediatric severe sepsis have standardized enrollment for research studies. However, the extent to which critically ill children identified by consensus criteria reflect physician diagnosis of severe sepsis, which underlies external validity for pediatric sepsis research, is not known. We sought to determine the agreement between physician diagnosis and consensus criteria to identify pediatric patients with severe sepsis across a network of international pediatric intensive care units (PICUs). We conducted a point prevalence study involving 128 PICUs in 26 countries across 6 continents. Over the course of 5 study days, 6925 PICU patients <18 years of age were screened, and 706 with severe sepsis defined either by physician diagnosis or on the basis of 2005 International Pediatric Sepsis Consensus Conference consensus criteria were enrolled. The primary endpoint was agreement of pediatric severe sepsis between physician diagnosis and consensus criteria as measured using Cohen's κ. Secondary endpoints included characteristics and clinical outcomes for patients identified using physician diagnosis versus consensus criteria. Of the 706 patients, 301 (42.6%) met both definitions. The inter-rater agreement (κ ± SE) between physician diagnosis and consensus criteria was 0.57 ± 0.02. Of the 438 patients with a physician's diagnosis of severe sepsis, only 69% (301 of 438) would have been eligible to participate in a clinical trial of pediatric severe sepsis that enrolled patients based on consensus criteria. Patients with physician-diagnosed severe sepsis who did not meet consensus criteria were younger and had lower severity of illness and lower PICU mortality than those meeting consensus criteria or both definitions. After controlling for age, severity of illness, number of comorbid conditions, and treatment in developed versus resource-limited regions, patients identified with severe sepsis by physician diagnosis alone or by consensus criteria alone did not have PICU mortality significantly different from that of patients identified by both physician diagnosis and consensus criteria. Physician diagnosis of pediatric severe sepsis achieved only moderate agreement with consensus criteria, with physicians diagnosing severe sepsis more broadly. Consequently, the results of a research study based on consensus criteria may have limited generalizability to nearly one-third of PICU patients diagnosed with severe sepsis.

Children's Specialized Hospital and GetWellNetwork Collaborate to Improve Patient Education and Outcomes Using an Innovative Approach.

PubMed

Kompany, Laura; Luis, Kiersten; Manganaro, Julie; Motacki, Kathleen; Mustacchio, Elaine; Provenzano, Donna

2016-01-01

Patient education in a pediatric setting is unique. There are different patient ages, degrees of learning, and diagnoses to take into account when educating children and their families. A new and innovative trend in practice called Interactive Patient Care (IPC) integrates technology into care processes to advance pediatric nursing education and patient and family satisfaction. Children's Specialized Hospital is the first pediatric rehabilitation hospital to develop and implement this type of program using an IPC platform from the GetWellNetwork. With the implementation of the GetWellNetwork, Children's Specialized Hospital has achieved positive results in patient satisfaction, health care utilization, quality, and safety measures.

Impact of body composition on pharmacokinetics of doxorubicin in children: A Glaser Pediatric Research Network study

USDA-ARS?s Scientific Manuscript database

We studied the relationship between doxorubicin pharmacokinetics and body composition in children with cancer. Children between 1 and 21 years of age, receiving doxorubicin as an infusion of any duration <24 h on either a 1-day or 2-day schedule, were eligible if they had no significant abnormality ...

The safety and effectiveness of pediatric chiropractic: a survey of chiropractors and parents in a practice-based research network.

PubMed

Alcantara, Joel; Ohm, Jeanne; Kunz, Derek

2009-01-01

With continued popularity of complementary and alternative medicine (CAM) therapies for children, their safety and effectiveness are of high concern for both CAM and conventional therapy providers. Chiropractic is the most popular form of practitioner-based CAM therapies for children. The objective of this study was to describe the practice of pediatric chiropractic, including its safety and effectiveness. This study used a cross-sectional survey. A practice-based research network was used for this study. Participants were chiropractors and parents of pediatric patients (aged < or =18 years) attending chiropractic visits ranging from one to 12 visits. This is a survey study. No interventions were rendered in the completion of this study. Demographics, clinical presentations, treatment-associated aggravations, complications and improvements. The indicated primary reason for chiropractic care of children was "wellness care." With respect to condition-based presentations, musculoskeletal conditions were the most common, in addition to nonmusculoskeletal conditions of childhood. The most common techniques used were diversified technique, Gonstead technique, Thompson technique, and activator methods. Treatment-associated complications were not indicated by the chiropractic and parent responders. Chiropractor responders indicated three adverse events per 5,438 office visits from the treatment of 577 children. The parent responders indicated two adverse events from 1,735 office visits involving the care of 239 children. Both sets of responders indicated a high rate of improvement with respect to the children's presenting complaints, in addition to salutary effects unrelated to the children's initial clinical presentations.

The future of pediatric dentistry education and curricula: a Chilean perspective.

PubMed

Mariño, Rodrigo; Ramos-Gómez, Francisco; Manton, David John; Onetto, Juan Eduardo; Hugo, Fernando; Feldens, Carlos Alberto; Bedi, Raman; Uribe, Sergio; Zillmann, Gisela

2016-07-18

A meeting was organised to consolidate a network of researchers and academics from Australia, Brazil, Chile, the UK and the USA, relating to Early Childhood Caries (ECC) and Dental Trauma (DT). As part of this meeting, a dedicated session was held on the future of paediatric dental education and curricula. Twenty-four paediatric dentistry (PD) academics, representing eight Chilean dental schools, and three international specialists (from Brazil and Latvia) participated in group discussions facilitated by five members of the ECC/DT International Collaborative Network. Data were collected from group discussions which followed themes developed as guides to identify key issues associated with paediatric dentistry education, training and research. Participants discussed current PD dental curricula in Chile, experiences in educating new cohorts of oral health care providers, and the outcomes of existing efforts in education and research in PD. They also, identified challenges, opportunities and areas in need of further development. This paper provides an introspective analysis of the education and training of PD in Chile; describes the input provided by participants into pediatric dentistry education and curricula; and sets out some key priorities for action with suggested directions to best prepare the future dental workforce to maximise oral health outcomes for children. Immediate priorities for action in paediatric dentistry in Chile were proposed.

Satisfaction with support versus size of network: differential effects of social support on psychological distress in parents of pediatric cancer patients.

PubMed

Harper, Felicity W K; Peterson, Amy M; Albrecht, Terrance L; Taub, Jeffrey W; Phipps, Sean; Penner, Louis A

2016-05-01

This study examined the direct and buffering effects of social support on longer-term global psychological distress among parents coping with pediatric cancer. In both sets of analyses, we examined whether these effects depended on the dimension of social support provided (i.e., satisfaction with support versus size of support network). Participants were 102 parents of pediatric cancer patients. At study entry, parents reported their trait anxiety, depression, and two dimensions of their social support network (satisfaction with support and size of support network). Parents subsequently reported their psychological distress in 3- and 9-month follow-up assessments. Parents' satisfaction with support had a direct effect on longer-term psychological distress; satisfaction was negatively associated with distress at both follow-ups. In contrast, size of support network buffered (moderated) the impact of trait anxiety and depression on later distress. Parents with smaller support networks and higher levels of trait anxiety and depression at baseline had higher levels of psychological distress at both follow-ups; for parents with larger support networks, there was no relationship. Social support can attenuate psychological distress in parents coping with pediatric cancer; however, the nature of the effect depends on the dimension of support. Whereas interventions that focus on increasing satisfaction with social support may benefit all parents, at-risk parents will likely benefit from interventions that ensure they have an adequate number of support resources. Copyright © 2015 John Wiley & Sons, Ltd.

Satisfaction with support versus size of network: Differential effects of social support on psychological distress in parents of pediatric cancer patients

PubMed Central

Harper, Felicity W. K.; Peterson, Amy M.; Albrecht, Terrance L.; Taub, Jeffrey W.; Phipps, Sean; Penner, Louis A.

2016-01-01

Objective This study examined the direct and the buffering effects of social support on longer-term global psychological distress among parents coping with pediatric cancer. In both sets of analyses we examined whether these effects depended on the dimension of social support provided (i.e., satisfaction with support versus size of support network). Method Participants were 102 parents of pediatric cancer patients. At study entry, parents reported their trait anxiety, depression, and two dimensions of their social support network (satisfaction with support and size of support network). Parents subsequently reported their psychological distress in 3- and 9-month follow-up assessments. Results Parents’ satisfaction with support had a direct effect on longer-term psychological distress; satisfaction was negatively associated with distress at both follow-ups. In contrast, size of support network buffered (moderated) the impact of trait anxiety and depression on later distress. Parents with smaller support networks and higher levels of trait anxiety and depression at baseline had higher levels of psychological distress at both follow-ups; for parents with larger support networks, there was no relationship. Conclusion Social support can attenuate psychological distress in parents coping with pediatric cancer; however, the nature of the effect depends on the dimension of support. Whereas, interventions that focus on increasing satisfaction with social support may benefit all parents, at-risk parents will likely benefit from interventions that ensure they have an adequate number of support resources. PMID:27092714

Collaborative networks for both improvement and research.

PubMed

Clancy, Carolyn M; Margolis, Peter A; Miller, Marlene

2013-06-01

Moving significant therapeutic discoveries beyond early biomedical translation or T1 science and into practice involves: (1) T2 science, identifying "the right treatment for the right patient in the right way at the right time" (eg, patient-centered outcomes research) and tools to implement this knowledge (eg, guidelines, registries); and (2) T3 studies addressing how to achieve health care delivery change. Collaborative improvement networks can serve as large-scale, health system laboratories to engage clinicians, researchers, patients, and parents in testing approaches to translate research into practice. Improvement networks are of particular importance for pediatric T2 and T3 research, as evidence to establish safety and efficacy of therapeutic interventions in children is often lacking. Networks for improvement and research are also consistent with the Institute of Medicine's Learning Healthcare Systems model in which learning networks provide a system for improving care and outcomes and generate new knowledge in near real-time. Creation of total population registries in collaborative network sites provides large, representative study samples with high-quality data that can be used to generate evidence and to inform clinical decision-making. Networks use collaboration, data, and quality-improvement methods to standardize practice. Therefore, variation in outcomes due to unreliable and unnecessary care delivery is reduced, increasing statistical power, and allowing a consistent baseline from which to test new strategies. In addition, collaborative networks for improvement and research offer the opportunity to not only make improvements but also to study improvements to determine which interventions and combination of strategies work best in what settings.

Pediatric diabetic ketoacidosis, fluid therapy, and cerebral injury: the design of a factorial randomized controlled trial.

PubMed

Glaser, Nicole S; Ghetti, Simona; Casper, T Charles; Dean, J Michael; Kuppermann, Nathan

2013-09-01

Treatment protocols for pediatric diabetic ketoacidosis (DKA) vary considerably among centers in the USA and worldwide. The optimal protocol for intravenous (IV) fluid administration is an area of particular controversy, mainly in regard to possible associations between rates of IV fluid infusion and the development of cerebral edema (CE), the most common and the most feared complication of DKA in children. Theoretical concerns about associations between osmotic fluid shifts and CE have prompted recommendations for conservative fluid infusion during DKA. However, recent data suggest that cerebral hypoperfusion may play a role in cerebral injury associated with DKA. Currently, there are no existing data from prospective clinical trials to determine the optimal fluid treatment protocol for pediatric DKA. The Pediatric Emergency Care Applied Research Network FLUID (FLuid therapies Under Investigation in DKA) study is the first prospective randomized trial to evaluate fluid regimens for pediatric DKA. This 13-center nationwide factorial design study will evaluate the effects of rehydration rate and fluid sodium content on neurological status during DKA treatment, the frequency of clinically overt CE and long-term neurocognitive outcomes following DKA. © 2013 John Wiley & Sons A/S.

Second Harmonic Generation Reveals Subtle Fibrosis Differences in Adult and Pediatric Nonalcoholic Fatty Liver Disease.

PubMed

Liu, Feng; Zhao, Jing-Min; Rao, Hui-Ying; Yu, Wei-Miao; Zhang, Wei; Theise, Neil D; Wee, Aileen; Wei, Lai

2017-11-20

Investigate subtle fibrosis similarities and differences in adult and pediatric nonalcoholic fatty liver disease (NAFLD) using second harmonic generation (SHG). SHG/two-photon excitation fluorescence imaging quantified 100 collagen parameters and determined qFibrosis values by using the nonalcoholic steatohepatitis (NASH) Clinical Research Network (CRN) scoring system in 62 adult and 36 pediatric NAFLD liver specimens. Six distinct parameters identified differences among the NASH CRN stages with high accuracy (area under the curve, 0835-0.982 vs 0.885-0.981, adult and pediatric). All portal region parameters showed similar changes across early stages 0, 1C, and 2, in both groups. Parameter values decreased in adults with progression from stage 1A/B to 2 in the central vein region. In children, aggregated collagen parameters decreased, but nearly all distributed collagen parameters increased from stage 1A/B to 2. SHG analysis accurately reproduces NASH CRN staging in NAFLD, as well as reveals differences and similarities between adult and pediatric collagen deposition not captured by currently available quantitative methods. © American Society for Clinical Pathology, 2017. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Confronting pediatric brain tumors: parent stories.

PubMed

McMillan, Gigi

2014-01-01

This narrative symposium brings to light the extreme difficulties faced by parents of children diagnosed with brain tumors. NIB editorial staff and narrative symposium editors, Gigi McMillan and Christy A. Rentmeester, developed a call for stories that was distributed on several list serves and posted on Narrative Inquiry in Bioethics' website. The call asks parents to share their personal experience of diagnosis, treatment, long-term effects of treatment, social issues and the doctor-patient-parent dynamic that develops during this process. Thirteen stories are found in the print version of the journal and an additional six supplemental stories are published online only through Project MUSE. One change readers may notice is that the story authors are not listed in alphabetical order. The symposium editors had a vision for this issue that included leading readers through the timeline of this topic: diagnosis-treatment-acute recovery-recurrence-treatment (again)-acute recovery (again)-long-term quality of life-(possibly) end of life. Stories are arranged to help lead the reader through this timeline.Gigi McMillan is a patient and research subject advocate, co-founder of We Can, Pediatric Brain Tumor Network, as well as, the mother of a child who suffered from a pediatric brain tumor. She also authored the introduction for this symposium. Christy Rentmeester is an Associate Professor of Health Policy and Ethics in the Creighton University School of Medicine. She served as a commentator for this issue. Other commentators for this issue are Michael Barraza, a clinical psychologist and board member of We Can, Pediatric Brain Tumor Network; Lisa Stern, a pediatrician who has diagnosed six children with brain tumors in her 20 years of practice; and Katie Rose, a pediatric brain tumor patient who shares her special insights about this world.

Toward Dysfunctional Connectivity: A Review of Neuroimaging Findings in Pediatric Major Depressive Disorder

PubMed Central

Hulvershorn, Leslie; Cullen, Kathryn; Anand, Amit

2011-01-01

Child and adolescent psychiatric neuroimaging research typically lags behind similar advances in adult disorders. While the pediatric depression imaging literature is less developed, a recent surge in interest has created the need for a synthetic review of this work. Major findings from pediatric volumetric and functional magnetic resonance imaging (fMRI), magnetic resonance spectroscopy (MRS), diffusion tensor imaging (DTI) and resting state functional connectivity studies converge to implicate a corticolimbic network of key areas that work together to mediate the task of emotion regulation. Imaging the brain of children and adolescents with unipolar depression began with volumetric studies of isolated brain regions that served to identify key prefrontal, cingulate and limbic nodes of depression-related circuitry elucidated from more recent advances in DTI and functional connectivity imaging. Systematic review of these studies preliminarily suggests developmental differences between findings in youth and adults, including prodromal neurobiological features, along with some continuity across development. PMID:21901425

Research Units of Pediatric Psychopharmacology (RUPP) Autism Network Randomized Clinical Trial of Parent Training and Medication: One-Year Follow-Up

ERIC Educational Resources Information Center

Arnold, L. Eugene; Aman, Michael G.; Li, Xiaobai; Butter, Eric; Humphries, Kristina; Scahill, Lawrence; Lecavalier, Luc; McDougle, Christopher J.; Swiezy, Naomi B.; Handen, Benjamin; Wilson, Krystina; Stigler, Kimberly A.

2012-01-01

Objective: To follow up on a three-site, 24-week randomized clinical trial (N = 124) comparing antipsychotic medication alone (MED) with antipsychotic medication plus parent training in the behavior management (COMB) of children with autism spectrum disorders and severe behavior problems. The COMB treatment had shown a significant advantage for…

Sensitivity of the Modified Children's Yale-Brown Obsessive Compulsive Scale to Detect Change: Results from Two Multi-Site Trials

ERIC Educational Resources Information Center

Scahill, Lawrence; Sukhodolsky, Denis G.; Anderberg, Emily; Dimitropoulos, Anastasia; Dziura, James; Aman, Michael G.; McCracken, James; Tierney, Elaine; Hallett, Victoria; Katz, Karol; Vitiello, Benedetto; McDougle, Christopher

2016-01-01

Repetitive behavior is a core feature of autism spectrum disorder. We used 8-week data from two federally funded, multi-site, randomized trials with risperidone conducted by the Research Units on Pediatric Psychopharmacology Autism Network to evaluate the sensitivity of the Children's Yale-Brown Obsessive Compulsive Scale modified for autism…

Brief Report: Social Disability in Autism Spectrum Disorder--Results from Research Units on Pediatric Psychopharmacology (RUPP) Autism Network Trials

ERIC Educational Resources Information Center

Scahill, Lawrence; Hallett, Victoria; Aman, Michael G.; McDougle, Christopher J.; Arnold, L. Eugene; McCracken, James T.; Tierney, Elaine; Deng, Yanhong; Dziura, James; Vitiello, Benedetto

2013-01-01

There is growing interest in measuring social disability as a core element of autism spectrum disorders in medication trials. We conducted a secondary analysis on the Aberrant Behavior Checklist Social Withdrawal subscale using data from two federally-funded, multi-site, randomized trials with risperidone. Study 1 included 52 subjects assigned to…

A new diagnosis grouping system for child emergency department visits.

PubMed

Alessandrini, Evaline A; Alpern, Elizabeth R; Chamberlain, James M; Shea, Judy A; Gorelick, Marc H

2010-02-01

A clinically sensible system of grouping diseases is needed for describing pediatric emergency diagnoses for research and reporting. This project aimed to create an International Classification of Diseases (ICD)-based diagnosis grouping system (DGS) for child emergency department (ED) visits that is 1) clinically sensible with regard to how diagnoses are grouped and 2) comprehensive in accounting for nearly all diagnoses (>95%). The second objective was to assess the construct validity of the DGS by examining variation in the frequency of targeted groups of diagnoses within the concepts of season, age, sex, and hospital type. A panel of general and pediatric emergency physicians used the nominal group technique and Delphi surveys to create the DGS. The primary data source used to develop the DGS was the Pediatric Emergency Care Applied Research Network (PECARN) Core Data Project (PCDP). A total of 3,041 ICD-9 codes, accounting for 98.9% of all diagnoses in the PCDP, served as the basis for creation of the DGS. The expert panel developed a DGS framework representing a clinical approach to the diagnosis and treatment of pediatric emergency patients. The resulting DGS has 21 major groups and 77 subgroups and accounts for 96.5% to 99% of diagnoses when applied to three external data sets. Variations in the frequency of targeted groups of diagnoses related to seasonality, age, sex, and site of care confirm construct validity. The DGS offers a clinically sensible method for describing pediatric ED visits by grouping ICD-9 codes in a consensus-derived classification scheme. This system may be used for research, reporting, needs assessment, and resource planning. (c) 2010 by the Society for Academic Emergency Medicine.

Telemedicine Program

NASA Technical Reports Server (NTRS)

1996-01-01

Since the 1970s, NASA has been involved in the research and demonstration of telemedicine for its potential in the care of astronauts in flight and Earth-bound applications. A combination of NASA funding, expertise and off-the-shelf computer and networking systems made telemedicine possible for a medically underserved hospital in Texas. Through two-way audio/video relay, the program links pediatric oncology specialists at the University of Texas Health Science Center in San Antonio to South Texas Hospital in Harlingen, providing easier access and better care to children with cancer. Additionally, the hospital is receiving teleclinics on pediatric oncology nursing, family counseling and tuberculosis treatment. VTEL Corporation, Sprint, and the Healthcare Open Systems and Trials Consortium also contributed staff and hardware.

Progress in pediatrics in 2011. Choices in endocrinology, gastroenterology, hemato-oncology, infectious diseases, otolaryngology, pharmacotherapy and respiratory tract illnesses

PubMed Central

2012-01-01

Main progresses in endocrinology, gastroenterology, hemato-oncology, infectious diseases, otolaryngology, pharmacotherapy, and respiratory tract illnesses selected from articles published in The Italian Journal of Pediatrics in 2011 were reviewed. Risk factors for gastroenteritis and appendicitis in developing countries may be useful in improving our understanding of these diseases. Childhood hearing impairment is a world-wide problem which continues to have an high prevalence in newborns. Among the mechanisms of diseases, obese children often have asthma and high hepcidin levels that may reduce serum iron concentrations. In cystic fibrosis, 18q distal deletion has been described as a novel mutation. Hypothyroidism in children with central nervous system infections may increase mortality rates. Infrared tympanic thermometer (IRTT) in oral mode for the measurement of body temperature may be useful in fever screening in a busy setup. In newborns, the transmission of CMV infection through breast milk may be prevented through freezing or pasteurization. Recent advances in treatment of constipation, urinary tract infections, leukemia, pain in children with cancer, neonates with sepsis or difficult weaning from mechanical ventilation will likely contribute towards optimizing management of these common disorders. The work of the Family Pediatricians Medicines for Children Research Network aims to develop competence, infrastructure, networking and education for pediatric clinical trials. PMID:22682313

Progress in pediatrics in 2011. Choices in endocrinology, gastroenterology, hemato-oncology, infectious diseases, otolaryngology, pharmacotherapy and respiratory tract illnesses.

PubMed

Caffarelli, Carlo; Santamaria, Francesca; Cesari, Silvia; Di Giorgio, Angela; Bernasconi, Sergio

2012-06-08

Main progresses in endocrinology, gastroenterology, hemato-oncology, infectious diseases, otolaryngology, pharmacotherapy, and respiratory tract illnesses selected from articles published in The Italian Journal of Pediatrics in 2011 were reviewed. Risk factors for gastroenteritis and appendicitis in developing countries may be useful in improving our understanding of these diseases. Childhood hearing impairment is a world-wide problem which continues to have an high prevalence in newborns. Among the mechanisms of diseases, obese children often have asthma and high hepcidin levels that may reduce serum iron concentrations. In cystic fibrosis, 18q distal deletion has been described as a novel mutation. Hypothyroidism in children with central nervous system infections may increase mortality rates. Infrared tympanic thermometer (IRTT) in oral mode for the measurement of body temperature may be useful in fever screening in a busy setup. In newborns, the transmission of CMV infection through breast milk may be prevented through freezing or pasteurization. Recent advances in treatment of constipation, urinary tract infections, leukemia, pain in children with cancer, neonates with sepsis or difficult weaning from mechanical ventilation will likely contribute towards optimizing management of these common disorders. The work of the Family Pediatricians Medicines for Children Research Network aims to develop competence, infrastructure, networking and education for pediatric clinical trials.

Topical Review: Unique Contributions of Magnetic Resonance Imaging to Pediatric Psychology Research.

PubMed

Jensen, Chad D; Duraccio, Kara M; Carbine, Kaylie M; Kirwan, C Brock

2016-03-01

This review aims to provide a brief introduction of the utility of magnetic resonance imaging (MRI) methods in pediatric psychology research, describe several exemplar studies that highlight the unique benefits of MRI techniques for pediatric psychology research, and detail methods for addressing several challenges inherent to pediatric MRI research. Literature review. Numerous useful applications of MRI research in pediatric psychology have been illustrated in published research. MRI methods yield information that cannot be obtained using neuropsychological or behavioral measures. Using MRI in pediatric psychology research may facilitate examination of neural structures and processes that underlie health behaviors. Challenges inherent to conducting MRI research with pediatric research participants (e.g., head movement) may be addressed using evidence-based strategies. We encourage pediatric psychology researchers to consider adopting MRI techniques to answer research questions relevant to pediatric health and illness. © The Author 2015. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Characteristics of the pediatric patients treated by the Pediatric Emergency Care Applied Research Network's affiliated EMS agencies.

PubMed

Lerner, E Brooke; Dayan, Peter S; Brown, Kathleen; Fuchs, Susan; Leonard, Julie; Borgialli, Dominic; Babcock, Lynn; Hoyle, John D; Kwok, Maria; Lillis, Kathleen; Nigrovic, Lise E; Mahajan, Prashant; Rogers, Alexander; Schwartz, Hamilton; Soprano, Joyce; Tsarouhas, Nicholas; Turnipseed, Samuel; Funai, Tomohiko; Foltin, George

2014-01-01

To describe pediatric patients transported by the Pediatric Emergency Care Applied Research Network's (PECARN's) affiliated emergency medical service (EMS) agencies and the process of submitting and aggregating data from diverse agencies. We conducted a retrospective analysis of electronic patient care data from PECARN's partner EMS agencies. Data were collected on all EMS runs for patients less than 19 years old treated between 2004 and 2006. We conducted analyses only for variables with usable data submitted by a majority of participating agencies. The investigators aggregated data between study sites by recoding it into categories and then summarized it using descriptive statistics. Sixteen EMS agencies agreed to participate. Fourteen agencies (88%) across 11 states were able to submit patient data. Two of these agencies were helicopter agencies (HEMS). Mean time to data submission was 378 days (SD 175). For the 12 ground EMS agencies that submitted data, there were 514,880 transports, with a mean patient age of 9.6 years (SD 6.4); 53% were male, and 48% were treated by advanced life support (ALS) providers. Twenty-two variables were aggregated and analyzed, but not all agencies were able to submit all analyzed variables and for most variables there were missing data. Based on the available data, median response time was 6 minutes (IQR: 4-9), scene time 15 minutes (IQR: 11-21), and transport time 9 minutes (IQR: 6-13). The most common chief complaints were traumatic injury (28%), general illness (10%), and respiratory distress (9%). Vascular access was obtained for 14% of patients, 3% received asthma medication, <1% pain medication, <1% assisted ventilation, <1% seizure medication, <1% an advanced airway, and <1% CPR. Respiratory rate, pulse, systolic blood pressure, and GCS were categorized by age and the majority of children were in the normal range except for systolic blood pressure in those under one year old. Despite advances in data definitions and increased use of electronic databases nationally, data aggregation across EMS agencies was challenging, in part due to variable data collection methods and missing data. In our sample, only a small proportion of pediatric EMS patients required prehospital medications or interventions.

Topical Review: Unique Contributions of Magnetic Resonance Imaging to Pediatric Psychology Research

PubMed Central

Duraccio, Kara M.; Carbine, Kaylie M.; Kirwan, C. Brock

2016-01-01

Objective This review aims to provide a brief introduction of the utility of magnetic resonance imaging (MRI) methods in pediatric psychology research, describe several exemplar studies that highlight the unique benefits of MRI techniques for pediatric psychology research, and detail methods for addressing several challenges inherent to pediatric MRI research. Methods Literature review. Results Numerous useful applications of MRI research in pediatric psychology have been illustrated in published research. MRI methods yield information that cannot be obtained using neuropsychological or behavioral measures. Conclusions Using MRI in pediatric psychology research may facilitate examination of neural structures and processes that underlie health behaviors. Challenges inherent to conducting MRI research with pediatric research participants (e.g., head movement) may be addressed using evidence-based strategies. We encourage pediatric psychology researchers to consider adopting MRI techniques to answer research questions relevant to pediatric health and illness. PMID:26141118

Pediatric Emergency Research Canada (PERC): Patient/Family-Informed Research Priorities for Pediatric Emergency Medicine.

PubMed

Bialy, Liza; Plint, Amy C; Freedman, Stephen B; Johnson, David W; Curran, Janet A; Stang, Antonia S

2018-06-06

A growing body of literature supports patient and public involvement in the design, prioritization and dissemination of research and evidence based medicine. The objectives of this project were to engage patients and families in developing a prioritized list of research topics for Pediatric Emergency Medicine (PEM) and to compare results with prior research prioritization initiatives in the ED (emergency department) setting. We utilized a systematic process to combine administrative data on frequency of patient presentations to the ED with multiple stakeholder input including an initial stakeholder survey followed by a modified Delphi consensus methodology consisting of two web-based surveys and a face-to-face meeting. The prioritization process resulted in a ranked list of 15 research priorities. The top five priorities were mental health presentations, pain and sedation, practice tools, quality of care delivery and resource utilization. Mental health, pain and sedation, clinical prediction rules, respiratory illnesses /wheeze, patient safety/medication error and sepsis were identified as shared priorities with prior initiatives. Topics identified in our process that were not identified in prior work included resource utilization, ED communication, antibiotic stewardship and patient/family adherence with recommendations. This work identifies key priorities for research in PEM. Comparing our results with prior initiatives in the ED setting identified shared research priorities and opportunities for collaboration among PEM research networks. This work in particular makes an important contribution to the existing literature by including the patient/family perspective missing from prior work. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Australasian nutrition research for prevention and management of child obesity: innovation and progress in the last decade.

PubMed

Golley, R K; McNaughton, S A; Collins, C E; Magarey, A; Garnett, S P; Campbell, K J; Mallan, K; Burrows, T

2014-12-01

The Food and Nutrition stream of Australasian Child and Adolescent Obesity Research Network (ACAORN) aims to improve the quality of dietary methodologies and the reporting of dietary intake within Australasian child obesity research (http://www.acaorn.org.au/streams/nutrition/). With 2012 marking ACAORN's 10th anniversary, this commentary profiles a selection of child obesity nutrition research published over the last decade by Food and Nutrition Stream members. In addition, stream activities have included the development of an online selection guide to assist researchers in their selection of appropriate dietary intake methodologies (http://www.acaorn.org.au/streams/nutrition/dietary-intake/index.php). The quantity and quality of research to guide effective child obesity prevention and treatment has increased substantially over the last decade. ACAORN provides a successful case study of how research networks can provide a collegial atmosphere to foster and coordinate research efforts in an otherwise competitive environment. © 2014 The Authors. Pediatric Obesity © 2014 International Association for the Study of Obesity.

Primary care pediatricians' perceptions of vaccine refusal in europe.

PubMed

Grossman, Zachi; van Esso, Diego; Del Torso, Stefano; Hadjipanayis, Adamos; Drabik, Anna; Gerber, Andreas; Miron, Dan

2011-03-01

An electronic survey assessing primary care pediatricians' estimations and practices regarding parents' vaccination refusal was sent to 395 members of the European Academy of Pediatrics Research in Ambulatory Setting network, with a response rate of 87%. Of respondents who vaccinate in the clinic, 93% estimated the total vaccine refusal rate as <1%. Of all respondents, 69% prefer a shared decision-making approach to handle refusing parents.

Patterns of severe injury in pediatric car crash victims: Crash Injury Research Engineering Network database.

PubMed

Brown, J Kristine; Jing, Yuezhou; Wang, Stewart; Ehrlich, Peter F

2006-02-01

Motor vehicle crashes (MVCs) account for 50% of pediatric trauma. Safety improvements are typically tested with child crash dummies using an in vitro model. The Crash Injury Research Engineering Network (CIREN) provides an in vivo validation process. Previous research suggest that children in lateral crashes or front-seat locations have higher Injury Severity Scale scores and lower Glasgow Coma Scale scores than those in frontal-impact crashes. However, specific injury patterns and crash characteristics have not been characterized. Data were collected from the CIREN multidisciplinary crash reconstruction network (10 pediatric trauma centers). Injuries were examined with regard to crash direction (frontal/lateral), restraint use, seat location, and change in velocity at impact (DeltaV). Injuries were limited to Abbreviated Injury Scale (AIS) scores of 3 or higher and included head, thoracic, abdominal, pelvic, spine, and long bone (orthopedic) injuries. Standard age groupings (0-4, 5-9, 10-14, and 15-18 years) were used. Statistical analyses used Fisher's Exact test and multiple logistic regressions. Four hundred seventeen MVCs with 2500 injuries were analyzed (males = 219, females = 198). Controlling for DeltaV and age, children in lateral-impact crashes (n = 232) were significantly more likely to suffer severe injuries to the head and thorax as compared with children in frontal crashes (n = 185), who were more likely to suffer severe spine and orthopedic injuries. Children in a front-seat (n = 236) vs those in a back-seat (n = 169) position had more injuries to the thoracic (27% vs 17%), abdominal (21% vs 13%), pelvic (11% vs 1%), and orthopedic (28% vs 10%) regions (P < .05 for all). Seat belts were protective for pelvic (5% vs 12% unbelted) and orthopedic (15% vs 40%) injuries (odds ratio = 3, P < .01 for both). A reproducible pattern of injury is noted for children involved in lateral-impact crashes characterized by head and chest injuries. The Injury Severity Scale scores were higher for children in front-seat positions. Increased lateral-impact safety measures such as mandatory side curtain airbags may decrease morbidity. Furthermore, continued public education for positioning children in the back seat of cars is warranted.

Exploring Research Topics and Trends in Nursing-related Communication in Intensive Care Units Using Social Network Analysis.

PubMed

Son, Youn-Jung; Lee, Soo-Kyoung; Nam, SeJin; Shim, Jae Lan

2018-05-04

This study used social network analysis to identify the main research topics and trends in nursing-related communication in intensive care units. Keywords from January 1967 to June 2016 were extracted from PubMed using Medical Subject Headings terms. Social network analysis was performed using Gephi software. Research publications and newly emerging topics in nursing-related communication in intensive care units were classified into five chronological phases. After the weighting was adjusted, the top five keyword searches were "conflict," "length of stay," "nursing continuing education," "family," and "nurses." During the most recent phase, research topics included "critical care nursing," "patient handoff," and "quality improvement." The keywords of the top three groups among the 10 groups identified were related to "neonatal nursing and practice guideline," "infant or pediatric and terminal care," and "family, aged, and nurse-patient relations," respectively. This study can promote a systematic understanding of communication in intensive care units by identifying topic networks. Future studies are needed to conduct large prospective cohort studies and randomized controlled trials to verify the effects of patient-centered communication in intensive care units on patient outcomes, such as length of hospital stay and mortality.

The CERTAIN Registry: a novel, web-based registry and research platform for pediatric renal transplantation in Europe.

PubMed

Plotnicki, L; Kohl, C D; Höcker, B; Krupka, K; Rahmel, A; Pape, L; Hoyer, P; Marks, S D; Webb, N J A; Söylemezoglu, O; Topaloglu, R; Szabo, A J; Seeman, T; Marlies Cornelissen, E A; Knops, N; Grenda, R; Tönshoff, B

2013-05-01

The results of pediatric renal transplantation have improved markedly in the last decade. However, a number of relevant clinical problems remain, such as organ damage caused by chronic rejection, long-term toxicity of immunosuppressive therapy, difficulty in developing tolerance-inducing protocols, secondary cardiovascular comorbidity, post-transplantation lymphoproliferative disease, suboptimal longitudinal growth, quality of life, adherence to immunosuppressive medication, and structured transition programs to adult care. These unmet clinical needs require intense collaborative and interdisciplinary clinical research. We recently founded the Cooperative European Paediatric Renal TransplAnt INitiative (CERTAIN; www.certain-registry.eu) as a research network and platform built on a novel, web-based registry. The registry's dataset provides essential information on generic kidney transplantation-related topics and also captures pediatric-specific topics, such as growth, physical and psychosocial development, and adherence. Due to its flexibility the system can be used as follows: (1) as a registry capturing a minimal or an extended dataset; (2) as a center and/or country-specific transplantation database; or (3) as a patient-specific electronic transplantation chart. The data can be exported directly from the CERTAIN web application into statistical software packages for scientific analyses. The rights regarding data ownership, evaluation, and publications are regulated in the registry's rules of procedure. Data quality is ensured by automatic software validation and a manual data review process. To avoid redundant data entry, CERTAIN has established interfaces for data change with Eurotransplant, the Collaborative Transplant Study (CTS), and the registry of the European Society of Pediatric Nephrology (ESPN) and European Renal Association - European Dialysis and Transplant Association (ERA-EDTA) (ESPN/ERA-EDTA registry). CERTAIN fulfils all regulatory and ethical requirements of the European Union and Germany, in particular, regarding patients' data privacy and security. Using modern information technology, the recently established multinational CERTAIN Registry fills a gap in Europe for collaborative 5 research and quality assurance in the field of pediatric renal transplantation. Copyright © 2013 Elsevier Inc. All rights reserved.

Variability of the institutional review board process within a national research network.

PubMed

Khan, Muhammad A; Barratt, Michelle S; Krugman, Scott D; Serwint, Janet R; Dumont-Driscoll, Marilyn

2014-06-01

To determine the variability of the institutional review board (IRB) process for a minimal risk multicenter study. Participants included 24 Continuity Research Network (CORNET) sites of the Academic Pediatric Association that participated in a cross-sectional study. Each site obtained individual institutional IRB approval. An anonymous questionnaire went to site investigators about the IRB process at their institution. Twenty-two of 24 sites (92%) responded. Preparation time ranged from 1 to 20 hours, mean of 7.1 hours. Individuals submitting ≤3 IRB applications/year required more time for completion than those submitting >3/year (P < .05). Thirteen of 22 (59%) study sites received approval with "exempt" status, and 6 (27%) approved as "expedited" studies. IRB experiences were highly variable across study sites. These findings indicate that multicenter research projects should anticipate barriers to timely study implementation. Improved IRB standardization or centralization for multicenter clinical studies would facilitate this type of practice-based clinical research.

An Exploration of Ethical Issues in Research in Children’s Health and the Environment

PubMed Central

Paulson, Jerome A.

2006-01-01

The consideration of ethical issues relating to pediatric environmental health is a recent phenomenon. Discussions of biomedical ethics, research on children, and environmental health research have a longer history. In the late 1990s, researchers at the Kennedy Krieger Institute in Baltimore, Maryland, undertook a study to compare the effectiveness of several methods of reducing lead risk in housing. In a preliminary finding in the case of Grimes v. Kennedy Krieger Institute, Inc., a Maryland court questioned the ethics of performing research on children when there is no prospect of direct benefit to those children and whether parents can consent to such research. This case dramatically raised the profile of ethical issues among the pediatric environmental health research community. To broaden the discussion of these issues and in response to the Kennedy-Krieger case, the Children’s Environmental Health Network held a working meeting on 5 and 6 March 2004 to explore this topic. The articles in this mini-monograph were prepared by the authors as a result of the workshop and represent their opinions. This article is an introduction to the workshop and a summary of the articles to follow. PMID:17035150

Research as a standard of care in PICU

PubMed Central

Zimmerman, Jerry J.; Anand, Kanwaljeet J. S.; Meert, Kathleen L.; Willson, Douglas F.; Newth, Christopher J. L.; Harrison, Rick; Carcillo, Joseph A.; Berger, John; Jenkins, Tammara L.; Nicholson, Carol; Dean, J. Michael

2016-01-01

Background Excellence in clinical care coupled with basic and applied research reflects the maturation of a medical subspecialty, advances that field, and provides objective data for identifying best practices. Pediatric intensive care units (PICU) are uniquely suited for conducting translational and clinical research. Moreover, multiple investigations have reported that a majority of parents are interested in their children’s participation in clinical research, even when the research offers no direct benefit to their child. However, such activity may generate ethical conflict with bedside care providers trying to acutely identify the best approach for an individual critically ill child. Ultimately, this conflict may diminish enthusiasm for the generation of scientific evidence that supports application of evidence-based medicine into PICU clinical standard work. Objective Provide an overview of current state PICU clinical research strengths, liabilities, opportunities, and barriers, and contrast this with an established pediatric hematology-oncology iterative research model that constitutes a learning healthcare system. Design Narrative review of medical literature published in English. Conclusions Currently most PICU therapy is not evidence-based. Developing a learning healthcare system in the PICU integrates clinical research into usual practice and fosters a culture of evidence-based learning and continual care improvement. As PICU mortality has significantly decreased, identification and validation of patient-centered, clinically relevant research outcome measures other than mortality is essential for future clinical trial design. Because most pediatric critical illness may be classified as rare diseases, participation in research networks will facilitate iterative, collaborative, multi-institutional investigations that over time identify best practices to improve PICU outcomes. Despite real ethical challenges, critically ill children and their families should have the opportunity to participate in translational/clinical research whenever feasible. PMID:26513203

Pediatric HIV Clinical Care Resources and Management Practices in Asia: A Regional Survey of the TREAT Asia Pediatric Network

PubMed Central

Bowen, Asha C.; Pang, Joselyn; Hesp, Cees; Kariminia, Azar; Sohn, Annette H.

2010-01-01

Abstract Characterizing intraregional differences in current pediatric HIV care and treatment in Asia can guide the development of clinical practice guidelines and improve the understanding of local resource availability. The Therapeutics Research, Education, and AIDS Training in Asia (TREAT Asia) Pediatric Program is a collaboration of clinics and referral hospitals studying pediatric HIV outcomes in the region. A Web-based survey to characterize clinical management practices and monitoring resources was developed and distributed to 20 sites in January 2008. Seventeen (85%) sites from 6 countries responded through April 2008; 14 (82%) were hospital-based and 16 (94%) were public facilities. Of 4050 HIV-infected children under care, 3606 (89%) were on antiretroviral treatment; 80% were on their first mono-, dual-, or triple-drug regimen and 74% were on nevirapine- or efavirenz-based regimens. Fifteen (88%) sites had consistent access to polymerase chain reaction (PCR) testing for infant diagnosis. All sites had access to CD4 testing, with 13 (76%) routinely monitoring patients every 3–6 months; 7 (41%) sites monitored viral load at 6- to 12-month intervals. Although there is some variation in clinical practices, high levels of treatment and monitoring resources were available at these sites. The availability of PCR for early infant diagnosis positions them to implement recent WHO recommendations to treat HIV-infected children younger than 1 year of age. This information will be used to develop future research and programs to support children with HIV in Asia. PMID:20059355

Effects of local institutional review board review on participation in national practice-based research network studies.

PubMed

Finch, Stacia A; Barkin, Shari L; Wasserman, Richard C; Dhepyasuwan, Niramol; Slora, Eric J; Sege, Robert D

2009-12-01

To describe the process and outcomes of local institutional review board (IRB) review for 2 Pediatric Research in Office Settings (PROS) studies. Pediatric Research in Office Settings conducted 2 national studies concerning sensitive topics: (1) Child Abuse Recognition Experience Study (CARES), an observational study of physician decision making, and (2) Safety Check, a violence prevention intervention trial. Institutional review board approval was secured by investigators' sites, the American Academy of Pediatrics, and practices with local IRBs. Practices were queried about IRB rules at PROS enrollment and study recruitment. Pediatric Research in Office Settings practices in 29 states. Eighty-eight PROS practices (75 IRBs). Main Exposure Local IRB presence. Local IRB presence, level of PROS assistance, IRB process, study participation, data collection completion, and minority enrollment. Practices requiring additional local IRB approval agreed to participate less than those that did not (CARES: 33% vs 52%; Safety Check: 41% vs 56%). Of the 88 practices requiring local IRB approval, 55 received approval, with nearly 50% needing active PROS help, many requiring consent changes (eg, contact name additions, local IRB approval stamps), and 87% beginning data collection. Median days to obtain approval were 81 (CARES) and 109 (Safety Check). Practices requiring local IRB approval were less likely to complete data collection but more likely to enroll minority patients. Local IRB review was associated with lower participation rates, substantial effort navigating the process (with approval universally granted without substantive changes), and data collection delays. When considering future reforms, the national human subject protections system should consider the potential redundancy and effect on generalizability, particularly regarding enrollment of poor urban children, related to local IRB review.

Strengthening the American Academy of Pediatric Dentistry's Public Policy Advocate Network: Identifying Advocacy Efforts and Recommendations.

PubMed

Curtis, Benjamin D; Orynich, C Ashley; Casamassimo, Paul S; Seale, N Sue; Reggiardo, Paul; Wright, Robin; Litch, C Scott

2017-09-15

The purposes of this study were to collect information on involvement, training, and barriers to participation in advocacy efforts for Public Policy Advocates (PPAs) of the American Academy of Pediatric Dentistry (AAPD) and make recommendations to the AAPD. Preliminary data were collected from the PPAs during structured AAPD program meetings, conference calls, and individual interviews. Based on these data, a survey was created, piloted, and sent electronically to all PPAs. Data were analyzed and collated by frequencies. Responses from 38 PPAs (100 percent) revealed they were involved with state legislatures and state chapters of the AAPD and American Dental Association. Eighty-two percent of the PPAs requested additional public policy training and clearer communication channels within the network. PPAs are funding their own advocacy efforts, and the time and resources spent away from patient care is a financial barrier. The Public Policy Advocate network holds a broad policy skill set and voluntarily commits time and resource to advocate for the support of the pediatric dental patient at state and federal government levels. The American Academy of Pediatric Dentistry can strengthen the PPA's self-directed leadership role at state and federal levels through formalized training, restructuring of the network, and increased resources.

Validation of the new diagnosis grouping system for pediatric emergency department visits using the International Classification of Diseases, 10th Revision.

PubMed

Lee, Jin Hee; Hong, Ki Jeong; Kim, Do Kyun; Kwak, Young Ho; Jang, Hye Young; Kim, Hahn Bom; Noh, Hyun; Park, Jungho; Song, Bongkyu; Jung, Jae Yun

2013-12-01

A clinically sensible diagnosis grouping system (DGS) is needed for describing pediatric emergency diagnoses for research, medical resource preparedness, and making national policy for pediatric emergency medical care. The Pediatric Emergency Care Applied Research Network (PECARN) developed the DGS successfully. We developed the modified PECARN DGS based on the different pediatric population of South Korea and validated the system to obtain the accurate and comparable epidemiologic data of pediatric emergent conditions of the selected population. The data source used to develop and validate the modified PECARN DGS was the National Emergency Department Information System of South Korea, which was coded by the International Classification of Diseases, 10th Revision (ICD-10) code system. To develop the modified DGS based on ICD-10 code, we matched the selected ICD-10 codes with those of the PECARN DGS by the General Equivalence Mappings (GEMs). After converting ICD-10 codes to ICD-9 codes by GEMs, we matched ICD-9 codes into PECARN DGS categories using the matrix developed by PECARN group. Lastly, we conducted the expert panel survey using Delphi method for the remaining diagnosis codes that were not matched. A total of 1879 ICD-10 codes were used in development of the modified DGS. After 1078 (57.4%) of 1879 ICD-10 codes were assigned to the modified DGS by GEM and PECARN conversion tools, investigators assigned each of the remaining 801 codes (42.6%) to DGS subgroups by 2 rounds of electronic Delphi surveys. And we assigned the remaining 29 codes (4%) into the modified DGS at the second expert consensus meeting. The modified DGS accounts for 98.7% and 95.2% of diagnoses of the 2008 and 2009 National Emergency Department Information System data set. This modified DGS also exhibited strong construct validity using the concepts of age, sex, site of care, and seasons. This also reflected the 2009 outbreak of H1N1 influenza in Korea. We developed and validated clinically feasible and sensible DGS system for describing pediatric emergent conditions in Korea. The modified PECARN DGS showed good comprehensiveness and demonstrated reliable construct validity. This modified DGS based on PECARN DGS framework may be effectively implemented for research, reporting, and resource planning in pediatric emergency system of South Korea.

Partnering health disparities research with quality improvement science in pediatrics.

PubMed

Lion, K Casey; Raphael, Jean L

2015-02-01

Disparities in pediatric health care quality are well described in the literature, yet practical approaches to decreasing them remain elusive. Quality improvement (QI) approaches are appealing for addressing disparities because they offer a set of strategies by which to target modifiable aspects of care delivery and a method for tailoring or changing an intervention over time based on data monitoring. However, few examples in the literature exist of QI interventions successfully decreasing disparities, particularly in pediatrics, due to well-described challenges in developing, implementing, and studying QI with vulnerable populations or in underresourced settings. In addition, QI interventions aimed at improving quality overall may not improve disparities, and in some cases, may worsen them if there is greater uptake or effectiveness of the intervention among the population with better outcomes at baseline. In this article, the authors review some of the challenges faced by researchers and frontline clinicians seeking to use QI to address health disparities and propose an agenda for moving the field forward. Specifically, they propose that those designing and implementing disparities-focused QI interventions reconsider comparator groups, use more rigorous evaluation methods, carefully consider the evidence for particular interventions and the context in which they were developed, directly engage the social determinants of health, and leverage community resources to build collaborative networks and engage community members. Ultimately, new partnerships between communities, providers serving vulnerable populations, and QI researchers will be required for QI interventions to achieve their potential related to health care disparity reduction. Copyright © 2015 by the American Academy of Pediatrics.

Adapting practice-based intervention research to electronic environments: opportunities and complexities at two institutions.

PubMed

Stille, Christopher J; Lockhart, Steven A; Maertens, Julie A; Madden, Christi A; Darden, Paul M

2015-01-01

Primary care practice-based research has become more complex with increased use of electronic health records (EHRs). Little has been reported about changes in study planning and execution that are required as practices change from paper-based to electronic-based environments. We describe the evolution of a pediatric practice-based intervention study as it was adapted for use in the electronic environment, to enable other practice-based researchers to plan efficient, effective studies. We adapted a paper-based pediatric office-level intervention to enhance parent-provider communication about subspecialty referrals for use in two practice-based research networks (PBRNs) with partially and fully electronic environments. We documented the process of adaptation and its effect on study feasibility and efficiency, resource use, and administrative and regulatory complexities, as the study was implemented in the two networks. Considerable time and money was required to adapt the paper-based study to the electronic environment, requiring extra meetings with institutional EHR-, regulatory-, and administrative teams, and increased practice training. Institutional unfamiliarity with using EHRs in practice-based research, and the consequent need to develop new policies, were major contributors to delays. Adapting intervention tools to the EHR and minimizing practice disruptions was challenging, but resulted in several efficiencies as compared with a paper-based project. In particular, recruitment and tracking of subjects and data collection were easier and more efficient. Practice-based intervention research in an electronic environment adds considerable cost and time at the outset of a study, especially for centers unfamiliar with such research. Efficiencies generated have the potential of easing the work of study enrollment, subject tracking, and data collection.

In Children With Nonalcoholic Fatty Liver Disease, Zone 1 Steatosis Is Associated With Advanced Fibrosis.

PubMed

Africa, Jonathan A; Behling, Cynthia A; Brunt, Elizabeth M; Zhang, Nan; Luo, Yunjun; Wells, Alan; Hou, Jiayi; Belt, Patricia H; Kohil, Rohit; Lavine, Joel E; Molleston, Jean P; Newton, Kimberly P; Whitington, Peter F; Schwimmer, Jeffrey B

2018-03-01

Focal zone 1 steatosis, although rare in adults with nonalcoholic fatty liver disease (NAFLD), does occur in children with NAFLD. We investigated whether focal zone 1 steatosis and focal zone 3 steatosis are distinct subphenotypes of pediatric NAFLD. We aimed to determine associations between the zonality of steatosis and demographic, clinical, and histologic features in children with NAFLD. We performed a cross-sectional study of baseline data from 813 children (age <18 years; mean age, 12.8 ± 2.7 years). The subjects had biopsy-proven NAFLD and were enrolled in the Nonalcoholic Steatohepatitis Clinical Research Network. Liver histology was reviewed using the Nonalcoholic Steatohepatitis Clinical Research Network scoring system. Zone 1 steatosis was present in 18% of children with NAFLD (n = 146) and zone 3 steatosis was present in 32% (n = 244). Children with zone 1 steatosis were significantly younger (10 vs 14 years; P < .001) and a significantly higher proportion had any fibrosis (81% vs 51%; P < .001) or advanced fibrosis (13% vs 5%; P < .001) compared with children with zone 3 steatosis. In contrast, children with zone 3 steatosis were significantly more likely to have steatohepatitis (30% vs 6% in children with zone 1 steatosis; P < .001). Children with zone 1 or zone 3 distribution of steatosis have an important subphenotype of pediatric NAFLD. Children with zone 1 steatosis are more likely to have advanced fibrosis and children with zone 3 steatosis are more likely to have steatohepatitis. To achieve a comprehensive understanding of pediatric NAFLD, studies of pathophysiology, natural history, and response to treatment should account for the zonality of steatosis. Copyright © 2018 AGA Institute. Published by Elsevier Inc. All rights reserved.

Potential Acceptability of a Pediatric Ventilator Management Computer Protocol.

PubMed

Sward, Katherine A; Newth, Christopher J L; Khemani, Robinder G; Page, Kent; Meert, Kathleen L; Carcillo, Joseph A; Shanley, Thomas P; Moler, Frank W; Pollack, Murray M; Dalton, Heidi J; Wessel, David L; Berger, John T; Berg, Robert A; Harrison, Rick E; Doctor, Allan; Dean, J Michael; Holobkov, Richard; Jenkins, Tammara L; Nicholson, Carol E

2017-11-01

To examine issues regarding the granularity (size/scale) and potential acceptability of recommendations in a ventilator management protocol for children with pediatric acute respiratory distress syndrome. Survey/questionnaire. The eight PICUs in the Collaborative Pediatric Critical Care Research Network. One hundred twenty-two physicians (attendings and fellows). None. We used an online questionnaire to examine attitudes and assessed recommendations with 50 clinical scenarios. Overall 80% of scenario recommendations were accepted. Acceptance did not vary by provider characteristics but did vary by ventilator mode (high-frequency oscillatory ventilation 83%, pressure-regulated volume control 82%, pressure control 75%; p = 0.002) and variable adjusted (ranging from 88% for peak inspiratory pressure and 86% for FIO2 changes to 69% for positive end-expiratory pressure changes). Acceptance did not vary based on child size/age. There was a preference for smaller positive end-expiratory pressure changes but no clear granularity preference for other variables. Although overall acceptance rate for scenarios was good, there was little consensus regarding the size/scale of ventilator setting changes for children with pediatric acute respiratory distress syndrome. An acceptable protocol could support robust evaluation of ventilator management strategies. Further studies are needed to determine if adherence to an explicit protocol leads to better outcomes.

Outcomes of liver transplantation with liver grafts from pediatric donors used in adult recipients.

PubMed

Croome, Kristopher P; Lee, David D; Burns, Justin M; Saucedo-Crespo, Hector; Perry, Dana K; Nguyen, Justin H; Taner, C Burcin

2016-08-01

Although there is an agreement that liver grafts from pediatric donors (PDs) should ideally be used for pediatric patients, there remain situations when these grafts are turned down for pediatric recipients and are then offered to adult recipients. The present study aimed to investigate the outcomes of using these grafts for liver transplantation (LT) in adult patients. Data from all patients undergoing LT between 2002 and 2014 were obtained from the United Network for Organ Sharing Standard Analysis and Research file. Adult recipients undergoing LT were divided into 2 groups: those receiving a pediatric liver graft (pediatric-to-adult group) and those receiving a liver graft from adult donors (adult-to-adult group). A separate subgroup analysis comparing the PDs used for adult recipients and those used for pediatric recipients was also performed. Patient and graft survival were not significantly different between pediatric-to-adult and adult-to-adult groups (P = 0.08 and P = 0.21, respectively). Hepatic artery thrombosis as the cause for graft loss was higher in the pediatric-to-adult group (3.6%) than the adult-to-adult group (1.9%; P < 0.001). A subanalysis looking at the pediatric-to-adult group found that patients with a predicted graft-to-recipient weight ratio (GRWR) < 0.8 had a higher 90-day graft loss rate than those with a GRWR ≥ 0.8 (39% versus 9%; P < 0.001). PDs used for adult recipients had a higher proportion of donors with elevated aspartate aminotransferase/alanine aminotransferase (20% vs. 12%; P < 0.001), elevated creatinine (11% vs. 4%; P < 0.001), donation after cardiac death donors (12% vs. 0.9%; P < 0.001), and were hepatitis B virus core positive (1% vs. 0.3%; P = 0.002) than PDs used for pediatric recipients. In conclusion, acceptable patient and graft survival can be achieved with the use of pediatric liver grafts in adult recipients, when these grafts have been determined to be inappropriate for usage in the pediatric population. Liver Transplantation 22 1099-1106 2016 AASLD. © 2016 American Association for the Study of Liver Diseases.

Implementation of a CT Scan Practice Guideline for Pediatric Trauma Patients Reduces Unnecessary Scans Without Impacting Outcomes.

PubMed

McGrew, Patrick R; Chestovich, Paul J; Fisher, Jay D; Kuhls, Deborah A; Fraser, Douglas R; Patel, Purvi P; Katona, Chad W; Saquib, Syed; Fildes, John J

2018-05-04

Computed Tomography (CT) scans are useful in the evaluation of trauma patients, but are costly and pose risks from ionizing radiation in children. Recent literature has demonstrated the utility of CT scan guidelines in the management of pediatric trauma. This study objective is to review our treatment of pediatric blunt trauma patients and evaluate CT utilization before and after CT-guideline implementation. Our Pediatric Level 2 Trauma Center (TC) implemented a CT scan practice guideline for pediatric trauma patients in March 2014. The guideline recommended for or against CT of the head and abdomen/pelvis utilizing published criteria from the Pediatric Emergency Care and Research Network (PECARN). There was no chest CT guideline. We reviewed all pediatric trauma patients for CT scans obtained during initial evaluation before and after guideline implementation, excluding inpatient scans. The Trauma Registry Database was queried to include all pediatric (age<15) trauma patients seen in our TC from 2010-2016, excluding penetrating mechanism and deaths in the TC. Scans were considered positive if organ injury was detected. Primary outcome was the proportion of patients undergoing CT and percent positive CTs. Secondary outcomes were hospital length of stay (LOS), readmissions, and mortality. Categorical and continuous variables were analyzed with Chi-square and Wilcoxon rank-sum tests, respectively. P<0.05 was considered significant. We identified 1934 patients: 1106 pre- and 828 post-guideline. Absolute reductions in head, chest, and abdomen/pelvis CT scans were 17.7%, 11.5%, and 18.8% respectively (p<0.001). Percent positive head CTs were equivalent, but percent positive chest and abdomen CT increased after implementation. Secondary outcomes were unchanged. Implementation of a pediatric CT guideline significantly decreases CT utilization, reducing the radiation exposure without a difference in outcome. Trauma centers treating pediatric patients should adopt similar guidelines to decrease unnecessary CT scans in children. Level IV, Therapeutic Study.

Decreasing unnecessary utilization in acute bronchiolitis care: results from the value in inpatient pediatrics network.

PubMed

Ralston, Shawn; Garber, Matthew; Narang, Steve; Shen, Mark; Pate, Brian; Pope, John; Lossius, Michele; Croland, Trina; Bennett, Jeff; Jewell, Jennifer; Krugman, Scott; Robbins, Elizabeth; Nazif, Joanne; Liewehr, Sheila; Miller, Ansley; Marks, Michelle; Pappas, Rita; Pardue, Jeanann; Quinonez, Ricardo; Fine, Bryan R; Ryan, Michael

2013-01-01

Acute viral bronchiolitis is the most common diagnosis resulting in hospital admission in pediatrics. Utilization of non-evidence-based therapies and testing remains common despite a large volume of evidence to guide quality improvement efforts. Our objective was to reduce utilization of unnecessary therapies in the inpatient care of bronchiolitis across a diverse network of clinical sites. We formed a voluntary quality improvement collaborative of pediatric hospitalists for the purpose of benchmarking the use of bronchodilators, steroids, chest radiography, chest physiotherapy, and viral testing in bronchiolitis using hospital administrative data. We shared resources within the network, including protocols, scores, order sets, and key bibliographies, and established group norms for decreasing utilization. Aggregate data on 11,568 hospitalizations for bronchiolitis from 17 centers was analyzed for this report. The network was organized in 2008. By 2010, we saw a 46% reduction in overall volume of bronchodilators used, a 3.4 dose per patient absolute decrease in utilization (95% confidence interval [CI] 1.4-5.8). Overall exposure to any dose of bronchodilator decreased by 12 percentage points as well (95% CI 5%-25%). There was also a statistically significant decline in chest physiotherapy usage, but not for steroids, chest radiography, or viral testing. Benchmarking within a voluntary pediatric hospitalist collaborative facilitated decreased utilization of bronchodilators and chest physiotherapy in bronchiolitis. Copyright © 2012 Society of Hospital Medicine.

Antibiotic resistance patterns of outpatient pediatric urinary tract infections.

PubMed

Edlin, Rachel S; Shapiro, Daniel J; Hersh, Adam L; Copp, Hillary L

2013-07-01

We characterize the current national patterns of antibiotic resistance of outpatient pediatric urinary tract infection. We examined outpatient urinary isolates from patients younger than 18 years in 2009 using The Surveillance Network®, a database with antibiotic susceptibility results and patient demographic data from 195 United States hospitals. We determined the prevalence and antibiotic resistance patterns for the 6 most common uropathogens, ie Escherichia coli, Proteus mirabilis, Klebsiella, Enterobacter, Pseudomonas aeruginosa and Enterococcus. We compared differences in uropathogen prevalence between males and females using chi-square analysis. We identified 25,418 outpatient urinary isolates. E. coli was the most common uropathogen overall but the prevalence of E. coli was higher among females (83%) than males (50%, p <0.001). Other common species among males were Enterococcus (17%), P. mirabilis (11%) and Klebsiella (10%). However, these uropathogens each accounted for 5% or less of female isolates (p <0.001). Resistance among E. coli was highest for trimethoprim-sulfamethoxazole (24%) but lower for nitrofurantoin (less than 1%) and cephalothin (15%). Compared to 2002 Surveillance Network data, E. coli resistance rates increased for trimethoprim-sulfamethoxazole (from 23% to 31% in males and from 20% to 23% in females) and ciprofloxacin (from 1% to 10% and from 0.6% to 4%, respectively). E. coli remains the most common pediatric uropathogen. Although widely used, trimethoprim-sulfamethoxazole is a poor empirical choice for pediatric urinary tract infections in many areas due to high resistance rates. First-generation cephalosporins and nitrofurantoin are appropriate narrow-spectrum alternatives given their low resistance rates. Local antibiograms should be used to assist with empirical urinary tract infection treatment. Copyright © 2013 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.

Urine testing and urinary tract infections in febrile infants seen in office settings: the Pediatric Research in Office Settings' Febrile Infant Study.

PubMed

Newman, Thomas B; Bernzweig, Jane A; Takayama, John I; Finch, Stacia A; Wasserman, Richard C; Pantell, Robert H

2002-01-01

To determine the predictors and results of urine testing of young febrile infants seen in office settings. Prospective cohort study. Offices of 573 pediatric practitioners from 219 practices in the American Academy of Pediatrics Pediatric Research in Office Settings' research network. A total of 3066 infants 3 months or younger with temperatures of 38 degrees C or higher were evaluated and treated according to the judgment of their practitioners. Urine testing results, early and late urinary tract infections (UTIs), and UTIs with bacteremia. Fifty-four percent of the infants initially had urine tested, of whom 10% had a UTI. The height of the fever was associated with urine testing and a UTI among those tested (adjusted odds ratio per degree Celsius, 2.2 for both). Younger age, ill appearance, and lack of a fever source were associated with urine testing but not with a UTI, whereas lack of circumcision (adjusted odds ratio, 11.6), female sex (adjusted odds ratio, 5.4), and longer duration of fever (adjusted odds ratio, 1.8 for fever lasting > or = 24 hours) were not associated with urine testing but were associated with a UTI. Bacteremia accompanied the UTI in 10% of the patients, including 17% of those younger than 1 month. Among 807 infants not initially tested or treated with antibiotics, only 2 had a subsequent documented UTI; both did well. Practitioners order urine tests selectively, focusing on younger and more ill-appearing infants and on those without an apparent fever source. Such selective urine testing, with close follow-up, was associated with few late UTIs in this large study. Urine testing should focus particularly on uncircumcised boys, girls, the youngest and sickest infants, and those with persistent fever.

Consensus Statement on Research Definitions for Drug-Resistant Tuberculosis in Children.

PubMed

Seddon, James A; Perez-Velez, Carlos M; Schaaf, H Simon; Furin, Jennifer J; Marais, Ben J; Tebruegge, Marc; Detjen, Anne; Hesseling, Anneke C; Shah, Sarita; Adams, Lisa V; Starke, Jeffrey R; Swaminathan, Soumya; Becerra, Mercedes C

2013-06-01

Few children with drug-resistant (DR) tuberculosis (TB) are identified, diagnosed, and given an appropriate treatment. The few studies that have described this vulnerable population have used inconsistent definitions. The World Health Organization (WHO) definitions used for adults with DR-TB and for children with drug-susceptible TB are not always appropriate for children with DR-TB. The Sentinel Project on Pediatric Drug-Resistant Tuberculosis was formed in 2011 as a network of experts and stakeholders in childhood DR-TB. An early priority was to establish standardized definitions for key parameters in order to facilitate study comparisons and the development of an evidence base to guide future clinical management. This consensus statement proposes standardized definitions to be used in research. In particular, it suggests consistent terminology, as well as definitions for measures of exposure, drug resistance testing, previous episodes and treatment, certainty of diagnosis, site and severity of disease, adverse events, and treatment outcome. © The Author 2013. Published by Oxford University Press on behalf of the Pediatric Infectious Diseases Society.

Ethical issues in neonatal and pediatric clinical trials.

PubMed

Laventhal, Naomi; Tarini, Beth A; Lantos, John

2012-10-01

Children have been identified as uniquely vulnerable clinical research subjects since the early 1970s. This article reviews the historical underpinnings of this designation, the current regulatory framework for pediatric and neonatal research, and common problems in pediatric research oversight. It also presents 3 areas of pediatric and neonatal research (genomic screening, healthy children donating stem cells, and therapeutic hypothermia for neonates with hypoxic-ischemic encephalopathy) that highlight contemporary challenges in pediatric research ethics, including balancing risk and benefit, informed consent and assent, and clinical equipoise. Copyright © 2012 Elsevier Inc. All rights reserved.

Are pediatric Open Access journals promoting good publication practice? An analysis of author instructions.

PubMed

Meerpohl, Joerg J; Wolff, Robert F; Antes, Gerd; von Elm, Erik

2011-04-09

Several studies analyzed whether conventional journals in general medicine or specialties such as pediatrics endorse recommendations aiming to improve publication practice. Despite evidence showing benefits of these recommendations, the proportion of endorsing journals has been moderate to low and varied considerably for different recommendations. About half of pediatric journals indexed in the Journal Citation Report referred to the Uniform Requirements for Manuscripts of the International Committee of Medical Journal Editors (ICMJE) but only about a quarter recommended registration of trials. We aimed to investigate to what extent pediatric open-access (OA) journals endorse these recommendations. We hypothesized that a high proportion of these journals have adopted recommendations on good publication practice since OA electronic publishing has been associated with a number of editorial innovations aiming at improved access and transparency. We identified 41 journals publishing original research in the subject category "Health Sciences, Medicine (General), Pediatrics" of the Directory of Open Access Journals http://www.doaj.org. From the journals' online author instructions we extracted information regarding endorsement of four domains of editorial policy: the Uniform Requirements for Manuscripts, trial registration, disclosure of conflicts of interest and five major reporting guidelines such as the CONSORT (Consolidated Standards of Reporting Trials) statement. Two investigators collected data independently. The Uniform Requirements were mentioned by 27 (66%) pediatric OA journals. Thirteen (32%) required or recommended trial registration prior to publication of a trial report. Conflict of interest policies were stated by 25 journals (61%). Advice about reporting guidelines was less frequent: CONSORT was referred to by 12 journals (29%) followed by other reporting guidelines (MOOSE, PRISMA or STARD) (8 journals, 20%) and STROBE (3 journals, 7%). The EQUATOR network, a platform of several guideline initiatives, was acknowledged by 4 journals (10%). Journals published by OA publishing houses gave more guidance than journals published by professional societies or other publishers. Pediatric OA journals mentioned certain recommendations such as the Uniform Requirements or trial registration more frequently than conventional journals; however, endorsement is still only moderate. Further research should confirm these exploratory findings in other medical fields and should clarify what the motivations and barriers are in implementing such policies.

Are pediatric Open Access journals promoting good publication practice? An analysis of author instructions

PubMed Central

2011-01-01

Background Several studies analyzed whether conventional journals in general medicine or specialties such as pediatrics endorse recommendations aiming to improve publication practice. Despite evidence showing benefits of these recommendations, the proportion of endorsing journals has been moderate to low and varied considerably for different recommendations. About half of pediatric journals indexed in the Journal Citation Report referred to the Uniform Requirements for Manuscripts of the International Committee of Medical Journal Editors (ICMJE) but only about a quarter recommended registration of trials. We aimed to investigate to what extent pediatric open-access (OA) journals endorse these recommendations. We hypothesized that a high proportion of these journals have adopted recommendations on good publication practice since OA electronic publishing has been associated with a number of editorial innovations aiming at improved access and transparency. Methods We identified 41 journals publishing original research in the subject category "Health Sciences, Medicine (General), Pediatrics" of the Directory of Open Access Journals http://www.doaj.org. From the journals' online author instructions we extracted information regarding endorsement of four domains of editorial policy: the Uniform Requirements for Manuscripts, trial registration, disclosure of conflicts of interest and five major reporting guidelines such as the CONSORT (Consolidated Standards of Reporting Trials) statement. Two investigators collected data independently. Results The Uniform Requirements were mentioned by 27 (66%) pediatric OA journals. Thirteen (32%) required or recommended trial registration prior to publication of a trial report. Conflict of interest policies were stated by 25 journals (61%). Advice about reporting guidelines was less frequent: CONSORT was referred to by 12 journals (29%) followed by other reporting guidelines (MOOSE, PRISMA or STARD) (8 journals, 20%) and STROBE (3 journals, 7%). The EQUATOR network, a platform of several guideline initiatives, was acknowledged by 4 journals (10%). Journals published by OA publishing houses gave more guidance than journals published by professional societies or other publishers. Conclusions Pediatric OA journals mentioned certain recommendations such as the Uniform Requirements or trial registration more frequently than conventional journals; however, endorsement is still only moderate. Further research should confirm these exploratory findings in other medical fields and should clarify what the motivations and barriers are in implementing such policies. PMID:21477335

Pediatric palliative care and eHealth opportunities for patient-centered care.

PubMed

Madhavan, Subha; Sanders, Amy E; Chou, Wen-Ying Sylvia; Shuster, Alex; Boone, Keith W; Dente, Mark A; Shad, Aziza T; Hesse, Bradford W

2011-05-01

Pediatric palliative care currently faces many challenges including unnecessary pain from insufficiently personalized treatment, doctor-patient communication breakdowns, and a paucity of usable patient-centric information. Recent advances in informatics for consumer health through eHealth initiatives have the potential to bridge known communication gaps, but overall these technologies remain under-utilized in practice. This paper seeks to identify effective uses of existing and developing health information technology (HIT) to improve communications and care within the clinical setting. A needs analysis was conducted by surveying seven pediatric oncology patients and their extended support network at the Lombardi Pediatric Clinic at Georgetown University Medical Center in May and June of 2010. Needs were mapped onto an existing inventory of emerging HIT technologies to assess what existing informatics solutions could effectively bridge these gaps. Through the patient interviews, a number of communication challenges and needs in pediatric palliative cancer care were identified from the interconnected group perspective surrounding each patient. These gaps mapped well, in most cases, to existing or emerging cyberinfrastructure. However, adoption and adaptation of appropriate technologies could improve, including for patient-provider communication, behavioral support, pain assessment, and education, all through integration within existing work flows. This study provides a blueprint for more optimal use of HIT technologies, effectively utilizing HIT standards-based technology solutions to improve communication. This research aims to further stimulate the development and adoption of interoperable, standardized technologies and delivery of context-sensitive information to substantially improve the quality of care patients receive within pediatric palliative care clinics and other settings. Copyright © 2011 American Journal of Preventive Medicine. All rights reserved.

Pathogen Distribution and Antimicrobial Resistance Among Pediatric Healthcare-Associated Infections Reported to the National Healthcare Safety Network, 2011-2014.

PubMed

Lake, Jason G; Weiner, Lindsey M; Milstone, Aaron M; Saiman, Lisa; Magill, Shelley S; See, Isaac

2018-01-01

OBJECTIVE To describe pathogen distribution and antimicrobial resistance patterns for healthcare-associated infections (HAIs) reported to the National Healthcare Safety Network (NHSN) from pediatric locations during 2011-2014. METHODS Device-associated infection data were analyzed for central line-associated bloodstream infection (CLABSI), catheter-associated urinary tract infections (CAUTI), ventilator-associated pneumonia (VAP), and surgical site infection (SSI). Pooled mean percentage resistance was calculated for a variety of pathogen-antimicrobial resistance pattern combinations and was stratified by location for device-associated infections (neonatal intensive care units [NICUs], pediatric intensive care units [PICUs], pediatric oncology and pediatric wards) and by surgery type for SSIs. RESULTS From 2011 to 2014, 1,003 hospitals reported 20,390 pediatric HAIs and 22,323 associated pathogens to the NHSN. Among all HAIs, the following pathogens accounted for more than 60% of those reported: Staphylococcus aureus (17%), coagulase-negative staphylococci (17%), Escherichia coli (11%), Klebsiella pneumoniae and/or oxytoca (9%), and Enterococcus faecalis (8%). Among device-associated infections, resistance was generally lower in NICUs than in other locations. For several pathogens, resistance was greater in pediatric wards than in PICUs. The proportion of organisms resistant to carbapenems was low overall but reached approximately 20% for Pseudomonas aeruginosa from CLABSIs and CAUTIs in some locations. Among SSIs, antimicrobial resistance patterns were similar across surgical procedure types for most pathogens. CONCLUSION This report is the first pediatric-specific description of antimicrobial resistance data reported to the NHSN. Reporting of pediatric-specific HAIs and antimicrobial resistance data will help identify priority targets for infection control and antimicrobial stewardship activities in facilities that provide care for children. Infect Control Hosp Epidemiol 2018;39:1-11.

Automatic detection of kidney in 3D pediatric ultrasound images using deep neural networks

NASA Astrophysics Data System (ADS)

Tabrizi, Pooneh R.; Mansoor, Awais; Biggs, Elijah; Jago, James; Linguraru, Marius George

2018-02-01

Ultrasound (US) imaging is the routine and safe diagnostic modality for detecting pediatric urology problems, such as hydronephrosis in the kidney. Hydronephrosis is the swelling of one or both kidneys because of the build-up of urine. Early detection of hydronephrosis can lead to a substantial improvement in kidney health outcomes. Generally, US imaging is a challenging modality for the evaluation of pediatric kidneys with different shape, size, and texture characteristics. The aim of this study is to present an automatic detection method to help kidney analysis in pediatric 3DUS images. The method localizes the kidney based on its minimum volume oriented bounding box) using deep neural networks. Separate deep neural networks are trained to estimate the kidney position, orientation, and scale, making the method computationally efficient by avoiding full parameter training. The performance of the method was evaluated using a dataset of 45 kidneys (18 normal and 27 diseased kidneys diagnosed with hydronephrosis) through the leave-one-out cross validation method. Quantitative results show the proposed detection method could extract the kidney position, orientation, and scale ratio with root mean square values of 1.3 +/- 0.9 mm, 6.34 +/- 4.32 degrees, and 1.73 +/- 0.04, respectively. This method could be helpful in automating kidney segmentation for routine clinical evaluation.

Caring for Kids: Bridging Gaps in Pediatric Emergency Care Through Community Education and Outreach.

PubMed

Luckstead-Gosdin, Ann; Vinson, Lori; Greenwell, Cynthia; Tweed, Jefferson

2017-06-01

The Pediatric Emergency Services Network (PESN) was developed to provide ongoing continuing education on pediatric guidelines and pediatric emergency care to rural and nonpediatric hospitals, physicians, nurses, and emergency personnel. A survey was developed and given to participants attending PESN educational events to determine the perceived benefit and application to practice of the PESN outreach program. Overall, 91% of participants surveyed reported agreement that PESN educational events were beneficial to their clinical practice, provided them with new knowledge, and made them more knowledgeable about pediatric emergency care. Education and outreach programs can be beneficial to health care workers' educational needs. Copyright © 2017 Elsevier Inc. All rights reserved.

A Network of Experts on Children's Environmental Health (2015)

EPA Pesticide Factsheets

This brochure provides a general introduction to the Pediatric Environmental Health Specialty Units network. PEHSUs offer advice and information on prevention, diagnosis, management, and treatment of environmentally related health effects.

Variation in Sepsis Evaluation Across a National Network of Nurseries.

PubMed

Mukhopadhyay, Sagori; Taylor, James A; Von Kohorn, Isabelle; Flaherman, Valerie; Burgos, Anthony E; Phillipi, Carrie A; Dhepyasuwan, Nui; King, Elizabeth; Dhudasia, Miren; Puopolo, Karen M

2017-03-01

The extent to which clinicians use currently available guidelines for early-onset sepsis (EOS) screening has not been described. The Better Outcomes through Research for Newborns network represents 97 nurseries in 34 states across the United States. The objective of this study was to describe EOS risk management strategies across a national sample of newborn nurseries. A Web-based survey was sent to each Better Outcomes through Research for Newborns network nursery site representative. Nineteen questions addressed specific practices for assessing and managing well-appearing term newborns identified at risk for EOS. Responses were received from 81 (83%) of 97 nurseries located in 33 states. Obstetric diagnosis of chorioamnionitis was the most common factor used to identify risk for EOS (79 of 81). Among well-appearing term infants with concern for maternal chorioamnionitis, 51 of 79 sites used American Academy of Pediatrics or Centers for Disease Control and Prevention guidelines to inform clinical care; 11 used a published sepsis risk calculator; and 2 used clinical observation alone. Complete blood cell count (94.8%) and C-reactive protein (36.4%) were the most common laboratory tests obtained and influenced duration of empirical antibiotics at 13% of the sites. Some degree of mother-infant separation was required for EOS evaluation at 95% of centers, and separation for the entire duration of antibiotic therapy was required in 40% of the sites. Substantial variation exists in newborn EOS risk assessment, affecting the definition of risk, the level of medical intervention, and ultimately mother-infant separation. Identification of the optimal approach to EOS risk assessment and standardized implementation of such an approach could affect care of a large proportion of newborns. Copyright © 2017 by the American Academy of Pediatrics.

Precision Medicine in NCI’s National Clinical Trials Network: Progress and Lessons Learned

Cancer.gov

NCI’s Jeff Abrams, M.D., Acting Director for Clinical Research in the Division of Cancer Treatment and Diagnosis (DCTD) and Associate Director of the Cancer Therapy Evaluation Program (CTEP) and Nita Seibel, M.D., Head of the Pediatric Solid Tumor Therapeutics in the Clinical Investigations Branch of CTEP, DCTD will host a Google Hangout on Air. The discussion will be moderated by Andrea Denicoff, R.N., N.P, Head, NCTN Clinical Trials Operations in the Investigational Drug Branch of CTEP, DCTD.

Roles for children's hospitals in pediatric collaborative improvement networks.

PubMed

Miller, Marlene

2013-06-01

Children's hospitals represent a significant opportunity to reduce morbidity, mortality, and costs, particularly for children with complex chronic conditions (CCCs) who comprise a disproportionate and growing share of admissions, readmissions, and resource use. Most children with CCCs are in some way associated with a children's hospital, and the subspecialists who care for them are primarily concentrated in the ≈ 200 children's hospitals in the United States. Children's hospitals and their associated subspecialty clinics are uniquely positioned to achieve significant outcomes and cost savings through coordinated quality-improvement efforts. However, even the largest children's hospital has relatively small volumes of patients with any given condition. Only by linking children's hospitals in networks can a sufficient "N" be achieved to build the evidence for what works for children. Large-scale pediatric collaborative network exemplars have demonstrated the ability to improve outcomes, reduce costs, and spread changes found to be effective. Substantial opportunities exist for networks to expand to additional conditions, improvement topics, and sites, but financial barriers exist. Although much of their participation has been funded as "pay to participate" efforts by the hospitals themselves, most financial benefits accrue to payers. As health care reform becomes a reality and financial pressures intensify, it will become increasingly difficult for children's hospitals to serve as the primary source of support for networks. Partnerships between children's hospitals and national payers to support collaborative networks are needed, and these partnerships have the potential to significantly improve pediatric care and outcomes, particularly for children with CCCs.

Methodological and Ethical Issues in Pediatric Medication Safety Research.

PubMed

Carpenter, Delesha; Gonzalez, Daniel; Retsch-Bogart, George; Sleath, Betsy; Wilfond, Benjamin

2017-09-01

In May 2016, the Eshelman School of Pharmacy at The University of North Carolina at Chapel Hill convened the PharmSci conference to address the topic of "methodological and ethical issues in pediatric medication safety research." A multidisciplinary group of experts representing a diverse array of perspectives, including those of the US Food and Drug Administration, children's hospitals, and academia, identified important considerations for pediatric medication safety research and opportunities to advance the field. This executive summary describes current challenges that clinicians and researchers encounter related to pediatric medication safety research and identifies innovative and ethically sound methodologies to address these challenges to improve children's health. This article addresses 5 areas: (1) pediatric drug development and drug trials; (2) conducting comparative effectiveness research in pediatric populations; (3) child and parent engagement on study teams; (4) improving communication with children and parents; and (5) assessing child-reported outcomes and adverse drug events. Copyright © 2017 by the American Academy of Pediatrics.

Applying the cube model to pediatric psychology: development of research competency skills at the doctoral level.

PubMed

Madan-Swain, Avi; Hankins, Shirley L; Gilliam, Margaux Barnes; Ross, Kelly; Reynolds, Nina; Milby, Jesse; Schwebel, David C

2012-03-01

This article considers the development of research competencies in professional psychology and how that movement might be applied to training in pediatric psychology. The field of pediatric psychology has a short but rich history, and experts have identified critical competencies. However, pediatric psychology has not yet detailed a set of research-based competencies. This article initially reviews the competency initiative in professional psychology, including the cube model as it relates to research training. Next, we review and adapt the knowledge-based/foundational and applied/functional research competencies proposed by health psychology into a cube model for pediatric psychology. We focus especially on graduate-level training but allude to its application throughout professional development. We present the cube model as it is currently being applied to the development of a systematic research competency evaluation for graduate training at our medical/clinical psychology doctoral program at the University of Alabama at Birmingham. Based on the review and synthesis of the literature on research competency in professional psychology we propose future initiatives to develop these competencies for the field of pediatric psychology. The cube model can be successfully applied to the development of research training competencies in pediatric psychology. Future research should address the development, implementation, and assessment of the research competencies for training and career development of future pediatric psychologists.

EXPRESS--Examining Pediatric Resuscitation Education Using Simulation and Scripting. The birth of an international pediatric simulation research collaborative--from concept to reality.

PubMed

Cheng, Adam; Hunt, Elizabeth A; Donoghue, Aaron; Nelson, Kristen; Leflore, Judy; Anderson, JoDee; Eppich, Walter; Simon, Robert; Rudolph, Jenny; Nadkarni, Vinay

2011-02-01

Over the past decade, medical simulation has evolved into an essential component of pediatric resuscitation education and team training. Evidence to support its value as an adjunct to traditional methods of education is expanding; however, large multicenter studies are very rare. Simulation-based researchers currently face many challenges related to small sample sizes, poor generalizability, and paucity of clinically proven and relevant outcome measures. The Examining Pediatric Resuscitation Education Using Simulation and Scripting (EXPRESS) pediatric simulation research collaborative was formed in an attempt to directly address and overcome these challenges. The primary mission of the EXPRESS collaborative is to improve the delivery of medical care to critically ill children by answering important research questions pertaining to pediatric resuscitation and education and is focused on using simulation either as a key intervention of interest or as the outcome measurement tool. Going forward, the collaborative aims to expand its membership internationally and collectively identify pediatric resuscitation and simulation-based research priorities and use these to guide future projects. Ultimately, we hope that with innovative and high-quality research, the EXPRESS pediatric simulation research collaborative will help to build momentum for simulation-based research on an international level. Copyright © 2011 Society for Simulation in Healthcare

Electronic Medical Records (EMRs), Epidemiology, and Epistemology: Reflections on EMRs and Future Pediatric Clinical Research

PubMed Central

Wasserman, Richard C.

2011-01-01

Electronic medical records (EMRs) are increasingly common in pediatric patient care. EMR data represent a relatively novel and rich resource for clinical research. The fact, however, that pediatric EMR data are collected for the purposes of clinical documentation and billing rather than research creates obstacles to their use in scientific investigation. Particular issues include accuracy, completeness, comparability between settings, ease of extraction, and context of recording. Although these problems can be addressed through standard strategies for dealing with partially accurate and incomplete data, a longer term solution will involve work with pediatric clinicians to improve data quality. As research becomes one of the explicit purposes for which pediatricians collect EMR data, the pediatric clinician will play a central role in future pediatric clinical research. PMID:21622040

Activation of an IL-6:STAT3-dependent Transcriptome in Pediatric-onset Inflammatory Bowel Disease

PubMed Central

Carey, Rebecca; Jurickova, Ingrid; Ballard, Edgar; Bonkowski, Erin; Han, Xiaonan; Xu, Huan; Denson, Lee A.

2008-01-01

Background: While activation of the IL-6-dependent transcription factor signal transducer and activator of transcription 3 (STAT3) has been implicated in the pathogenesis of inflammatory bowel disease (IBD), a direct effect on mucosal gene expression and inflammation has not been shown. We hypothesized that a proinflammatory IL-6:STAT3-dependent biological network would be up regulated in pediatric-onset IBD patients, and would be associated with the severity of mucosal inflammation. Methods: Patients with pediatric-onset IBD were enrolled at diagnosis and during therapy. Serum cytokine analysis was performed using Bioplex. STAT3 phosphorylation (pSTAT3) in peripheral blood leukocytes (PBLs) was assessed by flow cytometry. Immunohistochemistry of colonic mucosa was used to localize pSTAT3 and STAT3 target genes. Microarray analysis was used to determine RNA expression profiles from colon biopsies. Results: Circulating IL-6 was upregulated in active IBD patients at diagnosis and during therapy. STAT3 activation was increased in PB granulocytes, IL-6-stimulated CD3+/CD4+ lymphocytes, and affected colon biopsies of IBD patients. The frequency of pSTAT3+PB granulocytes and colon epithelial and lamina propria cells was highly correlated with the degree of mucosal inflammation. Microarray and Ingenuity Systems bioinformatics analysis identified IL-6:STAT3-dependent biological networks upregulated in IBD patients which control leukocyte recruitment, HLA expression, angiogenesis, and tissue remodeling. Conclusions: A proinflammatory IL6:STAT3 biologic network is upregulated in active pediatric IBD patients at diagnosis and during therapy. Specific targeting of this network may be effective in reducing mucosal inflammation. PMID:18069684

Intrinsic brain networks normalize with treatment in pediatric complex regional pain syndrome

PubMed Central

Becerra, Lino; Sava, Simona; Simons, Laura E.; Drosos, Athena M.; Sethna, Navil; Berde, Charles; Lebel, Alyssa A.; Borsook, David

2014-01-01

Pediatric complex regional pain syndrome (P-CRPS) offers a unique model of chronic neuropathic pain as it either resolves spontaneously or through therapeutic interventions in most patients. Here we evaluated brain changes in well-characterized children and adolescents with P-CRPS by measuring resting state networks before and following a brief (median = 3 weeks) but intensive physical and psychological treatment program, and compared them to matched healthy controls. Differences in intrinsic brain networks were observed in P-CRPS compared to controls before treatment (disease state) with the most prominent differences in the fronto-parietal, salience, default mode, central executive, and sensorimotor networks. Following treatment, behavioral measures demonstrated a reduction of symptoms and improvement of physical state (pain levels and motor functioning). Correlation of network connectivities with spontaneous pain measures pre- and post-treatment indicated concomitant reductions in connectivity in salience, central executive, default mode and sensorimotor networks (treatment effects). These results suggest a rapid alteration in global brain networks with treatment and provide a venue to assess brain changes in CRPS pre- and post-treatment, and to evaluate therapeutic effects. PMID:25379449

Discovering Pediatric Asthma Phenotypes on the Basis of Response to Controller Medication Using Machine Learning.

PubMed

Ross, Mindy K; Yoon, Jinsung; van der Schaar, Auke; van der Schaar, Mihaela

2018-01-01

Pediatric asthma has variable underlying inflammation and symptom control. Approaches to addressing this heterogeneity, such as clustering methods to find phenotypes and predict outcomes, have been investigated. However, clustering based on the relationship between treatment and clinical outcome has not been performed, and machine learning approaches for long-term outcome prediction in pediatric asthma have not been studied in depth. Our objectives were to use our novel machine learning algorithm, predictor pursuit (PP), to discover pediatric asthma phenotypes on the basis of asthma control in response to controller medications, to predict longitudinal asthma control among children with asthma, and to identify features associated with asthma control within each discovered pediatric phenotype. We applied PP to the Childhood Asthma Management Program study data (n = 1,019) to discover phenotypes on the basis of asthma control between assigned controller therapy groups (budesonide vs. nedocromil). We confirmed PP's ability to discover phenotypes using the Asthma Clinical Research Network/Childhood Asthma Research and Education network data. We next predicted children's asthma control over time and compared PP's performance with that of traditional prediction methods. Last, we identified clinical features most correlated with asthma control in the discovered phenotypes. Four phenotypes were discovered in both datasets: allergic not obese (A + /O - ), obese not allergic (A - /O + ), allergic and obese (A + /O + ), and not allergic not obese (A - /O - ). Of the children with well-controlled asthma in the Childhood Asthma Management Program dataset, we found more nonobese children treated with budesonide than with nedocromil (P = 0.015) and more obese children treated with nedocromil than with budesonide (P = 0.008). Within the obese group, more A + /O + children's asthma was well controlled with nedocromil than with budesonide (P = 0.022) or with placebo (P = 0.011). The PP algorithm performed significantly better (P < 0.001) than traditional machine learning algorithms for both short- and long-term asthma control prediction. Asthma control and bronchodilator response were the features most predictive of short-term asthma control, regardless of type of controller medication or phenotype. Bronchodilator response and serum eosinophils were the most predictive features of asthma control, regardless of type of controller medication or phenotype. Advanced statistical machine learning approaches can be powerful tools for discovery of phenotypes based on treatment response and can aid in asthma control prediction in complex medical conditions such as asthma.

Imaging utilization commentary: a radiology perspective.

PubMed

Reed, Martin H

2008-11-01

To adhere to the ALARA concept, imaging should be limited to studies that actually contribute to the management of the patient. For example, by applying the Ottawa Ankle Rule and the Ottawa Knee Rule, fewer radiographs are required to evaluate ankle and knee trauma in children. Chest radiographs usually do not contribute to the management of children presenting with typical acute bronchiolitis or asthma, and they can be detrimental because consolidation resulting from retained secretions is interpreted as pneumonia and the child is started on antibiotics unnecessarily. Moreover, a radiograph of the abdomen has poor validity and reproducibility for the diagnosis of constipation. The Pediatric Emergency Care Applied Research Network (PECARN) and the Pediatric Emergency Research in Canada (PERC) are currently developing decision rules for the use of CT in the assessment of minor head injuries in children, which should reduce its utilization in this condition. PECARN is also developing a decision rule for the use of CT in the assessment of abdominal trauma in children. CT is frequently used for the diagnosis of appendicitis in children, but appendicitis can be diagnosed clinically. If imaging is required, appendicitis can often be diagnosed with US, and CT need only be used in the minority of cases where the diagnosis is still in doubt. Utilization guidelines for pediatric imaging studies obtained in children in the emergency setting can improve yield and help in the more efficient management of often scarce health care resources.

The role of social networking sites in medical genetics research.

PubMed

Reaves, Allison Cook; Bianchi, Diana W

2013-05-01

Social networking sites (SNS) have potential value in the field of medical genetics as a means of research subject recruitment and source of data. This article examines the current role of SNS in medical genetics research and potential applications for these sites in future studies. Facebook is the primary SNS considered, given the prevalence of its use in the United States and role in a small but growing number of studies. To date, utilization of SNS in medical genetics research has been primarily limited to three studies that recruited subjects from populations of Facebook users [McGuire et al. (2009); Am J Bioeth 9: 3-10; Janvier et al. (2012); Pediatrics 130: 293-298; Leighton et al. (2012); Public Health Genomics 15: 11-21]. These studies and a number of other medical and public health studies that have used Facebook as a context for recruiting research subjects are discussed. Approaches for Facebook-based subject recruitment are identified, including paid Facebook advertising, snowball sampling, targeted searching and posting. The use of these methods in medical genetics research has the potential to facilitate cost-effective research on both large, heterogeneous populations and small, hard-to-access sub-populations. Copyright © 2013 Wiley Periodicals, Inc.

Moving toward a paradigm shift in the regulatory requirements for pediatric medicines.

PubMed

Chin, William Wei Lim; Joos, Angelika

2016-12-01

Over the past two decades, there has been growing concern over the lack of proper medication for children. This review attempts to evaluate the current progress of EU Pediatric Regulation made since 2007. The lack of properly evaluated pediatric medication has for long been a source of concern in the European Union. The drugs that were used in the past were often not properly evaluated, and dosage was arbitrarily calculated. Therefore, it was necessary to establish the Pediatric Regulation (EC no. 1901/2006) in the EU which would mandate research for pediatric drugs. Current legislations in place not only require mandatory research by pharma industry but also have guidelines to direct the quality of pediatric research performed. The main aim of this regulation was to advance high-quality research and development of pediatric drugs, thereby increasing the availability of safe and effective drugs for children. It also aimed to improve the information available on existing pediatric drugs. It has been 9 years since the pediatric regulation was framed. The pharma industry now sees pediatric research as an integral process of development. Drug companies which develop plans for a new drug, new form of drug, new indication, or new route of administration for adults are obliged to integrate in their development plan similar research for pediatric populations as well. It is hoped that the implementation of the current legislation will be reflected better in the future by the marketing of better and safer drugs for the pediatric population. The upcoming assessment to the European Commission in 2017 will further inform us on the impact after 10 years implementation of the legislation. What is Known: • The lack of properly evaluated pediatric medication has for long been a source of concern in the European Union. • Therefore, it was necessary to establish the EU Pediatric Regulation which would mandate research for pediatric drugs. What is New: • It has been 9 years since the pediatric regulation was framed, and the teething problems are slowly being overcome and the regulation is being used with increasing confidence. • As the Regulation is due for revision in 2017, this paper gives a current perspective on the impact of the regulation on availability and access to medicine for children.

Global gene expression profiling in infants with acute respiratory syncytial virus broncholitis demonstrates systemic activation of interferon signaling networks

USDA-ARS?s Scientific Manuscript database

Respiratory syncytial virus (RSV) is a leading cause of pediatric lower respiratory tract infections and has a high impact on pediatric emergency department utilization. Variation in host response may influence the pathogenesis and disease severity. We evaluated global gene expression profiles to be...

Intravenous magnesium for pediatric sickle cell vaso-occlusive crisis: methodological issues of a randomized controlled trial.

PubMed

Badaki-Makun, Oluwakemi; Scott, J Paul; Panepinto, Julie A; Casper, T Charles; Hillery, Cheryl A; Dean, J Michael; Brousseau, David C

2014-06-01

Multiple recent Sickle Cell Disease studies have been terminated due to poor enrollment. We developed methods to overcome past barriers and utilized these to study the efficacy and safety of intravenous magnesium for vaso-occlusive crisis (VOC). We describe the methods of the Intravenous Magnesium in Sickle Vaso-occlusive Crisis (MAGiC) trial and discuss methods used to overcome past barriers. MAGiC was a multi-center randomized double-blind placebo-controlled trial of intravenous magnesium versus normal saline for treatment of VOC. The study was a collaboration between Pediatric Hematologists and Emergency Physicians in the Pediatric Emergency Care Applied Research Network (PECARN). Eligible patients were randomized within 12 hours of receiving intravenous opioids in the Emergency Department (ED) and administered study medication every 8 hours. The primary outcome was hospital length of stay. Associated plasma studies elucidated magnesium's mechanism of action and the pathophysiology of VOC. Health-related quality of life was measured. Site-, protocol-, and patient-related barriers from prior studies were identified and addressed. Limited study staff availability, lack of collaboration with the ED, and difficulty obtaining consent were previously identified barriers. Leveraging PECARN resources, forging close collaborations between Sickle Cell Centers and EDs of participating sites, and approaching eligible patients for prior consent helped overcome these barriers. Participation in the PECARN network and establishment of collaborative arrangements between Sickle Cell Centers and their affiliated EDs are major innovative features of the MAGiC study that allowed improved subject capture. These methods could serve as a model for future studies of VOCs. © 2014 Wiley Periodicals, Inc.

Use of a social media network to reduce early neonatal mortality: a preliminary report from a quality improvement project in Yaoundé, Cameroon.

PubMed

Amani, Adidja; Nansseu, Jobert Richie; Mah, Evelyn M; Vougmo, Clemence Meguejio; Moluh, Seidou Moluh; Mbu, Robinson

2017-01-01

Perinatal networks have yielded substantial contribution in decreasing the neonatal mortality rate. We present here the process of implementation of a perinatal network in Yaoundé (Cameroon) based on the WhatsApp messenger application as well as some preliminary results and achievements. In December 2016, the Yaoundé Perinatal Network was launched, regrouping a multidisciplinary team of health professionals dealing with perinatal care in Yaoundé, Cameroon. The network takes advantage of WhatsApp facilities and is coordinated by 5 administrators. One of their main duties is to have a twice-daily updated status of the available equipment (incubators, oxygen and phototherapy) and bed capacities across the Yaoundé pediatric units. Once a request is sent through the network, other members react, either by giving advice or by telling where the desired equipment or expertise is available at that moment. Then, the baby is immediately prepared for transfer, occurring once the receiving pediatric unit has attested that it is already prepared to receive the new patient. From December 18, 2016 to July 31, 2017, 139 members representing all the principal maternities and tertiary pediatric units in Yaoundé were already included in the network. The network permitted instant sharing of knowledge and information between its members for an optimal delivery of care. Two hundred and seventeen neonates were transferred using the network; the median time of response after a request had been sent was 19.5 min and the delay in transferring a neonate averaged 70 min. Taking account of the preliminary promising notes, there is hope that the Yaoundé Perinatal Network will help to reduce neonatal mortality in our context. Lessons learned from its implementation will serve to replicate this innovative health action in other towns of the country. Moreover, this experience could be a source of inspiration for other countries facing similar challenges.

Determination of Eligibility in Related Pediatric Hematopoietic Cell Donors: Ethical and Clinical Considerations. Recommendations from a Working Group of the Worldwide Network for Blood and Marrow Transplantation Association.

PubMed

Bitan, Menachem; van Walraven, Suzanna M; Worel, Nina; Ball, Lynne M; Styczynski, Jan; Torrabadella, Marta; Witt, Volker; Shaw, Bronwen E; Seber, Adriana; Yabe, Hiromasa; Greinix, Hildegard T; Peters, Christina; Gluckman, Eliane; Rocha, Vanderson; Halter, Joerg; Pulsipher, Michael A

2016-01-01

Related donors for hematopoietic cell (HC) transplantation are a growing population in recent years because of expanding indications for allogeneic transplantation. The safety and welfare of the donor are major concerns for the transplantation community, especially for related sibling donors of young recipients who are children and, thus, not able to fully consent. Because donation of HC does not improve the donor's own physical health and carries a risk of side effects, careful assessment of medical risks specific to the individual donor, as well as consideration of ethical and legal aspects associated with donation from a child, must be considered. In addition, donor centers must balance the needs of both the donor and the recipient, understanding the inherent conflict parents may have as they can be overly focused on the very sick child receiving a transplant, rather than on the relatively less significant health or emotional problems that a sibling donor may have, which could impact risk with donation. Likewise, consideration must be made regarding the nature of the relationship of the sibling donor to the recipient and also aspects of performing research on pediatric HC donors. In this article, as members of the Donor Issues Committee of the Worldwide Network for Blood and Marrow Transplantation, we review key ethical concerns associated with pediatric donation and then give recommendations for screening potential child donors with underlying health conditions. These recommendations are aimed at protecting the physical and emotional well-being of childhood donors and arise out of the Third International Conference on Health and Safety of Donors sponsored by the Worldwide Network for Blood and Marrow Transplantation. Copyright © 2016 American Society for Blood and Marrow Transplantation. Published by Elsevier Inc. All rights reserved.

Strengthening molecular genetics and training in craniosynostosis: The need of the hour

PubMed Central

Barik, Mayadhar; Bajpai, Minu; Panda, Shasanka Shekhar; Malhotra, Arun; Samantaray, Jyotish Chandra; Dwivedi, Sada Nanda

2014-01-01

Craniosynostosis (CS) is premature fusion of skull. It is divided into two groups: Syndromic craniosynostosis (SCS) and non-syndromic craniosynostosis (NSC). Its incidence in Indian population is 1:1000 live births where as in the USA it is 1:2500 live births. Its incidence varies from country to country. Molecular genetics having great interest and relevance in medical students, faculty, scientist, pediatric neurosurgeon and staff nurses, our objective was to educate the medical students, residents, researchers, clinicians, pediatric neurosurgeon, anesthetists, pediatricians, staff nurses and paramedics. We summarized here including with diagnosis, investigations, surgical therapy, induction therapy, and molecular therapy. Molecular genetics training is needed to know the information regarding development of skull, cranial connective tissue, craniofacial dysplasia, frame work, network of receptors and its etiopathogenesis. The important part is clinically with molecular therapy (MT) how to manage CS in rural sector and metropolitan cities need a special attention. PMID:25288859

Strengthening molecular genetics and training in craniosynostosis: The need of the hour.

PubMed

Barik, Mayadhar; Bajpai, Minu; Panda, Shasanka Shekhar; Malhotra, Arun; Samantaray, Jyotish Chandra; Dwivedi, Sada Nanda

2014-10-01

Craniosynostosis (CS) is premature fusion of skull. It is divided into two groups: Syndromic craniosynostosis (SCS) and non-syndromic craniosynostosis (NSC). Its incidence in Indian population is 1:1000 live births where as in the USA it is 1:2500 live births. Its incidence varies from country to country. Molecular genetics having great interest and relevance in medical students, faculty, scientist, pediatric neurosurgeon and staff nurses, our objective was to educate the medical students, residents, researchers, clinicians, pediatric neurosurgeon, anesthetists, pediatricians, staff nurses and paramedics. We summarized here including with diagnosis, investigations, surgical therapy, induction therapy, and molecular therapy. Molecular genetics training is needed to know the information regarding development of skull, cranial connective tissue, craniofacial dysplasia, frame work, network of receptors and its etiopathogenesis. The important part is clinically with molecular therapy (MT) how to manage CS in rural sector and metropolitan cities need a special attention.

Profile and scientific production of Brazilian National Council of Technological and Scientific Development researchers in Pediatrics.

PubMed

Oliveira, Maria Christina L; Martelli, Daniella Reis B; Pinheiro, Sergio Veloso; Miranda, Debora Marques; Quirino, Isabel Gomes; Leite, Barbara Gusmão L; Colosimo, Enrico Antonio; e Silva, Ana Cristina S; Martelli-Júnior, Hercílio; Oliveira, Eduardo Araujo

2013-09-01

To evaluate the profile and the scientific production of researchers in Pediatrics with scholarship from the National Counsel of Technological and Scientific Development. The Lattes curricula of 34 researchers in Pediatrics with active scholarships, from 2006 to 2008 were included in the analysis. The variables of interest were: gender, affiliation, time since PHD, tutoring of undergraduate students, mentorship of masters and doctors, scientific production and the papers' impact. In a total of 411 researchers in Medicine, 34 (8%) belonged to Pediatrics. Males (77%) and scholars in the category 2 of productivity (62%) prevailed. Three states of Brazil were responsible for approximately 90% of the researchers: São Paulo (53%), Minas Gerais (21%), and Rio Grande do Sul (15%). During their academic career, the Pediatrics researchers have published 3,122 articles with a median of 89 articles per researcher (interquartile range - IQ=51-119). Of the total, 40 and 59% articles were indexed in the Web of Science and Scopus databases, respectively. The Pediatrics researchers have published papers in 599 journals with a median impact factor of 2.35 (IQ=1.37-3.73) for the 323 indexed journals. The Pediatrics researchers have a relevant scientific output from the quantity point of the view, but there is a need to improve quality.

Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results after Death of the Subject.

PubMed

Scollon, Sarah; Bergstrom, Katie; McCullough, Laurence B; McGuire, Amy L; Gutierrez, Stephanie; Kerstein, Robin; Parsons, D Williams; Plon, Sharon E

2015-01-01

The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settings. © 2015 American Society of Law, Medicine & Ethics, Inc.

The Fragile State of the National Institutes of Health Pediatric Research Portfolio, 1992-2015: Doing More With Less?

PubMed

Gitterman, Daniel P; Langford, W Scott; Hay, William W

2018-03-01

In this article, we examine the status of the National Institutes of Health (NIH) pediatric research portfolio between start of federal fiscal year (FY) 1992 and end of FY 2015. The NIH experienced the greatest mean annual growth rate during the "doubling era" (FY 1998-2003): both the NIH budget (13.5%) and pediatric research portfolios (11.5%) increased annually by double digits. However, in the "postdoubling" era (FY 2004-2009), both the NIH (2.0%) and pediatric (-0.2%) mean annual growth rates decreased dramatically. In the most recent era (FY 2010-2015), the NIH mean annual growth rate has been flat (-0.1%) and pediatric research funding has posted very modest gains (3.5%) without accounting for 1-time increases under the 2009 American Recovery and Reinvestment Act. We offer recommendations to protect against further erosion of the pediatric research portfolio because continuation of these trends will have a negative effect on the health of children during their childhood and as adults. As capacity to conduct basic and applied research is further constrained, it will be a challenge for pediatric researchers to do more with less and less.

Methodological Quality of National Guidelines for Pediatric Inpatient Conditions

PubMed Central

Hester, Gabrielle; Nelson, Katherine; Mahant, Sanjay; Eresuma, Emily; Keren, Ron; Srivastava, Rajendu

2014-01-01

Background Guidelines help inform standardization of care for quality improvement (QI). The Pediatric Research in Inpatient Settings (PRIS) network published a prioritization list of inpatient conditions with high prevalence, cost, and variation in resource utilization across children’s hospitals. The methodological quality of guidelines for priority conditions is unknown. Objective To rate the methodological quality of national guidelines for 20 priority pediatric inpatient conditions. Design We searched sources including PubMed for national guidelines published 2002–2012. Guidelines specific to one organism, test or treatment, or institution were excluded. Guidelines were rated by two raters using a validated tool (AGREE II) with an overall rating on a 7-point scale (7–highest). Inter-rater reliability was measured with a weighted kappa coefficient. Results 17 guidelines met inclusion criteria for 13 conditions, 7 conditions yielded no relevant national guidelines. The highest methodological quality guidelines were for asthma, tonsillectomy, and bronchiolitis (mean overall rating 7, 6.5 and 6.5 respectively); the lowest were for sickle cell disease (2 guidelines) and dental caries (mean overall rating 4, 3.5, and 3 respectively). The overall weighted kappa was 0.83 (95% confidence interval 0.78–0.87). Conclusions We identified a group of moderate to high methodological quality national guidelines for priority pediatric inpatient conditions. Hospitals should consider these guidelines to inform QI initiatives. PMID:24677729

Perceptions of Pediatric Residents Regarding Counseling About Use of Social Networking Sites.

PubMed

Banker, Sumeet L; Fenick, Ada M; Qin, Li; Talwalkar, Jaideep S

2018-04-01

Increasing use of social networking sites (SNS) among youth prompted professional organizations to urge pediatricians to promote healthy media use. Electronic questionnaires were distributed to 76 pediatric residents at one academic center measuring attitudes, practices, and familiarity with SNS. Of 43 respondents (response rate = 57%), most reported personal SNS use (98%) and familiarity with SNS used by youth (72%), and 88% agreed that pediatricians should provide counseling on SNS use. Only 5% felt they had adequate training on SNS use in children, and just 26% felt comfortable advising families. Residents were less likely to discuss SNS use than general media use (19% vs 56%, P = .007). Media counseling was correlated with SNS counseling ( r = .38, P = .01). Pediatric residents recognize the importance of guiding families on SNS use, yet do not routinely provide counseling despite high levels of personal SNS use and familiarity. Focused training is necessary for pediatricians to prioritize practical guidance.

Resting-state functional magnetic resonance imaging for surgical planning in pediatric patients: a preliminary experience.

PubMed

Roland, Jarod L; Griffin, Natalie; Hacker, Carl D; Vellimana, Ananth K; Akbari, S Hassan; Shimony, Joshua S; Smyth, Matthew D; Leuthardt, Eric C; Limbrick, David D

2017-12-01

OBJECTIVE Cerebral mapping for surgical planning and operative guidance is a challenging task in neurosurgery. Pediatric patients are often poor candidates for many modern mapping techniques because of inability to cooperate due to their immature age, cognitive deficits, or other factors. Resting-state functional MRI (rs-fMRI) is uniquely suited to benefit pediatric patients because it is inherently noninvasive and does not require task performance or significant cooperation. Recent advances in the field have made mapping cerebral networks possible on an individual basis for use in clinical decision making. The authors present their initial experience translating rs-fMRI into clinical practice for surgical planning in pediatric patients. METHODS The authors retrospectively reviewed cases in which the rs-fMRI analysis technique was used prior to craniotomy in pediatric patients undergoing surgery in their institution. Resting-state analysis was performed using a previously trained machine-learning algorithm for identification of resting-state networks on an individual basis. Network maps were uploaded to the clinical imaging and surgical navigation systems. Patient demographic and clinical characteristics, including need for sedation during imaging and use of task-based fMRI, were also recorded. RESULTS Twenty patients underwent rs-fMRI prior to craniotomy between December 2013 and June 2016. Their ages ranged from 1.9 to 18.4 years, and 12 were male. Five of the 20 patients also underwent task-based fMRI and one underwent awake craniotomy. Six patients required sedation to tolerate MRI acquisition, including resting-state sequences. Exemplar cases are presented including anatomical and resting-state functional imaging. CONCLUSIONS Resting-state fMRI is a rapidly advancing field of study allowing for whole brain analysis by a noninvasive modality. It is applicable to a wide range of patients and effective even under general anesthesia. The nature of resting-state analysis precludes any need for task cooperation. These features make rs-fMRI an ideal technology for cerebral mapping in pediatric neurosurgical patients. This review of the use of rs-fMRI mapping in an initial pediatric case series demonstrates the feasibility of utilizing this technique in pediatric neurosurgical patients. The preliminary experience presented here is a first step in translating this technique to a broader clinical practice.

Motivational Interviewing and Dietary Counseling for Obesity in Primary Care: An RCT

PubMed Central

McMaster, Fiona; Bocian, Alison; Harris, Donna; Zhou, Yan; Snetselaar, Linda; Schwartz, Robert; Myers, Esther; Gotlieb, Jaquelin; Foster, Jan; Hollinger, Donna; Smith, Karen; Woolford, Susan; Mueller, Dru; Wasserman, Richard C.

2015-01-01

BACKGROUND AND OBJECTIVE: Few studies have tested the impact of motivational interviewing (MI) delivered by primary care providers on pediatric obesity. This study tested the efficacy of MI delivered by providers and registered dietitians (RDs) to parents of overweight children aged 2 through 8. METHODS: Forty-two practices from the Pediatric Research in Office Settings Network of the American Academy of Pediatrics were randomly assigned to 1 of 3 groups. Group 1 (usual care) measured BMI percentile at baseline and 1- and 2-year follow-up. Group 2 (provider only) delivered 4 MI counseling sessions to parents of the index child over 2 years. Group 3 (provider + RD) delivered 4 provider MI sessions plus 6 MI sessions from a RD. The primary outcome was child BMI percentile at 2-year follow up. RESULTS: At 2-year follow-up, the adjusted BMI percentile was 90.3, 88.1, and 87.1 for groups 1, 2, and 3, respectively. The group 3 mean was significantly (P = .02) lower than group 1. Mean changes from baseline in BMI percentile were 1.8, 3.8, and 4.9 across groups 1, 2, and 3. CONCLUSIONS: MI delivered by providers and RDs (group 3) resulted in statistically significant reductions in BMI percentile. Research is needed to determine the clinical significance and persistence of the BMI effects observed. How the intervention can be brought to scale (in particular, how to train physicians to use MI effectively and how best to train RDs and integrate them into primary care settings) also merits future research. PMID:25825539

Ethical aspects of clinical research with minors.

PubMed

Bos, Wendy; Tromp, Krista; Tibboel, Dick; Pinxten, Wim

2013-07-01

Over the past decades, clinical research has increasingly been subjected to ethical requirements and legal regulation. The specific focus of ethical and legal frameworks on competent adults (which serve as the paradigmatic research subject), however, has created an ambivalent attitude towards pediatric clinical research. On one hand, minors are regarded as a vulnerable population that deserves additional protection against the risks and burdens involved in clinical research. On the other hand, the population of minors should not be denied (or not get timely) access to the benefits of clinical research. In this paper, we will explore the legal regulation and ethical guidance that currently governs pediatric clinical research in the European Union and discuss the future challenges in this field. In addition, we will discuss major ethical concerns in pediatric clinical research, with a focus on the acceptability of research risks and the informed consent process. In the discussion, we will address key concerns in both regulating pediatric clinical research and implementing ethical and legal requirement in the actual pediatric research conduct.

Comparison of pediatric self reports and parent proxy reports utilizing PROMIS: Results from a chiropractic practice-based research network.

PubMed

Alcantara, Joel; Ohm, Jeanne; Alcantara, Junjoe

2017-11-01

To measure the cross-informant variant of pediatric quality of life (QoL) based on self-reports and parent proxy measures. A secondary analysis of baseline data obtained from two independent studies measuring the QoL based on the pediatric PROMIS-25 self-report and the PROMIS parent-proxy items banks. A scoring manual associated raw scores to a T score metric (mean = 50; SD = 10). Reliability of QoL ratings utilized the ICC while comparison of mean T Scores utilized the unpaired t-test. A total of 289 parent-child dyads comprised our study responders. Average age for parents and children was 41.27 years and 12.52 years, respectively. The mean T score (child self-report: parent proxy) for each QoL domains were: mobility (50.82:52.58), anxiety (46.73:44.21), depression (45.18:43.60), fatigue (45.59:43.92), peer-relationships (52.15:52.88) and pain interference (47.47:44.80). Parents tend to over-estimate their child's QoL based on measures of anxiety, depression, fatigue, peer-relationships and pain interference. Copyright © 2017 The Authors. Published by Elsevier Ltd.. All rights reserved.

76 FR 67463 - Pediatric Medical Devices; Public Workshop; Request for Comments

Federal Register 2010, 2011, 2012, 2013, 2014

2011-11-01

... use, existing scientific research data to determine pediatric effectiveness based on a similar course... research data, and C. The methods to overcome the pitfalls and data gaps, including statistical approaches... announcing a public workshop entitled ``Using Scientific Research Data to Support Pediatric Medical Device...

Gender and generational influences on the pediatric workforce and practice.

PubMed

Spector, Nancy D; Cull, William; Daniels, Stephen R; Gilhooly, Joseph; Hall, Judith; Horn, Ivor; Marshall, Susan G; Schumacher, Daniel J; Sectish, Theodore C; Stanton, Bonita F

2014-06-01

In response to demographic and other trends that may affect the future of the field of pediatrics, the Federation of Pediatric Organizations formed 4 working groups to participate in a year's worth of research and discussion preliminary to a Visioning Summit focusing on pediatric practice, research, and training over the next 2 decades. This article, prepared by members of the Gender and Generations Working Group, summarizes findings relevant to the 2 broad categories of demographic trends represented in the name of the group and explores the interface of these trends with advances in technology and social media and the impact this is likely to have on the field of pediatrics. Available data suggest that the trends in the proportions of men and women entering pediatrics are similar to those over the past few decades and that changes in the overall ratio of men and women will not substantially affect pediatric practice. However, although women may be as likely to succeed in academic medicine and research, fewer women than men enter research, thereby potentially decreasing the number of pediatric researchers as the proportion of women increases. Complex generational differences affect both the workforce and interactions in the workplace. Differences between the 4 generational groups comprising the pediatric workforce are likely to result in an evolution of the role of the pediatrician, particularly as it relates to aspects of work-life balance and the use of technology and social media. Copyright © 2014 by the American Academy of Pediatrics.

Toward the Cure of All Children With Cancer Through Collaborative Efforts: Pediatric Oncology As a Global Challenge.

PubMed

Rodriguez-Galindo, Carlos; Friedrich, Paola; Alcasabas, Patricia; Antillon, Federico; Banavali, Shripad; Castillo, Luis; Israels, Trijn; Jeha, Sima; Harif, Mhammed; Sullivan, Michael J; Quah, Thuan Chong; Patte, Catherine; Pui, Ching-Hon; Barr, Ronald; Gross, Thomas

2015-09-20

Advances in the treatment of childhood cancers have resulted in part from the development of national and international collaborative initiatives that have defined biologic determinants and generated risk-adapted therapies that maximize cure while minimizing acute and long-term effects. Currently, more than 80% of children with cancer who are treated with modern multidisciplinary treatments in developed countries are cured; however, of the approximately 160,000 children and adolescents who are diagnosed with cancer every year worldwide, 80% live in low- and middle-income countries (LMICs), where access to quality care is limited and chances of cure are low. In addition, the disease burden is not fully known because of the lack of population-based cancer registries in low-resource countries. Regional and ethnic variations in the incidence of the different childhood cancers suggest unique interactions between genetic and environmental factors that could provide opportunities for etiologic research. Regional collaborative initiatives have been developed in Central and South America and the Caribbean, Africa, the Middle East, Asia, and Oceania. These initiatives integrate regional capacity building, education of health care providers, implementation of intensity-graduated treatments, and establishment of research programs that are adjusted to local capacity and local needs. Together, the existing consortia and regional networks operating in LMICs have the potential to reach out to almost 60% of all children with cancer worldwide. In summary, childhood cancer burden has been shifted toward LMICs and, for that reason, global initiatives directed at pediatric cancer care and control are needed. Regional networks aiming to build capacity while incorporating research on epidemiology, health services, and outcomes should be supported. © 2015 by American Society of Clinical Oncology.

Surgical Site Infections Following Pediatric Ambulatory Surgery: An Epidemiologic Analysis.

PubMed

Rinke, Michael L; Jan, Dominique; Nassim, Janelle; Choi, Jaeun; Choi, Steven J

2016-08-01

OBJECTIVE To identify surgical site infection (SSI) rates following pediatric ambulatory surgery, SSI outcomes and risk factors, and sensitivity and specificity of SSI administrative billing codes. DESIGN Retrospective chart review of pediatric ambulatory surgeries with International Classification of Disease, Ninth Revision (ICD-9) codes for SSI, and a systematic random sampling of 5% of surgeries without SSI ICD-9 codes, all adjudicated for SSI on the basis of an ambulatory-adapted National Healthcare Safety Network definition. SETTING Urban pediatric tertiary care center April 1, 2009-March 31, 2014. METHODS SSI rates and sensitivity and specificity of ICD-9 codes were estimated using sampling design, and risk factors were analyzed in case-rest of cohort, and case-control, designs. RESULTS In 15,448 pediatric ambulatory surgeries, 34 patients had ICD-9 codes for SSI and 25 met the adapted National Healthcare Safety Network criteria. One additional SSI was identified with systematic random sampling. The SSI rate following pediatric ambulatory surgery was 2.9 per 1,000 surgeries (95% CI, 1.2-6.9). Otolaryngology surgeries demonstrated significantly lower SSI rates compared with endocrine (P=.001), integumentary (P=.001), male genital (P<.0001), and respiratory (P=.01) surgeries. Almost half of patients with an SSI were admitted, 88% received antibiotics, and 15% returned to the operating room. No risk factors were associated with SSI. The sensitivity of ICD-9 codes for SSI following ambulatory surgery was 55.31% (95% CI, 12.69%-91.33%) and specificity was 99.94% (99.89%-99.97%). CONCLUSIONS SSI following pediatric ambulatory surgery occurs at an appreciable rate and conveys morbidity on children. Infect Control Hosp Epidemiol 2016;37:931-938.

Identification of potential transcriptomic markers in developing pediatric sepsis: a weighted gene co-expression network analysis and a case-control validation study.

PubMed

Li, Yiping; Li, Yanhong; Bai, Zhenjiang; Pan, Jian; Wang, Jian; Fang, Fang

2017-12-13

Sepsis represents a complex disease with the dysregulated inflammatory response and high mortality rate. The goal of this study was to identify potential transcriptomic markers in developing pediatric sepsis by a co-expression module analysis of the transcriptomic dataset. Using the R software and Bioconductor packages, we performed a weighted gene co-expression network analysis to identify co-expression modules significantly associated with pediatric sepsis. Functional interpretation (gene ontology and pathway analysis) and enrichment analysis with known transcription factors and microRNAs of the identified candidate modules were then performed. In modules significantly associated with sepsis, the intramodular analysis was further performed and "hub genes" were identified and validated by quantitative real-time PCR (qPCR) in this study. 15 co-expression modules in total were detected, and four modules ("midnight blue", "cyan", "brown", and "tan") were most significantly associated with pediatric sepsis and suggested as potential sepsis-associated modules. Gene ontology analysis and pathway analysis revealed that these four modules strongly associated with immune response. Three of the four sepsis-associated modules were also enriched with known transcription factors (false discovery rate-adjusted P < 0.05). Hub genes were identified in each of the four modules. Four of the identified hub genes (MYB proto-oncogene like 1, killer cell lectin like receptor G1, stomatin, and membrane spanning 4-domains A4A) were further validated to be differentially expressed between septic children and controls by qPCR. Four pediatric sepsis-associated co-expression modules were identified in this study. qPCR results suggest that hub genes in these modules are potential transcriptomic markers for pediatric sepsis diagnosis. These results provide novel insights into the pathogenesis of pediatric sepsis and promote the generation of diagnostic gene sets.

Pediatric Oncology Branch - training- resident electives | Center for Cancer Research

Cancer.gov

Resident Electives Select pediatric residents may be approved for a 4-week elective rotation at the Pediatric Oncology Branch. This rotation emphasizes the important connection between research and patient care in pediatric oncology. The resident is supervised directly by the Branch’s attending physician and clinical fellows. Residents attend daily in-patient and out-patient

Medical genetic issues in clinical of pediatric neurology practice:a history of pediatrics in Peking University First Hospital.

PubMed

Wu, Xi-ru

2006-02-18

The Department of Pediatrics of Peking University First Hospital has a long term of outstanding history. It was established about 60 years ago. After the division of pediatric neurology (DPN) had been established in 1960s, it had been assigned to cover genetic disorders. During the recent 20 years, efforts have been put on three aspects: (1) Pediatric neurology clinical service and education; (2) research studies of childhood epilepsies and pediatric neurogenetic disorders; and (3) development of a strong DPN team to establish a comprehensive pediatric neurological program. In this paper, we reviewed the history of the pediatric neurology division in our department, our clinical and research work and achievements for neurogenetic diseases.

Child Health Research Funding and Policy: Imperatives and Investments for a Healthier World

PubMed Central

Hay, William W.; Gitterman, Daniel P.; Williams, David A.; Dover, George J.; Sectish, Theodore C.; Schleiss, Mark R.

2011-01-01

Although pediatric research enjoyed significant benefits during the National Institutes of Health (NIH) doubling era, the proportion of the NIH budget devoted to the pediatric-research portfolio has declined overall. In light of this declining support for pediatric biomedical research, the Federation of Pediatric Organizations held a topic symposium at the 2009 Pediatric Academic Societies annual meeting as a forum for discussion of the past and future states of funding, the rationale for directing public funds toward the understanding of child health and disease, and new programs and paradigms for promoting child health research. This report of the symposium is intended to disseminate more broadly the information presented and conclusions discussed to encourage those in the child health research community to exert influence with policy makers to increase the allocation of national funding for this underfunded area. PMID:20457684

Methods for examining data quality in healthcare integrated data repositories.

PubMed

Huser, Vojtech; Kahn, Michael G; Brown, Jeffrey S; Gouripeddi, Ramkiran

2018-01-01

This paper summarizes content of the workshop focused on data quality. The first speaker (VH) described data quality infrastructure and data quality evaluation methods currently in place within the Observational Data Science and Informatics (OHDSI) consortium. The speaker described in detail a data quality tool called Achilles Heel and latest development for extending this tool. Interim results of an ongoing Data Quality study within the OHDSI consortium were also presented. The second speaker (MK) described lessons learned and new data quality checks developed by the PEDsNet pediatric research network. The last two speakers (JB, RG) described tools developed by the Sentinel Initiative and University of Utah's service oriented framework. The workshop discussed at the end and throughout how data quality assessment can be advanced by combining best features of each network.

77 FR 3781 - Pediatric Medical Devices; Public Workshop; Reopening of Comment Period

Federal Register 2010, 2011, 2012, 2013, 2014

2012-01-25

... discussion of how to determine when it is appropriate to use, and how to use, existing scientific research... use of scientific research data to support pediatric medical device efficacy claims. This is part of an on-going effort to address the ways scientific research data can be used to support pediatric...

Pediatric Oncology Branch - training- resident electives | Center for Cancer Research

Cancer.gov

Resident Electives Select pediatric residents may be approved for a 4-week elective rotation at the Pediatric Oncology Branch. This rotation emphasizes the important connection between research and patient care in pediatric oncology. The resident is supervised directly by the Branch’s attending physician and clinical fellows. Residents attend daily in-patient and out-patient rounds, multiple weekly Branch conferences, and are expected to research relevant topics and present a 30-minute talk toward the end of their rotation.

Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research.

PubMed

Ghirotto, Luca; Busani, Elena; Salvati, Michela; Di Marco, Valeria; Caldarelli, Valeria; Artioli, Giovanna

2018-05-29

Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children. A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.ResultWe retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, "living beyond pain," the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.Significance of resultsThis meta-summary presents the "state of the art" of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.

Implicit Review Instrument to Evaluate Quality of Care Delivered by Physicians to Children in Emergency Departments.

PubMed

Marcin, James P; Romano, Patrick S; Dharmar, Madan; Chamberlain, James M; Dudley, Nanette; Macias, Charles G; Nigrovic, Lise E; Powell, Elizabeth C; Rogers, Alexander J; Sonnett, Meridith; Tzimenatos, Leah; Alpern, Elizabeth R; Andrews-Dickert, Rebecca; Borgialli, Dominic A; Sidney, Erika; Casper, Charlie; Dean, Jonathan Michael; Kuppermann, Nathan

2018-06-01

To evaluate the consistency, reliability, and validity of an implicit review instrument that measures the quality of care provided to children in the emergency department (ED). Medical records of randomly selected children from 12 EDs in the Pediatric Emergency Care Applied Research Network (PECARN). Eight pediatric emergency medicine physicians applied the instrument to 620 medical records. We determined internal consistency using Cronbach's alpha and inter-rater reliability using the intraclass correlation coefficient (ICC). We evaluated the validity of the instrument by correlating scores with four condition-specific explicit review instruments. Individual reviewers' Cronbach's alpha had a mean of 0.85 with a range of 0.76-0.97; overall Cronbach's alpha was 0.90. The ICC was 0.49 for the summary score with a range from 0.40 to 0.46. Correlations between the quality of care score and the four condition-specific explicit review scores ranged from 0.24 to 0.38. The quality of care instrument demonstrated good internal consistency, moderate inter-rater reliability, high inter-rater agreement, and evidence supporting validity. The instrument could be useful for systems' assessment and research in evaluating the care delivered to children in the ED. © Health Research and Educational Trust.

Conducting multicenter research in healthcare simulation: Lessons learned from the INSPIRE network.

PubMed

Cheng, Adam; Kessler, David; Mackinnon, Ralph; Chang, Todd P; Nadkarni, Vinay M; Hunt, Elizabeth A; Duval-Arnould, Jordan; Lin, Yiqun; Pusic, Martin; Auerbach, Marc

2017-01-01

Simulation-based research has grown substantially over the past two decades; however, relatively few published simulation studies are multicenter in nature. Multicenter research confers many distinct advantages over single-center studies, including larger sample sizes for more generalizable findings, sharing resources amongst collaborative sites, and promoting networking. Well-executed multicenter studies are more likely to improve provider performance and/or have a positive impact on patient outcomes. In this manuscript, we offer a step-by-step guide to conducting multicenter, simulation-based research based upon our collective experience with the International Network for Simulation-based Pediatric Innovation, Research and Education (INSPIRE). Like multicenter clinical research, simulation-based multicenter research can be divided into four distinct phases. Each phase has specific differences when applied to simulation research: (1) Planning phase , to define the research question, systematically review the literature, identify outcome measures, and conduct pilot studies to ensure feasibility and estimate power; (2) Project Development phase , when the primary investigator identifies collaborators, develops the protocol and research operations manual, prepares grant applications, obtains ethical approval and executes subsite contracts, registers the study in a clinical trial registry, forms a manuscript oversight committee, and conducts feasibility testing and data validation at each site; (3) Study Execution phase , involving recruitment and enrollment of subjects, clear communication and decision-making, quality assurance measures and data abstraction, validation, and analysis; and (4) Dissemination phase , where the research team shares results via conference presentations, publications, traditional media, social media, and implements strategies for translating results to practice. With this manuscript, we provide a guide to conducting quantitative multicenter research with a focus on simulation-specific issues.

Feasibility of developing a pediatric telehealth network in Honduras with international consultation support.

PubMed

Brooks, Mary; Holden, Kenton R; Durón, Reyna M; McElligott, James T; Summer, Andrea

2017-01-01

Honduras is the second poorest country in Central America, and roughly 50% of the population lives in rural areas. A telehealth network linking these areas to larger health centers may improve patient access to care, and physician access to educational opportunities. This pilot study assessed the feasibility of establishing a pediatric telehealth network between underserved clinics in Honduras and the Medical University of South Carolina (MUSC). Two underserved Honduran clinics were identified and invited to participate in the telehealth network. Providers from these clinics connected remotely to educational conferences at MUSC, and received teleconsults from MUSC physicians and physicians from the other Honduran site. Honduran providers completed five-point Likert scale satisfaction surveys following participation in the conferences and teleconsults. Survey feedback was positive, with 100% of respondents stating they would utilize telemedicine in the future. Dissatisfaction was expressed subjectively in the survey comments with regards to poor Internet connectivity and unreliable electrical power. The establishment of a telehealth network between Honduras and MUSC is feasible, and rural providers were receptive to the clinical and educational opportunities this network provides. Future projects will expand telehealth capabilities to other Honduran sites and focus on intra-country collaboration to ensure sustainability.

Prevalence of and risk factors for community-acquired methicillin-resistant and methicillin-sensitive staphylococcus aureus colonization in children seen in a practice-based research network.

PubMed

Fritz, Stephanie A; Garbutt, Jane; Elward, Alexis; Shannon, William; Storch, Gregory A

2008-06-01

We sought to define the prevalence of and risk factors for methicillin-resistant Staphylococcus aureus nasal colonization in the St Louis pediatric population. Children from birth to 18 years of age presenting for sick and well visits were recruited from pediatric practices affiliated with a practice-based research network. Nasal swabs were obtained, and a questionnaire was administered. We enrolled 1300 participants from 11 practices. The prevalence of methicillin-resistant S aureus nasal colonization varied according to practice, from 0% to 9% (mean: 2.6%). The estimated population prevalence of methicillin-resistant S aureus nasal colonization for the 2 main counties of the St Louis metropolitan area was 2.4%. Of the 32 methicillin-resistant S aureus isolates, 9 (28%) were health care-associated types and 21 (66%) were community-acquired types. A significantly greater number of children with community-acquired methicillin-resistant S aureus were black and were enrolled in Medicaid, in comparison with children colonized with health care-associated methicillin-resistant S aureus. Children with both types of methicillin-resistant S aureus colonization had increased contact with health care, compared with children without colonization. Methicillin-sensitive S aureus nasal colonization ranged from 9% to 31% among practices (mean: 24%). The estimated population prevalence of methicillin-sensitive S aureus was 24.6%. Risk factors associated with methicillin-sensitive S aureus colonization included pet ownership, fingernail biting, and sports participation. Methicillin-resistant S aureus colonization is widespread among children in our community and includes strains associated with health care-associated and community-acquired infections.

[Research progresses of the completed pediatrics projects funded by National Natural Science Foundation of China from 2002 to 2006].

PubMed

Xu, Ling; Hao, Jie; Deng, Min; Xu, Yan-ying

2009-05-01

To understand the projects completion and research progresses in pediatrics which were funded by the National Natural Science Foundation of China (NSFC), and evaluate the accomplishment objectively and justly. The completion status of projects in pediatrics funded by department of clinical medicine II from 2002 to 2006 was analysed retrospectively, and important research achievement and outstanding development in some projects were reported. During the period between 2002 and 2006, 420 articles were published, and the average was 8.1 papers per project, which included 56 papers that were published in journals indexed by SCI (the average was 1.1 papers per project). The completion of general project was better than that of "the Young Researchers Fund" and small grant project. Ten post-doctors, 102 doctors and 109 masters were trained. Two projects were awarded with the first grade prize and another 2 with the second grade prize at the provincial and ministerial level, 4 items applied for patent and 1 was granted. These completed projects, which were mainly related to 7 of 12 subspecialties in the field of pediatrics, such as the respiratory disease, nephrology, neurology, cardiology, endocrinology, hematology, neonatology, are the major portion of the application projects and subsidized projects funded by NSFC, and achieved great research progresses. During the period between 2002 and 2006, the 52 completed projects in pediatrics showed difference in the distribution and quality of accomplishment among subspecialties and among types of supported projects; there are some gaps between pediatrics and some other clinical basic subspecialties II, this situation released the research status and problems in development of pediatrics in China. The general projects completion was good, and many projects obtained research achievements, which reflect the leading function of NSFC in pediatric research.

Researchers' perspectives on pediatric obesity research participant recruitment.

PubMed

Parikh, Yasha; Mason, Maryann; Williams, Karen

2016-12-01

Childhood obesity prevalence has tripled over the last three decades. Pediatric obesity has important implications for both adult health as well as the United States economy. In order to combat pediatric obesity, exploratory studies are necessary to create effective interventions. Recruitment is an essential part of any study, and it has been challenging for all studies, especially pediatric obesity studies. The objective of this study was to understand barriers to pediatric obesity study recruitment and review facilitators to overcome recruitment difficulties. Twenty four childhood obesity researchers were contacted. Complete data for 11 researchers were obtained. Interviews were transcribed and analyzed using content analysis. Grounded Theory methodological approach was used, as this was an exploratory study. Investigators YP and MM coded the interviews using 28 codes. Barriers to recruitment included: family and study logistics, family economics, lack of provider interest, invasive protocols, stigma, time restraints of clinicians, lack of patient motivation/interest, groupthink of students in a classroom, and participants who do not accept his or her own weight status. Facilitators to enhance recruitment practices included accommodating participants outside of regular clinic hours, incentivizing participants, cultivating relationships with communities, schools and clinics prior to study recruitment, emphasizing benefits of a study for the patient, and shifting language to focus on health rather than obesity. Pediatric obesity researchers face many standard and some unique challenges to recruitment, reflecting challenges common to clinical research as well as some specific to pediatrics and some specific to obesity research. Both pediatric studies as well as obesity studies are an added challenge to the already-difficult task of general study recruitment. Our findings can be used to make researchers more aware of potential difficulties, approaches and on-going needs for enhancing recruitment and enrollment practices, and in turn if applied, may result in increased study efficiency.

Developing an organizing framework to guide nursing research in the Children’s Oncology Group (COG)

PubMed Central

Kelly, Katherine Patterson; Hooke, Mary C.; Ruccione, Kathleen; Landier, Wendy; Haase, Joan

2014-01-01

Objectives To describe the development and application of an organizing research framework to guide COG Nursing research. Data Sources Research articles, reports and meeting minutes Conclusion An organizing research framework helps to outline research focus and articulate the scientific knowledge being produced by nurses in the pediatric cooperative group. Implication for Nursing Practice The use of an organizing framework for COG nursing research can facilitate clinical nurses’ understanding of how children and families sustain or regain optimal health when faced with a pediatric cancer diagnosis through interventions designed to promote individual and family resilience. The Children’s Oncology Group (COG) is the sole National Cancer Institute (NCI)-supported cooperative pediatric oncology clinical trials group and the largest organization in the world devoted exclusively to pediatric cancer research. It was founded in 2000 following the merger of the four legacy NCI-supported pediatric clinical trials groups (Children’s Cancer Group [CCG], Pediatric Oncology Group [POG], National Wilms Tumor Study Group, and Intergroup Rhabdomyosarcoma Study Group). The COG currently has over 200 member institutions across North America, Australia, New Zealand and Europe and a multidisciplinary membership of over 8,000 pediatric, radiation, and surgical oncologists, nurses, clinical research associates, pharmacists, behavioral scientists, pathologists, laboratory scientists, patient/parent advocates and other pediatric cancer specialists. The COG Nursing Discipline was formed from the merger of the legacy CCG and POG Nursing Committees, and current membership exceeds 2000 registered nurses. The discipline has a well-developed infrastructure that promotes nursing involvement throughout all levels of the organization, including representation on disease, protocol, scientific, executive and other administrative committees (e.g., nominating committee, data safety monitoring boards). COG nurses facilitate delivery of protocol-based treatments for children enrolled on COG protocols, and Nursing Discipline initiatives support nursing research, professional and patient/family education, evidence-based practice, and a patient-reported outcomes resource center. The research agenda of the Nursing Discipline is enacted through a well-established nursing scholar program. PMID:24559776

Testing vaccines in pediatric research subjects.

PubMed

Jacobson, Robert M; Ovsyannikova, Inna G; Poland, Gregory A

2009-05-26

Past difficulties encountered in pediatric vaccine research have positively influenced the development of modern regulations of human subjects' research. These regulations permit pediatric research but impose special restrictions on the types of studies to which children may participate, and these restrictions have important implications for modern vaccine trials. These ethical issues pose real but surmountable concerns. Considerations also include the use of placebos, critical for trial design but an impediment to parental permission. Recent pediatric vaccine studies illustrate practical alternatives to placebos that preserve allocation concealment and blinding yet obtain parental support. Vaccine researchers must consider the role parents play, not just in giving formal permission for their children's participation, but also for their roles in active recruitment, successful retention, and data acquisition. Studies of parents' attitudes do identify consistencies among motivating forces that drive parents to participate or refuse their children's participation. These studies should influence how we design and execute pediatric vaccine trials. Finally, ethical considerations and current regulations raise certain issues concerning the remuneration of the research volunteer when that volunteer is a child. The published literature illustrates wide variation in practice. Better understanding of the restrictions in pediatric research, the use of placebos, the attitude of parents, and the concerns with remuneration can better equip the vaccine researcher in pursuing successful studies in children.

Neurodevelopmental consequences of pediatric cancer and its treatment: applying an early adversity framework to understanding cognitive, behavioral, and emotional outcomes.

PubMed

Marusak, Hilary A; Iadipaolo, Allesandra S; Harper, Felicity W; Elrahal, Farrah; Taub, Jeffrey W; Goldberg, Elimelech; Rabinak, Christine A

2018-06-01

Today, children are surviving pediatric cancer at unprecedented rates, making it one of modern medicine's true success stories. However, we are increasingly becoming aware of several deleterious effects of cancer and the subsequent "cure" that extend beyond physical sequelae. Indeed, survivors of childhood cancer commonly report cognitive, emotional, and psychological difficulties, including attentional difficulties, anxiety, and posttraumatic stress symptoms (PTSS). Cognitive late- and long-term effects have been largely attributed to neurotoxic effects of cancer treatments (e.g., chemotherapy, cranial irradiation, surgery) on brain development. The role of childhood adversity in pediatric cancer - namely, the presence of a life-threatening disease and endurance of invasive medical procedures - has been largely ignored in the existing neuroscientific literature, despite compelling research by our group and others showing that exposure to more commonly studied adverse childhood experiences (i.e., domestic and community violence, physical, sexual, and emotional abuse) strongly imprints on neural development. While these adverse childhood experiences are different in many ways from the experience of childhood cancer (e.g., context, nature, source), they do share a common element of exposure to threat (i.e., threat to life or physical integrity). Therefore, we argue that the double hit of early threat and cancer treatments likely alters neural development, and ultimately, cognitive, behavioral, and emotional outcomes. In this paper, we (1) review the existing neuroimaging research on child, adolescent, and adult survivors of childhood cancer, (2) summarize gaps in our current understanding, (3) propose a novel neurobiological framework that characterizes childhood cancer as a type of childhood adversity, particularly a form of early threat, focusing on development of the hippocampus and the salience and emotion network (SEN), and (4) outline future directions for research.

From Bench to Bedside: Understanding Stress-Obesity Research Within the Context of Translation to Improve Pediatric Behavioral Weight Management.

PubMed

Sato, Amy F; Fahrenkamp, Amy J

2016-06-01

A growing body of literature suggests that stress, including chronic stress and acute physiologic stress reactivity, is one contributor to the development and maintenance of obesity in youth. Little has been done to apply the literature on stress and obesity risk to inform the development of pediatric behavioral weight control (BWC) interventions. The aims of this review are to (1) discuss research linking stress and pediatric obesity, (2) provide examples of the implications of the stress-obesity research for pediatric BWC development, and (3) propose that a mindfulness-based approach may be useful in targeting stress reduction within pediatric BWC. Copyright © 2016 Elsevier Inc. All rights reserved.

What does it take to be a successful pediatric surgeon-scientist?

PubMed

Watson, Carey; King, Alice; Mitra, Shaheel; Shaaban, Aimen F; Goldstein, Allan M; Morowitz, Michael J; Warner, Brad W; Crombleholme, Timothy M; Keswani, Sundeep G

2015-06-01

The factors that contribute to success as a pediatric surgeon-scientist are not well defined. The purpose of this study is to define a group of NIH-funded pediatric surgeons, assess their academic productivity, and elucidate factors that have contributed to their success. Pediatric surgeons were queried in the NIH report database to determine NIH funding awarded. Academic productivity was then assessed. An online survey was then targeted to NIH-funded pediatric surgeons. Since 1988, 83 pediatric surgeon-investigators have received major NIH funding. Currently, there are 37 pediatric surgeons with 43 NIH-sponsored awards. The mean h-index of this group of pediatric surgeons was 18 ± 1.1, mean number of publications (since 2001) was 21 ± 2.1, and both increase commensurate with academic rank. In response to the survey, 81% engaged in research during their surgical residency, and 48% were mentored by a pediatric surgeon-scientist. More than 60% of respondents had significant protected time and financial support. Factors felt to be most significant for academic success included mentorship, perseverance, and protected time. Mentorship, perseverance, institutional commitment to protected research time, and financial support are considered to be important to facilitate the successes of pediatric surgeon-scientists. These results will be useful to aspiring pediatric surgeon-scientists and departments wishing to develop a robust research program. Copyright © 2015 Elsevier Inc. All rights reserved.

Blueprint for Action: Visioning Summit on the Future of the Workforce in Pediatrics.

PubMed

Sectish, Theodore C; Hay, William W; Mahan, John D; Mendoza, Fernando S; Spector, Nancy D; Stanton, Bonita; Szilagyi, Peter G; Turner, Teri L; Walker, Leslie R; Slaw, Kenneth

2015-07-01

The Federation of Pediatric Organizations engaged members of the pediatric community in an 18-month process to envision the future of the workforce in pediatrics, culminating in a Visioning Summit on the Future of the Workforce in Pediatrics. This article documents the planning process and methods used. Four working groups were based on the 4 domains that are likely to affect the future workforce: Child Health Research and Training, Diversity and Inclusion, Gender and Generations, and Pediatric Training Along the Continuum. These groups identified the issues and trends and prioritized their recommendations. Before the summit, 5 key megatrends cutting across all domains were identified:1. Aligning Education to the Emerging Health Needs of Children and Families 2. Promoting Future Support for Research Training and for Child Health Research 3. Striving Toward Mastery Within the Profession 4. Aligning and Optimizing Pediatric Practice in a Changing Health Care Delivery System 5. Taking Advantage of the Changing Demographics and Expertise of the Pediatric Workforce At the Visioning Summit, we assembled members of each of the working groups, the Federation of Pediatric Organizations Board of Directors, and several invited guests to discuss the 5 megatrends and develop the vision, solutions, and actions for each megatrend. Based on this discussion, we offer 10 recommendations for the field of pediatrics and its leading organizations to consider taking action. Copyright © 2015 by the American Academy of Pediatrics.

Preliminary findings of altered functional connectivity of the default mode network linked to functional outcomes one year after pediatric traumatic brain injury.

PubMed

Stephens, Jaclyn A; Salorio, Cynthia F; Barber, Anita D; Risen, Sarah R; Mostofsky, Stewart H; Suskauer, Stacy J

2017-07-10

This study examined functional connectivity of the default mode network (DMN) and examined brain-behavior relationships in a pilot cohort of children with chronic mild to moderate traumatic brain injury (TBI). Compared to uninjured peers, children with TBI demonstrated less anti-correlated functional connectivity between DMN and right Brodmann Area 40 (BA 40). In children with TBI, more anomalous less anti-correlated) connectivity between DMN and right BA 40 was linked to poorer performance on response inhibition tasks. Collectively, these preliminary findings suggest that functional connectivity between DMN and BA 40 may relate to longterm functional outcomes in chronic pediatric TBI.

[Building epilepsy care network in Japan].

PubMed

Otsuki, Taisuke

2012-01-01

Number of epilepsy patient in Japan officially surveyed by our government in 2008 is 219,000, which is only 0.17% of the total population and less than one third of the prevalence rate reported in Western countries. Number of epilepsy surgery per year in Japan is also low and less than half of other countries such as US, UK and Korea. These numbers may suggest that epilepsy care in Japan is not sufficient to cover all hidden medical needs of people with epilepsy at present. To solve this issue, our research group funded by the government have started to build an epilepsy care network among primary care physicians, secondary care neurology specialists and tertiary care epilepsy centers by utilizing a web site: Epilepsy Care Network-Japan (http://www.ecn-japan.com/) from July 2012. We are also proposing an epilepsy care algorithm suitable for our complex medical community consisted with various neurology specialists such as pediatric and adult neurologists, neurosurgeons and psychiatrists. Building Epilepsy Care Network in Japan may facilitate better medical and social support for people with epilepsy in Japan.

Altered network topology in pediatric traumatic brain injury

NASA Astrophysics Data System (ADS)

Dennis, Emily L.; Rashid, Faisal; Babikian, Talin; Mink, Richard; Babbitt, Christopher; Johnson, Jeffrey; Giza, Christopher C.; Asarnow, Robert F.; Thompson, Paul M.

2017-11-01

Outcome after a traumatic brain injury (TBI) is quite variable, and this variability is not solely accounted for by severity or demographics. Identifying sub-groups of patients who recover faster or more fully will help researchers and clinicians understand sources of this variability, and hopefully lead to new therapies for patients with a more prolonged recovery profile. We have previously identified two subgroups within the pediatric TBI patient population with different recovery profiles based on an ERP-derived (event-related potential) measure of interhemispheric transfer time (IHTT). Here we examine structural network topology across both patient groups and healthy controls, focusing on the `rich-club' - the core of the network, marked by high degree nodes. These analyses were done at two points post-injury - 2-5 months (post-acute), and 13-19 months (chronic). In the post-acute time-point, we found that the TBI-slow group, those showing longitudinal degeneration, showed hyperconnectivity within the rich-club nodes relative to the healthy controls, at the expense of local connectivity. There were minimal differences between the healthy controls and the TBI-normal group (those patients who show signs of recovery). At the chronic phase, these disruptions were no longer significant, but closer analysis showed that this was likely due to the loss of power from a smaller sample size at the chronic time-point, rather than a sign of recovery. We have previously shown disruptions to white matter (WM) integrity that persist and progress over time in the TBI-slow group, and here we again find differences in the TBI-slow group that fail to resolve over the first year post-injury.

Commentary: Pediatric Epilepsy: A Good Fit for Pediatric Psychologists

PubMed Central

Modi, Avani; Smith, Gigi

2011-01-01

While there are an abundance of pediatric neuropsychologists working with youth with epilepsy (YWE), other subspecialty psychologists have played minimal roles in clinical and research endeavors in pediatric epilepsy. Thus, the purpose of this commentary was to describe (a) the needs of YWE due to the intermittent nature of seizures and difficulties with disease management, (b) increased risk for psychosocial comorbidities, (c) limited access to care, and (d) provide recommendations for how pediatric psychologists can become involved in the clinical care and research activities for YWE. PMID:21148174

Disseminating educational innovations in health care practice: training versus social networks.

PubMed

Jippes, Erik; Achterkamp, Marjolein C; Brand, Paul L P; Kiewiet, Derk Jan; Pols, Jan; van Engelen, Jo M L

2010-05-01

Improvements and innovation in health service organization and delivery have become more and more important due to the gap between knowledge and practice, rising costs, medical errors, and the organization of health care systems. Since training and education is widely used to convey and distribute innovative initiatives, we examined the effect that following an intensive Teach-the-Teacher training had on the dissemination of a new structured competency-based feedback technique of assessing clinical competencies among medical specialists in the Netherlands. We compared this with the effect of the structure of the social network of medical specialists, specifically the network tie strength (strong ties versus weak ties). We measured dissemination of the feedback technique by using a questionnaire filled in by Obstetrics & Gynecology and Pediatrics residents (n=63). Data on network tie strength was gathered with a structured questionnaire given to medical specialists (n=81). Social network analysis was used to compose the required network coefficients. We found a strong effect for network tie strength and no effect for the Teach-the-Teacher training course on the dissemination of the new structured feedback technique. This paper shows the potential that social networks have for disseminating innovations in health service delivery and organization. Further research is needed into the role and structure of social networks on the diffusion of innovations between departments and the various types of innovations involved. Copyright (c) 2010 Elsevier Ltd. All rights reserved.

Physical activity and pediatric multiple sclerosis: Developing a research agenda.

PubMed

Yeh, E Ann; Kinnett-Hopkins, Dominique; Grover, Stephanie A; Motl, Robert W

2015-11-01

Three-quarters of children with multiple sclerosis (MS) experience fatigue or depression, and progressive neurocognitive decline may be seen as early as two years after MS diagnosis. Furthermore, a higher magnetic resonance imaging disease burden is seen in pediatric-onset MS compared with adult-onset MS. To date, limited knowledge exists regarding behavioral methods for managing symptoms and disease progression in pediatric MS. To that end, this paper builds an evidence-based argument for the possible symptomatic and disease-modifying effects of exercise and physical activity in pediatric MS. This will be accomplished through: (a) a review of pediatric MS and its consequences; (b) a brief overview of physical activity and its consequences in children and adults with MS; and (c) a selective review of research on the neurological benefits of physical activity in pediatric populations. This topical review concludes with a list of 10 questions to guide future research on physical activity and pediatric MS. The objective of this paper is the provision of a research interest, focus and agenda involving pediatric MS and its lifelong management though exercise and physical activity behavior. Such an agenda is critical as the effects and maintenance of physical activity and exercise track across the lifespan, particularly when developed in the early stages of life. © The Author(s), 2015.

Genome-wide network analysis of Wnt signaling in three pediatric cancers

NASA Astrophysics Data System (ADS)

Bao, Ju; Lee, Ho-Jin; Zheng, Jie J.

2013-10-01

Genomic structural alteration is common in pediatric cancers, and analysis of data generated by the Pediatric Cancer Genome Project reveals such tumor-related alterations in many Wnt signaling-associated genes. Most pediatric cancers are thought to arise within developing tissues that undergo substantial expansion during early organ formation, growth and maturation, and Wnt signaling plays an important role in this development. We examined three pediatric tumors--medullobastoma, early T-cell precursor acute lymphoblastic leukemia, and retinoblastoma--that show multiple genomic structural variations within Wnt signaling pathways. We mathematically modeled this pathway to investigate the effects of cancer-related structural variations on Wnt signaling. Surprisingly, we found that an outcome measure of canonical Wnt signaling was consistently similar in matched cancer cells and normal cells, even in the context of different cancers, different mutations, and different Wnt-related genes. Our results suggest that the cancer cells maintain a normal level of Wnt signaling by developing multiple mutations.

Patient-tailored prioritization for a pediatric care decision support system through machine learning.

PubMed

Klann, Jeffrey G; Anand, Vibha; Downs, Stephen M

2013-12-01

Over 8 years, we have developed an innovative computer decision support system that improves appropriate delivery of pediatric screening and care. This system employs a guidelines evaluation engine using data from the electronic health record (EHR) and input from patients and caregivers. Because guideline recommendations typically exceed the scope of one visit, the engine uses a static prioritization scheme to select recommendations. Here we extend an earlier idea to create patient-tailored prioritization. We used Bayesian structure learning to build networks of association among previously collected data from our decision support system. Using area under the receiver-operating characteristic curve (AUC) as a measure of discriminability (a sine qua non for expected value calculations needed for prioritization), we performed a structural analysis of variables with high AUC on a test set. Our source data included 177 variables for 29 402 patients. The method produced a network model containing 78 screening questions and anticipatory guidance (107 variables total). Average AUC was 0.65, which is sufficient for prioritization depending on factors such as population prevalence. Structure analysis of seven highly predictive variables reveals both face-validity (related nodes are connected) and non-intuitive relationships. We demonstrate the ability of a Bayesian structure learning method to 'phenotype the population' seen in our primary care pediatric clinics. The resulting network can be used to produce patient-tailored posterior probabilities that can be used to prioritize content based on the patient's current circumstances. This study demonstrates the feasibility of EHR-driven population phenotyping for patient-tailored prioritization of pediatric preventive care services.

Magnetic resonance imaging research in sub-Saharan Africa: challenges and satellite-based networking implementation.

PubMed

Latourette, Matthew T; Siebert, James E; Barto, Robert J; Marable, Kenneth L; Muyepa, Anthony; Hammond, Colleen A; Potchen, Michael J; Kampondeni, Samuel D; Taylor, Terrie E

2011-08-01

As part of an NIH-funded study of malaria pathogenesis, a magnetic resonance (MR) imaging research facility was established in Blantyre, Malaŵi to enhance the clinical characterization of pediatric patients with cerebral malaria through application of neurological MR methods. The research program requires daily transmission of MR studies to Michigan State University (MSU) for clinical research interpretation and quantitative post-processing. An intercontinental satellite-based network was implemented for transmission of MR image data in Digital Imaging and Communications in Medicine (DICOM) format, research data collection, project communications, and remote systems administration. Satellite Internet service costs limited the bandwidth to symmetrical 384 kbit/s. DICOM routers deployed at both the Malaŵi MRI facility and MSU manage the end-to-end encrypted compressed data transmission. Network performance between DICOM routers was measured while transmitting both mixed clinical MR studies and synthetic studies. Effective network latency averaged 715 ms. Within a mix of clinical MR studies, the average transmission time for a 256 × 256 image was ~2.25 and ~6.25 s for a 512 × 512 image. Using synthetic studies of 1,000 duplicate images, the interquartile range for 256 × 256 images was [2.30, 2.36] s and [5.94, 6.05] s for 512 × 512 images. Transmission of clinical MRI studies between the DICOM routers averaged 9.35 images per minute, representing an effective channel utilization of ~137% of the 384-kbit/s satellite service as computed using uncompressed image file sizes (including the effects of image compression, protocol overhead, channel latency, etc.). Power unreliability was the primary cause of interrupted operations in the first year, including an outage exceeding 10 days.

Fidelity in Animal Modeling: Prerequisite for a Mechanistic Research Front Relevant to the Inflammatory Incompetence of Acute Pediatric Malnutrition.

PubMed

Woodward, Bill

2016-04-11

Inflammatory incompetence is characteristic of acute pediatric protein-energy malnutrition, but its underlying mechanisms remain obscure. Perhaps substantially because the research front lacks the driving force of a scholarly unifying hypothesis, it is adrift and research activity is declining. A body of animal-based research points to a unifying paradigm, the Tolerance Model, with some potential to offer coherence and a mechanistic impetus to the field. However, reasonable skepticism prevails regarding the relevance of animal models of acute pediatric malnutrition; consequently, the fundamental contributions of the animal-based component of this research front are largely overlooked. Design-related modifications to improve the relevance of animal modeling in this research front include, most notably, prioritizing essential features of pediatric malnutrition pathology rather than dietary minutiae specific to infants and children, selecting windows of experimental animal development that correspond to targeted stages of pediatric immunological ontogeny, and controlling for ontogeny-related confounders. In addition, important opportunities are presented by newer tools including the immunologically humanized mouse and outbred stocks exhibiting a magnitude of genetic heterogeneity comparable to that of human populations. Sound animal modeling is within our grasp to stimulate and support a mechanistic research front relevant to the immunological problems that accompany acute pediatric malnutrition.

Social dysfunction after pediatric traumatic brain injury: a translational perspective

PubMed Central

Ryan, Nicholas P.; Catroppa, Cathy; Godfrey, Celia; Noble-Haeusslein, Linda J.; Shultz, Sandy R.; O'Brien, Terence J.; Anderson, Vicki; Semple, Bridgette D.

2016-01-01

Social dysfunction is common after traumatic brain injury (TBI), contributing to reduced quality of life for survivors. Factors which influence the emergence, development or persistence of social deficits after injury remain poorly understood, particularly in the context of ongoing brain maturation during childhood. Aberrant social interactions have recently been modeled in adult and juvenile rodents after experimental TBI, providing an opportunity to gain new insights into the underlying neurobiology of these behaviors. Here, we review our current understanding of social dysfunction in both humans and rodent models of TBI, with a focus on brain injuries acquired during early development. Modulators of social outcomes are discussed, including injury-related and environmental risk and resilience factors. Disruption of social brain network connectivity and aberrant neuroendocrine function are identified as potential mechanisms of social impairments after pediatric TBI. Throughout, we highlight the overlap and disparities between outcome measures and findings from clinical and experimental approaches, and explore the translational potential of future research to prevent or ameliorate social dysfunction after childhood TBI. PMID:26949224

Prevalence of Parental Smoking and Predictors of Cessation: A Study in the South Carolina Pediatric Practice Research Network

PubMed Central

Roberts, James R.; Basco, William T.; Hulsey, Thomas C.; Ebeling, Myla D.; O’Brien, Elizabeth; Alberg, Anthony J.

2015-01-01

Background Secondhand smoke exposure harms children. The objectives of the study were to determine the prevalence of secondhand smoke exposure in children ≤2 years and determine the predictors of smoking and smoking cessation in parents. Methods We surveyed parents of children ≤2 years of age, asking about parental smoking patterns, interest in quitting and children’s respiratory symptoms. Data were analyzed with chi-square and multiple logistic regression. Results Thirteen percent were current smokers and 18% had quit. The most common reason for quitting was being pregnant (42%). Children’s respiratory symptoms did not predict quitting. Parents on Medicaid were more likely to smoke than those on private insurance (OR = 5.7, 95% CI = 2.0–16.5) and less likely to quit (OR = 0.2, 95% CI = 0.1–0.9). Conclusion Having a new baby may be a motivator for parents to quit. We must address socioeconomic factors to develop a successful intervention in pediatric practices. PMID:25520365

Traumatic Brain Injury in Children: Role of CDRs-PECARN as a Clinical Predictive Resource for Evaluation of Intracranical Lesions and Neuropsychiatric Outcomes.

PubMed

Ferrara, Pietro; Basile, Maria Cristina; Dell'Aquila, Livia; Vena, Flaminia; Coppo, Elena; Chiaretti, Antonio; Verrotti, Alberto; Paolini, Fabrizio; Caldarelli, Massimo

2016-01-01

Cranial computed tomography (CT) is considered the gold standard for the diagnosis of traumatic brain injury (TBI). The aim of this study was to evaluate if the clinical decision rules proposed by the Pediatric Emergency Care Applied Research Network (CDRs-PECARN) are really able to identify the patients who do not need cranial CT. This study investigates the neuropsychiatric outcome after TBI according to a pediatric version of the Glasgow Outcome Scale-Extended (GOS-E Peds). We calculated the sensitivity, specificity, negative predictive value (NPV) and positive predictive value of the CDRs-PECARN in 2 age groups. Sensitivity was very high in both groups, and the NPV was very useful for predicting which subjects, of those who presented without CDRs- PECARN, would have a negative cranial CT. We also evaluated the correlations between the GOS-E Peds and Glasgow Coma Scale and between the GOS-E Peds and cranial CT scan. Our study confirms the validation of the PECARN TBI prediction rules as a clinical instrument which can play a significant role in CT decision-making for children with TBI. It also demonstrates that the GOS-E Peds is a valid pediatric outcome scale for children with TBI, despite some important limitations. © 2016 S. Karger AG, Basel.

Pediatric Diabetes Telemedicine Program Improves Access to Care for Rural Families: Role of APRNs.

PubMed

Smith, Nancy Marie; Satyshur, Rosemarie DiMauro

2016-01-01

Type 1 diabetes mellitus has increased in children by 23% from 2001 to 2009. Rural communities additionally have increased disparities related to access barriers and a large minority population with poorer overall health. Research evidence supports telemedicine as an effective alternative to bring preventive diabetes care to remote areas. This article presents an overview of the leadership role of advanced practice registered nurses (APRNs) with the implementation and evaluation of a pediatric diabetes telemedicine program at a rural pediatric outpatient specialty clinic in partnership with a tertiary center telemedicine network. The telemedicine program quality improvement (QI) project explored caregiver satisfaction with a convenience sample of caregivers (N = 14) using a nine-item Telemedicine Diabetes Caregiver Satisfaction Survey (TDCSS), with responses ranging from 1 = strongly disagree to 5 = strongly agree. Findings indicate caregivers were highly satisfied with communication/ privacy (M = 4.8), access to care (M = 4.1), and quality of services (M = 5.0). The multidisciplinary collaborative teamwork, continuous QI, and dependable technology were integral to the quality of the telemedicine clinical initiative. APRNs provided technology expertise, interdisciplinary collaboration leadership, care coordination, and advocacy for policy changes. Results demonstrate that telemedicine and APRN leadership can help implement innovative programs into rural communities to improve access to care, healthcare cost, and outcomes.

Children as research subjects: moral disputes, regulatory guidance, and recent court decisions.

PubMed

Kopelman, Loretta M

2006-05-01

The millennium has ushered in a new era of oversight for pediatric research, with renewed moral and legal attention to the upper thresholds of potential harms to which children may be exposed in studies. Watershed events discussed include: First, the deaths of two research subjects, allegedly due to insufficient oversight by the investigators and their institutional review boards. Second, the courts expressed concerns about research policies for incompetent persons or children in two cases, T.D. v. N.Y. and Grimes v. Kennedy Krieger Institute, and reinforcement of the principle that the best interest standard must be used for incompetent persons even in research. Third, the Best Pharmaceutical for Children Act and the Pediatric Rule created incentives as well as uncertainty among Institutional Review Boards and researchers about conducting pediatric studies. Fourth, the Office of Human Research Protection signaled the start of more rigorous oversight with its public rebuke and suspension of a National Institute of Child Health and Human Development pediatric obesity study. Failure to clarify the meaning of the pediatric regulations has sometimes misled generally risk-averse institutions and dedicated investigators about what is permissible.

Pediatric Oncology Branch - Support Services | Center for Cancer Research

Cancer.gov

Support Services As part of the comprehensive care provided at the NCI Pediatric Oncology Branch, we provide a wide range of services to address the social, psychological, emotional, and practical facets of pediatric cancer and to support patients and families while they are enrolled in clinical research protocols.

The role of simulation in teaching pediatric resuscitation: current perspectives

PubMed Central

Lin, Yiqun; Cheng, Adam

2015-01-01

The use of simulation for teaching the knowledge, skills, and behaviors necessary for effective pediatric resuscitation has seen widespread growth and adoption across pediatric institutions. In this paper, we describe the application of simulation in pediatric resuscitation training and review the evidence for the use of simulation in neonatal resuscitation, pediatric advanced life support, procedural skills training, and crisis resource management training. We also highlight studies supporting several key instructional design elements that enhance learning, including the use of high-fidelity simulation, distributed practice, deliberate practice, feedback, and debriefing. Simulation-based training is an effective modality for teaching pediatric resuscitation concepts. Current literature has revealed some research gaps in simulation-based education, which could indicate the direction for the future of pediatric resuscitation research. PMID:25878517

Educating Parents About Pediatric Research: Children and Clinical Studies Website Qualitative Evaluation.

PubMed

Marceau, Lisa D; Welch, Lisa C; Pemberton, Victoria L; Pearson, Gail D

2016-07-01

A gap in information about pediatric clinical trials exists, and parents remain uncertain about what is involved in research studies involving children. We aimed to understand parent perspectives about pediatric clinical research after viewing the online Children and Clinical Studies (CaCS) program. Using a qualitative descriptive study design, we conducted focus groups with parents and phone interviews with physicians. Three themes emerged providing approaches to improve parent's understanding of clinical research by including strategies where parents (a) hear from parents like themselves to learn about pediatric research, (b) receive general clinical research information to complement study-specific details, and (c) are provided more information about the role of healthy child volunteers. Parents found the website a valuable tool that would help them make a decision about what it means to participate in research. This tool can assist parents, providers, and researchers by connecting general information with study-specific information. © The Author(s) 2015.

Pediatric Critical Care Nursing Research Priorities-Initiating International Dialogue.

PubMed

Tume, Lyvonne N; Coetzee, Minette; Dryden-Palmer, Karen; Hickey, Patricia A; Kinney, Sharon; Latour, Jos M; Pedreira, Mavilde L G; Sefton, Gerri R; Sorce, Lauren; Curley, Martha A Q

2015-07-01

To identify and prioritize research questions of concern to the practice of pediatric critical care nursing practice. One-day consensus conference. By using a conceptual framework by Benner et al describing domains of practice in critical care nursing, nine international nurse researchers presented state-of-the-art lectures. Each identified knowledge gaps in their assigned practice domain and then poised three research questions to fill that gap. Then, meeting participants prioritized the proposed research questions using an interactive multivoting process. Seventh World Congress on Pediatric Intensive and Critical Care in Istanbul, Turkey. Pediatric critical care nurses and nurse scientists attending the open consensus meeting. Systematic review, gap analysis, and interactive multivoting. The participants prioritized 27 nursing research questions in nine content domains. The top four research questions were 1) identifying nursing interventions that directly impact the child and family's experience during the withdrawal of life support, 2) evaluating the long-term psychosocial impact of a child's critical illness on family outcomes, 3) articulating core nursing competencies that prevent unstable situations from deteriorating into crises, and 4) describing the level of nursing education and experience in pediatric critical care that has a protective effect on the mortality and morbidity of critically ill children. The consensus meeting was effective in organizing pediatric critical care nursing knowledge, identifying knowledge gaps and in prioritizing nursing research initiatives that could be used to advance nursing science across world regions.

Canavan disease

MedlinePlus

... et al, eds. Swaiman's Pediatric Neurology: Principles and Practice . 6th ed. Philadelphia, PA: ... Review provided by VeriMed Healthcare Network. Also reviewed by David Zieve, MD, MHA, Medical ...

Privacy and ethics in pediatric environmental health research-part II: protecting families and communities.

PubMed

Fisher, Celia B

2006-10-01

In pediatric environmental health research, information about family members is often directly sought or indirectly obtained in the process of identifying child risk factors and helping to tease apart and identify interactions between genetic and environmental factors. However, federal regulations governing human subjects research do not directly address ethical issues associated with protections for family members who are not identified as the primary "research participant." Ethical concerns related to family consent and privacy become paramount as pediatric environmental health research increasingly turns to questions of gene-environment interactions. In this article I identify issues arising from and potential solutions for the privacy and informed consent challenges of pediatric environmental health research intended to adequately protect the rights and welfare of children, family members, and communities. I first discuss family members as secondary research participants and then the specific ethical challenges of longitudinal research on late-onset environmental effects and gene-environment interactions. I conclude with a discussion of the confidentiality and social risks of recruitment and data collection of research conducted within small or unique communities, ethnic minority populations, and low-income families. The responsible conduct of pediatric environmental health research must be conceptualized as a goodness of fit between the specific research context and the unique characteristics of subjects and other family stakeholders.

Comparative audit of clinical research in pediatric neurology.

PubMed

Al-Futaisi, Amna; Shevell, Michael

2004-11-01

Clinical research involves direct observation or data collection on human subjects. This study was conducted to evaluate the profile of pediatric neurology clinical research over a decade. Trends in pediatric neurology clinical research were documented through a systematic comparative review of articles published in selected journals. Eleven journals (five pediatric neurology, three general neurology, three general pediatrics) were systematically reviewed for articles involving a majority of human subjects less than 18 years of age for the years 1990 and 2000. Three hundred thirty-five clinical research articles in pediatric neurology were identified in the 11 journals for 1990 and 398 for 2000, a 19% increase. A statistically significant increase in analytic design (21.8% vs 39.5%; P = .01), statistical support (6% vs 16.6%; P < .0001), and multidisciplinary team (69.9% vs 87%; P = .003) was observed. In terms of specific study design, a significant decline in case reports (34.3% vs 10.3%; P < .0001) and an increase in case-control studies (11.3% vs 22.9%; P = .02) were evident over the 10-year interval. This comparative audit revealed that there has been a discernible change in the methodology profile of clinical research in child neurology over a decade. Trends apparently suggest a more rigorous approach to study design and investigation in this field.

An official American Thoracic Society/International Society for Heart and Lung Transplantation/Society of Critical Care Medicine/Association of Organ and Procurement Organizations/United Network of Organ Sharing Statement: ethical and policy considerations in organ donation after circulatory determination of death.

PubMed

Gries, Cynthia J; White, Douglas B; Truog, Robert D; Dubois, James; Cosio, Carmen C; Dhanani, Sonny; Chan, Kevin M; Corris, Paul; Dark, John; Fulda, Gerald; Glazier, Alexandra K; Higgins, Robert; Love, Robert; Mason, David P; Nakagawa, Thomas A; Shapiro, Ron; Shemie, Sam; Tracy, Mary Fran; Travaline, John M; Valapour, Maryam; West, Lori; Zaas, David; Halpern, Scott D

2013-07-01

Donation after circulatory determination of death (DCDD) has the potential to increase the number of organs available for transplantation. Because consent and management of potential donors must occur before death, DCDD raises unique ethical and policy issues. To develop an ethics and health policy statement on adult and pediatric DCDD relevant to critical care and transplantation stakeholders. A multidisciplinary panel of stakeholders was convened to develop an ethics and health policy statement. The panel consisted of representatives from the American Thoracic Society, Society of Critical Care Medicine, International Society for Heart and Lung Transplantation, Association of Organ Procurement Organizations, and the United Network of Organ Sharing. The panel reviewed the literature, discussed important ethics and health policy considerations, and developed a guiding framework for decision making by stakeholders. A framework to guide ethics and health policy statement was established, which addressed the consent process, pre- and post mortem interventions, the determination of death, provisions of end-of-life care, and pediatric DCDD. The information presented in this Statement is based on the current evidence, experience, and clinical rationale. New clinical research and the development and dissemination of new technologies will eventually necessitate an update of this Statement.

Childhood obesity in secondary care: national prospective audit of Australian pediatric practice.

PubMed

Campbell, Michele; Bryson, Hannah E; Price, Anna M H; Wake, Melissa

2013-01-01

In many countries, pediatricians offer skilled secondary care for children with conditions more challenging than can readily be managed in the primary care sector, but the extent to which this sector engages with the detection and management of obesity remains largely unexplored. This study aimed to audit the prevalence, diagnosis, patient, and consultation characteristics of obesity in Australian pediatric practices. This was a national prospective patient audit in Australia. During the course of 2 weeks, members of the Australian Paediatric Research Network prospectively recorded consecutive outpatient consultations by using a brief standardized data collection form. Measures included height, weight, demographics, child and parent health ratings, diagnoses, referrals, investigations, and consultation characteristics. We compared the prevalence of pediatrician-diagnosed and measured obesity (body mass index ≥95th percentile) and top-ranked diagnoses, patient, and consultation characteristics in (a) obese and nonobese children, and (b) obese children with and without a diagnosis. A total of 198 pediatricians recorded 5466 consultations with 2-17 year olds, with body mass index z-scores calculated for 3436 (62.9%). Of the 12.6% obese children, only one-third received an "overweight/obese" diagnosis. Obese children diagnosed as overweight/obese were heavier, older, and in poorer health than those not diagnosed and incurred more Medicare (government-funded health system) cost and referrals. Obesity is infrequently clinically diagnosed by Australian pediatricians and measurement practices vary widely. Further research could focus on supporting and normalizing clinical obesity activities from which pediatricians and parents could see clear benefits. Copyright © 2013 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.

Quality assurance and improvement: the Pediatric Regional Anesthesia Network.

PubMed

Polaner, David M; Martin, Lynn D

2012-01-01

Quality assurance and improvement (QA/QI) is a critical activity in medicine. The use of large-scale collaborative databases is increasingly essential to obtain enough reports with which to establish standards of practice and define the incidence of complications and risk/benefit ratios for rare events. Such projects can enhance local QA/QI endeavors by enabling institutions to obtain benchmark data against which to compare their performance and can be used for prospective analyses of inter-institutional differences to determine 'best practice'. The pediatric regional anesthesia network (PRAN) is such a project. The first data cohort is currently being analyzed and offers insight into how such data can be used to detect trends in adverse events and improve care. © 2011 Blackwell Publishing Ltd.

Digital Media, Participatory Politics, and Positive Youth Development.

PubMed

Middaugh, Ellen; Clark, Lynn Schofield; Ballard, Parissa J

2017-11-01

Research on the social implications of adolescent technology use often focuses on identifying and preventing risk. However, adolescence is also a time of rapidly expanding capacities, expectations of autonomy, and identity exploration. In this article, we highlight findings from research in the field of youth civic development, which point to the importance of youth civic engagement during adolescence for later adult civic engagement as well as for promoting positive developmental outcomes. Researchers suggest that certain forms of Internet use (such as information seeking, social network site use, media production, and participation in online communities) promote civic engagement and that digital tools play an important role in youth empowerment efforts. In this article, we suggest a need for greater attention to efforts to promote digital media competencies among adolescents and for greater coordination of research on adolescent risk and adolescent autonomy and empowerment related to Internet use. Copyright © 2017 by the American Academy of Pediatrics.

Work Experience Program at a Metropolitan Paediatric Hospital: Assisting Rural and Metropolitan Allied Health Professionals Exchange Clinical Skills.

ERIC Educational Resources Information Center

Parkin, Ann E.; McMahon, Sandra; Upfield, Nancy; Copley, Jodie; Hollands, Karen

2001-01-01

A clinical experience program provided 29 rural Australian allied health professionals with experience in pediatric clinical areas and opportunities to share clinical knowledge and develop networks with metropolitan peers. Questionnaires and focus groups indicated that networking, clinical skills, knowledge, confidence, and awareness of rural…

Guidelines and checklists for short-term missions in global pediatric surgery: Recommendations from the American Academy of Pediatrics Delivery of Surgical Care Global Health Subcommittee, American Pediatric Surgical Association Global Pediatric Surgery Committee, Society for Pediatric Anesthesia Committee on International Education and Service, and American Pediatric Surgical Nurses Association, Inc. Global Health Special Interest Group.

PubMed

Butler, Marilyn; Drum, Elizabeth; Evans, Faye M; Fitzgerald, Tamara; Fraser, Jason; Holterman, Ai-Xuan; Jen, Howard; Kynes, J Matthew; Kreiss, Jenny; McClain, Craig D; Newton, Mark; Nwomeh, Benedict; O'Neill, James; Ozgediz, Doruk; Politis, George; Rice, Henry; Rothstein, David; Sanchez, Julie; Singleton, Mark; Yudkowitz, Francine S

2018-04-01

Pediatric surgeons, anesthesia providers, and nurses from North America and other high-income countries (HICs) are increasingly engaged in resource-limited areas, with short-term missions (STMs) as the most common form of involvement. However, consensus recommendations currently do not exist for STMs in pediatric general surgery and associated perioperative care. The American Academy of Pediatrics (AAP) Delivery of Surgical Care Subcommittee and American Pediatric Surgical Association (APSA) Global Pediatric Surgery Committee, with the American Pediatric Surgical Nurses Association, Inc. (APSNA) Global Health Special Interest Group, and the Society for Pediatric Anesthesia (SPA) Committee on International Education and Service generated consensus recommendations for STMs based on extensive experience with STMs. Three distinct, but related areas were identified: 1) Broad goals of surgical partnerships between HICs- and low and middle-income countries (LMICs). A previous set of guidelines published by the Global Paediatric Surgery Network Collaborative (GPSN), was endorsed by all groups; 2) Guidelines for the conduct of STMs were developed, including planning, in-country perioperative patient care, post-trip follow-up, and sustainability; 3) travel and safety considerations critical to STM success were enumerated. A diverse group of stakeholders developed these guidelines for STMs in LMICs. These guidelines may be a useful tool to ensure safe, responsible, and ethical STMs given increasing engagement of HIC providers in this work. 5. Copyright © 2017 Elsevier Inc. All rights reserved.

Childhood asthma clusters and response to therapy in clinical trials.

PubMed

Chang, Timothy S; Lemanske, Robert F; Mauger, David T; Fitzpatrick, Anne M; Sorkness, Christine A; Szefler, Stanley J; Gangnon, Ronald E; Page, C David; Jackson, Daniel J

2014-02-01

Childhood asthma clusters, or subclasses, have been developed by computational methods without evaluation of clinical utility. To replicate and determine whether childhood asthma clusters previously identified computationally in the Severe Asthma Research Program (SARP) are associated with treatment responses in Childhood Asthma Research and Education (CARE) Network clinical trials. A cluster assignment model was determined by using SARP participant data. A total of 611 participants 6 to 18 years old from 3 CARE trials were assigned to SARP pediatric clusters. Primary and secondary outcomes were analyzed by cluster in each trial. CARE participants were assigned to SARP clusters with high accuracy. Baseline characteristics were similar between SARP and CARE children of the same cluster. Treatment response in CARE trials was generally similar across clusters. However, with the caveat of a smaller sample size, children in the early-onset/severe-lung function cluster had best response with fluticasone/salmeterol (64% vs 23% 2.5× fluticasone and 13% fluticasone/montelukast in the Best ADd-on Therapy Giving Effective Responses trial; P = .011) and children in the early-onset/comorbidity cluster had the least clinical efficacy to treatments (eg, -0.076% change in FEV1 in the Characterizing Response to Leukotriene Receptor Antagonist and Inhaled Corticosteroid trial). In this study, we replicated SARP pediatric asthma clusters by using a separate, large clinical trials network. Early-onset/severe-lung function and early-onset/comorbidity clusters were associated with differential and limited response to therapy, respectively. Further prospective study of therapeutic response by cluster could provide new insights into childhood asthma treatment. Copyright © 2013 American Academy of Allergy, Asthma & Immunology. Published by Mosby, Inc. All rights reserved.

A computable phenotype for asthma case identification in adult and pediatric patients: External validation in the Chicago Area Patient-Outcomes Research Network (CAPriCORN).

PubMed

Afshar, Majid; Press, Valerie G; Robison, Rachel G; Kho, Abel N; Bandi, Sindhura; Biswas, Ashvini; Avila, Pedro C; Kumar, Harsha Vardhan Madan; Yu, Byung; Naureckas, Edward T; Nyenhuis, Sharmilee M; Codispoti, Christopher D

2017-10-13

Comprehensive, rapid, and accurate identification of patients with asthma for clinical care and engagement in research efforts is needed. The original development and validation of a computable phenotype for asthma case identification occurred at a single institution in Chicago and demonstrated excellent test characteristics. However, its application in a diverse payer mix, across different health systems and multiple electronic health record vendors, and in both children and adults was not examined. The objective of this study is to externally validate the computable phenotype across diverse Chicago institutions to accurately identify pediatric and adult patients with asthma. A cohort of 900 asthma and control patients was identified from the electronic health record between January 1, 2012 and November 30, 2014. Two physicians at each site independently reviewed the patient chart to annotate cases. The inter-observer reliability between the physician reviewers had a κ-coefficient of 0.95 (95% CI 0.93-0.97). The accuracy, sensitivity, specificity, negative predictive value, and positive predictive value of the computable phenotype were all above 94% in the full cohort. The excellent positive and negative predictive values in this multi-center external validation study establish a useful tool to identify asthma cases in in the electronic health record for research and care. This computable phenotype could be used in large-scale comparative-effectiveness trials.

International Variability in Gastrointestinal Decontamination With Acute Poisonings.

PubMed

Mintegi, Santiago; Dalziel, Stuart R; Azkunaga, Beatriz; Prego, Javier; Arana-Arri, Eunate; Acedo, Yordana; Martinez-Indart, Lorea; Benito, Javier; Kuppermann, Nathan

2017-08-01

Identifying international differences in the management of acute pediatric poisonings may help improve the quality of care. The objective of this study was to assess the international variation and appropriateness of gastrointestinal decontamination (GID) procedures performed in children and adolescents who present with acute poisonings to emergency departments. This was an international, multicenter, cross-sectional prospective study including children <18 years with poisoning exposures presenting to 105 emergency departments in 20 countries from 8 global regions belonging to the Pediatric Emergency Research Networks. Data collection started between January and September 2013 and continued for 1 year. The appropriateness of GID procedures performed was analyzed using the American Academy of Clinical Toxicology and the European Association of Poisons Centres and Clinical Toxicologists' recommendations. Multivariate logistic regression was performed to identify independent risk factors for performing GID procedures. We included 1688 patients, 338 of whom (20.0%, 95% confidence interval 18.1%-22.0%) underwent the following GID procedures: activated charcoal (166, 49.1%), activated charcoal and gastric lavage (122, 36.1%), gastric lavage (47, 13.9%), and ipecac (3, 0.9%). In 155 (45.8%, 40.5%-51.2%), the GID procedure was considered appropriate, with significant differences between regions. Independent risk factors for GID procedures included age, toxin category, mechanism of poisoning, absence of symptoms, and the region where the intoxication occurred ( P < .001). Globally, there are substantial differences in the use and appropriateness of GID procedures in the management of pediatric poisonings. International best practices need to be better implemented. Copyright © 2017 by the American Academy of Pediatrics.

Pediatric Tuina for promoting growth and development of preterm infants: A protocol for the systematic review of randomized controlled trail.

PubMed

Zhang, Xinghe; Guo, Taipin; Zhu, Bowen; Gao, Qing; Wang, Hourong; Tai, Xiantao; Jing, Fujie

2018-05-01

Preterm infants are babies born alive before 37 weeks. Many survived infants concomitant with defects of growth and development, a lifetime of disability usually as following when insufficient intervention. In early intervention of preterm infants, pediatric Tuina shows good effect in many Chinese and some English clinical trials. This systematic review is aimed to evaluate the efficacy and safety of pediatric Tuina for promoting growth and development of preterm infants. The electronic databases of Cochrane Library, MEDLINE, EBASE, Web of Science, Springer, World Health Organization International Clinical Trials Registry Platform, China National Knowledge Infrastructure, Chinese Biomedical Literature Database, Wan-fang database, Chinese Scientific Journal Database, and other databases will be searched from establishment to April 1, 2018. All published randomized controlled trials (RCTs) about this topic will be included. Two independent researchers will operate article retrieval, screening, quality evaluation, and data analyses by Review Manager (V.5.3.5). Meta-analyses, subgroup analysis, and/or descriptive analysis will be performed based on included data conditions. High-quality synthesis and/or descriptive analysis of current evidence will be provided from weight increase, motor development, neuropsychological development, length of stay, days of weight recovery to birthweight, days on supplemental oxygen, daily sleep duration, and side effects. This study will provide the evidence of whether pediatric Tuina is an effective early intervention for preterm infants. There is no requirement of ethical approval and informed consent, and it will be in print or published by electronic copies. This systematic review protocol has been registered in the PROSPERO network (No. CRD42018090563).

Enhancing pediatric residents’ scholar role: the development of a Scholarly Activity Guidance and Evaluation program

PubMed Central

Pound, Catherine M.; Moreau, Katherine A.; Ward, Natalie; Eady, Kaylee; Writer, Hilary

2015-01-01

Background Research training is essential to the development of well-rounded physicians. Although many pediatric residency programs require residents to complete a research project, it is often challenging to integrate research training into educational programs. Objective We aimed to develop an innovative research program for pediatric residents, called the Scholarly Activity Guidance and Evaluation (SAGE) program. Methods We developed a competency-based program which establishes benchmarks for pediatric residents, while providing ongoing academic mentorship. Results Feedback from residents and their research supervisors about the SAGE program has been positive. Preliminary evaluation data have shown that all final-year residents have met or exceeded program expectations. Conclusions By providing residents with this supportive environment, we hope to influence their academic career paths, increase their research productivity, promote evidence-based practice, and ultimately, positively impact health outcomes. PMID:26059213

[The development of a Nursing Research Agenda for Pediatrics for the years 2007 to 2017 as an integrative part of the national "Swiss Research Agenda"-project].

PubMed

Cignacco, Eva

2008-12-01

In the German-speaking part of Europe research in the pediatric field has been dominated by research with a biomedical focus. Nursing research investigating and evaluating the treatment and care process in the pediatric field has been marginal and, in the last decades, provided little evidence to enhance the development of specific criteria for nursing sensitive outcomes in this patient population. This fact is all the more problematic as the linear transfer of evidence from nursing research in the adult care setting is not feasible, i.e. the pediatric population has unique needs which are different from those of adults. Given that 22% of the Swiss population are children and adolescents up to 19 years, there is an urgent need for developing interdisciplinary nursing research projects in order to promote research which is oriented towards a bio-psychosocial model. Such research will provide the evidence needed to enhance the general well-being of children and adolescents with acute and chronic diseases as well as the well-being of their parents. To date, there has been no nursing research agenda based on the literature and on expert opinion in the pediatric field in Switzerland. This report aims to bridge this gap: it presents suggestions for a nursing research agenda in the pediatric field for the time from 2007 to 2017. Three research priorities emerged from the development process of the present agenda: 1) Evaluation of the effectiveness of nursing interventions, 2) Conceptualization and evaluation of practical impacts of family systems on the treatment process of children, 3) Research-based development of new nursing care services in a changing health care system. This report was developed in the context of the national project, "Swiss Research Agenda for Nursing". The presented agenda can be used as a basis for discussions on the strategic direction and for the development of an action plan to promote nursing research in the pediatric field in Switzerland.

Ethical issues at the interface of clinical care and research practice in pediatric oncology: a narrative review of parents' and physicians' experiences

PubMed Central

2011-01-01

Background Pediatric oncology has a strong research culture. Most pediatric oncologists are investigators, involved in clinical care as well as research. As a result, a remarkable proportion of children with cancer enrolls in a trial during treatment. This paper discusses the ethical consequences of the unprecedented integration of research and care in pediatric oncology from the perspective of parents and physicians. Methodology An empirical ethical approach, combining (1) a narrative review of (primarily) qualitative studies on parents' and physicians' experiences of the pediatric oncology research practice, and (2) comparison of these experiences with existing theoretical ethical concepts about (pediatric) research. The use of empirical evidence enriches these concepts by taking into account the peculiarities that ethical challenges pose in practice. Results Analysis of the 22 studies reviewed revealed that the integration of research and care has consequences for the informed consent process, the promotion of the child's best interests, and the role of the physician (doctor vs. scientist). True consent to research is difficult to achieve due to the complexity of research protocols, emotional stress and parents' dependency on their child's physician. Parents' role is to promote their child's best interests, also when they are asked to consider enrolling their child in a trial. Parents are almost never in equipoise on trial participation, which leaves them with the agonizing situation of wanting to do what is best for their child, while being fearful of making the wrong decision. Furthermore, a therapeutic misconception endangers correct assessment of participation, making parents inaccurately attribute therapeutic intent to research procedures. Physicians prefer the perspective of a therapist over a researcher. Consequently they may truly believe that in the research setting they promote the child's best interests, which maintains the existence of a therapeutic misconception between them and parents. Conclusion Due to the integration of research and care, their different ethical perspectives become intertwined in the daily practice of pediatric oncology. Increasing awareness of what this means for the communication between parents and physicians is essential. Future research should focus on efforts that overcome the problems that the synchronicity of research and care evokes. PMID:21943406

Complementary and alternative medicine for Duchenne and Becker muscular dystrophies: characteristics of users and caregivers.

PubMed

Zhu, Yong; Romitti, Paul A; Conway, Kristin M; Andrews, Jennifer; Liu, Ke; Meaney, F John; Street, Natalie; Puzhankara, Soman; Druschel, Charlotte M; Matthews, Dennis J

2014-07-01

Complementary and alternative medicine is frequently used in the management of chronic pediatric diseases, but little is known about its use by those with Duchenne or Becker muscular dystrophy. Complementary and alternative medicine use by male patients with Duchenne or Becker muscular dystrophy and associations with characteristics of male patients and their caregivers were examined through interviews with 362 primary caregivers identified from the Muscular Dystrophy Surveillance, Tracking, and Research Network. Overall, 272 of the 362 (75.1%) primary caregivers reported that they had used any complementary and alternative medicine for the oldest Muscular Dystrophy Surveillance, Tracking, and Research Network male in their family. The most commonly reported therapies were from the mind-body medicine domain (61.0%) followed by those from the biologically based practice (39.2%), manipulative and body-based practice (29.3%), and whole medical system (6.9%) domains. Aquatherapy, prayer and/or blessing, special diet, and massage were the most frequently used therapies. Compared with nonusers, male patients who used any therapy were more likely to have an early onset of symptoms and use a wheel chair; their caregivers were more likely to be non-Hispanic white. Among domains, associations were observed with caregiver education and family income (mind-body medicines [excluding prayer and/or blessing only] and whole medical systems) and Muscular Dystrophy Surveillance, Tracking, and Research Network site (biologically based practices and mind-body medicines [excluding prayer and/or blessing only]). Complementary and alternative medicine use was common in the management of Duchenne and Becker muscular dystrophies among Muscular Dystrophy Surveillance, Tracking, and Research Network males. This widespread use suggests further study to evaluate the efficacy of integrating complementary and alternative medicine into treatment regimens for Duchenne and Becker muscular dystrophies. Copyright © 2014 Elsevier Inc. All rights reserved.

Asleep versus awake: does it matter?: Pediatric regional block complications by patient state: a report from the Pediatric Regional Anesthesia Network.

PubMed

Taenzer, Andreas H; Walker, Benjamin J; Bosenberg, Adrian T; Martin, Lynn; Suresh, Santhanam; Polaner, David M; Wolf, Christie; Krane, Elliot J

2014-01-01

The impact of the patient state at time of placement of regional blocks on the risk of complications is unknown. Current opinion is based almost entirely on case reports, despite considerable interest in the question. Analyzing more than 50,000 pediatric regional anesthesia blocks from an observational prospective database, we determined the rate of adverse events in relation to the patient's state at the time of block placement. Primary outcomes considered were postoperative neurologic symptoms (PONSs) and local anesthetic systemic toxicity (LAST). Secondary outcome was extended hospital stay due to a block complication. The Pediatric Regional Anesthesia Network is a multi-institutional research consortium that was created with an emphasis on rigorous, prospective, and complete data collection including a data validation and audit process. For the purpose of the analysis, blocks were divided in major groups by single injection versus continuous and by block location. Rates were determined in aggregate for these groups and classified further based on the patient's state (general anesthesia [GA] without neuromuscular blockade [NMB], GA with NMB, sedated, and awake) at the time of block placement. Postoperative neurological symptoms occurred at a rate of 0.93/1000 (confidence interval [CI], 0.7-1.2) under GA and 6.82/1000 (CI, 4.2-10.5) in sedated and awake patients. The only occurrence of PONSs lasting longer than 6 months (PONSs-L) was a small sensory deficit in a sedated patient (0.019/1000 [CI, 0-0.1] for all, 0.48/1000 [CI, 0.1-2.7] for sedated patients). There were no cases of paralysis. There were 5 cases of LAST or 0.09/1000 (CI, 0.03-0.21). The incidence of LAST in patients under GA (both with and without NMB) was 0.08/1000 (CI, 0.02-0.2) and 0.34/1000 (CI, 0-1.9) in awake/sedated patients. Extended hospital stays were described 18 times (0.33/1000 [CI, 0.2-0.53]). The rate for patients under GA without NMB was 0.29/1000 (CI, 0.13-0.48); GA with NMB, 0.29/1000 (CI, 0.06-0.84); sedated, 1.47/1000 (CI, 0.3-4.3); and awake, 1.15/1000 (CI, 0.02-6.4). The placement of regional anesthetic blocks in pediatric patients under GA is as safe as placement in sedated and awake children. Our results provide the first prospective evidence for the pediatric anesthesia community that the practice of placing blocks in anesthetized patients should be considered safe and should remain the prevailing standard of care. Prohibitive recommendations based on anecdote and case reports cannot be supported.

The Vulnerabilities of Orphaned Children Participating in Research: A Critical Review and Factors for Consideration for Participation in Biomedical and Behavioral Research

PubMed Central

Thompson, Rachel T.; Meslin, Eric M.; Braitstein, Paula K. A.; Nyandiko, Winstone M.; Ayaya, Samuel O.; Vreeman, Rachel C.

2013-01-01

Orphans are a subpopulation with a unique set of additional vulnerabilities. Increasing focus on children’s rights, pediatric global health, and pediatric research makes it imperative to recognize and address unique vulnerabilities of orphaned children. This paper describes the unique vulnerabilities of the orphaned pediatric population and offers a structured set of factors that require consideration when including orphans in biomedical research. Pediatric orphans are particularly vulnerable due to decreased economic resources, psychosocial instability, increased risk of abuse, and delayed/decreased access to healthcare. These vulnerabilities are significant. By carefully considering each issue in a population in a culturally specific and study-specific manner, researchers can make valuable contributions to the overall health and well-being of this uniquely vulnerable population. PMID:23086048

The use of telemedicine in pediatric psychology: research review and current applications.

PubMed

Van Allen, Jason; Davis, Ann McGrath; Lassen, Stephen

2011-01-01

Several novel technologies have long been used in pediatric psychology. From using electronic pill-count bottles to track child adherence to pill-taking regimens to using bed alarms for night time enuresis, psychologists have relied on technology in their work with children who are ill. Much of the recent technology literature in pediatric psychology has focused on the use of the Internet and other Web-based technologies. This article thoroughly reviews the literature regarding telehealth in the field of pediatric psychology, more specifically the application of televideo or teleconferencing in various populations of children and adolescents with chronic illnesses, followed by the authors' clinical and research applications of telehealth in pediatric psychology. The review concludes with a summary of study findings and future directions in the field for clinicians and researchers alike. Published by Elsevier Inc.

77 FR 69627 - Findings of Research Misconduct

Federal Register 2010, 2011, 2012, 2013, 2014

2012-11-20

... DEPARTMENT OF HEALTH AND HUMAN SERVICES Office of the Secretary Findings of Research Misconduct... Research Integrity (ORI) has taken final action in the following case: Eric J. Smart, Ph.D., University of... Professor of Pediatrics and Physiology, Department of Pediatrics and Physiology, UK, engaged in research...

Collaborative Chronic Care Networks (C3Ns) to transform chronic illness care.

PubMed

Margolis, Peter A; Peterson, Laura E; Seid, Michael

2013-06-01

Despite significant gains by pediatric collaborative improvement networks, the overall US system of chronic illness care does not work well. A new paradigm is needed: a Collaborative Chronic Care Network (C3N). A C3N is a network-based production system that harnesses the collective intelligence of patients, clinicians, and researchers and distributes the production of knowledge, information, and know-how over large groups of people, dramatically accelerating the discovery process. A C3N is a platform of "operating systems" on which interconnected processes and interventions are designed, tested, and implemented. The social operating system is facilitated by community building, engaging all stakeholders and their expertise, and providing multiple ways to participate. Standard progress measures and a robust information technology infrastructure enable the technical operating system to reduce unwanted variation and adopt advances more rapidly. A structured approach to innovation design provides a scientific operating system or "laboratory" for what works and how to make it work. Data support testing and research on multiple levels: comparative effectiveness research for populations, evaluating care delivery processes at the care center level, and N-of-1 trials and other methods to select the best treatment of individual patient circumstances. Methods to reduce transactional costs to participate include a Federated IRB Model in which centers rely on a protocol approved at 1 central institutional review board and a "commons framework" for organizational copyright and intellectual property concerns. A fully realized C3N represents a discontinuous leap to a self-developing learning health system capable of producing a qualitatively different approach to improving health.

[Network for Oncological Advisory Service (NOF) - a Pilot Project for (Long-Term) Follow-Up Care of Pediatric Cancer Patients].

PubMed

Kremeike, K; Mohr, A; Kampschulte, R; Bergmann, J; Beil, S; Neuhaus, U; Dierks, M-L; Driftmann, C; Duhr, A; Groeneveld, S; Kaspar, M; Kowollik, G; Miest, H-H; Schene, I; Reinhardt, D

2016-11-01

Background: In Germany some 2 000 children and adolescent are diagnosed with cancer every year. Curing rates are increasing and therewith also the number of survivors is growing. Survivors frequently suffer from long-term effects of the disease and its treatment, but long-term follow-up care shows deficits. Method: The Network for oncological advisory service (NOF) started in 11/2013, researching and building up a network of available support in Lower Saxony. A telephone hotline was installed in 01/2014 in order to advice survivors on their problems. At the same time, an interview study on survivors needs was conducted throughout Germany. Results: In the first 2 years, the NOF gave advice to 79 patients. Whilst enquiries of medical or psychological nature were transferred to the cooperation partner, requests on psychosocial and social legal issues are being deled by the NOF due to lack of appropriate partners. The evaluation of 25 interviews shows key issues in long-term after-care: (1) transition from acute therapy to everyday life, (2) problems due to pediatric cancer and therapy, (3) patients perception of own disposition, (4) social reactions towards survivors, (5) structure of long-term follow-up care, (6) information flow. Conclusion: Many survivors suffer from long-term effects of cancer and treatment. The lack of available contact person and being in limbo between cured and simultaneously affected by the cancer treatment and chronic diseases is perceived as being problematic. This translates to various requirements on a patient-oriented long-term care, mainly in the psychosocial field. © Georg Thieme Verlag KG Stuttgart · New York.

NCI Pediatric Preclinical Testing Consortium

Cancer.gov

NCI has awarded grants to five research teams to participate in its Pediatric Preclinical Testing Consortium, which is intended to help to prioritize which agents to pursue in pediatric clinical trials.

Designing pediatric vaccine formularies and pricing pediatric combination vaccines using operations research models and algorithms.

PubMed

Jacobson, Sheldon H; Sewell, Edward C; Allwine, Daniel A; Medina, Enrique A; Weniger, Bruce G

2003-02-01

The National Immunization Program, housed within the Centers for Disease Control and Prevention in the USA, has identified several challenges that must be faced in childhood immunization programs to deliver and procure vaccines that immunize children from the plethora of childhood diseases. The biomedical issues cited include how drug manufacturers can combine and formulate vaccines, how such vaccines are scheduled and administered and how economically sound vaccine procurement can be achieved. This review discusses how operations research models can be used to address the economics of pediatric vaccine formulary design and pricing, as well as how such models can be used to address a new set of pediatric formulary problems that will surface with the introduction of pediatric combination vaccines into the US pediatric immunization market.

National Institutes of Health Update: Translating Basic Behavioral Science into New Pediatric Obesity Interventions.

PubMed

Czajkowski, Susan M

2016-06-01

Pediatric obesity increases the risk of later-life obesity and chronic diseases. Basic research to better understand factors associated with excessive weight gain in early life and studies translating research findings into preventive and therapeutic strategies are essential to our ability to better prevent and treat childhood obesity. This overview describes several National Institutes of Health efforts designed to stimulate basic and translational research in childhood obesity prevention and treatment. These examples demonstrate the value of research in early phase translational pediatric obesity research and highlight some promising directions for this important area of research. Published by Elsevier Inc.

78 FR 57639 - Request for Comments on Pediatric Planned Procedure Algorithm

Federal Register 2010, 2011, 2012, 2013, 2014

2013-09-19

... Comments on Pediatric Planned Procedure Algorithm AGENCY: Agency for Healthcare Research and Quality (AHRQ), HHS. ACTION: Notice of request for comments on pediatric planned procedure algorithm from the members... Quality (AHRQ) is requesting comments from the public on an algorithm for identifying pediatric planned...

A review of the Journal of Pediatrics: the first 75 years.

PubMed

Hellems, Martha A; Gurka, Kelly K; Hayden, Gregory F

2009-07-01

To assess changes in the format and content of articles published in The Journal of Pediatrics to aid in understanding the current state of pediatric research and to anticipate what to expect in the coming years. We conducted a retrospective review of case reports, research articles, and review articles published in volume 150 of The Journal. We noted components of study authorship, content, and design and compared these data with those in earlier volumes. The numbers of authors and grants per article and the proportion of studies with international authorship have all increased. Print circulation has dropped, but The Journal is now available in electronic format. Research topics shifted, with fewer articles devoted to infectious disease and general pediatrics. An increase in articles about endocrinology reflects a surge of interest in pediatric obesity. Most articles contain original research, reporting analyses from observational studies with few clinical trials. Recent trends suggest that readers of The Journal should expect more research articles with observational designs and increasing international authorship. The Journal's electronic presence will likely increase and provide greater readership globally.

Stories and Music for Adolescent/Young Adult Resilience During Transplant Partnerships: Strategies to Support Academic-Clinical Nurse Collaborations in Behavioral Intervention Studies.

PubMed

Hendricks-Ferguson, Verna L; Barnes, Yvonne J; Cherven, Brooke; Stegenga, Kristin; Roll, Lona; Docherty, Sharon L; Haase, Joan E

Evidence-based nursing is in the forefront of healthcare delivery systems. Federal and state agencies, academic institutions, and healthcare delivery systems recognize the importance of nursing research. This article describes the mechanisms that facilitate nursing partnerships yielding high-level research outcomes in a clinical setting. A phase-II multicenter behavioral intervention study with pediatric stem cell transplant patients was the context of this academic/clinical research partnership. Strategies to develop and maintain this partnership involved a thorough understanding of each nurse's focus and barriers. A variety of communication plans and training events maximized preexisting professional networks. Academic/clinical nurses' discussions identified barriers to the research process, the most significant being role conflict. Communication and validation of benefits to each individual and institution facilitated the research process during challenging times. Establishing strong academic/clinical partnerships should lead to evidence-based research outcomes for the nursing profession, healthcare delivery systems, and patients and families.

Injury prevention and future research.

PubMed

Emery, Carolyn A

2005-01-01

To critically examine and summarize the literature identifying risk factors and prevention strategies for injury in child and adolescent sport. Seven electronic databases were searched including: Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Psychinfo, Cochrane Database for Systematic and Complete Reviews, Cochrane Controlled Trials Registry, HealthSTAR and SPORTDiscus. Medical subject headings and text words included: athletic injury, sport injury, risk factors, adolescent and child. Additional articles were reviewed based on sport-specific contributions in the previous chapters of this book. Despite the diversity of injuries occurring in various pediatric sporting populations, the uniformity with respect to many of the risk factors identified in the literature is noteworthy (i.e. previous injury, age, sport specificity, psychosocial factors, decreased strength and endurance). The literature is significantly limited with respect to the prospective evaluation of risk factors and prevention strategies for injury in pediatric sport. The consistencies, however, between the adult and pediatric literature are encouraging with respect to prevention strategies involving neuromuscular training programs (i.e. balance training programs) to reduce lower extremity injuries in some sports and the use of sport-specific protective equipment (i.e. helmets). Notwithstanding the limitations in the literature, the successful evaluation of some sport-specific prevention strategies to reduce injury in pediatric sport is encouraging. There is significant opportunity to methodologically improve upon the current pediatric sport injury literature in descriptive surveillance research, risk factor evaluation research, and prevention research. There is a need for prospective studies, ideally randomized controlled trials, in the evaluation of prevention strategies in pediatric sport. The integration of basic science, laboratory and epidemiological research is critical in evaluating the mechanisms associated with injury and injury prevention in pediatric sport. Finally, long-term studies are needed to identify the public health impact of pediatric sport injury.

Pediatric Oncology Branch - training- medical student rotations | Center for Cancer Research

Cancer.gov

Medical Student Rotations Select 4th-year medical students may be approved for a 4-week elective rotation at the Pediatric Oncology Branch. This rotation emphasizes the important connection between research and patient care in pediatric oncology. The student is supervised directly by the Branch’s attending physician and clinical fellows. Students attend daily in-patient and

Advanced Pediatric Brain Imaging Research and Training Program

DTIC Science & Technology

2013-10-01

diffusion tensor imaging and perfusion ( arterial spin labeling) MRI data and to relate measures of global and regional brain microstructural organization...AD_________________ Award Number: W81XWH-11-2-0198 TITLE: Advanced Pediatric Brain Imaging...September 2013 4. TITLE AND SUBTITLE 5a. CONTRACT NUMBER Advanced Pediatric Brain Imaging Research and Training Program 5b. GRANT NUMBER W81XWH

Privacy and Ethics in Pediatric Environmental Health Research—Part II: Protecting Families and Communities

PubMed Central

Fisher, Celia B.

2006-01-01

Background In pediatric environmental health research, information about family members is often directly sought or indirectly obtained in the process of identifying child risk factors and helping to tease apart and identify interactions between genetic and environmental factors. However, federal regulations governing human subjects research do not directly address ethical issues associated with protections for family members who are not identified as the primary “research participant.” Ethical concerns related to family consent and privacy become paramount as pediatric environmental health research increasingly turns to questions of gene–environment interactions. Objectives In this article I identify issues arising from and potential solutions for the privacy and informed consent challenges of pediatric environmental health research intended to adequately protect the rights and welfare of children, family members, and communities. Discussion I first discuss family members as secondary research participants and then the specific ethical challenges of longitudinal research on late-onset environmental effects and gene–environment interactions. I conclude with a discussion of the confidentiality and social risks of recruitment and data collection of research conducted within small or unique communities, ethnic minority populations, and low-income families. Conclusions The responsible conduct of pediatric environmental health research must be conceptualized as a goodness of fit between the specific research context and the unique characteristics of subjects and other family stakeholders. PMID:17035154

Guidelines for innovation in pediatric surgery.

PubMed

Kastenberg, Zachary; Dutta, Sanjeev

2011-05-01

Surgical innovation involves the conceptualization, research, and translation of a novel idea into a viable procedure or device. The technological advancements made within the field of pediatric surgery over the last century have led to major improvements in patient care and outcomes. There has, however, been a parallel increase in the complexity of the regulatory bodies governing research and device implementation. This article briefly outlines the history of innovation in pediatric surgery, describes the existing regulatory bodies governing surgical research and device development (i.e., Department of Health and Human Services, Food and Drug Administration), and offers a set of guidelines for the pediatric surgeon planning to incorporate a new procedure or device into clinical practice.

Topical review: sluggish cognitive tempo: research findings and relevance for pediatric psychology.

PubMed

Becker, Stephen P

2013-11-01

To summarize recent research on sluggish cognitive tempo (SCT) and consider the potential relevance of SCT for the field of pediatric psychology. Literature review. Recent empirical evidence shows SCT symptoms consisting of sluggish/sleepy and daydreamy behaviors to be distinct from Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) Attention-Deficit/Hyperactivity Disorder (ADHD) symptoms. SCT is associated with psychosocial functioning in children and adolescents, including internalizing symptoms, social withdrawal, and, possibly, academic impairment. The recent findings reviewed suggest that SCT is an important construct for pediatric psychologists to be aware of and may also be directly useful for the research and practice of pediatric psychology.

Surgical Outreach for Children by International Humanitarian Organizations: A Review.

PubMed

Kynes, J Matthew; Zeigler, Laura; McQueen, Kelly

2017-06-28

Low- and middle-income countries carry a disproportionate share of the global burden of pediatric surgical disease and have limited local healthcare infrastructure and human resources to address this burden. Humanitarian efforts that have improved or provided access to necessary basic or emergency surgery for children in these settings have included humanitarian assistance and disaster relief, short-term surgical missions, and long-term projects such as building pediatric specialty hospitals and provider networks. Each of these efforts may also include educational initiatives designed to increase local capacity. This article will provide an overview of pediatric humanitarian surgical outreach including reference to available evidence-based analyses of these platforms and make recommendations for surgical outreach initiatives for children.

Factors affecting consent in pediatric critical care research.

PubMed

Menon, Kusum; Ward, Roxanne E; Gaboury, Isabelle; Thomas, Margot; Joffe, Ari; Burns, Karen; Cook, Deborah

2012-01-01

Consent for research is a difficult and unpredictable process in pediatric critical care populations. The objectives of this study were to describe consent rates in pediatric critical care research and their association with patient, legal guardian, consent process, and study design-related factors. A prospective, cohort study was conducted from 2009 to 2010 in six tertiary care pediatric intensive care units (PICU) in Canada with legal guardians of patients who were approached for consent for any ongoing PICU research study. Data were recorded on details of the consent process for all consent encounters. We recorded 271 consent encounters. The overall consent rate was 80.1% (217/271). We observed higher consent rates when the research assistant was introduced by a member of the clinical team prior to approaching the family (89.7 vs. 77.7%; P = 0.04). Legal guardians of cardiac surgery patients were less likely to provide consent than those of all other patients (75.3 vs. 86.0%; P = 0.03). There was no difference in consent rates between therapeutic (117/145, 80.7%) versus non-therapeutic studies (100/126, 79.4%; P = 0.88). This study provides future researchers with consent data for determination of recruitment rates, sample sizes, budget estimations, and study timelines. Future pediatric critical care studies should consider incorporating the lower consent rates in cardiac surgery patients and routine introduction of the research assistant to the family by a member of the patient's care team into their study designs. The potential influence of parental factors on consent rates in pediatric critical care studies requires further research.

Better drug therapy for the children of Africa: current impediments to success and potential strategies for improvement.

PubMed

Macleod, Stuart M; Finch, Janet K; Macharia, William M; Anabwani, Gabriel M

2013-08-01

A commentary is presented on the urgent need for a comprehensive effort to improve the practice of pediatric therapeutics in Africa. A call for action is addressed to a variety of practitioners internationally, many of whom possess skills that could be fruitfully applied to the improvement of health outcomes for African children. Successful engagement with the many challenges requires the complementary effort of researchers in basic and clinical pharmacology and toxicology, nurses, pharmacists, physicians, clinical pharmacologists, clinical pharmacists, and political leaders and civil servants. While a comprehensive or systematic review of the relevant literature has not been attempted, the authors have highlighted promising initiatives driven by international agencies and academic networks. Two African perspectives are presented to reinforce the prospect of child health gains that can be achieved through consistent pursuit of optimal therapy for conditions such as respiratory infection, diarrhea, malaria, and HIV/AIDS. There is an imperative for development of north-south and south-south partnerships that will amplify current research efforts and mobilize existing knowledge concerning pediatric drugs. The overall goal is a multidisciplinary commitment to making essential medicines available at the right time, the right place, and in the right formulation for African children from infancy to adolescence.

Pediatric Oncology Branch - training- medical student rotations | Center for Cancer Research

Cancer.gov

Medical Student Rotations Select 4th-year medical students may be approved for a 4-week elective rotation at the Pediatric Oncology Branch. This rotation emphasizes the important connection between research and patient care in pediatric oncology. The student is supervised directly by the Branch’s attending physician and clinical fellows. Students attend daily in-patient and out-patient rounds and multiple weekly Branch conferences, and are expected to research relevant topics and present a 30-minute talk near the end of their rotation.

Policy entrepreneurship and policy networks in healthcare systems - the case of Israel's pediatric dentistry reform.

PubMed

Cohen, Nissim; Horev, Tuvia

2017-01-01

Can the entry of a policy entrepreneur challenge the equilibrium of a policy network and promote changes that might clash with the goals of powerful civil-servants and/or interest groups and, if so, why and how? Our goal is to examine two sides of the same coin: how does an in-depth analysis of Israel's dental care reform enrich our understanding of policy networks and policy entrepreneurship? Second, how does the literature on policy networks and policy entrepreneurship help us understand this reform? Based on a theoretical framework that appears in the literature of policy entrepreneurship and policy networks, we analyze the motivations, goals and strategies of the main actors involved in the process of reforming pediatric dental care in Israel. We demonstrate how a policy entrepreneur navigated within a policy network and managed to promote a reform that, until his appearance, no one else in that network had succeeded in enacting. Our goals are advanced through a case study of a reform in pediatric dentistry implemented in Israel in 2010. It rests on textual analyses of the literature, reports, committee minutes, parliamentary proceedings, print and online media, and updates in relevant legislation and case law between 2009 and 2015. In addition, the case study draws on the insights of one of the authors (TH), who played a role in the reform process. Historical circumstances and the Israeli public's longstanding lack of interest in changing the existing model as well as interest groups that preferred the dominance of the private sector in the dental healthcare system kept that area out of the services supplied, universally, under the National Health Insurance Law. This situation changed significantly following the publication in 2007 of a policy analysis that contributed to shifts in the motivations and balance of power within the policy network, which in turn prepared the ground for a policy change. In this environment a determined policy entrepreneur, who identified a window of opportunity, took the lead and instituted an innovative and far-reaching reform. A policy entrepreneur can leverage external factors as well as the previous activities of a policy network that has already matured to create a policy change. Such entrepreneurial activity includes maneuvering around opponents and overcoming resistance from various stakeholders.

Structural equation modeling in pediatric psychology: overview and review of applications.

PubMed

Nelson, Timothy D; Aylward, Brandon S; Steele, Ric G

2008-08-01

To describe the use of structural equation modeling (SEM) in the Journal of Pediatric Psychology (JPP) and to discuss the usefulness of SEM applications in pediatric psychology research. The use of SEM in JPP between 1997 and 2006 was examined and compared to leading journals in clinical psychology, clinical child psychology, and child development. SEM techniques were used in <4% of the empirical articles appearing in JPP between 1997 and 2006. SEM was used less frequently in JPP than in other clinically relevant journals over the past 10 years. However, results indicated a recent increase in JPP studies employing SEM techniques. SEM is an under-utilized class of techniques within pediatric psychology research, although investigations employing these methods are becoming more prevalent. Despite its infrequent use to date, SEM is a potentially useful tool for advancing pediatric psychology research with a number of advantages over traditional statistical methods.

Infant Transport Monitoring

NASA Technical Reports Server (NTRS)

1978-01-01

The photo sequence illustrates the movement of an ill infant to a special care hospital by means of a new Pediatric Monitoring and Transport System, in which NASA technology and technical assistance are being applied to an urgent medical problem. Development of the system is a collaborative effort involving several organizations, principally, NASA Ames Research Center and Children's Hospital Medical Center, Oakland, California. Key to the system's efficacy is a custom-designed ambulance-to-hospital and hospital-to-hospital communications network, including two-way voice capability and space-derived biotelemetry; it allows a specialist at the destination hospital to monitor continuously the vital signs of the patient during transit.

An i2b2-based, generalizable, open source, self-scaling chronic disease registry

PubMed Central

Quan, Justin; Ortiz, David M; Bousvaros, Athos; Ilowite, Norman T; Inman, Christi J; Marsolo, Keith; McMurry, Andrew J; Sandborg, Christy I; Schanberg, Laura E; Wallace, Carol A; Warren, Robert W; Weber, Griffin M; Mandl, Kenneth D

2013-01-01

Objective Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software. Materials and methods Focusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions. Results The 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA. Discussion We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. Conclusions The implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases. PMID:22733975

An i2b2-based, generalizable, open source, self-scaling chronic disease registry.

PubMed

Natter, Marc D; Quan, Justin; Ortiz, David M; Bousvaros, Athos; Ilowite, Norman T; Inman, Christi J; Marsolo, Keith; McMurry, Andrew J; Sandborg, Christy I; Schanberg, Laura E; Wallace, Carol A; Warren, Robert W; Weber, Griffin M; Mandl, Kenneth D

2013-01-01

Registries are a well-established mechanism for obtaining high quality, disease-specific data, but are often highly project-specific in their design, implementation, and policies for data use. In contrast to the conventional model of centralized data contribution, warehousing, and control, we design a self-scaling registry technology for collaborative data sharing, based upon the widely adopted Integrating Biology & the Bedside (i2b2) data warehousing framework and the Shared Health Research Information Network (SHRINE) peer-to-peer networking software. Focusing our design around creation of a scalable solution for collaboration within multi-site disease registries, we leverage the i2b2 and SHRINE open source software to create a modular, ontology-based, federated infrastructure that provides research investigators full ownership and access to their contributed data while supporting permissioned yet robust data sharing. We accomplish these objectives via web services supporting peer-group overlays, group-aware data aggregation, and administrative functions. The 56-site Childhood Arthritis & Rheumatology Research Alliance (CARRA) Registry and 3-site Harvard Inflammatory Bowel Diseases Longitudinal Data Repository now utilize i2b2 self-scaling registry technology (i2b2-SSR). This platform, extensible to federation of multiple projects within and between research networks, encompasses >6000 subjects at sites throughout the USA. We utilize the i2b2-SSR platform to minimize technical barriers to collaboration while enabling fine-grained control over data sharing. The implementation of i2b2-SSR for the multi-site, multi-stakeholder CARRA Registry has established a digital infrastructure for community-driven research data sharing in pediatric rheumatology in the USA. We envision i2b2-SSR as a scalable, reusable solution facilitating interdisciplinary research across diseases.

Juvenile Idiopathic Arthritis in the Era of International Cooperation.

PubMed

Uziel, Yosef

2017-01-30

Juvenile idiopathic arthritis (JIA) is the most common chronic disease of childhood. Improved understanding of its pathogenesis has led to international cooperation in clinical studies. Multicenter, international collaborations and research facilitate rapid enrollment of enough patients to enable a variety of studies, including those of epidemiology, diagnostic and classification criteria, genetic disease predisposition, pathogenesis, outcomes, and treatment protocols. In the last 20 years, the vision of the Pediatric Rheumatology International Trial Organization (PRINTO) has become a reality of worldwide collaboration in pediatric rheumatology research, including North American and European research groups. Major advances have been made in treating systemic JIA and its main complication, macrophage-activating syndrome (MAS). Single Hub and Access Point to Pediatric Rheumatology in Europe (SHARE) is a project of the European Society of Pediatric Rheumatology with the goal of improving clinical care. Based on evidence in the scientific literature, position papers regarding optimal clinical approaches and care have been published. Formal, validated assessment tools to evaluate response to treatment have been developed. Recommendations have been established to encourage international research collaborations, especially in light of major advances achieved in the genetics of pediatric rheumatologic diseases and the need to share biological samples among different countries and continents. Every participating country has disease information available for patients and families. Additionally, educational programs and updated syllabi for pediatric rheumatology have been written to promote similar, high-level academic training in different countries. These efforts have resulted in significant improvements in treatment and in patient prognosis. However, improved cooperation is needed to enhance research with biological and genetic samples. The Israeli Research Group for Pediatric Rheumatology is very active and has made significant contributions to the field.

Application of convolutional artificial neural networks to echocardiograms for differentiating congenital heart diseases in a pediatric population

NASA Astrophysics Data System (ADS)

Perrin, Douglas P.; Bueno, Alejandra; Rodriguez, Andrea; Marx, Gerald R.; del Nido, Pedro J.

2017-03-01

In this paper we describe a pilot study, where machine learning methods are used to differentiate between congenital heart diseases. Our approach was to apply convolutional neural networks (CNNs) to echocardiographic images from five different pediatric populations: normal, coarctation of the aorta (CoA), hypoplastic left heart syndrome (HLHS), transposition of the great arteries (TGA), and single ventricle (SV). We used a single network topology that was trained in a pairwise fashion in order to evaluate the potential to differentiate between patient populations. In total we used 59,151 echo frames drawn from 1,666 clinical sequences. Approximately 80% of the data was used for training, and the remainder for validation. Data was split at sequence boundaries to avoid having related images in the training and validation sets. While training was done with echo images/frames, evaluation was performed for both single frame discrimination as well as sequence discrimination (by majority voting). In total 10 networks were generated and evaluated. Unlike other domains where this network topology has been used, in ultrasound there is low visual variation between classes. This work shows the potential for CNNs to be applied to this low-variation domain of medical imaging for disease discrimination.

Application of probabilistic fiber-tracking method of MR imaging to measure impact of cranial irradiation on structural brain connectivity in children treated for medulloblastoma

NASA Astrophysics Data System (ADS)

Duncan, Elizabeth C.; Reddick, Wilburn E.; Glass, John O.; Hyun, Jung Won; Ji, Qing; Li, Yimei; Gajjar, Amar

2016-03-01

We applied a modified probabilistic fiber-tracking method for the extraction of fiber pathways to quantify decreased white matter integrity as a surrogate of structural loss in connectivity due to cranial radiation therapy (CRT) as treatment for pediatric medulloblastoma. Thirty subjects were examined (n=8 average-risk, n=22 high-risk) and the groups did not differ significantly in age at examination. The pathway analysis created a structural connectome focused on sub-networks within the central executive network (CEN) for comparison between baseline and post-CRT scans and for comparison between standard and high dose CRT. A paired-wise comparison of the connectivity between baseline and post-CRT scans showed the irradiation did have a significant detrimental impact on white matter integrity (decreased fractional anisotropy (FA) and decreased axial diffusivity (AX)) in most of the CEN sub-networks. Group comparisons of the change in the connectivity revealed that patients receiving high dose CRT experienced significant AX decreases in all sub-networks while the patients receiving standard dose CRT had relatively stable AX measures across time. This study on pediatric patients with medulloblastoma demonstrated the utility of this method to identify specific sub-networks within the developing brain affected by CRT.

The Globalization of Pediatric Research: An Analysis of Clinical Trials Completed for Pediatric Exclusivity

PubMed Central

Pasquali, Sara K.; Burstein, Danielle S.; Benjamin, Daniel K.; Smith, P. Brian; Li, Jennifer S.

2010-01-01

Background Recent studies have examined the globalization of clinical research. These studies focused on adult trials, and the globalization of pediatric research has not been examined to date. We evaluated the setting of published studies conducted under the US Pediatric Exclusivity Program, which provides economic incentives to pharmaceutical companies to conduct drug studies in children. Methods Published studies containing the main results of trials conducted from 1998–2007 under the Pediatric Exclusivity Provision were included. Data were extracted from each study and described, including the therapeutic area of drug studied, number of patients enrolled, number of sites, and location where the study was conducted, if reported. Results Overall, 174 trials were included (sample size 8–27,065 patients); 9% did not report any information regarding the location or number of sites where the study was conducted. Of those that did report this information, 65% were conducted in at least one country outside the US, and 11% did not have any sites in the US. Fifty-four different countries were represented and 38% of trials enrolled patients in at least one site located in a developing/transition country, including more than one third of infectious disease, cardiovascular, and allergy/immunology trials. Conclusions The majority of published pediatric trials conducted under the Pediatric Exclusivity Provision included sites outside of the US, and over a third of trials enrolled patients in developing/transition countries. While there are many potential benefits to the globalization of pediatric research, this trend also raises certain scientific and ethical concerns which require further evaluation. PMID:20732941

Introduction to special issue: moving forward in pediatric neuropsychology.

PubMed

Daly, Brian P; Giovannetti, Tania; Zabel, T Andrew; Chute, Douglas L

2011-08-01

This special issue of The Clinical Neuropsychologist focuses on advances in the emerging subspecialty of pediatric neuropsychology. The national and international contributions in this issue cover a range of key clinical, research, training, and professional issues specific to pediatric neuropsychology. The genesis for this project developed out of a series of talks at the Philadelphia Pediatric Neuropsychology Symposium in 2010, hosted by the Stein Family Fellow, the Department of Psychology of the College of Arts and Sciences at Drexel University, and the Philadelphia Neuropsychology Society. Articles that explore clinical practice issue focus on the assessment of special medical populations with congenital and/or acquired central nervous system insults. Research articles investigate the core features of developmental conditions, the use of technology in neuropsychological research studies, and large sample size genomic, neuropsychological, and imaging studies of under-represented populations. The final series of articles examine new considerations in training, advocacy, and subspecialty board certification that have emerged in pediatric neuropsychology. This introductory article provides an overview of the articles in this special issue and concluding thoughts about the future of pediatric neuropsychology.

Social Media Use in Pediatric Dermatology.

PubMed

Fogel, Alexander L; Teng, Joyce M C

2016-01-01

Social media is predicted to become increasingly important in dermatology because of its potential to serve as a platform for public health campaigns, aid in participant recruitment for clinical trials, increase public engagement in health care, and facilitate scientific discourse. No study of social media use in pediatric dermatology has been performed, so we analyzed the use of the seven leading social media platforms in pediatric dermatology, with a focus on patient advocacy groups, professional societies, research journals, and research institutions. We observed that 89% of patient advocacy groups, 100% of professional societies, 62.5% of research journals, and 0% of academic pediatric dermatology departments maintained one or more social media accounts. Our observations suggest that all stakeholder groups, and in particular members of the research community, have the potential to further their engagement, connections, and communications through social media. © 2016 Wiley Periodicals, Inc.

Characterizing the adequacy, effectiveness, and barriers related to research mentorship among junior pediatric hospitalists and general pediatricians at a large academic institution.

PubMed

Ragsdale, Judith R; Vaughn, Lisa M; Klein, Melissa

2014-03-01

The purpose of this qualitative study was to characterize the adequacy, effectiveness, and barriers related to research mentorship among junior pediatric hospitalists and general pediatricians at a large academic institution. Junior faculty and staff physicians in hospital medicine and general pediatrics at a large academic institution were invited to participate in this qualitative study. In-depth interviews were conducted. Experienced mentors were invited to be interviewed for theoretical sampling. Interviews were conducted and analyzed by using grounded theory methodology. Twenty-six (75%) of the eligible physicians, pediatric hospitalists representing 65% of this sample, agreed to be interviewed about their mentoring experiences. Satisfied and dissatisfied participants expressed similar mentoring themes: acquisition of research skills, academic productivity, and career development. Four experienced mentors were interviewed and provided rationale for mentoring clinicians in research. Both groups of participants agreed that institutional support is vital for promoting mentorship. Junior pediatric hospitalists and general pediatricians indicated considerable interest in being mentored to learn to do clinical research. Developing faculty and staff physicians to their utmost potential is critical for advancement in academic medicine. Mentoring clinical physicians seeking to add research skills and academic productivity to their practice merits study as an innovative path to develop clinical investigators. Hospital medicine, as a rapidly developing pediatric specialty, is well-positioned to implement the necessary infrastructure to mentor junior faculty in their academic pursuits, thereby optimizing the potential impact for individuals, families, learners, and institutions.

Children's Interstitial and Diffuse Lung Disease. Progress and Future Horizons.

PubMed

Deterding, Robin R

2015-10-01

Children's interstitial and diffuse lung disease (chILD) is a term that encompasses a large and diverse group of rare pediatric diseases and disorders. Significant progress has been made over the last 2 decades in classification, clinical care, research, and organizational structure to enhance the care of children with these high-morbidity and -mortality diseases. New diseases have been defined clinically and genetically, classification systems developed and applied, organizations formed such as the chILD Research Network (chILDRN) and chILD Foundation, and basic and translational science expanded to focus on chILD diseases. Multidisciplinary collaborations and efforts to advance understanding and treatment of chILD have been extended worldwide. The future horizon holds great promise to expand scientific discoveries, collaborate more broadly, and bring new treatment to these children. An overview of key historical past developments, major clinical and research updates, and opportunities for the future in chILD is reviewed in this Perspective.

President Signs STAR Act for Kids' Cancers.

PubMed

2018-06-07

On June 5, President Donald Trump signed the Childhood Cancer Survivorship, Treatment, Access and Research Act, which aims to support pediatric cancer research by expanding the collection of patient biospecimens and records, improving surveillance, and investigating pediatric survivorship. ©2018 American Association for Cancer Research.

Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit.

PubMed

Meert, Kathleen L; Eggly, Susan; Pollack, Murray; Anand, K J S; Zimmerman, Jerry; Carcillo, Joseph; Newth, Christopher J L; Dean, J Michael; Willson, Douglas F; Nicholson, Carol

2008-01-01

Communicating bad news about a child's illness is a difficult task commonly faced by intensive care physicians. Greater understanding of parents' scope of experiences with bad news during their child's hospitalization will help physicians communicate more effectively. Our objective is to describe parents' perceptions of their conversations with physicians regarding their child's terminal illness and death in the pediatric intensive care unit (PICU). A secondary analysis of a qualitative interview study. Six children's hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Fifty-six parents of 48 children who died in the PICU 3-12 months before the study. Parents participated in audio recorded semistructured telephone interviews. Interviews were analyzed using established qualitative methods. Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child's terminal illness and death was communicated by PICU physicians. The most common communication issue identified by parents was the physicians' availability and attentiveness to their informational needs. Other communication issues included honesty and comprehensiveness of information, affect with which information was provided, withholding of information, provision of false hope, complexity of vocabulary, pace of providing information, contradictory information, and physicians' body language. The way bad news is discussed by physicians is extremely important to most parents. Parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. Withholding prognostic information from parents often leads to false hopes and feelings of anger, betrayal, and distrust. Future research is needed to investigate whether the way bad news is discussed influences psychological adjustment and family functioning among bereaved parents.

Reflections on Developing Collaborative Research in Pediatric Psychology: Implications and Future Directions

PubMed Central

2013-01-01

Objectives Collaborative research with pediatric colleagues has become increasingly important in the professional agenda of pediatric psychology, and there is a continuing need to articulate the challenges of such research. To address this need, this article describes types of collaborative research, reasons for collaboration, collaborative process, challenges, and strategies to facilitate collaborative research. Methods Experiences and lessons learned over the course of a career in collaborative research are described. Results Challenges in collaborative research can be overcome by effective strategies of engagement and communication. Useful methods of training researchers in collaborative research include modeling and supervised mentored experiences in research initiated by trainees. Conclusion Data are needed to identify the characteristics of successful collaborative research, strategies to promote effective research, and methods of training and career development. PMID:23671060

Ethics Consultation in Pediatrics: Long-Term Experience from a Pediatric Oncology Center

PubMed Central

Johnson, Liza-Marie; Church, Christopher L.; Metzger, Monika; Baker, Justin N.

2015-01-01

There is little information about the content of ethics consultations (EC) in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records (2000–2011) at St. Jude Children’s Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician’s fiduciary responsibility to the patient. Non-patient consultations provided guidance in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision-making among multiple stakeholders and further prospective research is needed on the role of ethics consultation in pediatrics. PMID:25970382

AACAP 2005 Research Forum: Speeding the Adoption of Evidence-Based Practice in Pediatric Psychiatry

ERIC Educational Resources Information Center

March, John S.; Szatmari, Peter; Bukstein, Oscar; Chrisman, Allan; Kondo, Douglas; Hamilton, John D.; Kremer, Charlotte M. E.; Kratochvil, Christopher J.

2007-01-01

Objectives: At the 2005 Annual Meeting of the American Academy of Child and Adolescent Psychiatry (AACAP), the Academy's Workgroup on Research conducted a Research Forum entitled "Increasing Research Literacy Through the Adoption of Evidence-Based Practice (EBP) in Pediatric Psychiatry." Method: Forum participants focused on speeding the adoption…

The Child Health Care System of Serbia.

PubMed

Bogdanović, Radovan; Lozanović, Dragana; Pejović Milovančević, Milica; Sokal Jovanović, Ljiljana

2016-10-01

The health care system in Serbia is based on a network of public health institutions funded by the National Health Insurance and from the state budget. Access to public health institutions is free. Preventive and curative services are provided at the local level in primary health care centers. Over the past 5-7 years, the number of pediatricians in primary health care centers decreased because of reduced number of applicants for pediatric training, which endangers the maintenance of the traditional model of pediatric care. Secondary medical care is offered in pediatric departments of local and regional general hospitals or outpatient clinics, and in specialized hospitals for children or adults. Tertiary medical care is provided by inpatient or outpatient subspecialty services in 5 major university children's clinics. The health reforms undertaken in the recent 10 years have aimed at strengthening preventive health care and reducing the overall costs for pediatric care. Current initiatives of the Ministry of Health and national pediatric associations are aimed at reestablishing and strengthening the capacity of the primary pediatric health care model by increasing the number of physicians and developing new processes of care. Copyright © 2016 Elsevier Inc. All rights reserved.

Co-Designing a Collaborative Chronic Care Network (C3N) for Inflammatory Bowel Disease: Development of Methods

PubMed Central

Dellal, George; Peterson, Laura E; Provost, Lloyd; Gloor, Peter A; Fore, David Livingstone; Margolis, Peter A

2018-01-01

Background Our health care system fails to deliver necessary results, and incremental system improvements will not deliver needed change. Learning health systems (LHSs) are seen as a means to accelerate outcomes, improve care delivery, and further clinical research; yet, few such systems exist. We describe the process of codesigning, with all relevant stakeholders, an approach for creating a collaborative chronic care network (C3N), a peer-produced networked LHS. Objective The objective of this study was to report the methods used, with a diverse group of stakeholders, to translate the idea of a C3N to a set of actionable next steps. Methods The setting was ImproveCareNow, an improvement network for pediatric inflammatory bowel disease. In collaboration with patients and families, clinicians, researchers, social scientists, technologists, and designers, C3N leaders used a modified idealized design process to develop a design for a C3N. Results Over 100 people participated in the design process that resulted in (1) an overall concept design for the ImproveCareNow C3N, (2) a logic model for bringing about this system, and (3) 13 potential innovations likely to increase awareness and agency, make it easier to collect and share information, and to enhance collaboration that could be tested collectively to bring about the C3N. Conclusions We demonstrate methods that resulted in a design that has the potential to transform the chronic care system into an LHS. PMID:29472173

Pediatric Patient Blood Management Programs: Not Just Transfusing Little Adults.

PubMed

Goel, Ruchika; Cushing, Melissa M; Tobian, Aaron A R

2016-10-01

Red blood cell transfusions are a common life-saving intervention for neonates and children with anemia, but transfusion decisions, indications, and doses in neonates and children are different from those of adults. Patient blood management (PBM) programs are designed to assist clinicians with appropriately transfusing patients. Although PBM programs are well recognized and appreciated in the adult setting, they are quite far from standard of care in the pediatric patient population. Adult PBM standards cannot be uniformly applied to children, and there currently is significant variation in transfusion practices. Because transfusing unnecessarily can expose children to increased risk without benefit, it is important to design PBM programs to standardize transfusion decisions. This article assesses the key elements necessary for a successful pediatric PBM program, systematically explores various possible pediatric specific blood conservation strategies and the current available literature supporting them, and outlines the gaps in the evidence suggesting need for further/improved research. Pediatric PBM programs are critically important initiatives that not only involve a cooperative effort between pediatric surgery, anesthesia, perfusion, critical care, and transfusion medicine services but also need operational support from administration, clinical leadership, finance, and the hospital information technology personnel. These programs also expand the scope for high-quality collaborative research. A key component of pediatric PBM programs is monitoring pediatric blood utilization and assessing adherence to transfusion guidelines. Data suggest that restrictive transfusion strategies should be used for neonates and children similar to adults, but further research is needed to assess the best oxygenation requirements, hemoglobin threshold, and transfusion strategy for patients with active bleeding, hemodynamic instability, unstable cardiac disease, and cyanotic cardiac disease. Perioperative blood management strategies include minimizing blood draws, restricting transfusions, intraoperative cell salvage, acute normovolemic hemodilution, antifibrinolytic agents, and using point-of-care tests to guide transfusion decisions. However, further research is needed for the use of intravenous iron, erythropoiesis-stimulating agents, and possible use of whole blood and pathogen inactivation. There are numerous areas where newly formed collaborations could be used to investigate pediatric transfusion, and these studies would provide critical data to support vital pediatric PBM programs to optimize neonatal and pediatric care. Copyright © 2016 Elsevier Inc. All rights reserved.

MACULAR MICROVASCULAR NETWORKS IN HEALTHY PEDIATRIC SUBJECTS.

PubMed

Borrelli, Enrico; Lonngi, Marcela; Balasubramanian, Siva; Tepelus, Tudor C; Baghdasaryan, Elmira; Iafe, Nicholas A; Pineles, Stacy L; Velez, Federico G; Sarraf, David; Sadda, SriniVas R; Tsui, Irena

2018-02-22

To report optical coherence tomography angiography (OCTA) values in healthy pediatric eyes and to identify factors that may modify these values. In this prospective observational cross-sectional study, macular OCTA images were acquired from healthy pediatric patients. Main outcome measures were 1) foveal avascular zone (FAZ) area at the level of the superficial retinal capillary plexus (SCP); 2) SCP and deep retinal capillary plexus (DCP) perfusion density (based on the area of vessels); 3) SCP and DCP vessel density (based on a map with vessels of 1-pixel width); and 4) CC perfusion density. Multiple regression analysis was performed to assess the effect of age, sex, ethnicity, refraction, and foveal macular thickness (FMT) on OCTA parameters. Seventy-seven eyes from 52 subjects (23 male and 29 female) were included in analysis. Mean age was 11.1 ± 3.3 years (range = 5.0-17.0 years). Twenty-nine (55.8%) subjects were white, 14 (27.0%) Hispanic, 8 (15.4%) Asian, and 1 (1.8%) African-American. Mean refraction was -0.1 ± 2.4 diopters (D) (range = -5.75 to +9.0 D). Mean FMT was 248.6 ± 18.6 μm. Larger FAZ area was significantly associated with older age (P = 0.014). Furthermore, larger FAZ area was associated with reduced FMT (P < 0.0001). Male sex was associated only with increased SCP perfusion density (P = 0.042). Increased CC perfusion density was associated with younger age (P = 0.022). We report data for pediatric OCTA parameters in healthy subjects. Several variables influence the density of macular microvascular networks, and these factors should be considered in the OCTA study of pediatric eye disorders.

Telemedicine in pediatric cardiac critical care.

PubMed

Munoz, Ricardo A; Burbano, Nelson H; Motoa, María V; Santiago, Gabriel; Klevemann, Matthew; Casilli, Jeanne

2012-03-01

To describe our international telemedicine experience in pediatric cardiac critical care. This is a case series of pediatric patients teleassisted from the Cardiac Intensive Care Unit (CICU) at Children's Hospital of Pittsburgh of University of Pittsburgh Medical Center, Pittsburgh, PA, to the CICU at Hospital Valle del Lili, Cali, Valle, Colombia, between March and December 2010. An attending intensivist from the CICU in Pittsburgh reviewed cases, monitored real-time vital signs, and gave formal medical advice as requested by the attending physician in Cali. The network connection is a Cisco (San Jose, CA)-based Secure Sockets Layer virtual private network via the Internet that allows access to the web-based interface of the Dräger(®) (Lübeck, Germany) physiological monitor system. The videoconferencing equipment consists of a standard component on a custom-made mobile cart that uses an APC(®) (West Kingston, RI) uninterruptible power supply for portable power and 3Com(®) (Hewlett-Packard, Palo Alto, CA) for wireless connectivity. A post-intervention survey regarding satisfaction with the telemedicine service was conducted. Seventy-one recommendations were given regarding 53 patients. Median age and weight were 10 months and 7.1 kg, respectively. Ventricular septal defect, transposition of the great vessels, and single ventricle accounted for most cases. The most frequent recommendations were related to surgical conduct, management of arrhythmias, and performance of cardiac catheterization studies. No technical difficulties were experienced during the monitoring of the patients. Satisfaction rates were equally high for technical and medical aspects of telemedicine service. Telemedicine is a feasible option for pediatric intensivists seeking experienced assistance in the management of complex cardiac patients. Real-time remote assistance may improve the medical care of pediatric cardiac patients treated in developing countries.

Use of Actigraphy for Assessment in Pediatric Sleep Research

PubMed Central

Meltzer, Lisa J.; Montgomery-Downs, Hawley E.; Insana, Salvatore P.; Walsh, Colleen M.

2011-01-01

The use of actigraphs, or ambulatory devices that estimate sleep-wake patterns from activity levels, has become common in pediatric research. Actigraphy provides a more objective measure than parent-report, and has gained popularity due to its ability to measure sleep-wake patterns for extended periods of time in the child’s natural environment. The purpose of this review is: (1) to provide comprehensive information on the historic and current uses of actigraphy in pediatric sleep research; (2) to review how actigraphy has been validated among pediatric populations; and (3) offer recommendations for methodological areas that should be included in all studies that utilize actigraphy, including the definition and scoring of variables commonly reported. The poor specificity to detect wake after sleep onset was consistently noted across devices and age groups, thus raising concerns about what is an “acceptable” level of specificity for actigraphy. Other notable findings from this review include the lack of standard scoring rules or variable definitions. Suggestions for the use and reporting of actigraphy in pediatric research are provided. PMID:22424706

Immunotherapeutics for Pediatric Solid Tumors | NCI Technology Transfer Center | TTC

Cancer.gov

The National Cancer Institute’s Pediatric Oncology Branch seeks partners interested in licensing or collaborative research to co-develop new immunotherapeutic agents based on chimeric antigen receptor (CARs) for the treatment of pediatric solid tumors.

Pediatric Palliative Care Resources for You | NIH MedlinePlus the Magazine

MedlinePlus

... Resources for You Follow us Pediatric Palliative Care Resources for You Dealing with a serious illness can ... of Nursing Research (NINR) offers pediatric palliative care resources to help you, your family, and your health ...

Acute lymphocytic leukemia (ALL)

MedlinePlus

... JD, eds. Lanzkowsky's Manual of Pediatric Hematology and Oncology . 6th ed. Cambridge, MA: Elsevier Academic Press; 2016: ... Cancer Network website. NCCN clinical practice guidelines in oncology: acute lymphoblastic leukemia. Version 4.2017. www.nccn. ...

Children’s Environmental Health: Online Resources for Healthcare Providers

EPA Pesticide Factsheets

Free online resources, many produced in the North American Pediatric Environmental Health Specialty Unit (PEHSU) network, covering general information, air quality, asthma, climate change, lead, mercury, mold, pesticides, and water.

Pediatric caregiver involvement in the assessment of physicians.

PubMed

Moreau, Katherine A; Pound, Catherine M; Eady, Kaylee

2015-08-01

Given the growth and benefits of consumerist and family-centred approaches to pediatric health care, there is a need to involve pediatric caregivers in the assessment of their children's physicians. We present interconnected questions that are important to address in order to facilitate pediatric caregiver involvement in the assessment of their children's physicians. Pediatric caregivers can be valuable assessors of physicians' non-technical skills. It is important to conduct additional research on caregiver involvement in assessment activities and create a reflective discourse on this topic. To ensure that pediatric caregivers' assessments of physicians are formally recognized and advantageous, it is important to understand: (a) what pediatric caregivers can assess; (b) what assessment tools exist for pediatric caregivers; (c) how to create appropriate assessment tools for pediatric caregivers; (d) how to collect pediatric caregivers' assessments; (e) how to increase the legitimacy, use, and effectiveness of pediatric caregivers' assessments; and (f) the consequences of pediatric caregiver assessment.

State-of-the-Art Review on Physiologically Based Pharmacokinetic Modeling in Pediatric Drug Development.

PubMed

Yellepeddi, Venkata; Rower, Joseph; Liu, Xiaoxi; Kumar, Shaun; Rashid, Jahidur; Sherwin, Catherine M T

2018-05-18

Physiologically based pharmacokinetic modeling and simulation is an important tool for predicting the pharmacokinetics, pharmacodynamics, and safety of drugs in pediatrics. Physiologically based pharmacokinetic modeling is applied in pediatric drug development for first-time-in-pediatric dose selection, simulation-based trial design, correlation with target organ toxicities, risk assessment by investigating possible drug-drug interactions, real-time assessment of pharmacokinetic-safety relationships, and assessment of non-systemic biodistribution targets. This review summarizes the details of a physiologically based pharmacokinetic modeling approach in pediatric drug research, emphasizing reports on pediatric physiologically based pharmacokinetic models of individual drugs. We also compare and contrast the strategies employed by various researchers in pediatric physiologically based pharmacokinetic modeling and provide a comprehensive overview of physiologically based pharmacokinetic modeling strategies and approaches in pediatrics. We discuss the impact of physiologically based pharmacokinetic models on regulatory reviews and product labels in the field of pediatric pharmacotherapy. Additionally, we examine in detail the current limitations and future directions of physiologically based pharmacokinetic modeling in pediatrics with regard to the ability to predict plasma concentrations and pharmacokinetic parameters. Despite the skepticism and concern in the pediatric community about the reliability of physiologically based pharmacokinetic models, there is substantial evidence that pediatric physiologically based pharmacokinetic models have been used successfully to predict differences in pharmacokinetics between adults and children for several drugs. It is obvious that the use of physiologically based pharmacokinetic modeling to support various stages of pediatric drug development is highly attractive and will rapidly increase, provided the robustness and reliability of these techniques are well established.

2015 Pediatric Research Priorities in Prehospital Care.

PubMed

Browne, Lorin R; Shah, Manish I; Studnek, Jonathan R; Farrell, Brittany M; Mattrisch, Linda M; Reynolds, Stacy; Ostermayer, Daniel G; Brousseau, David C; Lerner, E Brooke

2016-01-01

Pediatric prehospital research has been limited, but work in this area is starting to increase particularly with the growth of pediatric-specific research endeavors. Given the increased interest in pediatric prehospital research, there is a need to identify specific research priorities that incorporate the perspective of prehospital providers and other emergency medical services (EMS) stakeholders. To develop a list of specific research priorities that is relevant, specific, and important to the practice of pediatric prehospital care. Three independent committees of EMS providers and researchers were recruited. Each committee developed a list of research topics. These topics were collated and used to initiate a modified Delphi process for developing consensus on a list of research priorities. Participants were the committee members. Topics approved by 80% were retained as research priorities. Topics that were rejected by more than 50% were eliminated. The remaining topics were modified and included on subsequent surveys. Each survey allowed respondents to add additional topics. The surveys were continued until all topics were either successfully retained or rejected and no new topics were suggested. Fifty topics were identified by the three independent committees. These topics were included on the initial electronic survey. There were 5 subsequent surveys. At the completion of the final survey a total of 29 research priorities were identified. These research priorities covered the following study areas: airway management, asthma, cardiac arrest, pain, patient-family interaction, resource utilization, seizure, sepsis, spinal immobilization, toxicology, trauma, training and competency, and vascular access. The research priorities were very specific. For example, under airway the priorities were: "identify the optimal device for effectively managing the airway in the prehospital setting" and "identify the optimal airway management device for specific disease processes." This project developed a list of relevant, specific, and important research priorities for pediatric prehospital care. Some similarities exist between this project and prior research agendas but this list represents a current, more specific research agenda and reflects the opinions of working EMS providers, researchers, and leaders. emergency medical technician; research; emergency medical services; priorities.

Cervical spine injury patterns in children.

PubMed

Leonard, Jeffrey R; Jaffe, David M; Kuppermann, Nathan; Olsen, Cody S; Leonard, Julie C

2014-05-01

Pediatric cervical spine injuries (CSIs) are rare and differ from adult CSIs. Our objective was to describe CSIs in a large, representative cohort of children. We conducted a 5-year retrospective review of children <16 years old with CSIs at 17 Pediatric Emergency Care Applied Research Network hospitals. Investigators reviewed imaging reports and consultations to assign CSI type. We described cohort characteristics using means and frequencies and used Fisher's exact test to compare differences between 3 age groups: <2 years, 2 to 7 years, and 8 to 15 years. We used logistic regression to explore the relationship between injury level and age and mechanism of injury and between neurologic outcome and cord involvement, injury level, age, and comorbid injuries. A total of 540 children with CSIs were included in the study. CSI level was associated with both age and mechanism of injury. For children <2 and 2 to 7 years old, motor vehicle crash (MVC) was the most common injury mechanism (56%, 37%). Children in these age groups more commonly injured the axial (occiput-C2) region (74%, 78%). In children 8 to 15 years old, sports accounted for as many injuries as MVCs (23%, 23%), and 53% of injuries were subaxial (C3-7). CSIs often necessitated surgical intervention (axial, 39%; subaxial, 30%) and often resulted in neurologic deficits (21%) and death (7%). Neurologic outcome was associated with cord involvement, injury level, age, and comorbid injuries. We demonstrated a high degree of variability of CSI patterns, treatments and outcomes in children. The rarity, variation, and morbidity of pediatric CSIs make prompt recognition and treatment critical. Copyright © 2014 by the American Academy of Pediatrics.

Pediatric providers' attitudes toward retail clinics.

PubMed

Garbutt, Jane M; Mandrell, Kathy M; Sterkel, Randall; Epstein, Jay; Stahl, Kristin; Kreusser, Katherine; Sitrin, Harold; Ariza, Adolfo; Reis, Evelyn Cohen; Siegel, Robert; Pascoe, John; Strunk, Robert C

2013-11-01

To describe pediatric primary care providers' attitudes toward retail clinics and their experiences of retail clinics use by their patients. A 51-item, self-administered survey from 4 pediatric practice-based research networks from the midwestern US, which gauged providers' attitudes toward and perceptions of their patients' interactions with retail clinics, and changes to office practice to better compete. A total of 226 providers participated (50% response). Providers believed that retail clinics were a business threat (80%) and disrupted continuity of chronic disease management (54%). Few (20%) agreed that retail clinics provided care within recommended clinical guidelines. Most (91%) reported that they provided additional care after a retail clinic visit (median 1-2 times per week), and 37% felt this resulted from suboptimal care at retail clinics "most or all of the time." Few (15%) reported being notified by the retail clinic within 24 hours of a patient visit. Those reporting prompt communication were less likely to report suboptimal retail clinic care (OR 0.20, 95% CI 0.10-0.42) or disruption in continuity of care (OR 0.32, 95% CI 0.15-0.71). Thirty-six percent reported changes to office practice to compete with retail clinics (most commonly adjusting or extending office hours), and change was more likely if retail clinics were perceived as a threat (OR 3.70, 95% CI 1.56-8.76); 30% planned to make changes in the near future. Based on the perceived business threat, pediatric providers are making changes to their practice to compete with retail clinics. Improved communication between the clinic and providers may improve collaboration. Copyright © 2013 Mosby, Inc. All rights reserved.

PEDIATRIC PROVIDERS’ ATTITUDES TOWARD RETAIL CLINICS

PubMed Central

Garbutt, Jane M.; Mandrell, Kathy M.; Sterkel, Randall; Epstein, Jay; Stahl, Kristin; Kreusser, Katherine; O’Neil, Jerome; Sitrin, Harold; Ariza, Adolfo; Reis, Evelyn Cohen; Siegel, Robert; Pascoe, John; Strunk, Robert C.

2013-01-01

Objective To describe pediatric primary care providers’ attitudes toward retail clinics and their experiences of retail clinics use by their patients. Study design A 51-item, self-administered survey from four pediatric practice-based research networks from the Midwestern United States, which gauged providers’ attitudes toward and perceptions of their patients’ interactions with retail clinics, and changes to office practice to better compete. Results A total of 226 providers participated (50% response). Providers believed that retail clinics were a business threat (80%) and disrupted continuity of chronic disease management (54%). Few (20%) agreed that retail clinics provided care within recommended clinical guidelines. Most (91%) reported that they provided additional care after a retail clinic visit (median 1–2 times per week) and 37% felt this resulted from suboptimal care at retail clinics “most or all of the time.” Few (15%) reported being notified by the retail clinic within 24 hours of a patient visit. Those reporting prompt communication were less likely to report suboptimal retail clinic care (OR 0.20, 95%CI 0.10 to 0.42) or disruption in continuity of care (OR 0.32, 95%CI 0.15 to 0.71). Thirty-six percent reported changes to office practice to compete with retail clinics (most commonly adjusting or extending office hours) and change was more likely if retail clinics were perceived as a threat (OR 3.70, 95%CI 1.56 to 8.76); 30% planned to make changes in the near future. Conclusions Based on the perceived business threat, pediatric providers are making changes to their practice to compete with retail clinics. Improved communication between the clinic and providers may improve collaboration. PMID:23810720

Relationship Between the Functional Status Scale and the Pediatric Overall Performance Category and Pediatric Cerebral Performance Category Scales FREE

PubMed Central

Pollack, Murray M.; Holubkov, Richard; Funai, Tomohiko; Clark, Amy; Moler, Frank; Shanley, Thomas; Meert, Kathy; Newth, Christopher J. L.; Carcillo, Joseph; Berger, John T.; Doctor, Allan; Berg, Robert A.; Dalton, Heidi; Wessel, David L.; Harrison, Rick E.; Dean, J. Michael; Jenkins, Tammara L.

2015-01-01

Importance Functional status assessment methods are important as outcome measures for pediatric critical care studies. Objective To investigate the relationships between the 2 functional status assessment methods appropriate for large-sample studies, the Functional Status Scale (FSS) and the Pediatric Overall Performance Category and Pediatric Cerebral Performance Category (POPC/PCPC) scales. Design, Setting, and Participants Prospective cohort study with random patient selection at 7 sites and 8 children’s hospitals with general/medical and cardiac/cardiovascular pediatric intensive care units (PICUs) in the Collaborative Pediatric Critical Care Research Network. Participants included all PICU patients younger than 18 years. Main Outcomes and Measures Functional Status Scale and POPC/PCPC scores determined at PICU admission (baseline) and PICU discharge. We investigated the association between the baseline and PICU discharge POPC/PCPC scores and the baseline and PICU discharge FSS scores, the dispersion of FSS scores within each of the POPC/PCPC ratings, and the relationship between the FSS neurologic components (FSS-CNS) and the PCPC. Results We included 5017 patients. We found a significant (P < .001) difference between FSS scores in each POPC or PCPC interval, with an FSS score increase with each worsening POPC/PCPC rating. The FSS scores for the good and mild disability POPC/PCPC ratings were similar and increased by 2 to 3 points for the POPC/PCPC change from mild to moderate disability, 5 to 6 points for moderate to severe disability, and 8 to 9 points for severe disability to vegetative state or coma. The dispersion of FSS scores within each POPC and PCPC rating was substantial and increased with worsening POPC and PCPC scores. We also found a significant (P < .001) difference between the FSS-CNS scores between each of the PCPC ratings with increases in the FSS-CNS score for each higher PCPC rating. Conclusions and Relevance The FSS and POPC/PCPC system are closely associated. Increases in FSS scores occur with each higher POPC and PCPC rating and with greater magnitudes of change as the dysfunction severity increases. However, the dispersion of the FSS scores indicated a lack of precision in the POPC/PCPC system when compared with the more objective and granular FSS. The relationship between the PCPC and the FSS-CNS paralleled the relationship between the FSS and POPC/PCPC system. PMID:24862461

The Prevention of Early Asthma in Kids study: design, rationale and methods for the Childhood Asthma Research and Education network.

PubMed

Guilbert, Theresa W; Morgan, Wayne J; Krawiec, Marzena; Lemanske, Robert F; Sorkness, Chris; Szefler, Stanley J; Larsen, Gary; Spahn, Joseph D; Zeiger, Robert S; Heldt, Gregory; Strunk, Robert C; Bacharier, Leonard B; Bloomberg, Gordon R; Chinchilli, Vernon M; Boehmer, Susan J; Mauger, Elizabeth A; Mauger, David T; Taussig, Lynn M; Martinez, Fernando D

2004-06-01

Pediatric asthma remains an important public health concern as its prevalence and cost to the health care system is rising. In order to promote innovative research in asthma therapies, the National Heart, Lung and Blood Institute created the Childhood Asthma Research and Education Network in 1999. As its first study, the steering committee of the Childhood Asthma Research and Education Network designed a randomized clinical trial to determine if persistent asthma could be prevented in children at a high risk to develop the disease. This communication presents the design of its first clinical trial, the Prevention of Asthma in Kids (PEAK) trial and the organization of the Childhood Asthma Research and Education Network that developed and implemented this trial. Studies of the natural history of asthma have shown that, in persistent asthma, the initial asthma-like symptoms and loss of lung function occur predominately during the first years of life. Therefore, in the Prevention of Asthma in Kids study, children 2 and 3 years old with a positive asthma predictive index were randomized to twice daily treatment with fluticasone 88 microg or placebo via metered-dose inhaler and Aerochamber for 2 years. The double blind treatment period was followed by a 1-year observational period. Lung function was measured by spirometry and oscillometry technique at 4-month intervals throughout the study. Bronchodilator reversibility and exhaled nitric oxide (ENO) studies were performed at the end of the treatment and observation periods. The primary outcome measure was the number of asthma-free days. Other secondary outcomes included number of exacerbations, use of asthma medications and lung function. These measures were chosen to reflect the progression of the disease from intermittent wheezing to persistent asthma and measurement of the extent of airflow limitation and airway reactivity.

Dynamic P-Technique for Modeling Patterns of Data: Applications to Pediatric Psychology Research

PubMed Central

Aylward, Brandon S.; Rausch, Joseph R.

2011-01-01

Objective Dynamic p-technique (DPT) is a potentially useful statistical method for examining relationships among dynamic constructs in a single individual or small group of individuals over time. The purpose of this article is to offer a nontechnical introduction to DPT. Method An overview of DPT analysis, with an emphasis on potential applications to pediatric psychology research, is provided. To illustrate how DPT might be applied, an example using simulated data is presented for daily pain and negative mood ratings. Results The simulated example demonstrates the application of DPT to a relevant pediatric psychology research area. In addition, the potential application of DPT to the longitudinal study of adherence is presented. Conclusion Although it has not been utilized frequently within pediatric psychology, DPT could be particularly well-suited for research in this field because of its ability to powerfully model repeated observations from very small samples. PMID:21486938

Dynamic p-technique for modeling patterns of data: applications to pediatric psychology research.

PubMed

Nelson, Timothy D; Aylward, Brandon S; Rausch, Joseph R

2011-10-01

Dynamic p-technique (DPT) is a potentially useful statistical method for examining relationships among dynamic constructs in a single individual or small group of individuals over time. The purpose of this article is to offer a nontechnical introduction to DPT. An overview of DPT analysis, with an emphasis on potential applications to pediatric psychology research, is provided. To illustrate how DPT might be applied, an example using simulated data is presented for daily pain and negative mood ratings. The simulated example demonstrates the application of DPT to a relevant pediatric psychology research area. In addition, the potential application of DPT to the longitudinal study of adherence is presented. Although it has not been utilized frequently within pediatric psychology, DPT could be particularly well-suited for research in this field because of its ability to powerfully model repeated observations from very small samples.

Baby steps. Lessons learned by leaders of one of the nation's leading children's hospitals on the complexities of IT rollouts in the pediatric setting.

PubMed

Gamble, Kate Huvane

2010-05-01

As information technology has become a larger factor in the healthcare industry, one area of care that has been somewhat neglected is pediatrics. The most significant factor differentiating pediatric care from adult care in terms of IT implementation is the variability in treatment based on a patient's age and size. But while there are challenges--particularly in the areas of medication administration, growth chart analysis and clinical documentation--forward-thinking leaders have found success by collaborating with vendors to customize products to meet their needs. It's important to develop relationships with other organizations and create a network of trusted leaders who can provide advice when rolling out applications like EMRs.

Mediator and moderator effects in developmental and behavioral pediatric research.

PubMed

Rose, Brigid M; Holmbeck, Grayson N; Coakley, Rachael Millstein; Franks, Elizabeth A

2004-02-01

The terms mediation and moderation are defined and clarified with particular emphasis on the role of mediational and moderational analyses in developmental and behavioral pediatric research. The article highlights the applicability of mediational and moderational analyses to longitudinal, intervention, and risk and protective factor research, and it provides basic information about how these analyses might be conducted. Also included is a discussion of various ways that both mediator and moderator variables can be incorporated into a single model. The article concludes with extended examples of both types of analyses using a longitudinal pediatric study for illustration. The article provides recommendations for applying mediational and moderational research in clinical practice.

Disclosure of Incidental Findings From Next-Generation Sequencing in Pediatric Genomic Research

PubMed Central

Abdul-Karim, Ruqayyah; Berkman, Benjamin E.; Wendler, David; Rid, Annette; Khan, Javed; Badgett, Tom

2013-01-01

Next-generation sequencing technologies will likely be used with increasing frequency in pediatric research. One consequence will be the increased identification of individual genomic research findings that are incidental to the aims of the research. Although researchers and ethicists have raised theoretical concerns about incidental findings in the context of genetic research, next-generation sequencing will make this once largely hypothetical concern an increasing reality. Most commentators have begun to accept the notion that there is some duty to disclose individual genetic research results to research subjects; however, the scope of that duty remains unclear. These issues are especially complicated in the pediatric setting, where subjects cannot currently but typically will eventually be able to make their own medical decisions at the age of adulthood. This article discusses the management of incidental findings in the context of pediatric genomic research. We provide an overview of the current literature and propose a framework to manage incidental findings in this unique context, based on what we believe is a limited responsibility to disclose. We hope this will be a useful source of guidance for investigators, institutional review boards, and bioethicists that anticipates the complicated ethical issues raised by advances in genomic technology. PMID:23400601

Why do children decide not to participate in clinical research: a quantitative and qualitative study.

PubMed

Hein, Irma M; Troost, Pieter W; de Vries, Martine C; Knibbe, Catherijne A J; van Goudoever, Johannes B; Lindauer, Ramón J L

2015-07-01

More pediatric drug trials are needed, but although specific pediatric regulations warrant safety, recruitment of children for these trials remains one of the main difficulties. Therefore, we investigated potential determining factors of nonparticipation in clinical research, in order to optimize research participation of children by recommending improved recruitment strategies. Between 1 January 2012 and 1 January 2014, we performed a prospective study among161 pediatric patients, aged 6 to 18 y, who were eligible for clinical research. We quantitatively analyzed the association of potential explanatory variables (e.g., age, cognitive development, experience, ethnicity) with nonparticipation and qualitatively analyzed interviews on reasons for nonparticipation. Sixty percent of the children did not participate in the research project on offer (39% decided not to participate, 21% were indecisive). Lower age, less disease experience, and less complex research with lower risk were predictive for not participating. Time constraint and extra burden were expressed as decisive reasons for not participating. Strategies to optimize research participation should be aimed at younger children and their families, who are logistically challenged and unfamiliar with health care and research. Recommendations include informing pediatric patients and their families of the value of research; minimizing logistic burdens; and improving accessibility.

Altered affective, executive and sensorimotor resting state networks in patients with pediatric mania

PubMed Central

Wu, Minjie; Lu, Lisa H.; Passarotti, Alessandra M.; Wegbreit, Ezra; Fitzgerald, Jacklynn; Pavuluri, Mani N.

2013-01-01

Background The aim of the present study was to map the pathophysiology of resting state functional connectivity accompanying structural and functional abnormalities in children with bipolar disorder. Methods Children with bipolar disorder and demographically matched healthy controls underwent resting-state functional magnetic resonance imaging. A model-free independent component analysis was performed to identify intrinsically interconnected networks. Results We included 34 children with bipolar disorder and 40 controls in our analysis. Three distinct resting state networks corresponding to affective, executive and sensorimotor functions emerged as being significantly different between the pediatric bipolar disorder (PBD) and control groups. All 3 networks showed hyperconnectivity in the PBD relative to the control group. Specifically, the connectivity of the dorsal anterior cingulate cortex (ACC) differentiated the PBD from the control group in both the affective and the executive networks. Exploratory analysis suggests that greater connectivity of the right amygdala within the affective network is associated with better executive function in children with bipolar disorder, but not in controls. Limitations Unique clinical characteristics of the study sample allowed us to evaluate the pathophysiology of resting state connectivity at an early state of PBD, which led to the lack of generalizability in terms of comorbid disorders existing in a typical PBD population. Conclusion Abnormally engaged resting state affective, executive and sensorimotor networks observed in children with bipolar disorder may reflect a biological context in which abnormal task-based brain activity can occur. Dual engagement of the dorsal ACC in affective and executive networks supports the neuroanatomical interface of these networks, and the amygdala’s engagement in moderating executive function illustrates the intricate interplay of these neural operations at rest. PMID:23735583

Do health care institutions value research? A mixed methods study of barriers and facilitators to methodological rigor in pediatric randomized trials.

PubMed

Hamm, Michele P; Scott, Shannon D; Klassen, Terry P; Moher, David; Hartling, Lisa

2012-10-18

Pediatric randomized controlled trials (RCTs) are susceptible to a high risk of bias. We examined the barriers and facilitators that pediatric trialists face in the design and conduct of unbiased trials. We used a mixed methods design, with semi-structured interviews building upon the results of a quantitative survey. We surveyed Canadian (n=253) and international (n=600) pediatric trialists regarding their knowledge and awareness of bias and their perceived barriers and facilitators in conducting clinical trials. We then interviewed 13 participants from different subspecialties and geographic locations to gain a more detailed description of how their experiences and attitudes towards research interacted with trial design and conduct. The survey response rate was 23.0% (186/807). 68.1% of respondents agreed that bias is a problem in pediatric RCTs and 72.0% felt that there is sufficient evidence to support changing some aspects of how trials are conducted. Knowledge related to bias was variable, with inconsistent awareness of study design features that may introduce bias into a study. Interview participants highlighted a lack of formal training in research methods, a negative research culture, and the pragmatics of trial conduct as barriers. Facilitators included contact with knowledgeable and supportive colleagues and infrastructure for research. A lack of awareness of bias and negative attitudes towards research present significant barriers in terms of conducting methodologically rigorous pediatric RCTs. Knowledge translation efforts must focus on these issues to ensure the relevance and validity of trial results.

Clinical Evaluation of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Recommendations from the 2013 PANS Consensus Conference

PubMed Central

Frankovich, Jennifer; Cooperstock, Michael; Cunningham, Madeleine W.; Latimer, M. Elizabeth; Murphy, Tanya K.; Pasternack, Mark; Thienemann, Margo; Williams, Kyle; Walter, Jolan; Swedo, Susan E.

2015-01-01

Abstract On May 23 and 24, 2013, the First PANS Consensus Conference was convened at Stanford University, calling together a geographically diverse group of clinicians and researchers from complementary fields of pediatrics: General and developmental pediatrics, infectious diseases, immunology, rheumatology, neurology, and child psychiatry. Participants were academicians with clinical and research interests in pediatric autoimmune neuropsychiatric disorder associated with streptococcus (PANDAS) in youth, and the larger category of pediatric acute-onset neuropsychiatric syndrome (PANS). The goals were to clarify the diagnostic boundaries of PANS, to develop systematic strategies for evaluation of suspected PANS cases, and to set forth the most urgently needed studies in this field. Presented here is a consensus statement proposing recommendations for the diagnostic evaluation of youth presenting with PANS. PMID:25325534

The US pediatric nephrology workforce: a report commissioned by the American Academy of Pediatrics.

PubMed

Primack, William A; Meyers, Kevin E; Kirkwood, Suzanne J; Ruch-Ross, Holly S; Radabaugh, Carrie L; Greenbaum, Larry A

2015-07-01

The US pediatric nephrology workforce is poorly characterized. This report describes clinical and nonclinical activities, motivations and disincentives to a career in pediatric nephrology, future workforce needs, trainee recruitment, and possible explanations for personnel shortages. An e-mail survey was sent in 2013 to all identified US-trained or -practicing pediatric nephrologists. Of 504 respondents, 51% are men, 66% are US graduates, and 73% work in an academic setting. About 20% of trained pediatric nephrologists no longer practice pediatric nephrology. Among the 384 respondents practicing pediatric nephrology full or part-time in the United States, the mean work week was 56.1±14.3 hours, with time divided between patient care (59%), administration (13%), teaching (10%), clinical research (9%), basic research (6%), and other medical activities (3%). Most (>85%) care for dialysis and transplantation patients. The median number of weeks annually on call is 16, and 29% work with one or no partner. One-third of US pediatric nephrologists (n=126) plan to reduce or stop clinical nephrology practice in the next 5 years, and 53% plan to fully or partially retire. Almost half the division chiefs (47%) report inadequate physician staffing. Ongoing efforts to monitor and address pediatric nephrology workforce issues are needed. Copyright © 2015 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

Psychosocially Supportive Design: The Case for Greater Attention to Social Space Within the Pediatric Hospital.

PubMed

McLaughlan, Rebecca

2018-04-01

Models of patient and family-centered care advocate catering to psychosocial needs when designing healthcare facilities yet there is little evidence available to determine how the built environment can cater to psychosocial needs. This article highlights the obstacles to overcoming this knowledge deficit in the pursuit of evidence-based guidelines to inform social provisions within the pediatric hospital setting. It will propose a working definition for psychosocial space and identify new research directions to enhance understandings of the relationship between social space and well-being. While traditional multibed ward configurations afforded opportunities for peer support relationships to develop, both for patients and caregivers, the contemporary preference for single-occupancy rooms intensifies the need to critically examine social spaces within the pediatric hospital. Research suggests a correlation between social support and well-being. This article reviews the research underpinning contemporary understandings of this relationship; it positions literature from sociology, environmental psychology, and evidence-based design to highlight the limitations of this knowledge and identify where additional research is required to inform evidence-based design guidelines for psychosocially supportive spaces within pediatric healthcare settings. Evidence regarding the therapeutic value of social support within the pediatric hospital is not sufficiently sophisticated or conclusive to inform guidelines for the provision of social space with pediatric hospitals. There is an urgent need for targeted research to inform evidence-based design guidelines; this will demand a broad disciplinary approach.

Eunice Kennedy Shriver National Institute of Child Health and Human Development Pediatrics Formulation Initiative: proceedings from the Second Workshop on Pediatric Formulations.

PubMed

Giacoia, George P; Taylor-Zapata, Perdita; Zajicek, Anne

2012-11-01

The Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (NIH) organized a workshop held in November 2011 to address knowledge gaps that limit the availability of adequate pediatric formulations. This workshop was used as a means to identify the types of research innovations needed and to stimulate research efforts designed to improve the availability of pediatric formulations and the technologies required to make these formulations. Information for this article was gathered from the proceedings of the Second US PFI Workshop sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development in Bethesda, Maryland, on November 1 and 2, 2011, as well as from post-workshop discussions. The workshop preparation began with formation of 4 working groups: Biopharmaceutics, Biopharmaceutics Classification System (BCS), New Technology and Drug Delivery Systems, and Taste and Flavor. The recommendations of the 4 working groups will form the basis for the development of a blueprint to guide future research efforts. The pediatric-specific problems identified include the heterogeneity of the population, the small size of the pediatric drug market, the limited number of new formulations for the large number of off-patent and unlabeled drugs, and the lack of universal agreement on how to define appropriate formulations for different ages and stages of development. There was consensus on the need to develop a universal technology platform for flexible pediatric dosage forms, transforming an empirical process into a science-based platform. A number of problems affect the availability of drugs in the developing world. Age-appropriate solid oral pediatric medicines for common diseases can have a global impact. Success on a global scale depends on the commitment of policy makers, regulators, scientists, pharmaceutical companies, sponsors, government, and research foundations to address gaps in knowledge and solve public health issues related to the availability of formulations in the developing world. Solutions to the worldwide lack of appropriate pediatric formulations will require the development of a road map and the commitment of policy makers, regulators, scientists, pharmaceutical sponsors, academic institutions, governments, and research foundations. The development of a universal, cost-effective platform using existing or developing innovative technology that produces flexible pediatric dosage forms remains an important but elusive goal. Published by EM Inc USA.

Survival in pediatric lung transplantation: The effect of center volume and expertise.

PubMed

Khan, Muhammad S; Zhang, Wei; Taylor, Rachel A; Dean McKenzie, E; Mallory, George B; Schecter, Marc G; Morales, David L S; Heinle, Jeffrey S; Adachi, Iki

2015-08-01

Institutional operative volume has been shown to impact outcomes of various procedures including lung transplantation (LTx). We sought to determine whether this holds true with pediatric LTx by comparing outcomes of adult centers (with larger overall volume) to those of pediatric centers (with smaller volume but more pediatric-specific experience). A retrospective analysis of the Organ Procurement and Transplant Network data was performed. Centers were categorized as either adult (LTx volume predominantly in adult patients), high-volume pediatric (HVP, ≥4 LTxs/year), or low-volume pediatric (LVP, <4 LTxs/year). Outcomes were compared in "younger children" (<12 years) and "older children and adolescents" (12 to 17 years). In total, 1,046 pediatric LTxs were performed between 1987 and 2012 at 62 centers (adult 51 [82%], HVP 3 [5%], LVP 8 [13%]). Although adult centers had larger overall LTx volume, their pediatric experiences were severely limited (median 1/year). In younger children, HVP centers were significantly better than LVP centers for patient survival (half-life: 7.3 vs 2.9 years, p = 0.002). Similarly, in older children and adolescents, HVP centers were significantly better than adult centers for patient survival (half-life: 4.6 vs 2.5 years, p = 0.001). Of note, even LVP centers tended to have longer patient survival than adult centers (p = 0.064). Multivariable analysis identified adult centers as an independent risk factor for graft failure (hazard ratio: 1.5, p < 0.001) as with LVP (hazard ratio: 1.3, p = 0.0078). Despite larger overall clinical volume, outcomes among pediatric LTx recipients in adult centers are not superior to those of pediatric centers. Not only center volume but pediatric-specific experience has an impact on outcomes in pediatric LTx. Copyright © 2015 International Society for Heart and Lung Transplantation. Published by Elsevier Inc. All rights reserved.

Pediatric sepsis.

PubMed

Mathias, Brittany; Mira, Juan C; Larson, Shawn D

2016-06-01

Sepsis is the leading cause of pediatric death worldwide. In the United States alone, there are 72 000 children hospitalized for sepsis annually with a reported mortality rate of 25% and an economic cost estimated to be $4.8 billion. However, it is only recently that the definition and management of pediatric sepsis has been recognized as being distinct from adult sepsis. The definition of pediatric sepsis is currently in a state of evolution, and there is a large disconnect between the clinical and research definitions of sepsis which impacts the application of research findings into clinical practice. Despite this, it is the speed of diagnosis and the timely implementation of current treatment guidelines that has been shown to improve outcomes. However, adherence to treatment guidelines is currently low and it is only through the implementation of protocols that improved care and outcomes have been demonstrated. The current management of pediatric sepsis is largely based on adaptations from adult sepsis treatment; however, distinct physiology demands more prospective pediatric trials to tailor management to the pediatric population. Adherence to current and emerging practice guidelines will require that protocolized care pathways become a commonplace.

Big and disparate data: considerations for pediatric consortia.

PubMed

Stingone, Jeanette A; Mervish, Nancy; Kovatch, Patricia; McGuinness, Deborah L; Gennings, Chris; Teitelbaum, Susan L

2017-04-01

Increasingly, there is a need for examining exposure disease associations in large, diverse datasets to understand the complex determinants of pediatric disease and disability. Recognizing that children's health research consortia will be important sources of big data, it is crucial for the pediatric research community to be knowledgeable about the challenges and opportunities that they will face. The present review will provide examples of existing children's health consortia, highlight recent pooled analyses conducted by children's health research consortia, address common challenges of pooled analyses, and provide recommendations to advance collective research efforts in pediatric research. Formal consortia and other collective-science initiatives are increasingly being created to share individual data from a set of relevant epidemiological studies to address a common research topic under the concept that the joint effort of many individual groups can accomplish far more than working alone. There are practical challenges to the participation of investigators within consortia that need to be addressed in order for them to work. Researchers who access consortia with data centers will be able to go far beyond their initial hypotheses and potentially accomplish research that was previously thought infeasible or too costly.

Bowel preparation for pediatric colonoscopy: report of the NASPGHAN endoscopy and procedures committee.

PubMed

Pall, Harpreet; Zacur, George M; Kramer, Robert E; Lirio, Richard A; Manfredi, Michael; Shah, Manoj; Stephen, Thomas C; Tucker, Neil; Gibbons, Troy E; Sahn, Benjamin; McOmber, Mark; Friedlander, Joel; Quiros, J A; Fishman, Douglas S; Mamula, Petar

2014-09-01

Pediatric bowel preparation protocols used before colonoscopy vary greatly, with no identified standard practice. The present clinical report reviews the evidence for several bowel preparations in children and reports on their use among North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition members. Publications in the pediatric literature for bowel preparation regimens are described, including mechanisms of action, efficacy and ease of use, and pediatric studies. A survey distributed to pediatric gastroenterology programs across the country reviews present national practice, and cleanout recommendations are provided. Finally, further areas for research are identified.

Music therapy services in pediatric oncology: a national clinical practice review.

PubMed

Tucquet, Belinda; Leung, Maggie

2014-01-01

This article presents the results of a national clinical practice review conducted in Australia of music therapy services in pediatric oncology hospitals. Literature specifically related to music therapy and symptom management in pediatric oncology is reviewed. The results from a national benchmarking survey distributed to all music therapists working with children with cancer in Australian pediatric hospitals are discussed. Patient and family feedback provided from a quality improvement activity conducted at a major pediatric tertiary hospital is summarized, and considerations for future growth as a profession and further research is proposed. © 2014 by Association of Pediatric Hematology/Oncology Nurses.

2015 RAD-AID Conference on International Radiology for Developing Countries: The Evolving Global Radiology Landscape.

PubMed

Kesselman, Andrew; Soroosh, Garshasb; Mollura, Daniel J

2016-09-01

Radiology in low- and middle-income (developing) countries continues to make progress. Research and international outreach projects presented at the 2015 annual RAD-AID conference emphasize important global themes, including (1) recent slowing of emerging market growth that threatens to constrain the advance of radiology, (2) increasing global noncommunicable diseases (such as cancer and cardiovascular disease) needing radiology for detection and management, (3) strategic prioritization for pediatric radiology in global public health initiatives, (4) continuous expansion of global health curricula at radiology residencies and the RAD-AID Chapter Network's participating institutions, and (5) technologic innovation for recently accelerated implementation of PACS in low-resource countries. Published by Elsevier Inc.

Strategic plan for pediatric respiratory diseases research: an NHLBI working group report.

PubMed

Castro, Mario; Ramirez, Maria I; Gern, James E; Cutting, Garry; Redding, Greg; Hagood, James S; Whitsett, Jeffrey; Abman, Steve; Raj, J Usha; Barst, Robyn; Kato, Gregory J; Gozal, David; Haddad, Gabriel G; Prabhakar, Nanduri R; Gauda, Estelle; Martinez, Fernando D; Tepper, Robert; Wood, Robert E; Accurso, Frank; Teague, W Gerald; Venegas, Jose; Cole, F Sessions; Wright, Rosalind J

2009-01-15

The Division of Lung Diseases of the National Heart, Lung, and Blood Institute (NHLBI) recently held a workshop to identify gaps in our understanding and treatment of childhood lung diseases and to define strategies to enhance translational research in this field. Leading experts with diverse experience in both laboratory and patient-oriented research reviewed selected areas of pediatric lung diseases, including perinatal programming and epigenetic influences; mechanisms of lung injury, repair, and regeneration; pulmonary vascular disease; sleep and control of breathing; and the application of novel translational methods to enhance personalized medicine. This report summarizes the proceedings of this workshop and provides recommendations for emphasis on targeted areas for future investigation. The priority areas identified for research in pediatric pulmonary diseases included: (1) epigenetic and environmental influences on lung development that program pediatric lung diseases; (2) injury, regeneration, and repair in the developing lung; (3) pulmonary vascular disease in children; (4) development and adaptation of ventilatory responses to postnatal life; (5) nonatopic wheezing: aberrant large airway development or injury?; (6) strategies to improve assessment, diagnosis, and treatment of pediatric respiratory diseases; and (7) predictive and personalized medicine for children.

Improving Healthcare in Pediatric Oncology: Development and Testing of Multiple Indicators to Evaluate a Hub-And-Spoke Model.

PubMed

Zucchetti, Giulia; Bertorello, Nicoletta; Angelastro, Angela; Gianino, Paola; Bona, Gianni; Barbara, Affif; Besenzon, Luigi; Brach Del Prever, Adalberto; Pesce, Fernando; Nangeroni, Marco; Fagioli, Franca

2017-06-01

Purpose The hub-and-spoke is a new innovation model in healthcare that has been adopted in some countries to manage rare pathologies. We developed a set of indicators to assess current quality practices of the hub-and-spoke model adopted in the Interregional Pediatric Oncology Network in Northwest Italy and to promote patient, family, and professional healthcare empowerment. Methods Literature and evidence-based clinical guidelines were reviewed and multiprofessional team workshops were carried out to highlight some important issues on healthcare in pediatric oncology and to translate them into a set of multiple indicators. For each indicator, specific questions were formulated and tested through a series of questionnaires completed by 80 healthcare professionals and 50 pediatric patients and their parents. Results The results highlighted a positive perception of healthcare delivered by the hub-and-spoke model (M HP = 156, M Pat = 93, M Par = 104). Based on the participants' suggestions, some quality improvements have been implemented. Conclusions This study represents the first attempt to examine this new model of pediatric oncology care through the active involvement of patients, families, and healthcare professionals. Suggestions for adopting a hub-and-spoke model in pediatric oncology in other regions and countries are also highlighted.

77 FR 19673 - Pediatric Advisory Committee; Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2012-04-02

... discuss pediatric-focused safety reviews, as mandated by the Best Pharmaceuticals for Children Act and the... safety reviews, as mandated by the Pediatric Research Equity Act, for Gardasil Human Papillomavirus Quadrivalent (Types 6, 11, 16, 18) Vaccine, Recombinant, Isopto Carpine (pilocarpine hydrochloride), Menveo...

A practical guide to manuscript writing with particular relevance to the field of pediatric hospital medicine.

PubMed

Teufel, Ronald J; Andrews, Anne L; Williams, Derek J

2014-11-01

Publishing manuscripts in peer-reviewed journals, such as Hospital Pediatrics, is critical for both the academic development of practitioners in pediatric hospital medicine and the scientific advancement of our field. Understanding the purpose of scientific writing and developing a structured approach to the writing process is essential. Doing so will improve the clarity of your work and likely the ease at which your research is published and disseminated throughout the scientific community. The purposes of this article are to detail the structure of a scientific manuscript, to highlight specific writing strategies, and to provide writing tips that may help or hinder publication. Our ultimate goal is to advance the field of pediatric hospital medicine and its growing membership by promoting the dissemination of high-quality research. Copyright © 2014 by the American Academy of Pediatrics.

A practical approach to risk-benefit estimation in pediatric drug research.

PubMed

Koren, Gideon

2015-02-01

One of the most difficult challenges in pediatric drug research is in exposing children to risk, often without a balanced chance of benefits. While the concept of risk is similar in adult research, the adult patient can decide for himself/herself on an acceptable level of risk, whereas children have to accept the decisions of their guardians. This paper attempts to put the complexities of estimating risk in pediatric drug research into their practical perspective, and to familiarize the reader with the way such processes are conducted in different parts of the world. Although there are regional differences, all authorities typically quantify risks of pediatric research in general, and drug research in particular, in three levels: those experienced in day-to-day life; risks slightly above this 'baseline' risk; and risks substantially above 'baseline risk'. Proportionally, the diligence of the ethics process depends on these levels, as well as on the potential benefits (or lack of) to the child involved in the research. Importantly, risk is context dependent, and a particular intervention may be effective or safe in one setting but not in another, based on local experience, staffing levels, and similar variabilities.

Effect of child health status on parents’ allowing children to participate in pediatric research

PubMed Central

2013-01-01

Background To identify motivational factors linked to child health status that affected the likelihood of parents’ allowing their child to participate in pediatric research. Methods Parents were invited to return their completed questionnaires anonymously to assess motivational factors and factors that might improve participation in pediatric research. Results Of 573 eligible parents, 261 returned the completed questionnaires. Of these, 126 were parents of healthy children (group 1), whereas 135 were parents of sick children who were divided into two groups according to the severity of their pathology, i.e., 99 ambulatory children (group 2) and 36 nonambulatory children (group 3). The main factor motivating participation in a pediatric clinical research study was “direct benefits for their child” (87.7%, 100%, and 100% for groups 1, 2, and 3, respectively). The other factors differed significantly between the three groups, depending on the child’s health status (all p < 0.05). Factors that might have a positive impact on parental consent to the participation of their child in a pediatric clinical research study differed significantly (χ2 test, all p ≤ 0.04), depending on the child’s health status. The main factor was “a better understanding of the study and its regulation” for the healthy children and ambulatory sick children groups (31.2% and 82.1%, respectively), whereas this was the third factor for the nonambulatory sick children group (50%). Conclusions Innovative strategies should be developed based on a child’s health status to improve information provision when seeking a child’s participation in pediatric research. Parents would like to spend more time in discussions with investigators. PMID:23414421

Social support, flexible resources, and health care navigation.

PubMed

Gage-Bouchard, Elizabeth A

2017-10-01

Recent research has focused attention on the role of patients' and clinicians' cultural skills and values in generating inequalities in health care experiences. Yet, examination of how social structural factors shape people's abilities to build, refine, and leverage strategies for navigating the health care system have received less attention. In this paper I place focus on one such social structural factor, social support, and examine how social support operates as a flexible resource that helps people navigate the health care system. Using the case of families navigating pediatric cancer care this study combines in-depth interviews with parents of pediatric cancer patients (N = 80), direct observation of clinical interactions between families and physicians (N = 73), and in-depth interviews with pediatric oncologists (N = 8). Findings show that physicians assess parental visibility in the hospital, medical vigilance, and adherence to their child's treatment and use these judgments to shape clinical decision-making. Parents who had help from their personal networks had more agility in balancing competing demands, and this allowed parents to more effectively meet institutional expectations for appropriate parental involvement in the child's health care. In this way, social support served as a flexible resource for some families that allowed parents to more quickly adapt to the demands of caring for a child with cancer, foster productive interpersonal relationships with health care providers, and play a more active role in their child's health care. Copyright © 2017 Elsevier Ltd. All rights reserved.

Criteria for CT and Initial Management of Head Injured Infants: A Review

PubMed Central

SHIOMI, Naoto; ECHIGO, Tadashi; HINO, Akihiko; HASHIMOTO, Naoya; YAMAKI, Tarumi

2016-01-01

Criteria for computed tomography (CT) to head injured infants have not been established. Since the identification of neurological findings is difficult in infants, examination by CT may be necessary in some cases, but it may be difficult to perform CT because of problems with radiation exposure and body movement. Moreover, even though no intracranial abnormality was found immediately after injury, abnormal findings may appear after several hours. From this viewpoint, course observation after injury may be more important than CT in the initial treatment of head trauma in infants. The complaints and neurological manifestations of infants, particularly those aged 2 or younger, are frequently unclear; therefore, there is an opinion that CT is recommended for all pediatric patients. However, the appropriateness of its use should be determined after confirming the mechanism of injury, consciousness level, neurological findings, and presence/absence of a history of abuse. Among the currently available rules specifying criteria for CT of infants with head trauma, the Pediatric Emergency Care Applied Research Network (PECARN) study may be regarded as reliable at present. In Japan, where the majority of emergency hospitals are using CT, it may be necessary to develop criteria for CT in consideration of the actual situation. CT diagnosis for pediatric head trauma is not always necessary. When no imaging is performed, this should be fully explained at the initial treatment before selecting course observation at home. Checking on a state of the patients by telephone is useful for both patients and physicians. PMID:27194179

Development of a Pediatric Adverse Events Terminology.

PubMed

Gipson, Debbie S; Kirkendall, Eric S; Gumbs-Petty, Brenda; Quinn, Theresa; Steen, A; Hicks, Amanda; McMahon, Ann; Nicholas, Savian; Zhao-Wong, Anna; Taylor-Zapata, Perdita; Turner, Mark; Herreshoff, Emily; Jones, Charlotte; Davis, Jonathan M; Haber, Margaret; Hirschfeld, Steven

2017-01-01

In 2009, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) established the Pediatric Terminology Harmonization Initiative to establish a core library of terms to facilitate the acquisition and sharing of knowledge between pediatric clinical research, practice, and safety reporting. A coalition of partners established a Pediatric Terminology Adverse Event Working Group in 2013 to develop a specific terminology relevant to international pediatric adverse event (AE) reporting. Pediatric specialists with backgrounds in clinical care, research, safety reporting, or informatics, supported by biomedical terminology experts from the National Cancer Institute's Enterprise Vocabulary Services participated. The multinational group developed a working definition of AEs and reviewed concepts (terms, synonyms, and definitions) from 16 pediatric clinical domains. The resulting AE terminology contains >1000 pediatric diseases, disorders, or clinical findings. The terms were tested for proof of concept use in 2 different settings: hospital readmissions and the NICU. The advantages of the AE terminology include ease of adoption due to integration with well-established and internationally accepted biomedical terminologies, a uniquely temporal focus on pediatric health and disease from conception through adolescence, and terms that could be used in both well- and underresourced environments. The AE terminology is available for use without restriction through the National Cancer Institute's Enterprise Vocabulary Services and is fully compatible with, and represented in, the Medical Dictionary for Regulatory Activities. The terminology is intended to mature with use, user feedback, and optimization. Copyright © 2017 by the American Academy of Pediatrics.

StaR Child Health: developing evidence-based guidance for the design, conduct, and reporting of pediatric trials.

PubMed

Hartling, L; Wittmeier, K D M; Caldwell, P H; van der Lee, J H; Klassen, T P; Craig, J C; Offringa, M

2011-11-01

Standards for Research in (StaR) Child Health was founded in 2009 to address the paucity and shortcomings of pediatric clinical trials. This initiative involves international experts who are dedicated to developing practical, evidence-based standards to enhance the reliability and relevance of pediatric clinical research. Through a systematic "knowledge to action" plan, StaR Child Health will make efforts to improve and expand the evidence base for child health across the world.

Predictors of Patient Satisfaction in Pediatric Oncology.

PubMed

Davis, Josh; Burrows, James F; Ben Khallouq, Bertha; Rosen, Paul

To understand key drivers of patient satisfaction in pediatric hematology/oncology. The "top-box" scores of patient satisfaction surveys from 4 pediatric hematology/oncology practices were collected from 2012 to 2014 at an integrated Children's Health Network. One item, "Likelihood of recommending practice," was used as the surrogate for overall patient satisfaction, and all other items were correlated to this item. A total of 1244 satisfaction surveys were included in this analysis. The most important predictors of overall patient satisfaction were cheerfulness of practice ( r = .69), wait time ( r = .60), and staff working together ( r = .60). The lowest scoring items were getting clinic on phone, information about delays, and wait time at clinic. Families bringing their children for outpatient care in a hematology/oncology practice want to experience a cheerful and collaborative medical team. Wait time at clinic may be a key driver in the overall experience for families with children with cancer. Future work should be directed at using this evidence to drive patient experience improvement processes in pediatric hematology/oncology.

Pediatric cardiovascular safety: challenges in drug and device development and clinical application.

PubMed

Bates, Katherine E; Vetter, Victoria L; Li, Jennifer S; Cummins, Susan; Aguel, Fernando; Almond, Christopher; Dubin, Anne M; Elia, Josephine; Finkle, John; Hausner, Elizabeth A; Joseph, Francesca; Karkowsky, Abraham M; Killeen, Matthew; Lemacks, Jodi; Mathis, Lisa; McMahon, Ann W; Pinnow, Ellen; Rodriguez, Ignacio; Stockbridge, Norman L; Stockwell, Margaret; Tassinari, Melissa; Krucoff, Mitchell W

2012-10-01

Development of pediatric medications and devices is complicated by differences in pediatric physiology and pathophysiology (both compared with adults and within the pediatric age range), small patient populations, and practical and ethical challenges to designing clinical trials. This article summarizes the discussions that occurred at a Cardiac Safety Research Consortium-sponsored Think Tank convened on December 10, 2010, where members from academia, industry, and regulatory agencies discussed important issues regarding pediatric cardiovascular safety of medications and cardiovascular devices. Pediatric drug and device development may use adult data but often requires additional preclinical and clinical testing to characterize effects on cardiac function and development. Challenges in preclinical trials include identifying appropriate animal models, clinically relevant efficacy end points, and methods to monitor cardiovascular safety. Pediatric clinical trials have different ethical concerns from adult trials, including consideration of the subjects' families. Clinical trial design in pediatrics should assess risks and benefits as well as incorporate input from families. Postmarketing surveillance, mandated by federal law, plays an important role in both drug and device safety assessment and becomes crucial in the pediatric population because of the limitations of premarketing pediatric studies. Solutions for this wide array of issues will require collaboration between academia, industry, and government as well as creativity in pediatric study design. Formation of various epidemiologic tools including registries to describe outcomes of pediatric cardiac disease and its treatment as well as cardiac effects of noncardiovascular medications, should inform preclinical and clinical development and improve benefit-risk assessments for the patients. The discussions in this article summarize areas of emerging consensus and other areas in which consensus remains elusive and provide suggestions for additional research to further our knowledge and understanding of this topic. Copyright © 2012 Mosby, Inc. All rights reserved.

Sleeping beauties in pediatrics.

PubMed

Završnik, Jernej; Kokol, Peter

2016-10-01

Sleeping beauties (SBs) in science have been known for few decades; however, it seems that only recently have they become popular. An SB is a publication that "sleeps" for a long time and then almost suddenly awakes and becomes highly cited. SBs present interesting findings in science. Pediatrics research literature has not yet been analyzed for their presence, and 5 pediatrics SBs were discovered in this research. Their prevalence was approximately 0.011%. Some environments or periods are more "SB fertile" than others: 3 of 5 SBs were published in the journal Pediatrics, 4 originated from the United States, and 4 were published in the period from 1992 to 1993. No institutions or authors published more than 1 SB.

Genome-Level Longitudinal Expression of Signaling Pathways and Gene Networks in Pediatric Septic Shock

PubMed Central

Shanley, Thomas P; Cvijanovich, Natalie; Lin, Richard; Allen, Geoffrey L; Thomas, Neal J; Doctor, Allan; Kalyanaraman, Meena; Tofil, Nancy M; Penfil, Scott; Monaco, Marie; Odoms, Kelli; Barnes, Michael; Sakthivel, Bhuvaneswari; Aronow, Bruce J; Wong, Hector R

2007-01-01

We have conducted longitudinal studies focused on the expression profiles of signaling pathways and gene networks in children with septic shock. Genome-level expression profiles were generated from whole blood-derived RNA of children with septic shock (n = 30) corresponding to day one and day three of septic shock, respectively. Based on sequential statistical and expression filters, day one and day three of septic shock were characterized by differential regulation of 2,142 and 2,504 gene probes, respectively, relative to controls (n = 15). Venn analysis demonstrated 239 unique genes in the day one dataset, 598 unique genes in the day three dataset, and 1,906 genes common to both datasets. Functional analyses demonstrated time-dependent, differential regulation of genes involved in multiple signaling pathways and gene networks primarily related to immunity and inflammation. Notably, multiple and distinct gene networks involving T cell- and MHC antigen-related biology were persistently downregulated on both day one and day three. Further analyses demonstrated large scale, persistent downregulation of genes corresponding to functional annotations related to zinc homeostasis. These data represent the largest reported cohort of patients with septic shock subjected to longitudinal genome-level expression profiling. The data further advance our genome-level understanding of pediatric septic shock and support novel hypotheses. PMID:17932561

76 FR 21381 - Pediatric Advisory Committee; Notice of Meeting

Federal Register 2010, 2011, 2012, 2013, 2014

2011-04-15

... Committee will meet to discuss pediatric-focused safety reviews, as mandated by the Best Pharmaceuticals for Children Act (Pub. L. 107-109) and the Pediatric Research Equity Act (Pub. L. 110-85) for Bepreve...), Actonel (risedronate), Hiberix [Haemophilus b Conjugate Vaccine (Tetanus Toxoid Conjugate)], and Valcyte...

Sparse brain network using penalized linear regression

NASA Astrophysics Data System (ADS)

Lee, Hyekyoung; Lee, Dong Soo; Kang, Hyejin; Kim, Boong-Nyun; Chung, Moo K.

2011-03-01

Sparse partial correlation is a useful connectivity measure for brain networks when it is difficult to compute the exact partial correlation in the small-n large-p setting. In this paper, we formulate the problem of estimating partial correlation as a sparse linear regression with a l1-norm penalty. The method is applied to brain network consisting of parcellated regions of interest (ROIs), which are obtained from FDG-PET images of the autism spectrum disorder (ASD) children and the pediatric control (PedCon) subjects. To validate the results, we check their reproducibilities of the obtained brain networks by the leave-one-out cross validation and compare the clustered structures derived from the brain networks of ASD and PedCon.

An electronic delphi study to establish pediatric intensive care nursing research priorities in twenty European countries*.

PubMed

Tume, Lyvonne N; van den Hoogen, Agnes; Wielenga, Joke M; Latour, Jos M

2014-06-01

To identify and to establish research priorities for pediatric intensive care nursing science across Europe. A modified three-round electronic Delphi technique was applied. Questionnaires were translated into seven different languages. European PICUs. The participants included pediatric intensive care clinical nurses, managers, educators, and researchers. In round 1, the qualitative responses were analyzed by content analysis and a list of research statements and domains was generated. In rounds 2 and 3, the statements were ranked on a scale of one to six (not important to most important). Mean scores and SDs were calculated for rounds 2 and 3. None. Round 1 started with 90 participants, with round 3 completed by 64 (71%). The seven highest ranking statements (≥ 5.0 mean score) were related to end-of-life care, decision making around forgoing and sustaining treatment, prevention of pain, education and competencies for pediatric intensive care nurses, reducing healthcare-associated infections, identifying appropriate nurse staffing levels, and implementing evidence into nursing practice. Nine research domains were prioritized, and these were as follows: 1) clinical nursing care practices, 2) pain and sedation, 3) quality and safety, 4) respiratory and mechanical ventilation, 5) child- and family-centered care, 6) ethics, 7) professional issues in nursing, 8) hemodynamcis and resuscitation, and 9) trauma and neurocritical care. The results of this study inform the European Society of Pediatric and Neonatal Intensive Care's nursing research agenda in the future. The results allow nurse researchers within Europe to encourage collaborative initiatives for nursing research.

The Unique Role of the Pediatric Clinical Research Nurse in Anesthesia: An Interdisciplinary Collaboration.

PubMed

Dube, Christine; Young, Vanessa; Anderson, Michelle; Barton, Brenda; Leahy, Izabela

2017-08-01

This article describes the distinctive function of the pediatric clinical research nurse (CRN) in the anesthesia setting. The pediatric CRN in anesthesia acts as a liaison between families and the research team and is the major nexus between the principal investigator or anesthesiologist on a study, and the collaborating surgeons from many different departments. This is unique because the CRNs collaborate with physicians in specialties that can include plastics, urology, neurosurgery, orthopaedics, otolaryngology, cardiology, critical care, and many other departments. The profession requires a breath of knowledge ranging from clinical understanding of diseases, surgical procedures, and recovery to cognitive and developmental stages, to expertise in the research protocol process. Our objective was to describe these specialized activities of the pediatric anesthesia CRN, with focus on care coordination, communication, and continuity of care. Defining this role will enhance the quality of clinical research conducted by the CRN in anesthesia and may influence the development of novel medical treatments. Copyright © 2016 American Society of PeriAnesthesia Nurses. Published by Elsevier Inc. All rights reserved.

Commentary: Writing and Evaluating Qualitative Research Reports.

PubMed

Wu, Yelena P; Thompson, Deborah; Aroian, Karen J; McQuaid, Elizabeth L; Deatrick, Janet A

2016-06-01

To provide an overview of qualitative methods, particularly for reviewers and authors who may be less familiar with qualitative research. A question and answer format is used to address considerations for writing and evaluating qualitative research. When producing qualitative research, individuals are encouraged to address the qualitative research considerations raised and to explicitly identify the systematic strategies used to ensure rigor in study design and methods, analysis, and presentation of findings. Increasing capacity for review and publication of qualitative research within pediatric psychology will advance the field's ability to gain a better understanding of the specific needs of pediatric populations, tailor interventions more effectively, and promote optimal health. © The Author 2016. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Urine Culture Follow-up and Antimicrobial Stewardship in a Pediatric Urgent Care Network.

PubMed

Saha, Dipanwita; Patel, Jimisha; Buckingham, Don; Thornton, David; Barber, Terry; Watson, Joshua R

2017-04-01

Empiric antibiotic therapy for presumed urinary tract infection (UTI) leads to unnecessary antibiotic exposure in many children whose urine culture results fail to confirm the diagnosis. The objective of this quality improvement study was to improve follow-up management of negative urine culture results in the off-campus urgent care network of Nationwide Children's Hospital to reduce inappropriate antibiotic exposure in children. A multidisciplinary task force developed and implemented a protocol for routine nurse and clinician follow-up of urine culture results, discontinuation of unnecessary antibiotics, and documentation in the electronic medical record. Monthly antibiotic discontinuation rates were tracked in empirically treated patients with negative urine culture results from July 2013 through December 2015. Statistical process control methods were used to track improvement over time. Fourteen-day return visits for UTIs were monitored as a balancing measure. During the study period, 910 patients received empiric antibiotic therapy for UTIs but had a negative urine culture result. The antibiotic discontinuation rate increased from 4% to 84%, avoiding 3429 (40%) of 8648 antibiotic days prescribed. Among patients with discontinued antibiotics, none was diagnosed with a UTI within 14 days of the initial urgent care encounter. Implementation of a standard protocol for urine culture follow-up and discontinuation of unnecessary antibiotics was both effective and safe in a high-volume pediatric urgent care network. Urine culture follow-up management is an essential opportunity for improved antimicrobial stewardship in the outpatient setting that will affect many patients by avoiding a substantial number of antibiotic days. Copyright © 2017 by the American Academy of Pediatrics.

Approach to Membranous Lupus Nephritis: A Survey of Pediatric Nephrologists and Pediatric Rheumatologists.

PubMed

Boneparth, Alexis; Radhakrishna, Suhas M; Greenbaum, Larry A; Yen, Eric; Okamura, Daryl M; Cooper, Jennifer C; Mason, Sherene; Levy, Deborah M; Sule, Sangeeta D; Jensen, Paul T; Yildirim-Toruner, Cagri; Ardoin, Stacy P; Wenderfer, Scott E

2017-11-01

To describe treatment practices for childhood pure membranous lupus nephritis (MLN). Survey study of Childhood Arthritis and Rheumatology Research Alliance and American Society of Pediatric Nephrology members. There were 117 respondents who completed the survey (60 pediatric nephrologists, 57 pediatric rheumatologists). Steroids and nonsteroid immunosuppression (NSI) were routinely used by the majority for MLN. Mycophenolate mofetil was the favored initial NSI. Nephrologists used steroids (60% vs 93%) and NSI (53% vs 87%) less often than did rheumatologists for MLN without nephrotic syndrome (NS). Pediatric rheumatologists and nephrologists both recommend steroids and NSI for children with MLN, with or without NS.

Screening and Identification in Pediatric Primary Care

ERIC Educational Resources Information Center

Simonian, Susan J.

2006-01-01

This article reviews issues related to behavioral screening in pediatric primary care settings. Structural-organizational issues affecting the use of pediatric primary care screening are discussed. This study also reviewed selected screening instruments that have utility for use in the primary care setting. Clinical and research issues related to…

Child and Adolescent Psychopharmacology in the New Millennium: A Workshop for Academia, Industry, and Government

ERIC Educational Resources Information Center

Deveaugh-Geiss, Joseph; March, John; Shapiro, Mark; Andreason, Paul J.; Emslie, Graham; Ford, Lisa M.; Greenhill, Laurence; Murphy, Dianne; Prentice, Ernest; Roberts, Rosemary; Silva, Susan; Swanson, James M.; van Zwieten-Boot, Barbara; Vitiello, Benedetto; Wagner, Karen Dineen; Mangum, Barry

2006-01-01

Objective: To give academic researchers, government officials, and industry scientists an opportunity to assess the state of pediatric psychopharmacology and identify challenges facing professionals in the field. Method: Increased federal spending and the introduction of pediatric exclusivity led to large increases in pediatric psychopharmacology…

The outcomes of children with pediatric acute respiratory distress syndrome: proceedings from the Pediatric Acute Lung Injury Consensus Conference.

PubMed

Quasney, Michael W; López-Fernández, Yolanda M; Santschi, Miriam; Watson, R Scott

2015-06-01

To provide additional details and evidence behind the recommendations for outcomes assessment of patients with pediatric acute respiratory distress syndrome from the Pediatric Acute Lung Injury Consensus Conference. Consensus conference of experts in pediatric acute lung injury. A panel of 27 experts met over the course of 2 years to develop a taxonomy to define pediatric acute respiratory distress syndrome and to make recommendations regarding treatment and research priorities. The outcomes subgroup comprised four experts. When published data were lacking, a modified Delphi approach emphasizing strong professional agreement was used. The Pediatric Acute Lung Injury Consensus Conference experts developed and voted on a total of 151 recommendations addressing the topics related to pediatric acute respiratory distress syndrome, seven of which related to outcomes after pediatric acute respiratory distress syndrome. All seven recommendations had strong agreement. Children with acute respiratory distress syndrome continue to have a high mortality, specifically, in relation to certain comorbidities and etiologies related to pediatric acute respiratory distress syndrome. Comorbid conditions, such as an immunocompromised state, increase the risk of mortality even further. Likewise, certain etiologies, such as non-pulmonary sepsis, also place children at a higher risk of mortality. Significant long-term effects were reported in adult survivors of acute respiratory distress syndrome: diminished lung function and exercise tolerance, reduced quality of life, and diminished neurocognitive function. Little knowledge of long-term outcomes exists in children who survive pediatric acute respiratory distress syndrome. Characterization of the longer term consequences of pediatric acute respiratory distress syndrome in children is vital to help identify opportunities for improved therapeutic and rehabilitative strategies that will lessen the long-term burden of pediatric acute respiratory distress syndrome and improve the quality of life in children. The Consensus Conference developed pediatric-specific recommendations for pediatric acute respiratory distress syndrome regarding outcome measures and future research priorities. These recommendations are intended to promote optimization and consistency of care for children with pediatric acute respiratory distress syndrome and identify areas of uncertainty requiring further investigation.

[Advances in the research of pressure therapy for pediatric burn patients with facial scar].

PubMed

Wei, Y T; Fu, J F; Li-Tsang, Z H P

2017-05-20

Facial scar and deformation caused by burn injury severely affect physical and psychological well-being of pediatric burn patients, which needs medical workers and pediatric burn patients' family members to pay much attention to and to perform early rehabilitation treatment. Pressure therapy is an important rehabilitative strategy for pediatric burn patients with facial scar, mainly including wearing headgears and transparent pressure facemasks, which have their own features. To achieve better treatment results, pressure therapy should be chosen according to specific condition of pediatric burn patients and combined with other assistant therapies. Successful rehabilitation for pediatric burn patients relies on cooperation of both family members of pediatric burn patients and society. Rehabilitation knowledge should be provided to parents of pediatric burn patients to acquire their full support and cooperation in order to achieve best therapeutic effects and ultimately to rebuild physical and psychological well-being of pediatric burn patients.

Developing and modifying behavioral coding schemes in pediatric psychology: a practical guide.

PubMed

Chorney, Jill MacLaren; McMurtry, C Meghan; Chambers, Christine T; Bakeman, Roger

2015-01-01

To provide a concise and practical guide to the development, modification, and use of behavioral coding schemes for observational data in pediatric psychology. This article provides a review of relevant literature and experience in developing and refining behavioral coding schemes. A step-by-step guide to developing and/or modifying behavioral coding schemes is provided. Major steps include refining a research question, developing or refining the coding manual, piloting and refining the coding manual, and implementing the coding scheme. Major tasks within each step are discussed, and pediatric psychology examples are provided throughout. Behavioral coding can be a complex and time-intensive process, but the approach is invaluable in allowing researchers to address clinically relevant research questions in ways that would not otherwise be possible. © The Author 2014. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

[Treatment of the child and adolescent with type 1 diabetes: special paediatric diabetes units].

PubMed

Hermoso López, F; Barrio Castellanos, R; Garcia Cuartero, B; Gómez Gila, A; González Casado, I; Oyarzabal Irigoyen, M; Rica Etxebarria, I; Rodríguez-Rigual, M; Torres Lacruz, M

2013-05-01

Intensive treatment of type 1 diabetes mellitus (DM1) delays and slows down the progression of chronic diabetes complications (DCCT 1993). This type of treatment in children and adolescents with DM1 has a different complexity to other stages of life and therefore, needs specialized care units. Various documents and declarations of diabetic patient's rights are evaluated, and the need for an adequate health care is emphasized. In the last decade, several projects have been developed in Europe to create a benchmark treatment of pediatric diabetes, with the aim of establishing hospitals with highly qualified healthcare to control it. The Diabetes Working Group of the Spanish Society for Pediatric Endocrinology (SEEP) has prepared this document in order to obtain a national consensus for the care of children and adolescents with type 1 diabetes in specialist Pediatric Diabetes Units, and at the same time advise Health Care Administrators to establish a national healthcare network for children and adolescents with diabetes mellitus, and organize comprehensive pediatric diabetes care units in hospitals with a reference level in quality of care. Copyright © 2012 Asociación Española de Pediatría. Published by Elsevier Espana. All rights reserved.

Childrens' health, community networks, and the NII: making the connections

NASA Astrophysics Data System (ADS)

Deutsch, Larry; Bronzino, Joseph D.; Farmer, Samuel J.

1996-02-01

To provide quality health care, clinicians need to be well informed. For health care to be cost effective and efficient, redundant services must be eliminated. Urban centers and rural areas need regional health information networks to ensure that primary health care is delivered with good continuity and coordination among providers. This paper describes the development of a city-wide computer-based pediatric health care network to improve decision-making and follow-through, and to provide aggregate data for public health purposes. The design criteria and process for this regional system are presented, addressing issues of network architecture, establishment of a uniform data base, and confidentiality.

Pediatric Sepsis

PubMed Central

Mathias, Brittany; Mira, Juan; Larson, Shawn D.

2016-01-01

Purpose of Review Sepsis is the leading cause of pediatric death worldwide. In the United States alone, there are 72,000 children hospitalized for sepsis annually with a reported mortality rate of 25% and an economic cost estimated to be $4.8 billion. However, it is only recently that the definition and management of pediatric sepsis has been recognized as being distinct from adult sepsis. Recent Findings The definition of pediatric sepsis is currently in a state of evolution and there is a large disconnect between the clinical and research definitions of sepsis which impacts the application of research findings into clinical practice. Despite this, it is the speed of diagnosis and the timely implementation of current treatment guidelines that has been shown to improve outcomes. However, adherence to treatment guidelines is currently low and it is only through the implementation of protocols that improved care and outcomes have been demonstrated. Summary Current management of pediatric sepsis is largely based on adaptations from adult sepsis treatment; however, distinct physiology demands more prospective pediatric trials to tailor management to the pediatric population. Adherence to current and emerging practice guidelines will require that protocolized care pathways become commonplace. PMID:26983000

Advances in Pediatric Pharmacology, Therapeutics, and Toxicology

PubMed Central

Wang, Laura A.; Cohen-Wolkowiez, Michael; Gonzalez, Daniel

2016-01-01

In the United States, the Best Pharmaceuticals for Children Act and the Pediatric Research Equity Act continue to promote clinical trials in pediatric populations across all age ranges. In 2014 and 2015, over 70 changes were made to drug labels with updates on information regarding pediatric populations. Additionally, multiple new therapies have received first-approvals for the treatment of pediatric indications ranging form rare genetic metabolic diseases to oncology. In the European Union, there have been more than 30 new authorizations for medicines used in children and 130 approved pediatric investigation plans. Despite the progress that has been made over the last two years, much work remains to further the development of safe and effective therapies for pediatric patients. PMID:27426903

Visitor restriction policies and practices in children's hospitals in North America: results of an Emerging Infections Network Survey.

PubMed

Pong, Alice L; Beekmann, Susan E; Faltamo, Mekleet M; Polgreen, Philip M; Shane, Andi L

2018-06-21

To delineate the timing of, indications for, and assessment of visitor restriction policies and practices (VRPP) in pediatric facilities. An electronic survey to characterize VRPP in pediatric healthcare facilities. The Infectious Diseases Society of America Emerging Infections Network surveyed 334 pediatric infectious disease consultants via an electronic link. Descriptive analyses were performed. A total of 170 eligible respondents completed a survey between 12 July and August 15, 2016, for a 51% response rate. Of the 104 respondents (61%) familiar with their VRPP, 92 (88%) had VRPP in all inpatient units. The respondents reported age-based VRPP (74%) symptom-based VRPP (97%), and outbreak-specific VRPP (75%). Symptom-based VRPP were reported to be seasonal by 24% of respondents and to be implemented year-round according to 70% of respondents. According to the respondents, communication of VRPP to families occurred at admission (87%) and through signage in care areas (64%), while communication of VRPP to staff occurred by email (77%), by meetings (55%), and by signage in staff-only areas (49%). Respondents reported that enforcement of VRPP was the responsibility of nursing (80%), registration clerks (58%), unit clerks (53%), the infection prevention team (31%), or clinicians 16 (16%). They also reported that the effectiveness of VRPP was assessed through active surveillance of hospital acquired respiratory infections (62%), through active surveillance of healthcare worker exposures (28%) and through patient/family satisfaction assessments (29%). Visitor restriction policies and practices vary in scope, implementation, enforcement, and physician awareness in pediatric facilities. A prospective multisite evaluation of outcomes would facilitate the adoption of uniform guidance.

Considerations for conducting qualitative research with pediatric patients for the purpose of PRO development.

PubMed

Patel, Zabin S; Jensen, Sally E; Lai, Jin-Shei

2016-09-01

To provide an overview of methodological considerations when conducting qualitative research with pediatric patients for the purpose of patient-reported outcome measure development A literature review of qualitative methods in pediatric measure development was completed. Eight clinicians providing care to pediatric patients were interviewed for their expert input. Thematic analysis of the literature and clinician interviews was used to identify themes for consideration. Findings from the literature and expert interviews emphasized the way in which cognitive, linguistic, and social developmental factors affect pediatric patients' understanding of their condition and ability to communicate about their experiences in an interview. There was consensus among the experts that traditional semi-structured interviews with children younger than eight lack characteristics necessary to yield meaningful information about condition and symptom report because they may fail to capture children's understanding and awareness of their condition and may limit their ability to express themselves comfortably. Our findings include recommended strategies to optimize data collected in qualitative interviews with pediatric patients, including modifications to the interview process to establish rapport, construction of interview questions to ensure they are developmentally appropriate, and the use of supplementary techniques to facilitate communication. When employing qualitative methods in pediatric measure development, interview guides, methods, and length require careful tailoring to ensure the child's perspectives are captured. This may be best achieved through research performed with narrow age bands that employs flexibility in methods to allow children a comfortable way in which to communicate about their experiences.

Pediatric surgical capacity building - a pathway to improving access to pediatric surgical care in Haiti.

PubMed

Kaseje, Neema; Jenny, Hillary; Jeudy, Andre Patrick; MacLee, Jean Louis; Meara, John G; Ford, Henri R

2018-02-01

Lack of human resources is a major barrier to accessing pediatric surgical care globally. Our aim was to establish a model for pediatric surgical training of general surgery residents in a resource constrained region. A pediatric surgical program with a pediatric surgical rotation for general surgery residents in a tertiary hospital in Haiti in 2015 was established. We conducted twice daily patient rounds, ran an outpatient clinic, and provided emergent and elective pediatric surgical care, with tasks progressively given to residents until they could run clinic and perform the most common elective and emergent procedures. We conducted baseline and post-intervention knowledge exams and dedicated 1 day a week to teaching and research activities. We measured the following outcomes: number of residents that completed the rotation, mean pre and post intervention test scores, patient volume in clinic and operating room, postoperative outcomes, resident ability to perform most common elective and emergent procedures, and resident participation in research. Nine out of 9 residents completed the rotation; 987 patients were seen in outpatient clinic, and 564 procedures were performed in children <15years old. There was a 50% increase in volume of pediatric cases and a 100% increase in procedures performed in children <4years old. Postoperative outcomes were: 0% mortality for elective cases and 18% mortality for emergent cases, 3% complication rate for elective cases and 6% complication rate for emergent cases. Outcomes did not change with increased responsibility given to residents. All senior residents (n=4) could perform the most common elective and emergent procedures without changes in mortality and complication rates. Increases in mean pre and post intervention test scores were 12% (PGY1), 24% (PGY2), and 10% (PGY3). 75% of senior residents participated in research activities as first or second authors. Establishing a program in pediatric surgery with capacity building of general surgery residents for pediatric surgical care provision is feasible in a resource constrained setting without negative effects on patient outcomes. This model can be applied in other resource constrained settings to increase human resources for global pediatric surgical care provision. III. Copyright © 2017 Elsevier Inc. All rights reserved.

The Geek Perspective: Answering the Call for Advanced Technology in Research Inquiry Related to Pediatric Brain Injury and Motor Disability.

PubMed

Wininger, Michael; Pidcoe, Peter

2017-10-01

The Academy of Pediatric Physical Therapy Research Summit IV issued a Call to Action for community-wide intensification of a research enterprise in inquiries related to pediatric brain injury and motor disability by way of technological integration. But the barriers can seem high, and the pathways to integrative clinical research can seem poorly marked. Here, we answer the Call by providing framework to 3 objectives: (1) instrumentation, (2) biometrics and study design, and (3) data analytics. We identify emergent cases where this Call has been answered and advocate for others to echo the Call both in highly visible physical therapy venues and in forums where the audience is diverse.

Aacap 2002 Research Forum: Placebo and Alternatives to Placebo in Randomized Controlled Trials in Pediatric Psychopharmacology

ERIC Educational Resources Information Center

March, John; Kratochvil, Christopher; Clarke, Gregory; Beardslee, William; Derivan, Albert; Emslie, Graham; Green, Evelyn P.; Heiligenstein, John; Hinshaw, Stephen; Hoagwood, Kimberly; Jensen, Peter; Lavori, Philip; Leonard, Henrietta; McNulty, James; Michaels, M. Alex; Mossholder, Andrew; Osher, Trina; Petti, Theodore; Prentice, Ernest; Vitiello, Benedetto; Wells, Karen

2004-01-01

Objective: The use of placebo in the pediatric age group has come under increasing scrutiny. At the 2002 Annual Meeting of the American Academy of Child and Adolescent Psychiatry, the Academy's Workgroup on Research conducted a research forum. The purpose was to identify challenges and their solutions regarding the use of placebo in randomized…

An epidemiologic survey of pediatric sepsis in regional hospitals in China.

PubMed

Wang, Yuanyuan; Sun, Bo; Yue, Hongni; Lin, Xiaofei; Li, Bing; Yang, Xiaochun; Shan, Chunming; Fan, Yujin; Dong, Maotian; Zhang, Yixing; Lin, Wenlong; Zuo, Xiaofeng; Su, Ping; Heng, Yongbo; Xu, Jinzhong; Kissoon, Niranjan

2014-11-01

To determine the prevalence, treatment, and outcomes of sepsis at regional hospitals in Huai'an, Jiangsu, China. Prospective data registry using a descriptive clinical epidemiologic approach through a collaborative network. Pediatric departments in 11 regional city and county referral hospitals serving 843,000 children (exclusive of neonates). All admissions (n = 27,836) of patients from 28 days to 15 years old from September 1, 2010, to August 31, 2011. None. A total of 1,530 patients met the 2005 international consensus definition of sepsis, corresponding to an estimated incidence of 181/100,000 children, with 80% under 5 years old, and in 10% (153), severe sepsis or septic shock developed. The overall case fatality rate for sepsis was 3.5% (53/1,530) or 34.6% (53/153) in those in whom severe sepsis or septic shock developed. Treatment varied widely and in many instances did not conform to international guidelines as reflected by inadequate use of antibiotics, corticosteroids, vasoactive agents, and inotropes. We first report the prevalence and outcome of pediatric sepsis based on a regional hospital network in China. The diverse treatment approaches and practice at low-level clinics suggest the need for clinical implementation of internationally recognized strategy to improve the care standard in resource-limited regional hospitals.

Brain structural covariance network centrality in maltreated youth with PTSD and in maltreated youth resilient to PTSD.

PubMed

Sun, Delin; Haswell, Courtney C; Morey, Rajendra A; De Bellis, Michael D

2018-04-10

Child maltreatment is a major cause of pediatric posttraumatic stress disorder (PTSD). Previous studies have not investigated potential differences in network architecture in maltreated youth with PTSD and those resilient to PTSD. High-resolution magnetic resonance imaging brain scans at 3 T were completed in maltreated youth with PTSD (n = 31), without PTSD (n = 32), and nonmaltreated controls (n = 57). Structural covariance network architecture was derived from between-subject intraregional correlations in measures of cortical thickness in 148 cortical regions (nodes). Interregional positive partial correlations controlling for demographic variables were assessed, and those correlations that exceeded specified thresholds constituted connections in cortical brain networks. Four measures of network centrality characterized topology, and the importance of cortical regions (nodes) within the network architecture were calculated for each group. Permutation testing and principle component analysis method were employed to calculate between-group differences. Principle component analysis is a methodological improvement to methods used in previous brain structural covariance network studies. Differences in centrality were observed between groups. Larger centrality was found in maltreated youth with PTSD in the right posterior cingulate cortex; smaller centrality was detected in the right inferior frontal cortex compared to youth resilient to PTSD and controls, demonstrating network characteristics unique to pediatric maltreatment-related PTSD. Larger centrality was detected in right frontal pole in maltreated youth resilient to PTSD compared to youth with PTSD and controls, demonstrating structural covariance network differences in youth resilience to PTSD following maltreatment. Smaller centrality was found in the left posterior cingulate cortex and in the right inferior frontal cortex in maltreated youth compared to controls, demonstrating attributes of structural covariance network topology that is unique to experiencing maltreatment. This work is the first to identify cortical thickness-based structural covariance network differences between maltreated youth with and without PTSD. We demonstrated network differences in both networks unique to maltreated youth with PTSD and those resilient to PTSD. The networks identified are important for the successful attainment of age-appropriate social cognition, attention, emotional processing, and inhibitory control. Our findings in maltreated youth with PTSD versus those without PTSD suggest vulnerability mechanisms for developing PTSD.

An environmental scan of academic pediatric emergency medicine at Canadian medical schools: Identifying variability across Canada.

PubMed

Artz, Jennifer D; Meckler, Garth; Argintaru, Niran; Lim, Roderick; Stiell, Ian G

2018-01-28

To complement our environmental scan of academic emergency medicine departments, we conducted a similar environmental scan of the academic pediatric emergency medicine programs offered by the Canadian medical schools. We developed an 88-question form, which was distributed to pediatric academic leaders at each medical school. The responses were validated via email to ensure that the questions were answered completely and consistently. Fourteen of the 17 Canadian medical schools have some type of pediatric emergency medicine academic program. None of the pediatric emergency medicine units have full departmental status, while nine are divisions, two are sections, and three have no status. Canadian academic pediatric emergency medicine is practised at 13 major teaching hospitals and one specialized pediatric emergency department. There are 394 pediatric emergency medicine faculty members, including 13 full professors and 64 associate professors. Eight sites regularly take pediatric undergraduate clinical clerks, and all 14 provide resident education. Fellowship training is offered at 10 sites, with five offering advanced pediatric emergency medicine fellowship training. Half of the sites have at least one physician with a Master's degree in education, totalling 18 faculty members across Canada. There are 31 clinical researchers with salary support at nine universities. Eleven sites have published peer-reviewed papers (n=423) in the past five years, ranging from two to 102 per site. Annual academic budgets range from $10,000 to $2,607,515. This comprehensive review of academic activities in pediatric emergency medicine across Canada identifies the variability across the country, including the recognition of sites above and below the national average, which may prompt change at individual sites. Sharing these academic practices may inspire sites to provide more support to teachers, educators, and researchers.

Pediatric trauma research in the Gulf Cooperation Council countries.

PubMed

Hefny, Ashraf F; Grivna, Michal; Abbas, Alaa K; Branicki, Frank J; Abu-Zidan, Fikri M

2012-04-01

To review published pediatric trauma research from the Gulf Cooperation Council (GCC) countries so as to identify research fields that need to be enhanced. A MEDLINE search for articles on pediatric trauma from GCC countries during the period 1960 to 2010 was performed. The content of articles was analyzed, classified and summarized. Fifty-three articles were found and retrieved of which 18 (34%) were published in the last 5 years, 42 (79.2%) were original articles. The first author was affiliated to a university in 29 reports (54.7%), to a community hospital in 13 (24.5%) and to a military hospital in 10 (18.9%). All articles were observational studies that included 18 (34%) case-control studies, 18 (34%) case reports/case series studies, 8 (15.1%) prospective studies, and 7 (13.2%) cross sectional studies. The median (range) impact factor of the journals was 1.3 (0.5-3.72). No meta-analysis studies were found. A strategic plan is required to support pediatric trauma research in GCC countries so as to address unmet needs. Areas of deficiency include pre-hospital care, post-traumatic psychological effects and post-traumatic rehabilitation, interventional studies focused on a safe child environment and attitude changes, and the socioeconomic impact of pediatric trauma. Copyright © 2012. Published by Elsevier B.V.

The Pediatric Diabetes Consortium: Improving care of children with Type 1 diabetes through collaborative research

USDA-ARS?s Scientific Manuscript database

Although there are some interactions between the major pediatric diabetes programs in the United States, there has been no formal, independent structure for collaboration, the sharing of information, and the development of joint research projects that utilize common outcome measures. To fill this un...

78 FR 13686 - Draft Guidance for Industry and Review Staff on Pediatric Information Incorporated Into Human...

Federal Register 2010, 2011, 2012, 2013, 2014

2013-02-28

... Prescription Drug and Biological Products Labeling; Availability AGENCY: Food and Drug Administration, HHS... (BPCA) and the Pediatric Research Equity Act (PREA), as amended by the Food and Drug Administration... Drug Information, Center for Drug Evaluation and Research, Food and Drug Administration, 10903 New...

Pediatric Terminology

Cancer.gov

The National Institute of Child Health and Human Development (NICHD) works with NCI Enterprise Vocabulary Services (EVS) to provide standardized terminology for coding pediatric clinical trials and other research activities.

Gender Differences in the Authorship of Original Research in Pediatric Journals, 2001-2016.

PubMed

Fishman, Michael; Williams, Wadsworth A; Goodman, Denise M; Ross, Lainie Friedman

2017-12-01

To examine the gender of authors of original research in 3 high-impact pediatric journals between 2001 and 2016, given the importance of publishing on academic promotion, and to compare authorship gender with the percentage of women on editorial boards and with academic faculty composition. We assessed the prevalence of female first and senior (last-listed) authorship of original research articles published in 3 pediatric-focused journals Pediatrics, JAMA Pediatrics (entitled Archives of Pediatric and Adolescent Medicine until 2013), and The Journal of Pediatrics. We also examined the gender breakdown of the main editors and the broader editorial boards of these journals. In addition, we examined whether junior female faculty co-authored with male or female senior faculty. Of 3895 original articles, 22 were excluded because the gender of either the first or senior author could not be determined from the name. An analysis of authorship by year showed increasing female representation across the selected journals in both first (39.8% in 2001, 57.7% in 2016) and senior (28.6% in 2001, 38.1% in 2016) authors, respectively. Editorial boards also showed increasing female representation (17.8% in 2001 to 39.8% in 2016). Junior female faculty were more likely to co-author with senior female women (female first and last author); the gap remained unchanged despite the increasing number of women entering pediatrics. Women are underrepresented as authors and editors, although the gap is closing. Junior women are less likely to co-author with senior men, which may be a disservice given current gender disparities in promotion and leadership. Copyright © 2017 Elsevier Inc. All rights reserved.

Childhood Arthritis and Rheumatology Research Alliance consensus treatment plans for juvenile idiopathic arthritis-associated and idiopathic chronic anterior uveitis.

PubMed

Angeles-Han, Sheila T; Lo, Mindy S; Henderson, Lauren A; Lerman, Melissa A; Abramson, Leslie; Cooper, Ashley M; Parsa, Miriam F; Zemel, Lawrence S; Ronis, Tova; Beukelman, Timothy; Cox, Erika; Sen, H Nida; Holland, Gary N; Brunner, Hermine I; Lasky, Andrew; Rabinovich, C Egla

2018-05-28

Systemic immunosuppressive treatment of pediatric chronic anterior uveitis (CAU), both juvenile idiopathic arthritis (JIA)-associated and idiopathic varies, making it difficult to identify best treatments. The Childhood Arthritis and Rheumatology Research Alliance (CARRA) developed consensus treatment plans (CTPs) for CAU for the purpose of reducing practice variability and allowing future comparison of treatments by comparative effectiveness analysis techniques. A core group of pediatric rheumatologists, ophthalmologists with uveitis expertise, and a lay advisor comprised the CARRA uveitis workgroup who performed literature review on pharmacologic treatments, held teleconferences, and developed a case-based survey administered to the CARRA membership to delineate treatment practices. We utilized 3 face-to-face consensus meetings using nominal group technique to develop CTPs. The survey identified areas of treatment practice variability. We developed 2 CTPs for the treatment of CAU, case definitions, and monitoring parameters. The first CTP is directed at children naïve to steroid-sparing medication, and the second at children initiating biologic therapy with options for methotrexate, adalimumab and infliximab. We defined a core dataset and outcome measures with data collection at 3 and 6 months after therapy initiation. The CARRA membership voted acceptance of the CTPs with a >95% (N = 233) approval. Using consensus methodology, two standardized CTPs were developed for systemic immunosuppressive treatment of CAU. These CTPs are not meant as treatment guidelines, but are designed for further pragmatic research within the CARRA research network. Use of these CTPs in a prospective comparison effectiveness study should improve outcomes by identifying best practice options. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.

Accountability and pediatric physician-researchers: are theoretical models compatible with Canadian lived experience?

PubMed

Czoli, Christine; Da Silva, Michael; Shaul, Randi Zlotnik; d'Agincourt-Canning, Lori; Simpson, Christy; Boydell, Katherine; Rashkovan, Natalie; Vanin, Sharon

2011-10-05

Physician-researchers are bound by professional obligations stemming from both the role of the physician and the role of the researcher. Currently, the dominant models for understanding the relationship between physician-researchers' clinical duties and research duties fit into three categories: the similarity position, the difference position and the middle ground. The law may be said to offer a fourth "model" that is independent from these three categories.These models frame the expectations placed upon physician-researchers by colleagues, regulators, patients and research participants. This paper examines the extent to which the data from semi-structured interviews with 30 physician-researchers at three major pediatric hospitals in Canada reflect these traditional models. It seeks to determine the extent to which existing models align with the described lived experience of the pediatric physician-researchers interviewed.Ultimately, we find that although some physician-researchers make references to something like the weak version of the similarity position, the pediatric-researchers interviewed in this study did not describe their dual roles in a way that tightly mirrors any of the existing theoretical frameworks. We thus conclude that either physician-researchers are in need of better training regarding the nature of the accountability relationships that flow from their dual roles or that models setting out these roles and relationships must be altered to better reflect what we can reasonably expect of physician-researchers in a real-world environment. © 2011 Czoli et al; licensee BioMed Central Ltd.

Brain Network Architecture and Global Intelligence in Children with Focal Epilepsy.

PubMed

Paldino, M J; Golriz, F; Chapieski, M L; Zhang, W; Chu, Z D

2017-02-01

The biologic basis for intelligence rests to a large degree on the capacity for efficient integration of information across the cerebral network. We aimed to measure the relationship between network architecture and intelligence in the pediatric, epileptic brain. Patients were retrospectively identified with the following: 1) focal epilepsy; 2) brain MR imaging at 3T, including resting-state functional MR imaging; and 3) full-scale intelligence quotient measured by a pediatric neuropsychologist. The cerebral cortex was parcellated into approximately 700 gray matter network "nodes." The strength of a connection between 2 nodes was defined by the correlation between their blood oxygen level-dependent time-series. We calculated the following topologic properties: clustering coefficient, transitivity, modularity, path length, and global efficiency. A machine learning algorithm was used to measure the independent contribution of each metric to the intelligence quotient after adjusting for all other metrics. Thirty patients met the criteria (4-18 years of age); 20 patients required anesthesia during MR imaging. After we accounted for age and sex, clustering coefficient and path length were independently associated with full-scale intelligence quotient. Neither motion parameters nor general anesthesia was an important variable with regard to accurate intelligence quotient prediction by the machine learning algorithm. A longer history of epilepsy was associated with shorter path lengths ( P = .008), consistent with reorganization of the network on the basis of seizures. Considering only patients receiving anesthesia during machine learning did not alter the patterns of network architecture contributing to global intelligence. These findings support the physiologic relevance of imaging-based metrics of network architecture in the pathologic, developing brain. © 2017 by American Journal of Neuroradiology.

Alterations of network synchrony after epileptic seizures: An analysis of post-ictal intracranial recordings in pediatric epilepsy patients.

PubMed

Tomlinson, Samuel B; Khambhati, Ankit N; Bermudez, Camilo; Kamens, Rebecca M; Heuer, Gregory G; Porter, Brenda E; Marsh, Eric D

2018-07-01

Post-ictal EEG alterations have been identified in studies of intracranial recordings, but the clinical significance of post-ictal EEG activity is undetermined. The purpose of this study was to examine the relationship between peri-ictal EEG activity, surgical outcome, and extent of seizure propagation in a sample of pediatric epilepsy patients. Intracranial EEG recordings were obtained from 19 patients (mean age = 11.4 years, range = 3-20 years) with 57 seizures used for analysis (mean = 3.0 seizures per patient). For each seizure, 3-min segments were extracted from adjacent pre-ictal and post-ictal epochs. To compare physiology of the epileptic network between epochs, we calculated the relative delta power (Δ) using discrete Fourier transformation and constructed functional networks based on broadband connectivity (conn). We investigated differences between the pre-ictal (Δ pre , conn pre ) and post-ictal (Δ post , conn post ) segments in focal-network (i.e., confined to seizure onset zone) versus distributed-network (i.e., diffuse ictal propagation) seizures. Distributed-network (DN) seizures exhibited increased post-ictal delta power and global EEG connectivity compared to focal-network (FN) seizures. Following DN seizures, patients with seizure-free outcomes exhibited a 14.7% mean increase in delta power and an 8.3% mean increase in global connectivity compared to pre-ictal baseline, which was dramatically less than values observed among seizure-persistent patients (29.6% and 47.1%, respectively). Post-ictal differences between DN and FN seizures correlate with post-operative seizure persistence. We hypothesize that post-ictal deactivation of subcortical nuclei recruited during seizure propagation may account for this result while lending insights into mechanisms of post-operative seizure recurrence. Copyright © 2018 Elsevier B.V. All rights reserved.

Pediatric cancer risk in association with birth defects: A systematic review

PubMed Central

Padda, Hannah; Feng, Qianxi; Partap, Sonia; Fowler, Susan A.; Druley, Todd E.

2017-01-01

Background Many epidemiological studies have examined associations between birth defects (BDs) and pediatric malignancy over the past several decades. Our objective was to conduct a systematic literature review of studies reporting on this association. Methods We used librarian-designed searches of the PubMed Medline and Embase databases to identify primary research articles on pediatric neoplasms and BDs. English language articles from PubMed and Embase up to 10/12/2015, and in PubMed up to 5/12/2017 following an updated search, were eligible for inclusion if they reported primary epidemiological research results on associations between BDs and pediatric malignancies. Two reviewers coded each article based on the title and abstract to identify eligible articles that were abstracted using a structured form. Additional articles were identified through reference lists and other sources. Results were synthesized for pediatric cancers overall and for nine major pediatric cancer subtypes. Results A total of 14,778 article citations were identified, of which 80 met inclusion criteria. Pediatric cancer risk was increased in most studies in association with BDs overall with some notable specific findings, including increased risks for CNS tumors in association with CNS abnormalities and positive associations between rib anomalies and several pediatric cancer types. Conclusions Some children born with BDs may be at increased risk for specific pediatric malignancy types. This work provides a foundation for future investigations that are needed to clarify specific BD types predisposing toward malignancy and possible underlying causes of both BDs and malignancy. PMID:28749971

Development of a Pediatric Adverse Events Terminology

PubMed Central

Gipson, Debbie S.; Kirkendall, Eric S.; Gumbs-Petty, Brenda; Quinn, Theresa; Steen, A.; Hicks, Amanda; McMahon, Ann; Nicholas, Savian; Zhao-Wong, Anna; Taylor-Zapata, Perdita; Turner, Mark; Herreshoff, Emily; Jones, Charlotte; Davis, Jonathan M.; Haber, Margaret; Hirschfeld, Steven

2017-01-01

In 2009, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) established the Pediatric Terminology Harmonization Initiative to establish a core library of terms to facilitate the acquisition and sharing of knowledge between pediatric clinical research, practice, and safety reporting. A coalition of partners established a Pediatric Terminology Adverse Event Working Group in 2013 to develop a specific terminology relevant to international pediatric adverse event (AE) reporting. Pediatric specialists with backgrounds in clinical care, research, safety reporting, or informatics, supported by biomedical terminology experts from the National Cancer Institute’s Enterprise Vocabulary Services participated. The multinational group developed a working definition of AEs and reviewed concepts (terms, synonyms, and definitions) from 16 pediatric clinical domains. The resulting AE terminology contains >1000 pediatric diseases, disorders, or clinical findings. The terms were tested for proof of concept use in 2 different settings: hospital readmissions and the NICU. The advantages of the AE terminology include ease of adoption due to integration with well-established and internationally accepted biomedical terminologies, a uniquely temporal focus on pediatric health and disease from conception through adolescence, and terms that could be used in both well- and underresourced environments. The AE terminology is available for use without restriction through the National Cancer Institute’s Enterprise Vocabulary Services and is fully compatible with, and represented in, the Medical Dictionary for Regulatory Activities. The terminology is intended to mature with use, user feedback, and optimization. PMID:28028203

A Systems Neuroscience Approach to the Pathophysiology of Pediatric Mood and Anxiety Disorders

PubMed Central

Leibenluft, Ellen; Brotman, Melissa A.

2015-01-01

Emotional dysregulation is a core feature of pediatric mood and anxiety disorders. Emerging evidence suggests that these disorders are mediated by abnormalities in the functions and structures of the developing brain. This chapter reviews recent behavioral and functional magnetic resonance imaging (fMRI) research on pediatric mood and anxiety disorders, focusing on the neural mechanisms underlying these disorders. Throughout the chapter, we highlight the relationship between neural and behavioral findings, and potential novel treatments. The chapter concludes with directions for future research. PMID:24281907

Food Allergy Educational Needs of Pediatric Dietitians: A Survey by the Consortium of Food Allergy Research

ERIC Educational Resources Information Center

Groetch, Marion E.; Christie, Lynn; Vargas, Perla A.; Jones, Stacie M.; Sicherer, Scott H.

2010-01-01

Objective: To determine pediatric dietitians' self-reported proficiency, educational needs, and preferences regarding food allergy (FA) management. Design and Setting: An Internet-based, anonymous survey was distributed to the Pediatric Nutrition Practice Group (PNPG) of the American Dietetic Association. Participants: Respondents (n = 311) were…

75 FR 54351 - Cell and Gene Therapy Clinical Trials in Pediatric Populations; Public Workshop

Federal Register 2010, 2011, 2012, 2013, 2014

2010-09-07

...] Cell and Gene Therapy Clinical Trials in Pediatric Populations; Public Workshop AGENCY: Food and Drug... Biologics Evaluation and Research (CBER) is announcing a public workshop entitled ``Cell and Gene Therapy... regarding best practices related to cell and gene therapy clinical trials in pediatric populations, as well...

Disorders of Sex Development: Pediatric Psychology and the Genital Exam.

PubMed

Tishelman, Amy C; Shumer, Daniel E; Nahata, Leena

2017-06-01

To provide suggestions for clinical care of youth with disorders of sex development (DSD) and their families, by drawing on preexisting pediatric psychology literature with a particular focus on child sexual abuse (CSA) genital exams. Relevant peer-reviewed papers published since 1990 in the CSA literature were systematically reviewed, as well as an illustrative sample of general pediatric psychology papers. Empirical research from the CSA literature provided information on prevalence of distress and the impact of provider behavior, the importance of preparation, and proposed interventions. Expert recommendations from CSA literature and general findings gleaned from pediatric psychology also address these issues. Psychological findings in the CSA pediatric population suggest that fears and anxieties are not universal and can be linked to a number of variables. Based on this review, we make a number of recommendations for potential interventions for youth with DSD and their families, emphasizing the need for further clinical research. © The Author 2016. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Children's Environmental Health Web Links

EPA Pesticide Factsheets

Get additional information from non-EPA sites on specialized pediatric research efforts, toxicant exposure and susceptibility, pediatric environmental medicine, prevention, public awareness, and the Global Plan of Action.

Designing a National Longitudinal Faculty Development Curriculum Focused on Educational Scholarship: Process, Outcomes, and Lessons Learned.

PubMed

Chandran, Latha; Gusic, Maryellen E; Lane, J Lindsey; Baldwin, Constance D

2017-01-01

Clinical educators at U.S. academic health centers are frequently disadvantaged in the academic promotion system, lacking needed faculty development, mentoring, and networking support. In 2006, we implemented the national Educational Scholars Program to offer faculty development in educational scholarship for early career educators in pediatrics. We aimed to provide them with skills, experience, and initial success in educational scholarship and dissemination. The 3-year curriculum is delivered in interactive sessions at the annual pediatric academic meetings and online intersession modules. Curriculum content progresses from educational scholarship and implementing scholarly projects to dissemination and professional networking. Intersession modules address project planning, building an educator portfolio, reviewing the literature, using technology, authorship, and peer review. Concurrently, all scholars must complete a mentored educational project and demonstrate national dissemination of a peer-reviewed product to obtain a Certificate of Excellence in Educational Scholarship. The setting of this study was a national, longitudinal, cohort-based faculty development program built within the Academic Pediatric Association, a 2,000-member professional organization. In 10 years, the Educational Scholars Program has enrolled 172 scholars in 8 cohorts; 94 have graduated so far. We describe how formative evaluation guided curriculum refinement and process improvement. Summative evaluations show that faculty and scholars were satisfied with the program. Participant outcomes from Cohort 1, assessed at Kirkpatrick's four levels of evaluation, demonstrate increases in scholarly productivity, leadership activities, and academic promotions. Curriculum building is a dynamic process of ongoing evaluation and modification. Our program benefited from designing an integrated and focused curriculum, developing educational principles to guide program improvements, creating curricular tools to help learners organize and document their efforts, supporting project-based learning with expert mentoring, and facilitating peer and faculty networking and collaboration. A national, longitudinal faculty development program can support growth in academic knowledge and skills, promote professional networking, and thereby enrich educators' career opportunities.

[The application of artificial neural network on the assessment of lexical tone production of pediatric cochlear implant users].

PubMed

Mao, Y T; Chen, Z M; Xu, L

2017-08-07

Objective: The present study was carried out to explore the tone production ability of the Mandarin-speaking children with cochlear implants (CI) by using an artificial neural network model and to examine the potential contributing factors underlining their tone production performance. The results of this study might provide useful guidelines for post-operative rehabilitation processes of pediatric CI users. Methods: Two hundred and seventy-eight prelingually deafened children who received unilateral CI participated in this study. As controls, 170 similarly-aged children with normal hearing (NH) were recruited. A total of 36 Chinese monosyllabic words were selected as the tone production targets. Vocal production samples were recorded and the fundamental frequency (F0) contour of each syllable was extracted using an auto-correlation algorithm followed by manual correction. An artificial neural network was created in MATLAB to classify the tone production. The relationships between tone production and several demographic factors were evaluated. Results: Pediatric CI users produced Mandarin tones much less accurately than did the NH children (58.8% vs. 91.5% correct). Tremendous variability in tone production performance existed among the CI children. Tones 2 and 3 were produced less accurately than tones 1 and 4 for both groups. For the CI group, all tones when in error tended to be judged as tone 1. The tone production accuracy was negatively correlated with age at implantation and positively correlated with CI use duration with correlation coefficients ( r ) of -0.215 ( P =0.003) and 0.203 ( P =0.005), respectively. Age was one of the determinants of tonal ability for NH children. Conclusions: For children with severe to profound hearing loss, early implantation and persistent use of CI are beneficial to their tone production development. Artificial neural network is a convenient and reliable assessment tool for the development of tonal ability of hearing-impaired children who are in the rehabilitation processes that focus on speech and language expression.

Child abuse training and knowledge: a national survey of emergency medicine, family medicine, and pediatric residents and program directors.

PubMed

Starling, Suzanne P; Heisler, Kurt W; Paulson, James F; Youmans, Eren

2009-04-01

The objective of this study was to determine the level of knowledge, comfort, and training related to the medical management of child abuse among pediatrics, emergency medicine, and family medicine residents. Surveys were administered to program directors and third-year residents at 67 residency programs. The resident survey included a 24-item quiz to assess knowledge regarding the medical management of physical and sexual child abuse. Sites were solicited from members of a network of child abuse physicians practicing at institutions with residency programs. Analyzable surveys were received from 53 program directors and 462 residents. Compared with emergency medicine and family medicine programs, pediatric programs were significantly larger and more likely to have a medical provider specializing in child abuse pediatrics, have faculty primarily responsible for child abuse training, use a written curriculum for child abuse training, and offer an elective rotation in child abuse. Exposure to child abuse training and abused patients was highest for pediatric residents and lowest for family medicine residents. Comfort with managing child abuse cases was lowest among family medicine residents. On the knowledge quiz, pediatric residents significantly outperformed emergency medicine and family medicine residents. Residents with high knowledge scores were significantly more likely to come from larger programs and programs that had a center, provider, or interdisciplinary team that specialized in child abuse pediatrics; had a physician on faculty responsible for child abuse training; used a written curriculum for child abuse training; and had a required rotation in child abuse pediatrics. By analyzing the relationship between program characteristics and residents' child abuse knowledge, we found that pediatric programs provide far more training and resources for child abuse education than emergency medicine and family medicine programs. As leaders, pediatricians must establish the importance of this topic in the pediatric education of residents of all specialties.

Haneen Shalabi receives The Children’s Cancer Foundation Next Gen Award | Center for Cancer Research

Cancer.gov

Haneen Shalabi, D.O., a Physician in the Pediatric Oncology Branch, received the 2017 Next Gen Award from the Children’s Cancer Foundation, Inc (CCF). As the highest award CCF presents to individual researchers, the Next Gen Award recognizes young investigators who are committed to pursuing a long-term career in pediatric oncology research. Read more... 

Health-related quality of life outcomes and level of evidence in pediatric neurosurgery.

PubMed

Hansen, Daniel; Vedantam, Aditya; Briceño, Valentina; Lam, Sandi K; Luerssen, Thomas G; Jea, Andrew

2016-10-01

OBJECTIVE The emphasis on health-related quality of life (HRQOL) outcomes is increasing, along with an emphasis on evidence-based medicine. However, there is a notable paucity of validated HRQOL instruments for the pediatric population. Furthermore, no standardization or consensus currently exists concerning which HRQOL outcome measures ought to be used in pediatric neurosurgery. The authors wished to identify HRQOL outcomes used in pediatric neurosurgery research over the past 10 years, their frequency, and usage trends. METHODS Three top pediatric neurosurgical journals were reviewed for the decade from 2005 to 2014 for clinical studies of pediatric neurosurgical procedures that report HRQOL outcomes. Similar studies in the peer-reviewed journal Pediatrics were also used as a benchmark. Publication year, level of evidence, and HRQOL outcomes were collected for each article. RESULTS A total of 31 HRQOL studies were published in the pediatric neurosurgical literature over the study period. By comparison, there were 55 such articles in Pediatrics. The number of publications using HRQOL instruments showed a significant positive trend over time for Pediatrics (B = 0.62, p = 0.02) but did not increase significantly over time for the 3 neurosurgical journals (B = 0.12, p = 0.5). The authors identified a total of 46 different HRQOL instruments used across all journals. Within the neurosurgical journals, the Hydrocephalus Outcome Questionnaire (HOQ) (24%) was the most frequently used, followed by the Health Utilities Index (HUI) (16%), the Pediatric Quality of Life Inventory (PedsQL) (12%), and the 36-Item Short Form Health Survey (SF-36) (12%). Of the 55 articles identified in Pediatrics, 22 (40%) used a version of the PedsQL. No neurosurgical study reached above Level 4 on the Oxford Centre for Evidence-Based Medicine (OCEBM) system. However, multiple studies from Pediatrics achieved OCEBM Level 3, several were categorized as Level 2, and one reached Level 1. CONCLUSIONS The frequency of studies using HRQOL outcomes in pediatric neurosurgical research has not increased over the past 10 years. Within pediatric neurosurgery, high-quality studies and standardization are lacking, as compared with contemporary studies in Pediatrics. In general, although the HOQ, HUI, PedsQL, and SF-36 instruments are emerging as standards in pediatric neurosurgery, even greater standardization across the specialty is needed, along with the design and implementation of more rigorous studies.

American Pediatric Society 2013 presidential address: 125th anniversary of the American Pediatric Society--lessons from the past to guide the future.

PubMed

Stoll, Barbara J

2013-10-01

This year is the 125th anniversary of the American Pediatric Society (APS), a time to reflect on the past 125 years of child health and child health research, a time to consider the health of America's children in a social and global context, and a time to consider the future. This paper is a combination of pediatric and APS history and personal story.

The Pediatric Patient-Centered Medical Home: Innovative models for improving behavioral health.

PubMed

Asarnow, Joan Rosenbaum; Kolko, David J; Miranda, Jeanne; Kazak, Anne E

2017-01-01

This article examines the concept of the Patient-Centered Medical Home (PCMH) as it applies to children and adolescents, emphasizing care for behavioral health conditions, the role of psychology and psychological science, and next steps for developing evidence-informed models for the Pediatric-PCMH. The PCMH concept for pediatric populations offers unique opportunities for psychological science to inform and enhance the transformation of the United States health care system and improve health in our nation. Available evidence on the outcomes of PCMH implementation for pediatric populations is limited, underscoring the need for additional research evaluating Pediatric-PCMH models and concepts. While behavioral health has only recently been emphasized as a formal part of the PCMH, accumulating evidence supports the effectiveness of some approaches for providing behavioral health care through pediatric primary care. These approaches suggest that a comprehensive Pediatric-PCMH model that includes behavioral health care has the potential to optimize the availability, quality, benefits, and cost-effectiveness of behavioral health services. This could ultimately enhance youth health and behavioral health, with effects potentially extending through the adult years. Rigorous research and demonstration projects are needed to guide further development of optimal strategies for improving health and behavioral health in pediatric populations and advancing the public health impact of behavioral health care services. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

The 2010 American Heart Association guidelines for cardiopulmonary resuscitation and emergency cardiac care: an overview of the changes to pediatric basic and advanced life support.

PubMed

Spencer, Becky; Chacko, Jisha; Sallee, Donna

2011-06-01

The American Heart Association (AHA) has a strong commitment to implementing scientific research-based interventions for cardiopulmonary resuscitation and emergency cardiovascular care. This article presents the 2010 AHA major guideline changes to pediatric basic life support (BLS) and pediatric advanced life support (PALS) and the rationale for the changes. The following topics are covered in this article: (1) current understanding of cardiac arrest in the pediatric population, (2) major changes in pediatric BLS, and (3) major changes in PALS. Copyright © 2011. Published by Elsevier Inc.

[From guidelines to practice: evaluation of the pediatric care provided by a service of secondary reference in the north of the State of Minas Gerais].

PubMed

Moreira, Laura Monteiro de Castro; Alves, Cláudia Regina Lindgren; Belisário, Soraya Almeida; Bueno, Mariana de Caux; de Moraes, Erica Furtado

2013-06-01

In the State of Minas Gerais, the Secondary Reference Viva Vida Centers (CVVRS) are one of the strategies deployed to tackle the problems in child health. This study sought to evaluate pediatric care provided in a CVVRS, using the guidelines defined when it was set up as a benchmark. A quantitative-qualitative approach was adopted, which included a cross-sectional study with stratified random sampling of 385 medical records of children registered with the program between 2007 and 2009, and analysis of focus groups with strategic actors of the initiative. There were divergences between the user profiles and the target audience in terms of age, hometown and clinical characteristics. Access and use of the service differed depending on the town, due to problems of misinformation concerning the proposal, difficulty of transportation and the fragility of the health network. The centers are considered an innovative and important initiative for the expansion and organization of the health network, though the intended logic is not effectively seen in practice. Interventions for articulation between the network services and adaptation of the agreed guidelines to the regional specificities are necessary.

Defining the Boundaries of a Right to Adequate Protection: A New Lens on Pediatric Research Ethics

PubMed Central

Groman, Michelle; Lee, Lisa M.

2017-01-01

Abstract We argue that the current ethical and regulatory framework for permissible risk levels in pediatric research can be helpfully understood in terms of children’s moral right to adequate protection from harm. Our analysis provides a rationale for what we propose as the highest level of permissible risk in pediatric research without the prospect of direct benefit: what we call “relatively minor” risk. We clarify the justification behind the usual standards of “minimal risk” and “a minor increase over minimal risk” and explain why it is permissible to impose any risks at all on child participants who do not stand to benefit directly from enrollment in research. Finally, we illuminate some aspects of the concept of “best interests.” PMID:28186557

Debridement Techniques in Pediatric Trauma and Burn-Related Wounds

PubMed Central

Block, Lisa; King, Timothy W.; Gosain, Ankush

2015-01-01

Significance: Traumatic injuries are the leading cause of morbidity and mortality in children. The purpose of this review is to provide an overview of the initial assessment and management of traumatic and burn wounds in children. Special attention is given to wound cleansing, debridement techniques, and considerations for pain management and psychosocial support for children and families. Recent Advances: Basic and translational research over the last 5–7 years has advanced our knowledge related to the optimal care of acute pediatric traumatic and burn wounds. Data concerning methods, volume, solution and timing for irrigation of acute traumatic wounds, timing and methods of wound debridement, including hydrosurgery and plasma knife coblation, and wound dressings are presented. Additionally, data concerning the long-term psychosocial outcomes following acute injury are presented. Critical Issues: The care of pediatric trauma and burn-related wounds requires prompt assessment, pain control, cleansing, debridement, application of appropriate dressings, and close follow-up. Ideally, a knowledgeable multidisciplinary team cares for these patients. A limitation in the care of these patients is the relative paucity of data specific to the care of acute traumatic wounds in the pediatric population. Future Directions: Research is ongoing in the arenas of new debridement techniques and instruments, and in wound dressing technology. Dedicated research on these topics in the pediatric population will serve to strengthen and advance the care of pediatric patients with acute traumatic and burn wounds. PMID:26487978

Actual implementation of sick children's rights in Italian pediatric units: a descriptive study based on nurses' perceptions.

PubMed

Bisogni, Sofia; Aringhieri, Corinna; McGreevy, Kathleen; Olivini, Nicole; Lopez, José Rafael Gonzalez; Ciofi, Daniele; Merlo, Alberta Marino; Mariotti, Paola; Festini, Filippo

2015-05-13

Several charters of rights have been issued in Europe to solemnly proclaim the rights of children during their hospital stay. However, notwithstanding such general declarations, the actual implementation of hospitalized children's rights is unclear. The purpose of this study was to understand to which extent such rights, as established by the two main existing charters of rights, are actually implemented and respected in Italian pediatric hospitals and the pediatric units of Italian general hospitals, as perceived by the nurses working in them. Cross-sectional study. A 12-item online questionnaire was set up and an invitation was sent by email to Italian pediatric nurses using professional mailing lists and social networks. Responders were asked to score to what extent each right is respected in their hospital using a numeric scale from 1 (never) to 5 (always). 536 questionnaires were returned. The best implemented right is the right of children to have their mothers with them (mean score 4.47). The least respected one is the right of children to express their opinion about care (mean 3.01). Other rights considered were the right to play (4.29), the right to be informed (3.95), the right to the respect of privacy (3.75), the right to be hospitalized with peers (3.39), the right not to experience pain ever (3.41), and the right to school (3.07). According to the majority of nurses, the most important is the right to pain relief. Significant differences in the implementation of rights were found between areas of Italy and between pediatric hospitals and pediatric units of general hospitals. According to the perception of pediatric nurses, the implementation of the rights of hospitalized children in Italian pediatrics units is still limited.

Two Sides of the Same Coin: Pediatric-Onset and Adult-Onset Common Variable Immune Deficiency.

PubMed

Sanchez, Lauren A; Maggadottir, Solrun Melkorka; Pantell, Matthew S; Lugar, Patricia; Rundles, Charlotte Cunningham; Sullivan, Kathleen E

2017-08-01

Common variable immunodeficiency (CVID) is a complex, heterogeneous immunodeficiency characterized by hypogammaglobulinemia, recurrent infections, and poor antibody response to vaccination. While antibiotics and immunoglobulin prophylaxis have significantly reduced infectious complications, non-infectious complications of autoimmunity, inflammatory lung disease, enteropathy, and malignancy remain of great concern. Previous studies have suggested that CVID patients diagnosed in childhood are more severely affected by these complications than adults diagnosed later in life. We sought to discern whether the rates of various infectious and non-infectious conditions differed between pediatric-diagnosed (ages 17 or younger) versus adult-diagnosed CVID (ages 18 or older). Using the United States Immunodeficiency Network (USIDNET) database, we performed a retrospective analysis of 457 children and adults with CVID, stratified by age at diagnosis. Chi-squared testing was used to compare pediatric versus adult groups. After correcting for multiple comparisons, we identified few statistically significant differences (p ≤ 0.0004) between pediatric and adult groups. Pediatric-onset CVID patients had more frequent diagnoses of otitis media, developmental delay, and failure to thrive compared with adult-onset CVID patients. Adult CVID patients were more frequently diagnosed with bronchitis, arthritis, depression, and fatigue. Diagnoses of autoimmunity, lymphoma, and other malignancies were higher in adults but not to a significant degree. Serum immunoglobulins (IgG, IgA, and IgM) and lymphocyte subsets did not differ significantly between the two groups. When complications of infections and co-morbid conditions were viewed categorically, there were few differences between pediatric-onset and adult-onset CVID patients. These results suggest that pediatric CVID is not a distinct phenotype. Major features were comparable across the groups. This study underscores the need for continued longitudinal study of pediatric and early-onset CVID patients to further characterize accrual of features over time.

Clinical recommendations of Cochrane reviews in pediatric gastroenterology: systematic analysis.

PubMed

Goda, Yvonne; Sauer, Harald; Schöndorf, Dominik; Hennes, Pia; Gortner, Ludwig; Gräber, Stefan; Meyer, Sascha

2015-01-01

Systematic and up-to-date Cochrane reviews in pediatrics in general and in pediatric gastroenterology in particular are important tools in disseminating the best available evidence to the medical community, thus providing the physician at the bedside with invaluable information and recommendations with regard to specific clinical questions. A systematic literature review was conducted, including all Cochrane reviews published by the Cochrane Review Group in the field of pediatric gastroenterology between 1993 and 2012, with regard to the percentage of reviews that concluded that a certain intervention provided a benefit, percentage of reviews that concluded that a certain intervention should not be performed, and percentage of studies that concluded that the current level of evidence was inconclusive. In total, 86 reviews in the field of pediatric gastroenterology were included. The majority of reviews assessed pharmacological interventions (46/86); other important fields included prevention (15/86) and nutrition (9/86). A total of 33/86 reviews issued definite recommendations (positive, 19/86; negative, 14/86). The remaining 53/86 reviews were either inconclusive (24/86) or only of limited conclusiveness (29/86). The percentage of inconclusive reviews increased from 9% (1998-2002) to 19% (2003-2007; P < 0.05) to finally 24% (2008-2012) (P < 0.05). The three most common reasons for the need for further research were heterogeneity of studies (26/86), small number of patients (18/86), and insufficient data (16/86). Further high-quality research is necessary to increase the proportion of reviews with clear recommendations. Funding and research agencies are key to selecting the most appropriate research programs. © 2014 Japan Pediatric Society.

Methods and Practices of Investigators for Determining Participants’ Decisional Capacity and Comprehension of Protocols

PubMed Central

Kon, Alexander A.; Klug, Michael

2010-01-01

Ethicists recommend that investigators assess subjects’ comprehension prior to accepting their consent as valid. Because children represent an at-risk population, ensuring adequate comprehension in pediatric research is vital. We surveyed all corresponding authors of research articles published over a six-month period in five leading adult and pediatric journals. Our goal was to assess how often subject’s comprehension or decisional capacity was assessed in the consent process, whether there was any difference between adult and pediatric research projects, and the rate at which investigators use formal or validated tools to assess capacity. Responses from 102 authors were analyzed (response rate 56%). Approximately two-thirds of respondents stated that they assessed comprehension or decisional capacity prior to accepting consent, and we found no difference between adult and pediatric researchers. Nine investigators used a formal questionnaire, and three used a validated tool. These findings suggest that fewer than expected investigators assess comprehension and decisional capacity, and that the use of standardized and validated tools is the exception rather than the rule. PMID:19385838

Anxiety Among Adolescent Survivors of Pediatric Cancer.

PubMed

McDonnell, Glynnis A; Salley, Christina G; Barnett, Marie; DeRosa, Antonio P; Werk, Rachel S; Hourani, Allison; Hoekstra, Alyssa B; Ford, Jennifer S

2017-10-01

The purpose of this review was to synthesize current knowledge about anxiety among adolescent survivors of pediatric cancer and highlights areas for future research. Systematic literature searches were conducted in five databases for articles published anytime before December 28, 2015. Manuscripts were reviewed by a team of six coders. Included manuscripts reported outcomes relevant to anxiety, worry, and post-traumatic stress in survivors of pediatric cancer (age at the time of study: 10-22 years) who were off treatment. Twenty-four articles met inclusion criteria. Included results were categorized into the following domains: post-traumatic stress, anxiety, cancer-related worry, and interventions. With the exception of post-traumatic stress, there was little research about anxiety in this population; however, studies generally indicated that adolescent survivors of pediatric cancer are at elevated risk for anxiety, post-traumatic stress symptoms, and cancer-related worry. This review provides preliminary evidence that anxiety is a relevant, but understudied, psychosocial outcome for adolescent survivors of pediatric cancer. More research is needed to better understand the presentation of anxiety in this population, its effect on survivors' quality of life, and possible areas for intervention. Copyright © 2017 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

State-of-the-art office-based interventions to eliminate youth tobacco use: the past decade.

PubMed

Pbert, Lori; Farber, Harold; Horn, Kimberly; Lando, Harry A; Muramoto, Myra; O'Loughlin, Jennifer; Tanski, Susanne; Wellman, Robert J; Winickoff, Jonathan P; Klein, Jonathan D

2015-04-01

Tobacco use and tobacco smoke exposure are among the most important preventable causes of premature disease, disability, and death and therefore constitute a major pediatric health concern. The pediatric primary care setting offers excellent opportunities to prevent tobacco use in youth and to deliver cessation-related treatment to youth and parents who use tobacco. This report updates a "state-of-the-art" article published a decade ago on office-based interventions to address these issues. Since then there has been marked progress in understanding the nature, onset, and trajectories of tobacco use and nicotine addiction in youth with implications for clinical practice. In addition, clinicians need to remain abreast of emerging nicotine delivery systems, such as electronic cigarettes, that may influence uptake or continuation of smoking. Although evidence-based practice guidelines for treating nicotine addiction in youth are not yet available, research continues to build the evidence base toward that goal. In the interim, practical guidelines are available to assist clinicians in addressing nicotine addiction in the pediatric clinical setting. This article reports current practices in addressing tobacco in pediatric primary care settings. It reviews our increasing understanding of youth nicotine addiction, summarizes research efforts on intervention in the past decade and additional research needed going forward, and provides practical guidelines for pediatric health care providers to integrate tobacco use prevention and treatment into their clinical practice. Pediatric providers can and should play an important role in addressing tobacco use and dependence, both in the youth they care for and in parents who use tobacco. Copyright © 2015 by the American Academy of Pediatrics.

Chapter 6 state of the science of pediatric traumatic brain injury: biomarkers and gene association studies.

PubMed

Reuter-Rice, Karin; Eads, Julia K; Berndt, Suzanna Boyce; Bennett, Ellen

2015-01-01

Our objective is to review the most widely used biomarkers and gene studies reported in pediatric traumatic brain injury (TBI) literature, to describe their findings, and to discuss the discoveries and gaps that advance the understanding of brain injury and its associated outcomes. Ultimately, we aim to inform the science for future research priorities. We searched PubMed, MEDLINE, CINAHL, and the Cochrane Database of Systematic Reviews for published English language studies conducted in the last 10 years to identify reviews and completed studies of biomarkers and gene associations in pediatric TBI. Of the 131 biomarker articles, only 16 were specific to pediatric TBI patients, whereas of the gene association studies in children with TBI, only four were included in this review. Biomarker and gene attributes are grossly understudied in pediatric TBI in comparison to adults. Although recent advances recognize the importance of biomarkers in the study of brain injury, the limited number of studies and genomic associations in the injured brain has shown the need for common data elements, larger sample sizes, heterogeneity, and common collection methods that allow for greater understanding of the injured pediatric brain. By building on to the consortium of interprofessional scientists, continued research priorities would lead to improved outcome prediction and treatment strategies for children who experience a TBI. Understanding recent advances in biomarker and genomic studies in pediatric TBI is important because these advances may guide future research, collaborations, and interventions. It is also important to ensure that nursing is a part of this evolving science to promote improved outcomes in children with TBIs.

Pediatric sample inclusion in an opt-out biorepository linking DNA to de-identified medical records: Pediatric BioVU

PubMed Central

McGregor, Tracy L.; Van Driest, Sara L.; Brothers, Kyle B.; Bowton, Erica A.; Muglia, Louis J.; Roden, Dan M.

2013-01-01

The Vanderbilt DNA repository, BioVU, links DNA from leftover clinical blood samples to de-identified electronic medical records. After initiating adult sample collection, pediatric extension required consideration of ethical concerns specific to pediatrics and implementation of specialized DNA extraction methods. In the first year of pediatric sample collection, over 11,000 samples were included from individuals younger than 18 years. We compared the pediatric BioVU cohort to the overall Vanderbilt University Medical Center pediatric population and found similar demographic characteristics; however, the BioVU cohort has higher rates of select diseases, medication exposures, and laboratory testing, demonstrating enriched representation of severe or chronic disease. This unbalanced sample accumulation may accelerate research of some cohorts, but also may limit study of relatively benign conditions and the accrual of unaffected and unbiased control samples. BioVU represents a feasible model for pediatric DNA biobanking but involves both ethical and practical considerations specific to the pediatric population. PMID:23281421

Annual Research Review: Functional Somatic Symptoms and Associated Anxiety and Depression--Developmental Psychopathology in Pediatric Practice

ERIC Educational Resources Information Center

Campo, John V.

2012-01-01

Background: Medically unexplained physical symptoms, commonly referred to as functional somatic symptoms (FSS), are common in pediatric medical settings and associated with suffering, impairment, and medical help seeking. The association of pediatric FSS with anxiety and depressive symptoms and disorders across the life span is reviewed.Method:…

Outcomes research in pediatric settings: recent trends and future directions.

PubMed

Forrest, Christopher B; Shipman, Scott A; Dougherty, Denise; Miller, Marlene R

2003-01-01

Pediatric outcomes research examines the effects of health care delivered in everyday medical settings on the health of children and adolescents. It is an area of inquiry in its nascent stages of development. We conducted a systematic literature review that covered articles published during the 6-year interval 1994-1999 and in 39 peer-reviewed journals chosen for their likelihood of containing child health services research. This article summarizes the article abstraction, reviews the literature, describes recent trends, and makes recommendations for future work. In the sample of journals that we examined, the number of pediatric outcomes research articles doubled between 1994 and 1999. Hospitals and primary care practices were the most common service sectors, accounting for more than half of the articles. Common clinical categories included neonatal conditions, asthma, psychosocial problems, and injuries. Approximately 1 in 5 studies included multistate or national samples; 1 in 10 used a randomized controlled trial study design. Remarkably few studies examined the health effects of preventive, diagnostic, long-term management, or curative services delivered to children and adolescents. Outcomes research in pediatric settings is a rapidly growing area of inquiry that is acquiring breadth but has achieved little depth in any single content area. Much work needs to be done to inform decision making regarding the optimal ways to finance, organize, and deliver child health care services. To improve the evidence base of pediatric health care, more effectiveness research is needed to evaluate the overall and relative effects of services delivered to children and adolescents in everyday settings.

Functional Magnetic Resonance Imaging

ERIC Educational Resources Information Center

Voos, Avery; Pelphrey, Kevin

2013-01-01

Functional magnetic resonance imaging (fMRI), with its excellent spatial resolution and ability to visualize networks of neuroanatomical structures involved in complex information processing, has become the dominant technique for the study of brain function and its development. The accessibility of in-vivo pediatric brain-imaging techniques…

Interdisciplinary care in disorders/differences of sex development (DSD): The psychosocial component of the DSD-Translational research network.

PubMed

Sandberg, David E; Gardner, Melissa; Callens, Nina; Mazur, Tom

2017-06-01

Scientific discovery and clinical management strategies for Disorders/Differences of Sex Development (DSD) have advanced in recent years. The 2006 Consensus Statement on Management of Intersex Disorders stated that a mental health component to care is integral to promote positive adaptation, yet the parameters of this element have not been described. The objective of this paper is threefold: to describe the psychosocial screening protocol adopted by the clinical centers of the DSD-Translational Research Network; to summarize psychosocial data collected at 1 of the 10 network sites; and to suggest how systematic behavioral health screenings can be employed to tailor care in DSD that results in better health and quality of life outcomes. Steps taken in developing the largely "noncategorical" screening protocol are described. These preliminary findings suggest that DSD, as one category of pediatric chronic conditions, is not associated with marked disturbances of psychosocial adaptation, either for the family or the child; however, screening frequently uncovered "risk factors" for individual families or patients that can potentially be addressed in the context of ongoing clinical care. Administration of the DSD-TRN psychosocial screening protocol was demonstrated to be feasible in the context of interdisciplinary team care and was acceptable to families on a longitudinal basis. The ultimate value of systematic screening will be demonstrated through a tailoring of psychosocial, medical and surgical services, based on this information that enhances the quality of patient and family-centered care and subsequent outcomes. © 2017 Wiley Periodicals, Inc.

Patient safety in the rehabilitation of children with spinal cord injuries, spina bifida, neuromuscular disorders, and amputations.

PubMed

Cancel, David; Capoor, Jaishree

2012-05-01

Pediatric patient safety continues to challenge both pediatricians and pediatric physiatrists. While there is a trend toward developing general patient safety initiatives, there is little research on pediatric patient safety. This article identifies major areas of general safety risk, with a focus on timely diagnosis and care coordination to prevent secondary complications that compromise health, function, and quality of life in pediatric neuromuscular disease, spinal cord disorders, and amputation. Copyright © 2012 Elsevier Inc. All rights reserved.

DOE Office of Scientific and Technical Information (OSTI.GOV)

Toltz, A; Seuntjens, J; Hoesl, M

Purpose: With the aim of reducing acute esophageal radiation toxicity in pediatric patients receiving craniospinal irradiation (CSI), we investigated the implementation of an in-vivo, adaptive proton therapy range verification methodology. Simulation experiments and in-phantom measurements were conducted to validate the range verification technique for this clinical application. Methods: A silicon diode array system has been developed and experimentally tested in phantom for passively scattered proton beam range verification for a prostate treatment case by correlating properties of the detector signal to the water equivalent path length (WEPL). We propose to extend the methodology to verify range distal to the vertebralmore » body for pediatric CSI cases by placing this small volume dosimeter in the esophagus of the anesthetized patient immediately prior to treatment. A set of calibration measurements was performed to establish a time signal to WEPL fit for a “scout” beam in a solid water phantom. Measurements are compared against Monte Carlo simulation in GEANT4 using the Tool for Particle Simulation (TOPAS). Results: Measurements with the diode array in a spread out Bragg peak of 14 cm modulation width and 15 cm range (177 MeV passively scattered beam) in solid water were successfully validated against proton fluence rate simulations in TOPAS. The resulting calibration curve allows for a sensitivity analysis of detector system response with dose rate in simulation and with individual diode position through simulation on patient CT data. Conclusion: Feasibility has been shown for the application of this range verification methodology to pediatric CSI. An in-vivo measurement to determine the WEPL to the inner surface of the esophagus will allow for personalized adjustment of the treatment plan to ensure sparing of the esophagus while confirming target coverage. A Toltz acknowledges partial support by the CREATE Medical Physics Research Training Network grant of the Natural Sciences and Engineering Research Council (Grant number: 432290)« less

Racial and Ethnic Differences in Antibiotic Use for Viral Illness in Emergency Departments.

PubMed

Goyal, Monika K; Johnson, Tiffani J; Chamberlain, James M; Casper, T Charles; Simmons, Timothy; Alessandrini, Evaline A; Bajaj, Lalit; Grundmeier, Robert W; Gerber, Jeffrey S; Lorch, Scott A; Alpern, Elizabeth R

2017-10-01

In the primary care setting, there are racial and ethnic differences in antibiotic prescribing for acute respiratory tract infections (ARTIs). Viral ARTIs are commonly diagnosed in the pediatric emergency department (PED), in which racial and ethnic differences in antibiotic prescribing have not been previously reported. We sought to investigate whether patient race and ethnicity was associated with differences in antibiotic prescribing for viral ARTIs in the PED. This is a retrospective cohort study of encounters at 7 PEDs in 2013, in which we used electronic health data from the Pediatric Emergency Care Applied Research Network Registry. Multivariable logistic regression was used to examine the association between patient race and ethnicity and antibiotics administered or prescribed among children discharged from the hospital with viral ARTI. Children with bacterial codiagnoses, chronic disease, or who were immunocompromised were excluded. Covariates included age, sex, insurance, triage level, provider type, emergency department type, and emergency department site. Of 39 445 PED encounters for viral ARTIs that met inclusion criteria, 2.6% (95% confidence interval [CI] 2.4%-2.8%) received antibiotics, including 4.3% of non-Hispanic (NH) white, 1.9% of NH black, 2.6% of Hispanic, and 2.9% of other NH children. In multivariable analyses, NH black (adjusted odds ratio [aOR] 0.44; CI 0.36-0.53), Hispanic (aOR 0.65; CI 0.53-0.81), and other NH (aOR 0.68; CI 0.52-0.87) children remained less likely to receive antibiotics for viral ARTIs. Compared with NH white children, NH black and Hispanic children were less likely to receive antibiotics for viral ARTIs in the PED. Future research should seek to understand why racial and ethnic differences in overprescribing exist, including parental expectations, provider perceptions of parental expectations, and implicit provider bias. Copyright © 2017 by the American Academy of Pediatrics.

Everything is connected: social determinants of pediatric health and disease.

PubMed

Tarazi, Carine; Skeer, Margie; Fiscella, Kevin; Dean, Stephanie; Dammann, Olaf

2016-01-01

Carine Tarazi, MA, is an Assistant Editor for Pediatric Research in Boston, Massachusetts, USA. Margie Skeer, ScD, MPH, MSW, served as a Guest Editor for this special issue. Dr. Skeer is Assistant Professor of Public Health and Community Medicine at Tufts University. Her research focuses on adolescent substance misuse and sexual risk prevention, both from epidemiologic and intervention-development perspectives. Kevin Fiscella, MD, MPH, served as a Guest Editor for this special issue. Dr. Fiscella is Tenured Professor of Family Medicine, Public Health Sciences and Community Health at the University of Rochester Medical Center. Dr. Fiscella's research focuses on health and health care disparities, particularly practical strategies to improve health equity. Stephanie Dean, MBA, is Managing Editor of Pediatric Research and is based out of editorial office in The Woodlands, Texas. Olaf Dammann, MD, served as a Guest Editor for this special issue. Dr. Dammann is a Professor of Public Health and Community Medicine, Pediatrics, and Ophthalmology at Tufts University School of Medicine in Boston, Massachusetts, USA, as well as Professor of Perinatal Neuroepidemiology at Hannover Medical School, Hannover, Germany. His research interests include the elucidation of risk factors for brain damage and retinopathy in preterm newborns, the theory of risk and causation in biomedical and public health research, and the development of computational chronic disease models.

Defining pediatric sepsis by different criteria: discrepancies in populations and implications for clinical practice.

PubMed

Weiss, Scott L; Parker, Brandon; Bullock, Maria E; Swartz, Sheila; Price, Carolynn; Wainwright, Mark S; Goodman, Denise M

2012-07-01

Pediatric patients with sepsis are identified using related but distinct criteria for clinical, research, and administrative purposes. The overlap between these criteria will affect the validity of extrapolating data across settings. We sought to quantify the extent of agreement among different criteria for pediatric severe sepsis/septic shock and to detect systematic differences between these cohorts. Observational cohort study. Forty-two bed pediatric intensive care unit at an academic medical center. A total of 1,729 patients ≤ 18 yrs-old. None. All patients were screened for severe sepsis or septic shock using consensus guidelines (research criteria), diagnosis by healthcare professionals (clinical criteria), and International Classification of Diseases, Ninth Revision, Clinical Modification codes (administrative criteria). Cohen's κ determined the level of agreement among criteria, and patient characteristics were compared between cohorts. Ninety (5.2%) patients were identified by research, 96 (5.6%) by clinical, and 103 (6.0%) by administrative criteria. The κ ± standard error for pair-wise comparisons was 0.67 ± 0.04 for research-clinical, 0.52 ± 0.05 for research-administrative, and 0.55 ± 0.04 for clinical-administrative. Of the patients in the clinical cohort, 67% met research and 58% met administrative criteria. The research cohort exhibited a higher Pediatric Index of Mortality-2 score (median, interquartile range 5.2, 1.6-13.3) than the clinical (3.6, 1.1-6.2) and administrative (3.9, 1.0-6.0) cohorts (p = .005), an increased requirement for vasoactive infusions (74%, 57%, and 45%, p < .001), and a potential bias toward an increased proportion with respiratory dysfunction compared with clinical practice. Although research, clinical, and administrative criteria yielded a similar incidence (5%-6%) for pediatric severe sepsis/septic shock, there was only a moderate level of agreement in the patients identified by different criteria. One third of patients diagnosed clinically with sepsis would not have been included in studies based on consensus guidelines or International Classification of Diseases, Ninth Revision, Clinical Modification codes. Differences in patient selection need to be considered when extrapolating data across settings.

First results of Liguria-Trento transplant network project: a model for a macroregional network and real-time registry in Italy.

PubMed

Valente, R; Cambiaso, F; Santori, G; Ghirelli, R; Gianelli, A; Valente, U

2004-04-01

In Italy, health-care telematic is funded and supported at the level of national government or regional institutions. In 1999, the Italian Ministry of Health started to fund the Liguria-Trento Transplant Network (LTTN) project, a health research project with the aim to build an informative system for donor management and transplantation activity in a macroregional area. At the time of LTTN project proposal, no published Transplant Network Informative System fulfilled Italian rules on telematic management of electronic documentation concerning transplantation activity. Partnership of LTTN project were two Regional Transplant Coordinating Centres, Nord Italia Transplant Interregional Coordinating Centre and the Italian Institute of Health/National Transplant Coordinating Centre. Project Total Quality Management methods were adopted. Technological and case analysis followed ANSI-HL7, CEN-TC251, and Object-Oriented Software Engineering standards. A low-tech prototype powered by a web access relational database is running on a transplant network including web-based clients located in 17 intensive care units, in Nord Italia Transplant Interregional Coordinating Centre, and at the Italian Institute of Health/National Transplant Coordinating Centre. LTTN registry includes pretransplant, surgical, and posttransplant phases regarding liver, kidney, pancreas, and kidney-pancreas transplantation in adult and pediatric recipients. Clinical specifications were prioritized in agreement with the RAND/UCLA appropriateness method. Further implementation will include formal rules for data access and output release, fault tolerance, and a continuous registry evolution plan.

Variation in pediatric outpatient adenotonsillectomy costs in a multihospital network.

PubMed

Meier, Jeremy D; Zhang, Yingying; Greene, Tom H; Curtis, Jonathan L; Srivastava, Rajendu

2015-05-01

Identify hospital costs for same-day pediatric adenotonsillectomy (T&A) surgery, and evaluate surgeon, hospital, and patient factors influencing variation in costs, and compare relationship of costs to complications for T&A. Observational retrospective cohort study. A multihospital network's standardized activity-based accounting system was used to determine hospital costs per T&A from 1998 to 2012. Children 1 to 18 years old who underwent same-day T&A surgery were included. Subjects with additional procedures were excluded. Mixed effects analyses were performed to identify variation in mean costs due to surgeon, hospital, and patient factors. Surgeons' mean cost/case was related to subsequent complications, defined as any unplanned visit within 21 days in the healthcare system. The study cohort included 26,626 T&As performed by 66 surgeons at 18 hospitals. Mean cost per T&A was $1,355 ± $505. Mixed effects analysis using patient factors as fixed effects and surgeon and hospital as a random effect identified significant variation in mean costs per surgeon, with 95% of surgeons having a mean cost/case between 67% and 150% of the overall mean (range, $874-$2,232/case). Similar variability was found among hospitals, with 95% of the facilities having mean costs between 64% to 156% of the mean (range, $1,029-$2,385/case). Severity of illness and several other patient factors exhibited small but statistically significant associations with cost. Surgeons' mean cost/case was moderately associated with an increased complication rate. Significant variation in same-day pediatric T&A surgery costs exists among different surgeons and hospitals within a multihospital network. Reducing variation in costs while maintaining outcomes may improve healthcare value and eliminate waste. 4. © 2014 The American Laryngological, Rhinological and Otological Society, Inc.

Interactive data collection: benefits of integrating new media into pediatric research.

PubMed

Kennedy, Christine; Charlesworth, Annemarie; Chen, Jyu-Lin

2003-01-01

Despite the prevalence of children's computerized games for recreational and educational purposes, the use of interactive technology to obtain pediatric research data remains underexplored. This article describes the development of laptop interactive data collection (IDC) software for a children's health intervention study. The IDC integrates computer technology, children's developmental needs, and quantitative research methods that are engaging for school-age children as well as reliable and efficient for the pediatric health researcher. Using this methodology, researchers can address common problems such as maintaining a child's attention throughout an assessment session while potentially increasing their response rate and reducing missing data rates. The IDC also promises to produce more reliable data by eliminating the need for manual double entry of data and reducing much of the time and costs associated with data cleaning and management. Development and design considerations and recommendations for further use are discussed.

Challenges in conducting research in pediatric long-term care facilities.

PubMed

Larson, Elaine L; Cohen, Bevin; Murray, Meghan; Saiman, Lisa

2014-10-01

Children residing in long-term care facilities (LTCFs) have complex medical problems and unique care needs, yet research in this setting is rare. As part of an intervention study to improve patient safety (Keep It Clean for Kids [KICK]), we describe the challenges encountered and recommend approaches to build a successful and sustained collaborative relationship between pediatric LTCFs and the research team. We implemented a program with 5 components: leadership commitment, active staff participation by the creation of KICK teams, workflow assessments, staff training in the World Health Organization's "5 Moments for Hand Hygiene," and electronic monitoring and feedback to staff regarding hand hygiene practices. Major challenges encountered were establishing trust, building research teams, enhancing staff participation, and engaging families and visitors. Approaches to deal with these challenges are discussed. Conducting research in pediatric LTCFs requires sustained commitment to dealing with challenges and establishing collaborative relationships with administrative and frontline staff. © The Author(s) 2014.

Genomic Circuitry Underlying Immunological Response to Pediatric Acute Respiratory Infection.

PubMed

Henrickson, Sarah E; Manne, Sasikanth; Dolfi, Douglas V; Mansfield, Kathleen D; Parkhouse, Kaela; Mistry, Rakesh D; Alpern, Elizabeth R; Hensley, Scott E; Sullivan, Kathleen E; Coffin, Susan E; Wherry, E John

2018-01-09

Acute respiratory tract viral infections (ARTIs) cause significant morbidity and mortality. CD8 T cells are fundamental to host responses, but transcriptional alterations underlying anti-viral mechanisms and links to clinical characteristics remain unclear. CD8 T cell transcriptional circuitry in acutely ill pediatric patients with influenza-like illness was distinct for different viral pathogens. Although changes included expected upregulation of interferon-stimulated genes (ISGs), transcriptional downregulation was prominent upon exposure to innate immune signals in early IFV infection. Network analysis linked changes to severity of infection, asthma, sex, and age. An influenza pediatric signature (IPS) distinguished acute influenza from other ARTIs and outperformed other influenza prediction gene lists. The IPS allowed a deeper investigation of the connection between transcriptional alterations and clinical characteristics of acute illness, including age-based differences in circuits connecting the STAT1/2 pathway to ISGs. A CD8 T cell-focused systems immunology approach in pediatrics identified age-based alterations in ARTI host response pathways. Copyright © 2017 The Author(s). Published by Elsevier Inc. All rights reserved.

Pediatric Trichotillomania

PubMed Central

Harrison, Julie P.; Franklin, Martin E.

2012-01-01

Trichotillomania (TTM) is an impulse control disorder characterized by chronic hair-pulling, distress, and impairment. Although the negative effects of TTM are documented and often readily evident, there remains a paucity of psychopathology and treatment research on this disorder, particularly in pediatric populations. In an effort to improve assessment of pediatric TTM, several TTM-specific instruments for youth have now been developed to reliably identify symptoms and examine related phenomenology. Instrument development has now yielded instruments to evaluate TTM and related symptoms in the context of clinical trials of youth, and the first randomized controlled trial of any treatment for pediatric TTM was recently published. Using the initial pediatric TTM studies as building blocks, future research is now needed to create a stronger body of knowledge about the relative and combined efficacy of potential interventions for TTM in youth, as well as to examine the effects of TTM phenomenology and comorbidity on treatment outcome. Dissemination efforts must also be heightened for this knowledge to best reach these vulnerable populations. PMID:22437627

Validity of Level of Supervision Scales for Assessing Pediatric Fellows on the Common Pediatric Subspecialty Entrustable Professional Activities.

PubMed

Mink, Richard B; Schwartz, Alan; Herman, Bruce E; Turner, David A; Curran, Megan L; Myers, Angela; Hsu, Deborah C; Kesselheim, Jennifer C; Carraccio, Carol L

2018-02-01

Entrustable professional activities (EPAs) represent the routine and essential activities that physicians perform in practice. Although some level of supervision scales have been proposed, they have not been validated. In this study, the investigators created level of supervision scales for EPAs common to the pediatric subspecialties and then examined their validity in a study conducted by the Subspecialty Pediatrics Investigator Network (SPIN). SPIN Steering Committee members used a modified Delphi process to develop unique scales for six of the seven common EPAs. The investigators sought validity evidence in a multisubspecialty study in which pediatric fellowship program directors and Clinical Competency Committees used the scales to evaluate fellows in fall 2014 and spring 2015. Separate scales for the six EPAs, each with five levels of progressive entrustment, were created. In both fall and spring, more than 300 fellows in each year of training from over 200 programs were assessed. In both periods and for each EPA, there was a progressive increase in entrustment levels, with second-year fellows rated higher than first-year fellows (P < .001) and third-year fellows rated higher than second-year fellows (P < .001). For each EPA, spring ratings were higher (P < .001) than those in the fall. Interrater reliability was high (Janson and Olsson's iota = 0.73). The supervision scales developed for these six common pediatric subspecialty EPAs demonstrated strong validity evidence for use in EPA-based assessment of pediatric fellows. They may also inform the development of scales in other specialties.

The role of librarians in teaching evidence-based medicine to pediatric residents: a survey of pediatric residency program directors.

PubMed

Boykan, Rachel; Jacobson, Robert M

2017-10-01

The research sought to identify the general use of medical librarians in pediatric residency training, to define the role of medical librarians in teaching evidence-based medicine (EBM) to pediatric residents, and to describe strategies and curricula for teaching EBM used in pediatric residency training programs. We sent a 13-question web-based survey through the Association of Pediatric Program Directors to 200 pediatric residency program directors between August and December 2015. A total of 91 (46%) pediatric residency program directors responded. Most (76%) programs had formal EBM curricula, and more than 75% of curricula addressed question formation, searching, assessment of validity, generalizability, quantitative importance, statistical significance, and applicability. The venues for teaching EBM that program directors perceived to be most effective included journal clubs (84%), conferences (44%), and morning report (36%). While 80% of programs utilized medical librarians, most of these librarians assisted with scholarly or research projects (74%), addressed clinical questions (62%), and taught on any topic not necessarily EBM (58%). Only 17% of program directors stated that librarians were involved in teaching EBM on a regular basis. The use of a librarian was not associated with having an EBM curriculum but was significantly associated with the size of the program. Smaller programs were more likely to utilize librarians (100%) than were medium (71%) or large programs (75%). While most pediatric residency programs have an EBM curriculum and engage medical librarians in various ways, librarians' expertise in teaching EBM is underutilized. Programs should work to better integrate librarians' expertise, both in the didactic and clinical teaching of EBM.

SU-F-T-202: An Evaluation Method of Lifetime Attributable Risk for Comparing Between Proton Beam Therapy and Intensity Modulated X-Ray Therapy for Pediatric Cancer Patients by Averaging Four Dose-Response Models for Carcinoma Induction

DOE Office of Scientific and Technical Information (OSTI.GOV)

Tamura, M; Shirato, H; Ito, Y

Purpose: To examine how much lifetime attributable risk (LAR) as an in silico surrogate marker of radiation-induced secondary cancer would be lowered by using proton beam therapy (PBT) in place of intensity modulated x-ray therapy (IMXT) in pediatric patients. Methods: From 242 pediatric patients with cancers who were treated with PBT, 26 patients were selected by random sampling after stratification into four categories: a) brain, head, and neck, b) thoracic, c) abdominal, and d) whole craniospinal (WCNS) irradiation. IMXT was re-planned using the same computed tomography and region of interest. Using dose volume histogram (DVH) of PBT and IMXT, themore » LAR of Schneider et al. was calculated for the same patient. The published four dose-response models for carcinoma induction: i) full model, ii) bell-shaped model, iii) plateau model, and ix) linear model were tested for organs at risk. In the case that more than one dose-response model was available, the LAR for this patient was calculated by averaging LAR for each dose-response model. Results: Calculation of the LARs of PBT and IMXT based on DVH was feasible for all patients. The mean±standard deviation of the cumulative LAR difference between PBT and IMXT for the four categories was a) 0.77±0.44% (n=7, p=0.0037), b) 23.1±17.2%,(n=8, p=0.0067), c) 16.4±19.8% (n=8, p=0.0525), and d) 49.9±21.2% (n=3, p=0.0275, one tailed t-test), respectively. The LAR was significantly lower by PBT than IMXT for the the brain, head, and neck region, thoracic region, and whole craniospinal irradiation. Conclusion: In pediatric patients who had undergone PBT, the LAR of PBT was significantly lower than the LAR of IMXT estimated by in silico modeling. This method was suggested to be useful as an in silico surrogate marker of secondary cancer induced by different radiotherapy techniques. This research was supported by the Translational Research Network Program, JSPS KAKENHI Grant No. 15H04768 and the Global Institution for Collaborative Research and Education (GI-CoRE), Hokkaido University, founded by the Ministry of Education, Culture, Sports, Science and Technology (MEXT), Japan.« less

Secondary analysis of merged American Hospital Association data and U.S. Census data: beginning to understand the supply-demand chain in pediatric inpatient care.

PubMed

Lacey, Susan R; Kilgore, Meredith; Yun, Huifeng; Hughes, Ronda; Allison, Jeroan; Cox, Karen S

2008-06-01

Much attention has been focused on how the nursing shortage will impact the growing number of aging Americans. This study was conducted as a first step in understanding nursing supply relative to potential pediatric demand using merged data from the American Hospital Association's annual survey and Census data by state from the year 2000. Findings indicate that there is tremendous variability among reporting states related to estimated pediatric nurses (registered nurse full-time equivalents), potential pediatric demand (persons from birth to 18 years), and allocated pediatric beds. Future research will examine how this supply-demand chain impacts clinical and cost outcomes for pediatric patients.

Recommendations for the Use of Common Outcome Measures in Pediatric Traumatic Brain Injury Research

PubMed Central

Wilde, Elisabeth A.; Anderson, Vicki A.; Bedell, Gary; Beers, Sue R.; Campbell, Thomas F.; Chapman, Sandra B.; Ewing-Cobbs, Linda; Gerring, Joan P.; Gioia, Gerard A.; Levin, Harvey S.; Michaud, Linda J.; Prasad, Mary R.; Swaine, Bonnie R.; Turkstra, Lyn S.; Wade, Shari L.; Yeates, Keith O.

2012-01-01

Abstract This article addresses the need for age-relevant outcome measures for traumatic brain injury (TBI) research and summarizes the recommendations by the inter-agency Pediatric TBI Outcomes Workgroup. The Pediatric Workgroup's recommendations address primary clinical research objectives including characterizing course of recovery from TBI, prediction of later outcome, measurement of treatment effects, and comparison of outcomes across studies. Consistent with other Common Data Elements (CDE) Workgroups, the Pediatric TBI Outcomes Workgroup adopted the standard three-tier system in its selection of measures. In the first tier, core measures included valid, robust, and widely applicable outcome measures with proven utility in pediatric TBI from each identified domain including academics, adaptive and daily living skills, family and environment, global outcome, health-related quality of life, infant and toddler measures, language and communication, neuropsychological impairment, physical functioning, psychiatric and psychological functioning, recovery of consciousness, social role participation and social competence, social cognition, and TBI-related symptoms. In the second tier, supplemental measures were recommended for consideration in TBI research focusing on specific topics or populations. In the third tier, emerging measures included important instruments currently under development, in the process of validation, or nearing the point of published findings that have significant potential to be superior to measures in the core and supplemental lists and may eventually replace them as evidence for their utility emerges. PMID:21644810

Utility of plain radiographs in detecting traumatic injuries of the cervical spine in children.

PubMed

Nigrovic, Lise E; Rogers, Alexander J; Adelgais, Kathleen M; Olsen, Cody S; Leonard, Jeffrey R; Jaffe, David M; Leonard, Julie C

2012-05-01

The objective of this study was to estimate the sensitivity of plain radiographs in identifying bony or ligamentous cervical spine injury in children. We identified a retrospective cohort of children younger than 16 years with blunt trauma-related bony or ligamentous cervical spine injury evaluated between 2000 and 2004 at 1 of 17 hospitals participating in the Pediatric Emergency Care Applied Research Network. We excluded children who had a single or undocumented number of radiographic views or one of the following injuries types: isolated spinal cord injury, spinal cord injury without radiographic abnormalities, or atlantoaxial rotary subluxation. Using consensus methods, study investigators reviewed the radiology reports and assigned a classification (definite, possible, or no cervical spine injury) as well as film adequacy. A pediatric neurosurgeon, blinded to the classification of the radiology reports, reviewed complete case histories and assigned final cervical spine injury type. We identified 206 children who met inclusion criteria, of which 127 had definite and 41 had possible cervical spine injury identified by plain radiograph. Of the 186 children with adequate cervical spine radiographs, 168 had definite or possible cervical spine injury identified by plain radiograph for a sensitivity of 90% (95% confidence interval, 85%-94%). Cervical spine radiographs did not identify the following cervical spine injuries: fracture (15 children) and ligamentous injury alone (3 children). Nine children with normal cervical spine radiographs presented with 1 or more of the following: endotracheal intubation (4 children), altered mental status (5 children), or focal neurologic findings (5 children). Plain radiographs had a high sensitivity for cervical spine injury in our pediatric cohort.

Allied Health Professional Support in Pediatric Inflammatory Bowel Disease: A Survey from the Canadian Children Inflammatory Bowel Disease Network—A Joint Partnership of CIHR and the CH.I.L.D. Foundation

PubMed Central

Benchimol, Eric I.; Mack, David; Huynh, Hien Q.; Critch, Jeff; Otley, Anthony; Deslandres, Colette; Jacobson, Kevan; deBruyn, Jennifer; Carroll, Matthew W.; Van Limbergen, Johan; Sherlock, Mary; Bax, Kevin; Lawrence, Sally; Seidman, Ernest; Issenman, Robert; Church, Peter; Griffiths, Anne M.

2017-01-01

Objectives The current number of healthcare providers (HCP) caring for children with inflammatory bowel disease (IBD) across Canadian tertiary-care centres is underinvestigated. The aim of this survey was to assess the number of healthcare providers (HCP) in ambulatory pediatric IBD care across Canadian tertiary-care centres. Methods Using a self-administered questionnaire, we examined available resources in academic pediatric centres within the Canadian Children IBD Network. The survey evaluated the number of HCP providing ambulatory care for children with IBD. Results All 12 tertiary pediatric gastroenterology centres participating in the network responded. Median full-time equivalent (FTE) of allied health professionals providing IBD care at each site was 1.0 (interquartile range (IQR) 0.6–1.0) nurse, 0.5 (IQR 0.2–0.8) dietitian, 0.3 (IQR 0.2–0.8) social worker, and 0.1 (IQR 0.02–0.3) clinical psychologists. The ratio of IBD patients to IBD physicians was 114 : 1 (range 31 : 1–537 : 1), patients to nurses/physician assistants 324 : 1 (range 150 : 1–900 : 1), dieticians 670 : 1 (range 250 : 1–4500 : 1), social workers 1558 : 1 (range 250 : 1–16000 : 1), and clinical psychologists 2910 : 1 (range 626 : 1–3200 : 1). Conclusions There was a wide variation in HCP support among Canadian centres. Future work will examine variation in care including patients' outcomes and satisfaction across Canadian centres. PMID:28593172

Criteria for Centers of Reference for pediatric diabetes--a European perspective.

PubMed

Danne, Thomas; Lion, Sylvia; Madaczy, Lazlo; Veeze, Henk; Raposo, Fillipe; Rurik, Imre; Aschemeier, Bärbel; Kordonouri, Olga

2012-09-01

'SWEET' is an acronym standing for 'Better control in pediatric and adolescent diabeteS: Working to crEate CEnTers of Reference (CORs)' and is based on a partnership of established national and European diabetes organizations such as International Diabetes Federation, Federation of European Nurses in Diabetes, and Primary Care Diabetes Europe (PCDE, www.sweet-project.eu). A three-level classification of centers has been put forward. In addition to centers for local care, SWEET collaborating centers on their way to being a COR have been defined. Peer-audited CORs with a continuous electronic documentation of at least 150 pediatric patients with diabetes treated by a multidisciplinary team based on the International Society for Pediatric and Adolescent Diabetes (ISPAD) Clinical Practice recommendations have been created in 12 European countries. In 2011, they cared for between 150 to more than 700 youth with diabetes with an average hemoglobin A1c between 7.6 and 9.2%. Although these clinics should not be regarded as representative for the whole country, the acknowledgment as COR includes a common objective of targets and guidelines as well as recognition of expertise in treatment and education at the center. In a first step, the SWEET Online platform allows 12 countries using 11 languages to connect to one unified diabetes database. Aggregate data are de-identified and exported for longitudinal health and economic data analysis. Through their network, the CORs wish to obtain political influence on a national and international level and to facilitate dissemination of new approaches and techniques. The SWEET project hopes to extend from the initial group of centers within countries, throughout Europe, and beyond with the help of the ISPAD network. © 2012 John Wiley & Sons A/S.

Antibiotic Resistance Patterns of Outpatient Pediatric Urinary Tract Infections

PubMed Central

Edlin, Rachel S.; Shapiro, Daniel J.; Hersh, Adam L.; Copp, Hillary L.

2014-01-01

Purpose We characterize the current national patterns of antibiotic resistance of outpatient pediatric urinary tract infection. Materials and Methods We examined outpatient urinary isolates from patients younger than 18 years in 2009 using The Surveillance Network®, a database with antibiotic susceptibility results and patient demographic data from 195 United States hospitals. We determined the prevalence and antibiotic resistance patterns for the 6 most common uropathogens, ie Escherichia coli, Proteus mirabilis, Klebsiella, Enterobacter, Pseudomonas aeruginosa and Enterococcus. We compared differences in uropathogen prevalence between males and females using chi-square analysis. Results We identified 25,418 outpatient urinary isolates. E. coli was the most common uropathogen overall but the prevalence of E. coli was higher among females (83%) than males (50%, p <0.001). Other common species among males were Enterococcus (17%), P. mirabilis (11%) and Klebsiella (10%). However, these uropathogens each accounted for 5% or less of female isolates (p <0.001). Resistance among E. coli was highest for trimethoprim-sulfamethoxazole (24%) but lower for nitrofurantoin (less than 1%) and cephalothin (15%). Compared to 2002 Surveillance Network data, E. coli resistance rates increased for trimethoprim-sulfamethoxazole (from 23% to 31% in males and from 20% to 23% in females) and ciprofloxacin (from 1% to 10% and from 0.6% to 4%, respectively). Conclusions E. coli remains the most common pediatric uropathogen. Although widely used, trimethoprim-sulfamethoxazole is a poor empirical choice for pediatric urinary tract infections in many areas due to high resistance rates. First-generation cephalosporins and nitrofurantoin are appropriate narrow-spectrum alternatives given their low resistance rates. Local antibiograms should be used to assist with empirical urinary tract infection treatment. PMID:23369720

The Effects of Industry Sponsorship on Comparator Selection in Trial Registrations for Neuropsychiatric Conditions in Children

PubMed Central

Dunn, Adam G.; Mandl, Kenneth D.; Coiera, Enrico; Bourgeois, Florence T.

2013-01-01

Pediatric populations continue to be understudied in clinical drug trials despite the increasing use of pharmacotherapy in children, particularly with psychotropic drugs. Most pertinent to the clinical selection of drug interventions are trials directly comparing drugs against other drugs. The aim was to measure the prevalence of active drug comparators in neuropsychiatric drug trials in children and identify the effects of funding source on comparator selection. We analyzed the selection of drugs and drug comparisons in clinical trials registered between January 2006 and May 2012. Completed and ongoing interventional trials examining treatments for six neuropsychiatric conditions in children were included. Networks of drug comparisons for each condition were constructed using information about the trial study arms. Of 421 eligible trial registrations, 228 (63,699 participants) were drug trials addressing ADHD (106 trials), autism spectrum disorders (47), unipolar depression (16), seizure disorders (38), migraines and other headaches (15), or schizophrenia (11). Active drug comparators were used in only 11.0% of drug trials while 44.7% used a placebo control and 44.3% no drug or placebo comparator. Even among conditions with well-established pharmacotherapeutic options, almost all drug interventions were compared to a placebo. Active comparisons were more common among trials without industry funding (17% vs. 8%, p=0.04). Trials with industry funding differed from non-industry trials in terms of the drugs studied and the comparators selected. For 73% (61/84) of drugs and 90% (19/21) of unique comparisons, trials were funded exclusively by either industry or non-industry. We found that industry and non-industry differed when choosing comparators and active drug comparators were rare for both groups. This gap in pediatric research activity limits the evidence available to clinicians treating children and suggests a need to reassess the design and funding of pediatric trials in order to optimize the information derived from pediatric participation in clinical trials. PMID:24376857

The effects of industry sponsorship on comparator selection in trial registrations for neuropsychiatric conditions in children.

PubMed

Dunn, Adam G; Mandl, Kenneth D; Coiera, Enrico; Bourgeois, Florence T

2013-01-01

Pediatric populations continue to be understudied in clinical drug trials despite the increasing use of pharmacotherapy in children, particularly with psychotropic drugs. Most pertinent to the clinical selection of drug interventions are trials directly comparing drugs against other drugs. The aim was to measure the prevalence of active drug comparators in neuropsychiatric drug trials in children and identify the effects of funding source on comparator selection. We analyzed the selection of drugs and drug comparisons in clinical trials registered between January 2006 and May 2012. Completed and ongoing interventional trials examining treatments for six neuropsychiatric conditions in children were included. Networks of drug comparisons for each condition were constructed using information about the trial study arms. Of 421 eligible trial registrations, 228 (63,699 participants) were drug trials addressing ADHD (106 trials), autism spectrum disorders (47), unipolar depression (16), seizure disorders (38), migraines and other headaches (15), or schizophrenia (11). Active drug comparators were used in only 11.0% of drug trials while 44.7% used a placebo control and 44.3% no drug or placebo comparator. Even among conditions with well-established pharmacotherapeutic options, almost all drug interventions were compared to a placebo. Active comparisons were more common among trials without industry funding (17% vs. 8%, p=0.04). Trials with industry funding differed from non-industry trials in terms of the drugs studied and the comparators selected. For 73% (61/84) of drugs and 90% (19/21) of unique comparisons, trials were funded exclusively by either industry or non-industry. We found that industry and non-industry differed when choosing comparators and active drug comparators were rare for both groups. This gap in pediatric research activity limits the evidence available to clinicians treating children and suggests a need to reassess the design and funding of pediatric trials in order to optimize the information derived from pediatric participation in clinical trials.

Opioid analgesia in mechanically ventilated children: results from the multicenter Measuring Opioid Tolerance Induced by Fentanyl study.

PubMed

Anand, Kanwaljeet J S; Clark, Amy E; Willson, Douglas F; Berger, John; Meert, Kathleen L; Zimmerman, Jerry J; Harrison, Rick; Carcillo, Joseph A; Newth, Christopher J L; Bisping, Stephanie; Holubkov, Richard; Dean, J Michael; Nicholson, Carol E

2013-01-01

To examine the clinical factors associated with increased opioid dose among mechanically ventilated children in the pediatric intensive care unit. Prospective, observational study with 100% accrual of eligible patients. Seven pediatric intensive care units from tertiary-care children's hospitals in the Collaborative Pediatric Critical Care Research Network. Four hundred nineteen children treated with morphine or fentanyl infusions. None. Data on opioid use, concomitant therapy, demographic and explanatory variables were collected. Significant variability occurred in clinical practices, with up to 100-fold differences in baseline opioid doses, average daily or total doses, or peak infusion rates. Opioid exposure for 7 or 14 days required doubling of the daily opioid dose in 16% patients (95% confidence interval 12%-19%) and 20% patients (95% confidence interval 16%-24%), respectively. Among patients receiving opioids for longer than 3 days (n = 225), this occurred in 28% (95% confidence interval 22%-33%) and 35% (95% confidence interval 29%-41%) by 7 or 14 days, respectively. Doubling of the opioid dose was more likely to occur following opioid infusions for 7 days or longer (odds ratio 7.9, 95% confidence interval 4.3-14.3; p < 0.001) or co-therapy with midazolam (odds ratio 5.6, 95% confidence interval 2.4-12.9; p < 0.001), and it was less likely to occur if morphine was used as the primary opioid (vs. fentanyl) (odds ratio 0.48, 95% confidence interval 0.25-0.92; p = 0.03), for patients receiving higher initial doses (odds ratio 0.96, 95% confidence interval 0.95-0.98; p < 0.001), or if patients had prior pediatric intensive care unit admissions (odds ratio 0.37, 95% confidence interval 0.15-0.89; p = 0.03). Mechanically ventilated children require increasing opioid doses, often associated with prolonged opioid exposure or the need for additional sedation. Efforts to reduce prolonged opioid exposure and clinical practice variation may prevent the complications of opioid therapy.

Pediatric oncology clinical trial participation where the geography is vast: Development of a clinical research system for tertiary and satellite centers in Ontario, Canada.

PubMed

Alexander, Sarah; Greenberg, Mark; Malkin, David; Portwine, Carol; Johnston, Donna; Silva, Mariana; Zelcer, Shayna; Sonshine, Samantha; Manzo, Janet; Bennett, Carla; Brodeur-Robb, Kathy; Deveault, Catherine; Ramachandran, Nivetha; Gibson, Paul

2018-04-01

Opportunities for participation in clinical trials are a core component of the care of children with cancer. In Ontario, many pediatric patients live long distances from their cancer center. This paper describes the work that was done in order to allow patients participating in Children's Oncology Group trials to receive care, including research protocol related care, jointly between the tertiary pediatric cancer center and the closer-to-home satellite center. The system is a pragmatic risk-based model, supporting excellence in care while ensuring good conduct of the research in compliance with applicable regulations and guidelines, including ethics oversight. © 2017 Wiley Periodicals, Inc.

StaR Child Health: improving global standards for child health research.

PubMed

Offringa, Martin; Needham, Allison C; Chan, Winnie W Y

2013-11-01

Standards for Research (StaR) in Child Health, founded in 2009, addresses the current scarcity of and deficiencies in pediatric clinical trials. StaR Child Health brings together leading international experts devoted to developing practical, evidence-based standards to enrich the reliability and relevance of pediatric clinical research. Through a systematic "knowledge to action" plan, StaR Child Health creates opportunities to improve the evidence base for child health across the world. To date, six standards have been published and four more are under development. It is now time to use these standards. Improving the design, conduct and reporting of pediatric clinical trials will ultimately advance the quality of health care provided to children across the globe. Crown Copyright © 2013. All rights reserved.

Defining the Boundaries of a Right to Adequate Protection: A New Lens on Pediatric Research Ethics.

PubMed

DeGrazia, David; Groman, Michelle; Lee, Lisa M

2017-04-01

We argue that the current ethical and regulatory framework for permissible risk levels in pediatric research can be helpfully understood in terms of children's moral right to adequate protection from harm. Our analysis provides a rationale for what we propose as the highest level of permissible risk in pediatric research without the prospect of direct benefit: what we call "relatively minor" risk. We clarify the justification behind the usual standards of "minimal risk" and "a minor increase over minimal risk" and explain why it is permissible to impose any risks at all on child participants who do not stand to benefit directly from enrollment in research. Finally, we illuminate some aspects of the concept of "best interests." Published by Oxford University Press on behalf of The Journal of Medicine and Philosophy Inc 2017.

Online resources in pediatric surgery: the new era of medical information.

PubMed

Raigani, Siavash; Numanoglu, Alp; Schwachter, Marc; Ponsky, Todd A

2014-08-01

Tele-education has the potential to facilitate rapid sharing and dissemination of current research and knowledge among pediatric surgeons around the world. Classically, the exchange of surgical research occurred via national surgical conferences, articles published in peer-reviewed journals, and textbooks. The advent of Web 2.0 and the rapid pace of technologic advancement have allowed knowledge, education, and research to be exchanged online. Virtual symposiums act as online conferences where participants present and debate new research and surgical techniques in real-time web meetings. Resource libraries allow up-to-date information to be archived and viewed at the user's convenience, bypassing the need to wait long periods for paper publications. Tele-education allows pediatric surgeons to connect and share ideas around the world, while saving time and money. Georg Thieme Verlag KG Stuttgart · New York.

Simulation in pediatric anesthesiology.

PubMed

Fehr, James J; Honkanen, Anita; Murray, David J

2012-10-01

Simulation-based training, research and quality initiatives are expanding in pediatric anesthesiology just as in other medical specialties. Various modalities are available, from task trainers to standardized patients, and from computer-based simulations to mannequins. Computer-controlled mannequins can simulate pediatric vital signs with reasonable reliability; however the fidelity of skin temperature and color change, airway reflexes and breath and heart sounds remains rudimentary. Current pediatric mannequins are utilized in simulation centers, throughout hospitals in-situ, at national meetings for continuing medical education and in research into individual and team performance. Ongoing efforts by pediatric anesthesiologists dedicated to using simulation to improve patient care and educational delivery will result in further dissemination of this technology. Health care professionals who provide complex, subspecialty care to children require a curriculum supported by an active learning environment where skills directly relevant to pediatric care can be developed. The approach is not only the most effective method to educate adult learners, but meets calls for education reform and offers the potential to guide efforts toward evaluating competence. Simulation addresses patient safety imperatives by providing a method for trainees to develop skills and experience in various management strategies, without risk to the health and life of a child. A curriculum that provides pediatric anesthesiologists with the range of skills required in clinical practice settings must include a relatively broad range of task-training devises and electromechanical mannequins. Challenges remain in defining the best integration of this modality into training and clinical practice to meet the needs of pediatric patients. © 2012 Blackwell Publishing Ltd.

A novel method for pediatric heart sound segmentation without using the ECG.

PubMed

Sepehri, Amir A; Gharehbaghi, Arash; Dutoit, Thierry; Kocharian, Armen; Kiani, A

2010-07-01

In this paper, we propose a novel method for pediatric heart sounds segmentation by paying special attention to the physiological effects of respiration on pediatric heart sounds. The segmentation is accomplished in three steps. First, the envelope of a heart sounds signal is obtained with emphasis on the first heart sound (S(1)) and the second heart sound (S(2)) by using short time spectral energy and autoregressive (AR) parameters of the signal. Then, the basic heart sounds are extracted taking into account the repetitive and spectral characteristics of S(1) and S(2) sounds by using a Multi-Layer Perceptron (MLP) neural network classifier. In the final step, by considering the diastolic and systolic intervals variations due to the effect of a child's respiration, a complete and precise heart sounds end-pointing and segmentation is achieved. Copyright 2009 Elsevier Ireland Ltd. All rights reserved.

Forward and store telemedicine using Motion Pictures Expert Group: a novel approach to pediatric tele-echocardiography.

PubMed

Woodson, Kristina E; Sable, Craig A; Cross, Russell R; Pearson, Gail D; Martin, Gerard R

2004-11-01

Live transmission of echocardiograms over integrated services digital network lines is accurate and has led to improvements in the delivery of pediatric cardiology care. Permanent archiving of the live studies has not previously been reported. Specific obstacles to permanent storage of telemedicine files have included the ability to produce accurate images without a significant increase in storage requirements. We evaluated the accuracy of Motion Pictures Expert Group (MPEG) digitization of incoming video streams and assessed the storage requirements of these files for infants in a real-time pediatric tele-echocardiography program. All major cardiac diagnoses were correctly diagnosed by review of MPEG images. MPEG file size ranged from 11.1 to 182 MB (56.5 +/- 29.9 MB). MPEG digitization during live neonatal telemedicine is accurate and provides an efficient method for storage. This modality has acceptable storage requirements; file sizes are comparable to other digital modalities.

Advanced Pediatric Brain Imaging Research and Training Program

DTIC Science & Technology

2014-10-01

death and disability in children. Recent advances in pediatric magnetic resonance imaging ( MRI ) techniques are revolutionizing our understanding of... MRI , brain injury. 16. SECURITY CLASSIFICATION OF: 17. LIMITATION OF ABSTRACT 18. NUMBER OF PAGES 19a. NAME OF RESPONSIBLE PERSON USAMRMC a...principles of pediatric brain injury and recovery following injury, as well as the clinical application of sophisticated MRI techniques that are

Outcome of Pediatric Critical Care Medicine Abstracts Presented at North American Academic National Meetings.

PubMed

Basu, Sonali; Pollack, Murray M

2017-05-05

Pediatric critical care medicine abstracts presented at North American national academic meetings have not been followed up to determine their publication outcomes. Our objective was to determine the following: 1) the proportion of these presentations that are published in peer-reviewed journals within 5 years; 2) the impact of trainee status on time to and success of publication; and 3) the quality of the research as reflected in the publishing journal's impact factor. Four years of abstracts (2007-2011) were reviewed from the American Academy of Pediatrics, Pediatric Academic Societies, and Society of Critical Care Medicine national meetings. Pediatric critical care medicine abstracts were delineated by the meeting or identified by keyword search. Data included mode of presentation, trainee status of first author, publication status within 5 years based on a PubMed search, trainee position in the journal of publication authorship list, and the impact factor of journal of publication. We evaluated 267 pediatric critical care medicine abstracts, 85-94 from each meeting. Overall, 41% were published, with the highest rate in Pediatric Academic Societies abstracts (54% Pediatric Academic Societies, 38% Society of Critical Care Medicine, and 33% American Academy of Pediatrics; p = 0.011). Mean time to publication was 22 (± 3) months and did not differ by conference or presentation mode. Journal first authorship was retained in 84%. Journal impact factor was highest in Society of Critical Care Medicine abstracts (3.38 Society of Critical Care Medicine, 2.64 Pediatric Academic Societies, and 1.92 American Academy of Pediatrics; p = 0.006). First author trainee status was not associated with publication rate, time to publication, and impact factor. A total of 100% of trainees but only 79% of nontrainees who published retained first authorship. Less than half of pediatric critical care medicine research abstracts presented at North American national academic meetings culminate in articles. Pediatric Academic Societies had the highest publication success rate, and Society of Critical Care Medicine abstracts were published in journals with the highest impact factors. All trainees who were first authors retained that status in the journal publications.

Computing the shape of brain networks using graph filtration and Gromov-Hausdorff metric.

PubMed

Lee, Hyekyoung; Chung, Moo K; Kang, Hyejin; Kim, Boong-Nyun; Lee, Dong Soo

2011-01-01

The difference between networks has been often assessed by the difference of global topological measures such as the clustering coefficient, degree distribution and modularity. In this paper, we introduce a new framework for measuring the network difference using the Gromov-Hausdorff (GH) distance, which is often used in shape analysis. In order to apply the GH distance, we define the shape of the brain network by piecing together the patches of locally connected nearest neighbors using the graph filtration. The shape of the network is then transformed to an algebraic form called the single linkage matrix. The single linkage matrix is subsequently used in measuring network differences using the GH distance. As an illustration, we apply the proposed framework to compare the FDG-PET based functional brain networks out of 24 attention deficit hyperactivity disorder (ADHD) children, 26 autism spectrum disorder (ASD) children and 11 pediatric control subjects.

Sponsors meet scientists to speed pediatric medicines development.

PubMed

Davis, Jonathan M; Smoyer, William E; Connor, Edward M; Huskins, W Charles; Pastern, Cindy; Purucker, Mary; Schrader, Elisabeth C; Jackson, Cynthia R; Kaskel, Frederick J; Hirschfeld, Steven

2015-03-18

The Point-Person Project, a child-health research initiative, enables rapid response to opportunities for participation in multicenter pediatric clinical trials. Copyright © 2015, American Association for the Advancement of Science.

Participatory methods in pediatric participatory research: a systematic review.

PubMed

Haijes, Hanneke A; van Thiel, Ghislaine J M W

2016-05-01

Meaningful child participation in medical research is seen as important. In order to facilitate further development of participatory research, we performed a systematic literature study to describe and assess the available knowledge on participatory methods in pediatric research. A search was executed in five databases: PubMed, CINAHL, PsycINFO, Scopus, and Cochrane. After careful screening of relevant papers, finally 24 documents were included in our analysis. Literature on participatory methods in pediatric research appears generally to be descriptive, whereby high-quality evidence is lacking. Overall, five groups of participatory methods for children could be distinguished: observational, verbal, written, visual, and active methods. The choice for one of these methods should be based on the child's age, on social and demographic characteristics, and on the research objectives. To date, these methods are still solely used for obtaining data, yet they are suitable for conducting meaningful participation. This may result in a successful partnership between children and researchers. Researchers conducting participatory research with children can use this systematic review in order to weigh the current knowledge about the participatory methods presented.

Detecting central fixation by means of artificial neural networks in a pediatric vision screener using retinal birefringence scanning.

PubMed

Gramatikov, Boris I

2017-04-27

Reliable detection of central fixation and eye alignment is essential in the diagnosis of amblyopia ("lazy eye"), which can lead to blindness. Our lab has developed and reported earlier a pediatric vision screener that performs scanning of the retina around the fovea and analyzes changes in the polarization state of light as the scan progresses. Depending on the direction of gaze and the instrument design, the screener produces several signal frequencies that can be utilized in the detection of central fixation. The objective of this study was to compare artificial neural networks with classical statistical methods, with respect to their ability to detect central fixation reliably. A classical feedforward, pattern recognition, two-layer neural network architecture was used, consisting of one hidden layer and one output layer. The network has four inputs, representing normalized spectral powers at four signal frequencies generated during retinal birefringence scanning. The hidden layer contains four neurons. The output suggests presence or absence of central fixation. Backpropagation was used to train the network, using the gradient descent algorithm and the cross-entropy error as the performance function. The network was trained, validated and tested on a set of controlled calibration data obtained from 600 measurements from ten eyes in a previous study, and was additionally tested on a clinical set of 78 eyes, independently diagnosed by an ophthalmologist. In the first part of this study, a neural network was designed around the calibration set. With a proper architecture and training, the network provided performance that was comparable to classical statistical methods, allowing perfect separation between the central and paracentral fixation data, with both the sensitivity and the specificity of the instrument being 100%. In the second part of the study, the neural network was applied to the clinical data. It allowed reliable separation between normal subjects and affected subjects, its accuracy again matching that of the statistical methods. With a proper choice of a neural network architecture and a good, uncontaminated training data set, the artificial neural network can be an efficient classification tool for detecting central fixation based on retinal birefringence scanning.

Stakeholder Engagement to Identify Priorities for Improving the Quality and Value of Critical Care.

PubMed

Stelfox, Henry T; Niven, Daniel J; Clement, Fiona M; Bagshaw, Sean M; Cook, Deborah J; McKenzie, Emily; Potestio, Melissa L; Doig, Christopher J; O'Neill, Barbara; Zygun, David

2015-01-01

Large amounts of scientific evidence are generated, but not implemented into patient care (the 'knowledge-to-care' gap). We identified and prioritized knowledge-to-care gaps in critical care as opportunities to improve the quality and value of healthcare. We used a multi-method community-based participatory research approach to engage a Network of all adult (n = 14) and pediatric (n = 2) medical-surgical intensive care units (ICUs) in a fully integrated geographically defined healthcare system serving 4 million residents. Participants included Network oversight committee members (n = 38) and frontline providers (n = 1,790). Network committee members used a modified RAND/University of California Appropriateness Methodology, to serially propose, rate (validated 9 point scale) and revise potential knowledge-to-care gaps as priorities for improvement. The priorities were sent to frontline providers for evaluation. Results were relayed back to all frontline providers for feedback. Initially, 68 knowledge-to-care gaps were proposed, rated and revised by the committee (n = 32 participants) over 3 rounds of review and resulted in 13 proposed priorities for improvement. Then, 1,103 providers (62% response rate) evaluated the priorities, and rated 9 as 'necessary' (median score 7-9). Several factors were associated with rating priorities as necessary in multivariable logistic regression, related to the provider (experience, teaching status of ICU) and topic (strength of supporting evidence, potential to benefit the patient, potential to improve patient/family experience, potential to decrease costs). A community-based participatory research approach engaged a diverse group of stakeholders to identify 9 priorities for improving the quality and value of critical care. The approach was time and cost efficient and could serve as a model to prioritize areas for research quality improvement across other settings.

The role of pediatricians as innovators in pediatric nutrition.

PubMed

Greer, Frank R

2010-01-01

Innovation is about making changes. When it comes to health care, innovations, though they may be something 'new', may not be beneficial if not demonstrated to be an improvement over what is current practice. Innovations in pediatric nutrition sometimes fall into this category. The establishment of safe water and milk supplies at the end of the 19th and beginning of the 20th centuries is viewed as one of the greatest advances in preventative medicine and truly was an 'innovation', with its dramatic impact on infant mortality. Other innovations in pediatric nutrition included the development of the caloric method of infant feeding which led to the large-scale adoption of a single infant formula. This required cooperation with industry and ultimately led to the development of life-saving specialty formulas for various disease states including inborn errors of metabolism. Over the last 50 years there have been further modifications of term infant formula that have included taurine, carnitine, nucleotides, whey proteins, PUFAs including decosahexenoic acid (DHA) and arachidonic acid, probiotics, and prebiotics. Many of these additions are of questionable benefit and are questioned as true innovations. Though the addition of novel nutrients to infant formula has been an area of great interest, more basic research (including randomized controlled trial) is needed to determine many pediatric nutrient requirements including the lower and upper limits of nutrients added to infant formula. Such research could be facilitated by institutions such as the US National Institute of Child Health whose establishment in 1962 was a significant 'innovation' as it led to advances in pediatric nutritional research. Much more research is needed to determine basic pediatric nutritional requirements and pediatricians should strive for such true innovations. Copyright © 2010 S. Karger AG, Basel.

Translating sickle cell guidelines into practice for primary care providers with Project ECHO

PubMed Central

Shook, Lisa M.; Farrell, Christina B.; Kalinyak, Karen A.; Nelson, Stephen C.; Hardesty, Brandon M.; Rampersad, Angeli G.; Saving, Kay L.; Whitten-Shurney, Wanda J.; Panepinto, Julie A.; Ware, Russell E.; Crosby, Lori E.

2016-01-01

Background Approximately 100,000 persons with sickle cell disease (SCD) live in the United States, including 15,000 in the Midwest. Unfortunately, many patients experience poor health outcomes due to limited access to primary care providers (PCPs) who are prepared to deliver evidence-based SCD care. Sickle Treatment and Outcomes Research in the Midwest (STORM) is a regional network established to improve care and outcomes for individuals with SCD living in Indiana, Illinois, Michigan, Minnesota, Ohio, and Wisconsin. Methods STORM investigators hypothesized that Project ECHO® methodology could be replicated to create a low-cost, high-impact intervention to train PCPs in evidence-based care for pediatric and young adult patients with SCD in the Midwest, called STORM TeleECHO. This approach utilizes video technology for monthly telementoring clinics consisting of didactic and case-based presentations focused on the National Heart, Lung and Blood Institute (NHLBI) evidence-based guidelines for SCD. Results Network leads in each of the STORM states assisted with developing the curriculum and are recruiting providers for monthly clinics. To assess STORM TeleECHO feasibility and acceptability, monthly attendance and satisfaction data are collected. Changes in self-reported knowledge, comfort, and practice patterns will be compared with pre-participation, and 6 and 12 months after participation. Conclusions STORM TeleECHO has the potential to increase implementation of the NHLBI evidence-based guidelines, especially increased use of hydroxyurea, resulting in improvements in the quality of care and outcomes for children and young adults with SCD. This model could be replicated in other pediatric chronic illness conditions to improve PCP knowledge and confidence in delivering evidence-based care. PMID:27887664

Pediatric Asthma

MedlinePlus

... Asthma (Pediatric) Find a Doctor Appointments & Questions Patient Education & Support Visiting Us Tests & Procedures Ways to Give National Jewish Health ... Programs Health Information Doctors & Departments Clinical Research & ... Training Contact Us Make a Donation Make an Appointment Patient Portal ...

The integration of psychology in pediatric oncology research and practice: collaboration to improve care and outcomes for children and families.

PubMed

Kazak, Anne E; Noll, Robert B

2015-01-01

Childhood cancers are life-threatening diseases that are universally distressing and potentially traumatic for children and their families at diagnosis, during treatment, and beyond. Dramatic improvements in survival have occurred as a result of increasingly aggressive multimodal therapies delivered in the context of clinical research trials. Nonetheless, cancers remain a leading cause of death in children, and their treatments have short- and long-term impacts on health and well-being. For over 35 years, pediatric psychologists have partnered with pediatric oncology teams to make many contributions to our understanding of the impact of cancer and its treatment on children and families and have played prominent roles in providing an understanding of treatment-related late effects and in improving quality of life. After discussing the incidence of cancer in children, its causes, and the treatment approaches to it in pediatric oncology, we present seven key contributions of psychologists to collaborative and integrated care in pediatric cancer: managing procedural pain, nausea, and other symptoms; understanding and reducing neuropsychological effects; treating children in the context of their families and other systems (social ecology); applying a developmental perspective; identifying competence and vulnerability; integrating psychological knowledge into decision making and other clinical care issues; and facilitating the transition to palliative care and bereavement. We conclude with a discussion of the current status of integrating knowledge from psychological research into practice in pediatric cancer. PsycINFO Database Record (c) 2015 APA, all rights reserved.

A unique linkage of administrative and clinical registry databases to expand analytic possibilities in pediatric heart transplantation research.

PubMed

Godown, Justin; Thurm, Cary; Dodd, Debra A; Soslow, Jonathan H; Feingold, Brian; Smith, Andrew H; Mettler, Bret A; Thompson, Bryn; Hall, Matt

2017-12-01

Large clinical, research, and administrative databases are increasingly utilized to facilitate pediatric heart transplant (HTx) research. Linking databases has proven to be a robust strategy across multiple disciplines to expand the possible analyses that can be performed while leveraging the strengths of each dataset. We describe a unique linkage of the Scientific Registry of Transplant Recipients (SRTR) database and the Pediatric Health Information System (PHIS) administrative database to provide a platform to assess resource utilization in pediatric HTx. All pediatric patients (1999-2016) who underwent HTx at a hospital enrolled in the PHIS database were identified. A linkage was performed between the SRTR and PHIS databases in a stepwise approach using indirect identifiers. To determine the feasibility of using these linked data to assess resource utilization, total and post-HTx hospital costs were assessed. A total of 3188 unique transplants were identified as being present in both databases and amenable to linkage. Linkage of SRTR and PHIS data was successful in 3057 (95.9%) patients, of whom 2896 (90.8%) had complete cost data. Median total and post-HTx hospital costs were $518,906 (IQR $324,199-$889,738), and $334,490 (IQR $235,506-$498,803) respectively with significant differences based on patient demographics and clinical characteristics at HTx. Linkage of the SRTR and PHIS databases is feasible and provides an invaluable tool to assess resource utilization. Our analysis provides contemporary cost data for pediatric HTx from the largest US sample reported to date. It also provides a platform for expanded analyses in the pediatric HTx population. Copyright © 2017 Elsevier Inc. All rights reserved.

Effectiveness of anti-TNFα for Crohn disease: research in a pediatric learning health system.

PubMed

Forrest, Christopher B; Crandall, Wallace V; Bailey, L Charles; Zhang, Peixin; Joffe, Marshall M; Colletti, Richard B; Adler, Jeremy; Baron, Howard I; Berman, James; del Rosario, Fernando; Grossman, Andrew B; Hoffenberg, Edward J; Israel, Esther J; Kim, Sandra C; Lightdale, Jenifer R; Margolis, Peter A; Marsolo, Keith; Mehta, Devendra I; Milov, David E; Patel, Ashish S; Tung, Jeanne; Kappelman, Michael D

2014-07-01

ImproveCareNow (ICN) is the largest pediatric learning health system in the nation and started as a quality improvement collaborative. To test the feasibility and validity of using ICN data for clinical research, we evaluated the effectiveness of anti-tumor necrosis factor-α (anti-TNFα) agents in the management of pediatric Crohn disease (CD). Data were collected in 35 pediatric gastroenterology practices (April 2007 to March 2012) and analyzed as a sequence of nonrandomized trials. Patients who had moderate to severe CD were classified as initiators or non-initiators of anti-TNFα therapy. Among 4130 patients who had pediatric CD, 603 were new users and 1211 were receiving anti-TNFα therapy on entry into ICN. During a 26-week follow-up period, rate ratios obtained from Cox proportional hazards models, adjusting for patient and disease characteristics and concurrent medications, were 1.53 (95% confidence interval [CI], 1.20-1.96) for clinical remission and 1.74 (95% CI, 1.33-2.29) for corticosteroid-free remission. The rate ratio for corticosteroid-free remission was comparable to the estimate produced by the adult SONIC study, which was a randomized controlled trial on the efficacy of anti-TNFα therapy. The number needed to treat was 5.2 (95% CI, 3.4-11.1) for clinical remission and 5.0 (95% CI, 3.4-10.0) for corticosteroid-free remission. In routine pediatric gastroenterology practice settings, anti-TNFα therapy was effective at achieving clinical and corticosteroid-free remission for patients who had Crohn disease. Using data from the ICN learning health system for the purpose of observational research is feasible and produces valuable new knowledge. Copyright © 2014 by the American Academy of Pediatrics.

Dental traumatology: an orphan in pediatric dentistry?

PubMed

Andreasen, Jens Ove; Lauridsen, Eva; Daugaard-Jensen, Jette

2009-01-01

Traumatic dental injuries are very frequent during childhood and adolescence. In fact, 2 out of 3 children have suffered a traumatic dental injury before adulthood. This fact links dental traumatology to pediatric dentistry. Unfortunately, this is not reflected by active participation by pediatric dentists in acute treatment, follow-up, and research. To examine the status of pediatric dentistry in relation to dental trauma, a publication analysis was undertaken in 1980, 1990, 2000, and 2007 about trauma articles published in 4 pediatric journals: journal of Dentistry for Children, Pediatric Dentistry, The journal of Pedodontics, and the International journal of Pediatric Dentistry. This study shows an average publication rate of trauma articles of approximately 3 percent of all articles published and with no improvement in later decennia. If only clinical studies are considered (leaving out case reports), the publication rate is less than 1 percent--completely out of proportion to the size of the problem dental trauma impose in children.

Herbert Rackow and Ernest Salanitre: the emergence of pediatric anesthesia as a specialty in the United States.

PubMed

Friesen, Robert H

2015-07-01

Herbert Rackow and Ernest Salanitre were pediatric anesthesiologists at Babies Hospital at the Columbia-Presbyterian Medical Center in New York whose work spanned three decades beginning in the early 1950s. Their pioneering research included studies of the uptake and elimination of inhalational anesthetics and of the risk of cardiac arrest in infants and children. They were actively involved in the development of pediatric anesthesia as a specialty, and their efforts contributed to inter-disciplinary collaboration and to the formation of the Section on Anesthesiology of the American Academy of Pediatrics. Their 1969 review article, 'Modern Concepts in Pediatric Anesthesiology', provides a fascinating view of pediatric anesthesia 50 years ago. In 1990, they were jointly awarded the Robert M. Smith award by the Section on Anesthesiology of the American Academy of Pediatrics. © 2015 John Wiley & Sons Ltd.

Issues impacting therapeutic outcomes in pediatric patients: an overview.

PubMed

Kalra, Atin; Goindi, Shishu

2014-01-01

The quest for achieving optimal therapeutic outcomes in pediatric patients has evaded the healthcare professionals for long and often lack of child specific dosage forms and the associated events that follow with it have been considered to be major contributor towards suboptimal outcomes. Consequently, there have been sustained efforts over the years to address this issue with the enactment of legislations like Best Pharmaceutical for Children Act (BPCA), Pediatric Research Equity Act (PREA) and Pediatric Regulation by European Union (EU) to incentivise the participation of pharmaceutical industry towards development of child friendly dosage forms. Initiatives taken in past by organisations like World Health Organisation (WHO) and Drugs for Neglected Diseases Initiative (DNDi) to spur the development of child friendly dosage forms has helped to address issues pertaining to management of Human Immunodeficiency Virus (HIV) and malaria in pediatric patients. Present efforts aimed at developing child friendly dosage forms include oro-dispersible platforms including thin films and mini-tablets. Despite these leaps and advancements in developing better dosage forms for children, lower therapeutic outcomes in pediatric patients continue to remain an unresolved issue because of detrimental effects of additional factors such as parents understanding of label instructions and complexities involved in executing pediatric clinical studies thus requiring a concerted effort from pharmaceutical companies, academic researchers, parents and healthcare providers to work for better treatment outcomes in children.

Deficits in social cognition and response flexibility in pediatric bipolar disorder.

PubMed

McClure, Erin B; Treland, Julia E; Snow, Joseph; Schmajuk, Mariana; Dickstein, Daniel P; Towbin, Kenneth E; Charney, Dennis S; Pine, Daniel S; Leibenluft, Ellen

2005-09-01

Little is known about neuropsychological and social-cognitive function in patients with pediatric bipolar disorder. Identification of specific deficits and strengths that characterize pediatric bipolar disorder would facilitate advances in diagnosis, treatment, and research on pathophysiology. The purpose of this study was to test the hypothesis that youths with bipolar disorder would perform more poorly than matched healthy comparison subjects on measures of social cognition, motor inhibition, and response flexibility. Forty outpatients with pediatric bipolar disorder and 22 comparison subjects (no differences in age, gender, and IQ) completed measures of social cognition (the pragmatic judgment subtest of the Comprehensive Assessment of Spoken Language, facial expression recognition subtests of the Diagnostic Analysis of Nonverbal Accuracy Scale, the oral expression subtest of the Test of Language Competence), inhibition and response flexibility (stop and stop-change tasks), and motor inhibition (continuous performance tasks). Pediatric bipolar disorder patients performed more poorly than comparison subjects on social-cognitive measures (pragmatic judgment of language, facial expression recognition) and on a task requiring response flexibility. These deficits were present in euthymic patients. Differences between patients and comparison subjects could not be attributed to comorbid attention deficit hyperactivity disorder. Findings of impaired social cognition and response flexibility in youths with pediatric bipolar disorder suggest continuity between pediatric bipolar disorder and adult bipolar disorder. These findings provide a foundation for neurocognitive research designed to identify the neural mechanisms underlying these deficits.

NASPGHAN Capsule Endoscopy Clinical Report.

PubMed

Friedlander, Joel A; Liu, Quin Y; Sahn, Benjamin; Kooros, Koorosh; Walsh, Catharine M; Kramer, Robert E; Lightdale, Jenifer R; Khlevner, Julie; McOmber, Mark; Kurowski, Jacob; Giefer, Matthew J; Pall, Harpreet; Troendle, David M; Utterson, Elizabeth C; Brill, Herbert; Zacur, George M; Lirio, Richard A; Lerner, Diana G; Reynolds, Carrie; Gibbons, Troy E; Wilsey, Michael; Liacouras, Chris A; Fishman, Douglas S

2017-03-01

Wireless capsule endoscopy (CE) was introduced in 2000 as a less invasive method to visualize the distal small bowel in adults. Because this technology has advanced it has been adapted for use in pediatric gastroenterology. Several studies have described its clinical use, utility, and various training methods but pediatric literature regarding CE is limited. This clinical report developed by the Endoscopic and Procedures Committee of the North American Society of Pediatric Gastroenterology, Hepatology and Nutrition outlines the current literature, and describes the recommended current role, use, training, and future areas of research for CE in pediatrics.

Music therapy CD creation for initial pediatric radiation therapy: a mixed methods analysis.

PubMed

Barry, Philippa; O'Callaghan, Clare; Wheeler, Greg; Grocke, Denise

2010-01-01

A mixed methods research design was used to investigate the effects of a music therapy CD (MTCD) creation intervention on pediatric oncology patients' distress and coping during their first radiation therapy treatment. The music therapy method involved children creating a music CD using interactive computer-based music software, which was "remixed" by the music therapist-researcher to extend the musical material. Eleven pediatric radiation therapy outpatients aged 6 to 13 years were randomly assigned to either an experimental group, in which they could create a music CD prior to their initial treatment to listen to during radiation therapy, or to a standard care group. Quantitative and qualitative analyses generated multiple perceptions from the pediatric patients, parents, radiation therapy staff, and music therapist-researcher. Ratings of distress during initial radiation therapy treatment were low for all children. The comparison between the two groups found that 67% of the children in the standard care group used social withdrawal as a coping strategy, compared to 0% of the children in the music therapy group; this trend approached significance (p = 0.076). MTCD creation was a fun, engaging, and developmentally appropriate intervention for pediatric patients, which offered a positive experience and aided their use of effective coping strategies to meet the demands of their initial radiation therapy treatment.

Pediatric dental chair vs. traditional dental chair: a pediatric dentist's poll.

PubMed

Barjatya, Khushboo; Vatsal, Ankur; Kambalimath, Halaswamy V; Kulkarni, Vinay Kumar; Reddy, Naveen Banda

2015-01-01

Proper positioning of the child patient, can not only have positive ramifications for the operator's posture, comfort, and career longevity - it can also lead to better treatment and increased productivity. The aim of the survey questionnaire was to assess the utilization, need, and attitude concerning dental chairs among pediatric dentist while working on and managing the child patient. The questions were structured using adobe forms central online software, regarding the user-friendliness of pediatric dental chair vs. traditional adult dental chair available in the market. Our result shows that out of 337 respondents, 79% worked on pediatric dental chair, whereas 21% had no experience of it. Of these 79% pediatric dentist, 48% preferred pediatric dental chair. But pediatric dental problem still has certain disadvantages like higher cost, leg space problem, lower availability, etc. During the research it was found that ergonomics and usability issues were the main problems. Thus, pediatric dental chair is not so popular in the current scenario. This study allowed for general ideas for the improvement of dental chairs and thus improved dental chair would fill the gap in the current scenario.

Bioethical Issues in Conducting Pediatric Dentistry Clinical Research.

PubMed

Garrocho-Rangel, Arturo; Cerda-Cristerna, Bernardino; Pozos-Guillen, Amaury

Pediatric clinical research on new drugs and biomaterials involves children in order to create valid and generalizable knowledge. Research on vulnerable populations, such as children, is necessary but only admissible when researchers strictly follow methodological and ethical standards, together with the respect to human rights; and very especially when the investigation cannot be conducted with other population or when the potential benefits are specifically for that age group. Clinical research in Pediatric Dentistry is not an exception. The aim of the present article was to provide the bioethical principles (with respect to the child/parents' autonomy, benefit/risk analysis, and distributive justice), and recommendations, including informed consent, research ethics committees, conflict of interest, and the "equipoise" concept. Current and future worldwide oral health research in children and adolescents must be conducted incorporating their perspectives in the decision-making process as completely as possible. This concept must be carefully considered when a dental clinical study research is going to be planned and conducted, especially in the case of randomized controlled trials, in which children will be recruited as participants.

Researchers’ Perceptions of the Ethical Implications of Pharmacogenomics Research with Children

PubMed Central

Avard, D.; Silverstein, T.; Sillon, G.; Joly, Y.

2009-01-01

Background This paper presents the results of an exploratory qualitative study that assesses Canadian pediatric researchers’ perceptions of a pre-selected group of ethical issues raised by pharmacogenomics research with children. Methods As a pilot study, we conducted semi-structured telephone interviews with Canadian pediatric pharmacogenomic researchers. The interviews were guided by the following themes: (1) benefits and risks of inclusion, (2) the consent/assent process, and (3) the return of research results. Results Issues about assent, consent, risks and benefits, as well as the communication of results were addressed by the respondents. Some issues, such as the unique vulnerability of children, the long term privacy concerns associated with biobanking, additional core elements that need to be discussed and included in the consent/assent forms, as well as the challenges of communicating research results in a pediatric research were not explicitly identified by the respondents. Conclusion Further consideration should be given to address the ethical challenges of including children in pharmacogenomics research. This exploratory study indicates that further guidance is needed if children are to be protected and yet benefit from such research. PMID:19204423

Readability of the Written Study Information in Pediatric Research in France

PubMed Central

Ménoni, Véronique; Lucas, Noël; Leforestier, Jean-François; Doz, François; Chatellier, Gilles; Jacqz-Aigain, Evelyne; Giraud, Carole; Tréluyer, Jean-Marc; Chappuy, Hélène

2011-01-01

Background The aim was to evaluate the readability of research information leaflets (RIL) for minors asked to participate in biomedical research studies and to assess the factors influencing this readability. Methods and Findings All the pediatric protocols from three French pediatric clinical research units were included (N = 104). Three criteria were used to evaluate readability: length of the text, Flesch's readability score and presence of illustrations. We compared the readability of RIL to texts specifically written for children (school textbooks, school exams or extracts from literary works). We assessed the effect of protocol characteristics on readability. The RIL had a median length of 608 words [350 words, 25th percentile; 1005 words, 75th percentile], corresponding to two pages. The readability of the RIL, with a median Flesch score of 40 [30; 47], was much poorer than that of pediatric reference texts, with a Flesch score of 67 [60; 73]. A small proportion of RIL (13/91; 14%) were illustrated. The RIL were longer (p<0.001), more readable (p<0.001) and more likely to be illustrated (p<0.009) for industrial than for institutional sponsors. Conclusion Researchers should routinely compute the reading ease of study information sheets and make greater efforts to improve the readability of written documents for potential participants. PMID:21494689

Pediatric psychopharmacological research in the post EU regulation 1901/2006 era.

PubMed

Schmäl, Christine; Becker, Katja; Berg, Ruth; Brünger, Michael; Lehmkuhl, Gerd; Oehler, Klaus-Ulrich; Ruppert, Thorsten; Staudter, Claus; Trott, Götz-Erik; Dittmann, Ralf W

2014-11-01

Although the use of psychotropic medications in child and adolescent psychiatry in Germany is on the increase, most compounds are in fact prescribed "off-label" because of a lack of regulatory approval in these age groups. In 2007, the European Parliament introduced Regulation 1901/2006 concerning medicinal products in pediatric populations, with a subsequent amendment in the form of Regulation 1902/2006. The main aim of this legislation was to encourage research and clinical trials in children and adolescents, and thus promote the availability of medications with marketing authorization for these age groups. Furthermore, initiatives such as the European 7th Framework Program of the European Union now offer substantial funding for pediatric pharmacological research. At a recent Congress of the German Society for Child and Adolescent Psychiatry and Psychotherapy (DGKJP), experts from the field and the pharmaceutical industry held a symposium with lay representatives in order to discuss attitudes toward, and experience with, pediatric psychopharmacology research in Germany since 2007. Several areas of concern were identified. The present paper derives from that symposium and provides an overview of these opinions, which remain crucial to the field. A wider discussion of how to facilitate psychopharmacological research in Germany in order to optimize the treatment and welfare of children and adolescents with psychiatric disorders is now warranted.

Treating Family Violence in a Pediatric Hospital: A Program of Training, Research, and Services.

ERIC Educational Resources Information Center

White, Kathleen M.; And Others

This monograph describes a project developed at Children's Hospital of Boston as an innovative, exemplary program of training, research, and services for the treatment of family violence in a pediatric hospital, with a particular focus on child abuse and neglect. Chapter 1 explains why it is important to study the area of family violence,…

Reliability and Validity of the Pediatric Quality of Life Inventory with Individuals with Intellectual and Developmental Disabilities

ERIC Educational Resources Information Center

Viecili, Michelle A.; Weiss, Jonathan A.

2015-01-01

The Pediatric Quality of Life Inventory (PedsQL) measures health-related quality of life, a growing area of research, particularly among individuals with disabilities. This research is necessary to fully understand the varied needs of the population and, ultimately, ensure that those needs are being met. The current study assessed the reliability…

Pediatric, Adolescent, and Maternal AIDS Branch. Report to the National Advisory Child Health and Human Development Council.

ERIC Educational Resources Information Center

National Inst. of Child Health and Human Development (NIH), Bethesda, MD. Center for Research for Mothers and Children.

This report describes current research activities and future plans of the Pediatric, Adolescent, and Maternal AIDS (PAMA) Branch of the National Institute of Child Health and Human Development's Center for Research for Mothers and Children. The mission statement of the Branch notes that PAMA develops, implements, and directs a wide range of…

The role of librarians in teaching evidence-based medicine to pediatric residents: a survey of pediatric residency program directors

PubMed Central

Boykan, Rachel; Jacobson, Robert M.

2017-01-01

Objective: The research sought to identify the general use of medical librarians in pediatric residency training, to define the role of medical librarians in teaching evidence-based medicine (EBM) to pediatric residents, and to describe strategies and curricula for teaching EBM used in pediatric residency training programs. Methods: We sent a 13-question web-based survey through the Association of Pediatric Program Directors to 200 pediatric residency program directors between August and December 2015. Results: A total of 91 (46%) pediatric residency program directors responded. Most (76%) programs had formal EBM curricula, and more than 75% of curricula addressed question formation, searching, assessment of validity, generalizability, quantitative importance, statistical significance, and applicability. The venues for teaching EBM that program directors perceived to be most effective included journal clubs (84%), conferences (44%), and morning report (36%). While 80% of programs utilized medical librarians, most of these librarians assisted with scholarly or research projects (74%), addressed clinical questions (62%), and taught on any topic not necessarily EBM (58%). Only 17% of program directors stated that librarians were involved in teaching EBM on a regular basis. The use of a librarian was not associated with having an EBM curriculum but was significantly associated with the size of the program. Smaller programs were more likely to utilize librarians (100%) than were medium (71%) or large programs (75%). Conclusions: While most pediatric residency programs have an EBM curriculum and engage medical librarians in various ways, librarians’ expertise in teaching EBM is underutilized. Programs should work to better integrate librarians’ expertise, both in the didactic and clinical teaching of EBM. PMID:28983199

Clinical trial studies drug for pediatric diffuse intrinsic pontine glioma (DIPG) treatment | Center for Cancer Research

Cancer.gov

Diffuse intrinsic pontine gliomas (DIPGs) are difficult to treat and are the leading cause of brain tumor deaths in children. Katherine Warren, M.D., of the Pediatric Oncology Branch is leading a pediatric clinical trial to determine the safety and best dose of panobinostat, a histone deacetylase inhibitor, for slowing or stopping the growth of DIPGs. Read more…

77 FR 47853 - Request for Notification From Industry Organizations Interested in Participating in Selection...

Federal Register 2010, 2011, 2012, 2013, 2014

2012-08-10

... pediatric labeling dispute involving FDA-regulated products, (9) pediatric ethical issues including research... DEPARTMENT OF HEALTH AND HUMAN SERVICES Food and Drug Administration [Docket No. FDA-2012-N-0781...

The global pediatric antiretroviral market: analyses of product availability and utilization reveal challenges for development of pediatric formulations and HIV/AIDS treatment in children.

PubMed

Waning, Brenda; Diedrichsen, Ellen; Jambert, Elodie; Bärnighausen, Till; Li, Yun; Pouw, Mieke; Moon, Suerie

2010-10-17

Important advances in the development and production of quality-certified pediatric antiretroviral (ARV) formulations have recently been made despite significant market disincentives for manufacturers. This progress resulted from lobbying and innovative interventions from HIV/AIDS activists, civil society organizations, and international organizations. Research on uptake and dispersion of these improved products across countries and international organizations has not been conducted but is needed to inform next steps towards improving child health. We used information from the World Health Organization Prequalification Programme and the United States Food and Drug Administration to describe trends in quality-certification of pediatric formulations and used 7,989 donor-funded, pediatric ARV purchase transactions from 2002-2009 to measure uptake and dispersion of new pediatric ARV formulations across countries and programs. Prices for new pediatric ARV formulations were compared to alternative dosage forms. Fewer ARV options exist for HIV/AIDS treatment in children than adults. Before 2005, most pediatric ARVs were produced by innovator companies in single-component solid and liquid forms. Five 2-in1 and four 3-in-1 generic pediatric fixed-dose combinations (FDCs) in solid and dispersible forms have been quality-certified since 2005. Most (67%) of these were produced by one quality-certified manufacturer. Uptake of new pediatric FDCs outside of UNITAID is low. UNITAID accounted for 97-100% of 2008-2009 market volume. In total, 33 and 34 countries reported solid or dispersible FDC purchases in 2008 and 2009, respectively, but most purchases were made through UNITAID. Only three Global Fund country recipients reported purchase of these FDCs in 2008. Prices for pediatric FDCs were considerably lower than liquids but typically higher than half of an adult FDC. Pediatric ARV markets are more fragile than adult markets. Ensuring a long-term supply of quality, well-adapted ARVs for children requires ongoing monitoring and improved understanding of global pediatric markets, including country-based research to explain and address low uptake of new, improved formulations. Continued innovation in pediatric ARV development may be threatened by outdated procurement practices failing to connect clinicians making prescribing decisions, supply chain staff dealing with logistics, donors, international organizations, and pharmaceutical manufacturers. Perceptions of global demand must be better informed by accurate estimates of actual country-level demand.

The global pediatric antiretroviral market: analyses of product availability and utilization reveal challenges for development of pediatric formulations and HIV/AIDS treatment in children

PubMed Central

2010-01-01

Background Important advances in the development and production of quality-certified pediatric antiretroviral (ARV) formulations have recently been made despite significant market disincentives for manufacturers. This progress resulted from lobbying and innovative interventions from HIV/AIDS activists, civil society organizations, and international organizations. Research on uptake and dispersion of these improved products across countries and international organizations has not been conducted but is needed to inform next steps towards improving child health. Methods We used information from the World Health Organization Prequalification Programme and the United States Food and Drug Administration to describe trends in quality-certification of pediatric formulations and used 7,989 donor-funded, pediatric ARV purchase transactions from 2002-2009 to measure uptake and dispersion of new pediatric ARV formulations across countries and programs. Prices for new pediatric ARV formulations were compared to alternative dosage forms. Results Fewer ARV options exist for HIV/AIDS treatment in children than adults. Before 2005, most pediatric ARVs were produced by innovator companies in single-component solid and liquid forms. Five 2-in1 and four 3-in-1 generic pediatric fixed-dose combinations (FDCs) in solid and dispersible forms have been quality-certified since 2005. Most (67%) of these were produced by one quality-certified manufacturer. Uptake of new pediatric FDCs outside of UNITAID is low. UNITAID accounted for 97-100% of 2008-2009 market volume. In total, 33 and 34 countries reported solid or dispersible FDC purchases in 2008 and 2009, respectively, but most purchases were made through UNITAID. Only three Global Fund country recipients reported purchase of these FDCs in 2008. Prices for pediatric FDCs were considerably lower than liquids but typically higher than half of an adult FDC. Conclusion Pediatric ARV markets are more fragile than adult markets. Ensuring a long-term supply of quality, well-adapted ARVs for children requires ongoing monitoring and improved understanding of global pediatric markets, including country-based research to explain and address low uptake of new, improved formulations. Continued innovation in pediatric ARV development may be threatened by outdated procurement practices failing to connect clinicians making prescribing decisions, supply chain staff dealing with logistics, donors, international organizations, and pharmaceutical manufacturers. Perceptions of global demand must be better informed by accurate estimates of actual country-level demand. PMID:20950492

Social Competence in Pediatric Brain Tumor Survivors: Application of a Model from Social Neuroscience and Developmental Psychology

PubMed Central

Hocking, Matthew C.; McCurdy, Mark; Turner, Elise; Kazak, Anne E.; Noll, Robert B.; Phillips, Peter; Barakat, Lamia P.

2014-01-01

Pediatric brain tumor (BT) survivors are at risk for psychosocial late effects across many domains of functioning, including neurocognitive and social. The literature on the social competence of pediatric BT survivors is still developing and future research is needed that integrates developmental and cognitive neuroscience research methodologies to identify predictors of survivor social adjustment and interventions to ameliorate problems. This review discusses the current literature on survivor social functioning through a model of social competence in childhood brain disorder and suggests future directions based on this model. Interventions pursuing change in survivor social adjustment should consider targeting social ecological factors. PMID:25382825

Become the PPUPET Master: Mastering Pressure Ulcer Risk Assessment With the Pediatric Pressure Ulcer Prediction and Evaluation Tool (PPUPET).

PubMed

Sterken, David J; Mooney, JoAnn; Ropele, Diana; Kett, Alysha; Vander Laan, Karen J

2015-01-01

Hospital acquired pressure ulcers (HAPU) are serious, debilitating, and preventable complications in all inpatient populations. Despite evidence of the development of pressure ulcers in the pediatric population, minimal research has been done. Based on observations gathered during quarterly HAPU audits, bedside nursing staff recognized trends in pressure ulcer locations that were not captured using current pressure ulcer risk assessment tools. Together, bedside nurses and nursing leadership created and conducted multiple research studies to investigate the validity and reliability of the Pediatric Pressure Ulcer Prediction and Evaluation Tool (PPUPET). Copyright © 2015 Elsevier Inc. All rights reserved.

FDA working to ensure the safety of medical devices used in the pediatric population.

PubMed

Flack, Marilyn Neder; Gross, Thomas P; Reid, Joy Samuels; Mills, Thalia T; Francis, Jacqueline

2012-12-01

Special initiatives exist in FDA's Center for Devices and Radiological Health (CDRH), the Center for Drug Evaluation and Research, and the Center for Biologics Evaluation and Research to ensure the safety and effectiveness of medical products used in the vulnerable pediatric population. This article focuses on the special programs, projects, and special studies implemented by CDRH to ensure this safety and effectiveness in devices used in pediatric patients throughout the devices' total product life-cycles. Pediatricians play a major role in keeping medical devices safe for use in children by reporting device problems to FDA. Published by Elsevier Inc.

Interview: From anesthesia to global health: a journey in children's pain research.

PubMed

Finley, G Allen

2013-01-01

G Allen Finley talks to Roshaine Gunawardana, Commissioning Editor: Dr Allen Finley is a pediatric anesthesiologist who has worked for over 20 years in pain research and management. He is Professor of Anesthesia and Psychology at Dalhousie University (NS, Canada), and holds the inaugural Dr Stewart Wenning Chair in Pediatric Pain Management at the IWK Health Centre in Halifax. He has published over 100 papers in peer-reviewed journals and has lectured widely, with more than 230 invited presentations on six continents. He started the PEDIATRIC-PAIN e-mail discussion list in 1993, bringing together pain researchers and clinicians from over 40 countries. His own research and educational projects have recently taken him to Jordan, Thailand, China, Brazil and elsewhere. His main interest is pain service development and advocacy for improved pain care for children around the world, and he is co-leader of the ChildKind International Initiative.

Our Journal Unites Us: Global Responsibilities and Possibilities for Pediatric Physical Therapy.

PubMed

Van Sant, Ann F

2018-04-01

This article was designed to describe personal and social responsibilities for strengthening the science of pediatric physical therapy and effective international research collaboration and communication. Common flaws in research design and analysis are reviewed with recommendations for developing research students' design and analytical skills. Our social responsibility to be informed by global knowledge is highlighted. Barriers to scientific collaboration and communication including international disparities in scientific development and language barriers are presented. Suggestions to reduce these barriers are outlined. The importance of free access to scientific literature in developing countries is reviewed. The journal should assume a leadership role in building a strong science of pediatric physical therapy through encouraging personal and social responsibility in research and serving as a model of international collaboration and communication. Treatment for children with movement disorders will be improved by stronger science, international collaboration, and communication.

Practice guidelines for music interventions with hospitalized pediatric patients.

PubMed

Stouffer, Janice W; Shirk, Beverly J; Polomano, Rosemary C

2007-12-01

Music therapy is an effective complementary approach that can achieve specific therapeutic outcomes in the clinical management of pediatric patients. Growing research on music interventions has generated scientific knowledge about how this modality benefits patients and has formed the basis for effective protocols that can be used in practice. Although it can be challenging to translate research-based protocols into routine clinical care at the bedside, it is essential that music therapy interventions be aligned with evidence-based information and that accepted standards be established by the music therapy discipline to achieve the greatest benefit. The importance of partnerships between nurses and music therapists is emphasized to enhance the success of music-based treatments. This discussion synthesizes research findings that can be used to design pediatric practice guidelines in the application of music therapy.

What is known about parents' treatment decisions? A narrative review of pediatric decision making.

PubMed

Lipstein, Ellen A; Brinkman, William B; Britto, Maria T

2012-01-01

With the increasing complexity of decisions in pediatric medicine, there is a growing need to understand the pediatric decision-making process. To conduct a narrative review of the current research on parent decision making about pediatric treatments and identify areas in need of further investigation. Articles presenting original research on parent decision making were identified from MEDLINE (1966-6/2011), using the terms "decision making," "parent," and "child." We included papers focused on treatment decisions but excluded those focused on information disclosure to children, vaccination, and research participation decisions. We found 55 papers describing 52 distinct studies, the majority being descriptive, qualitative studies of the decision-making process, with very limited assessment of decision outcomes. Although parents' preferences for degree of participation in pediatric decision making vary, most are interested in sharing the decision with the provider. In addition to the provider, parents are influenced in their decision making by changes in their child's health status, other community members, prior knowledge, and personal factors, such as emotions and faith. Parents struggle to balance these influences as well as to know when to include their child in decision making. Current research demonstrates a diversity of influences on parent decision making and parent decision preferences; however, little is known about decision outcomes or interventions to improve outcomes. Further investigation, using prospective methods, is needed in order to understand how to support parents through the difficult treatment decisions.

National practice patterns and outcomes of pediatric nephrectomy: comparison between urology and general surgery.

PubMed

Suson, Kristina D; Wolfe-Christensen, Cortney; Elder, Jack S; Lakshmanan, Yegappan

2015-05-01

In adults nephrectomy is under the purview of urologists, but pediatric urologists and pediatric general surgeons perform extirpative renal surgery in children. We compared the contemporary performance and outcome of all-cause nephrectomy at pediatric hospitals as performed by pediatric urologists and pediatric general surgeons. We queried the Pediatric Health Information System to identify patients 0 to 18 years old who were treated with nephrectomy between 2004 and 2013 by pediatric urologists and pediatric general surgeons. Data points included age, gender, severity level, mortality risk, complications and length of stay. Patients were compared by APR DRG codes 442 (kidney and urinary tract procedures for malignancy) and 443 (kidney and urinary tract procedures for nonmalignancy). Pediatric urologists performed more all-cause nephrectomies. While pediatric urologists were more likely to operate on patients with benign renal disease, pediatric general surgeons were more likely to operate on children with malignancy. Patients on whom pediatric general surgeons operated had a higher average severity level and were at greater risk for mortality. After controlling for differences patients without malignancy operated on by pediatric urologists had a shorter length of stay, and fewer medical and surgical complications. There was no difference in length of stay, or medical or surgical complications in patients with malignancy. Overall compared to pediatric general surgeons more nephrectomies are performed by pediatric urologists. Short-term outcomes, including length of stay and complication rates, appear better in this data set in patients without malignancy who undergo nephrectomy by pediatric urologists but there is no difference in outcomes when nephrectomy is performed for malignancy. Copyright © 2015 American Urological Association Education and Research, Inc. Published by Elsevier Inc. All rights reserved.

Gray matter abnormalities in pediatric autism spectrum disorder: a meta-analysis with signed differential mapping.

PubMed

Liu, Jieke; Yao, Li; Zhang, Wenjing; Xiao, Yuan; Liu, Lu; Gao, Xin; Shah, Chandan; Li, Siyi; Tao, Bo; Gong, Qiyong; Lui, Su

2017-08-01

The gray matter abnormalities revealed by magnetic resonance imaging are inconsistent, especially in pediatric individuals with autism spectrum disorder (ASD) (age < 18 years old), a phenomenon possibly related to the core pathophysiology of ASD. The purpose of our meta-analysis was to identify and map the specific gray matter abnormalities in pediatric ASD individuals thereby exploring the potential effects of clinical and demographic characteristics of these gray matter changes. A systematic search was conducted to identify voxel-based morphometry studies in pediatric individuals with ASD. The effect-size signed differential mapping method was used to quantitatively estimate the regional gray matter abnormalities in pediatric ASD individuals. Meta-regression was used to examine the associations among age, gender, intelligence quotient, symptom severity and gray matter changes. Fifteen studies including 364 pediatric individuals with ASD (male = 282, age = 10.3 ± 4.4 years) and 377 healthy controls (male = 289, age = 10.5 ± 4.2 years) were included. Pediatric ASD individuals showed significant gray matter increases in the right angular gyrus, left superior and middle frontal gyrus, left precuneus, left inferior occipital gyrus and right inferior temporal gyrus, most of which involving the default mode network, and decreases in the left cerebellum and left postcentral gyrus. The meta-regression analysis showed that the repetitive behavior scores of the Autism Diagnostic Interview-Revised were positively associated with increased gray matter volumes in the right angular gyrus. Increased rather than decreased gray matter volume, especially involving the angular gyrus and prefrontal cortex may be the core pathophysiology in the early course of ASD.

Color Perception in Pediatric Patient Room Design: American versus Korean Pediatric Patients.

PubMed

Phillip Park, Jin Gyu; Park, Changbae

2013-01-01

This study simultaneously addresses the issues of the scarcity of information about pediatric patient color preferences, conflicting findings about the impact of culture on color preferences, and limitations of previous research instruments. Effects of culture and gender on color preferences were investigated using American and Korean pediatric patients. Much of the existing research in environmental design has focused on environments for healthy children and adults, but those findings cannot be confidently applied to environments for pediatric patients. In previous studies, the impact of culture on color preferences has been suggested, though the effects appear to vary. Moreover, the results of previous studies were typically based on perceptions of small color chips, which are different from seeing a color on wall surfaces. Previous studies also failed to control for confounding variables such as color attributes and light sources. Instead of using color chips, this study used physical model simulation to investigate environmental color preferences in real contexts. Cultural difference was found in white. Other than white, no significant cultural difference was found. Gender differences were found across both of the groups. Korean pediatric patients showed significantly higher preference scores for white than Americans did. Other than white, both groups reported blue and green as their most preferred colors; white was the least preferred. Both groups reported similar gender effects. Overall, male patients reported significantly lower preference scores for red and purple than female patients did. These results can help healthcare providers and professionals better understand appropriate colors for pediatric populations. Evidence-based design, healing environment, patients, pediatric, satisfaction.

From Paper to Electron

PubMed Central

Anderson, Kent R.

2000-01-01

The Internet represents a different type of technology for publishers of scientific, technical, and medical journals. It is not a technology that sustains current markets and creates new efficiencies but is, rather, a disruptive technology that could radically alter market forces, profit expectations, and business models. This paper is a translation and amplification of the research done in this area, applied to a large-circulation new science journal, Pediatrics. The findings suggest that the journal of the future will be electronic, have a less volatile cost structure, be supported more by services than by content, be less able to rely on subscription revenues, and abandon certain elements of current value networks. It also provides a possible framework for other publishers to use to evaluate their own journals relative to this disruptive technology. PMID:10833160

Viewpoint: the future of research in pediatric allergy: what should the focus be?

PubMed

Van Bever, Hugo P S; Lee, Bee Wah; Shek, Lynette Pei-Chi; Shek, Lynette

2012-02-01

Allergic diseases have been increasing during the last three decades, and exact reasons for this are still debated. Despite intense ongoing research, a lot of aspects of allergic diseases are still poorly understood, resulting in limitations in current therapeutic approach to allergies. In this viewpoint, important unanswered research questions are raised mainly on novel therapeutic approaches to allergic children, and suggestions for future research are raised. Three aspects of pediatric allergy are distinguished: the prevention, control, and cure. © 2011 John Wiley & Sons A/S.

Optimizing Research to Speed Up Availability of Pediatric Antiretroviral Drugs and Formulations.

PubMed

Penazzato, Martina; Gnanashanmugam, Devasena; Rojo, Pablo; Lallemant, Marc; Lewis, Linda L; Rocchi, Francesca; Saint Raymond, Agnes; Ford, Nathan; Hazra, Rohan; Giaquinto, Carlo; Belew, Yodit; Gibb, Diana M; Abrams, Elaine J

2017-06-01

Globally 1.8 million children are living with human immunodeficiency virus (HIV), yet only 51% of those eligible actually start treatment. Research and development (R&D) for pediatric antiretrovirals (ARVs) is a lengthy process and lags considerably behind drug development in adults. Providing safe, effective, and well-tolerated drugs for children remains critical to ensuring scale-up globally. We review current approaches to R&D for pediatric ARVs and suggest innovations to enable simplified, faster, and more comprehensive strategies to develop optimal formulations. Several approaches could be adopted, including focusing on a limited number of prioritized formulations and strengthening existing partnerships to ensure that pediatric investigation plans are developed early in the drug development process. Simplified and more efficient mechanisms to undertake R&D need to be put in place, and financing mechanisms must be made more sustainable. Lessons learned from HIV should be shared to support progress in developing pediatric formulations for other diseases, including tuberculosis and viral hepatitis. © The Author 2017. Published by Oxford University Press for the Infectious Diseases Society of America. All rights reserved. For permissions, e-mail: journals.permissions@oup.com.

The management of pediatric systemic lupus erythematosus.

PubMed

Ardoin, Stacy P; Schanberg, Laura E

2005-12-01

Most children and adolescents with systemic lupus erythematosus (SLE) now survive into adulthood, leading the pediatric rheumatology community to focus on preventing long-term complications of SLE, including atherosclerosis, obesity, and osteoporosis, and their treatment. Unfortunately, because of the paucity of data in pediatric SLE, little is known about epidemiology, long-term outcome, and optimal treatment. Most research focuses on adults with SLE, but pediatric SLE differs significantly from adult SLE in many aspects, including disease expression, approaches to pharmacologic intervention, management of treatment toxicity, and psychosocial issues. Children and adolescents with SLE require specialized, multidisciplinary care. Treatment can be optimized by early recognition of disease flares and complications, minimizing medication toxicity, educating families about prevention, promoting school performance, addressing concerns about reproductive health, and negotiating the transition to adult-centered medical care. Developmentally appropriate concerns about pain, appearance, and peers often affect treatment adherence and must be addressed by the health-care team. Research in pediatric SLE is desperately needed and provides a unique opportunity to understand how developmental immunology and the hormonal changes associated with puberty affect the pathophysiology of SLE.

Fathers’ Perceived Reasons for Their Underrepresentation in Child Health Research and Strategies to Increase Their Involvement

PubMed Central

Charles, Jo N.; Khandpur, Neha; Nelson, Timothy J.

2017-01-01

Purpose Examine fathers’ perceived reasons for their lack of inclusion in pediatric research and strategies to increase their participation. Description We conducted expert interviews with researchers and practitioners (N = 13) working with fathers to inform the development of an online survey. The survey—which measured fathers’ perceived reasons for their underrepresentation in pediatric research, recommended recruitment venues, and research personnel and study characteristics valued by fathers—was distributed online and in-person to fathers. Assessment Respondents included 303 fathers. Over 80 % of respondents reported that fathers are underrepresented in pediatric research because they have not been asked to participate. Frequently recommended recruitment venues included community sports events (52 %), social service programs (48 %) and the internet (60 %). Compared with white fathers, more non-white fathers recommended public transit (19 % vs. 10 %, p = .02), playgrounds (16 % vs. 6 %, p = .007) and barber shops (34 % vs. 14 %, p <.0001) and fewer recommended doctors’ offices (31 % vs. 43 %, p = .046) as recruitment venues. Compared with residential fathers (100 % resident with the target child), more non-residential fathers recommended social services programs (45 % vs. 63 %, p = .03) and public transit (10 % vs. 27 %, p = .001) and fewer recommended the workplace (17 % vs. 40 %, p = .002) as recruitment venues. Study brevity, perceived benefits for fathers and their families, and the credibility of the lead organization were valued by fathers. Conclusion Fathers’ participation in pediatric research may increase if researchers explicitly invite father to participate, target father-focused recruitment venues, clearly communicate the benefits of the research for fathers and their families and adopt streamlined study procedures. PMID:27473093

Parent perspectives on privacy and governance for a pediatric repository of non-biological, research data.

PubMed

Manhas, Kiran P; Page, Stacey; Dodd, Shawn X; Letourneau, Nicole; Ambrose, Aleta; Cui, Xinjie; Tough, Suzanne C

2015-02-01

Research data repositories (RDRs) are data storage entities where data can be submitted, stored, and subsequently accessed for purposes beyond the original intent. There is little information relating to non-biological RDRs, nor considerations regarding pediatric data storage and re-use. We examined parent perspectives on pediatric, non-biological RDRs. Qualitative, descriptive methods including both interviews and focus groups were used. Purposive sampling of adult participants in two provincial birth cohorts yielded 19 interviewees and 18 focus group participants (4 groups). Transcripts were analyzed by thematic content analysis. Parent research participants strongly supported the sharing of their own, and their child's, non-biological research data. Four themes emerged: that altruism has limits, that participants have ongoing privacy concerns, that some participants need the assurance of congruent values between themselves and researchers/research questions, and that opinions diverge for some governance issues. The establishment of RDRs is important and maximizes participants', researchers', and funders' investments. Participants as data donors have concerns relating to privacy, relationships, and governance that must be considered in RDR development. © The Author(s) 2014.

Neuropathological research at the "Deutsche Forschungsanstalt fuer Psychiatrie" (German Institute for Psychiatric Research) in Munich (Kaiser-Wilhelm-Institute). Scientific utilization of children's organs from the "Kinderfachabteilungen" (Children's Special Departments) at Bavarian State Hospitals.

PubMed

Steger, Florian

2006-09-01

During National Socialism, the politically motivated interest in psychiatric genetic research lead to the founding of research departments specialized in pathological-anatomical brain research, the two Kaiser Wilhelm-Institutes (KWI) in Berlin and Munich. The latter was indirectly provided with brain material by Bavarian State Hospitals, to three of which "Kinderfachabteilungen" (Special Pediatric Units) were affiliated. As children became victims of the systematically conducted child "euthanasia" in these Special Pediatric Units, this paper will address the question whether and to which extent the organs from victims of child "euthanasia" were used for (neuro-) pathological research at the KWI in Munich. By means of case studies and medical histories (with focus on the situation in Kaufbeuren-Irsee), I will argue that pediatric departments on a regular base delivered slide preparations, that the child "euthanasia" conduced in these departments systematically contributed to neuropathological research and that slide preparations from victims of child "euthanasia" were used in scientific publications after 1945.

45 CFR 147.138 - Patient protections.

Code of Federal Regulations, 2010 CFR

2010-10-01

... participating primary care provider for a child by a participant, beneficiary, or enrollee, the plan or issuer... osteopathic) who specializes in pediatrics as the child's primary care provider if the provider participates in the network of the plan or issuer and is available to accept the child. In such a case, the plan...

Altered White Matter Microstructure in Adolescents with Major Depression: A Preliminary Study

ERIC Educational Resources Information Center

Cullen, Kathryn R.; Klimes-Dougan, Bonnie; Muetzel, Ryan; Mueller, Bryon A.; Camchong, Jazmin; Houri, Alaa; Kurma, Sanjiv; Lim, Kelvin O.

2010-01-01

Objective: Major depressive disorder (MDD) occurs frequently in adolescents, but the neurobiology of depression in youth is poorly understood. Structural neuroimaging studies in both adult and pediatric populations have implicated frontolimbic neural networks in the pathophysiology of MDD. Diffusion tensor imaging (DTI), which measures white…

Point-of-care ultrasonography by pediatric emergency physicians. Policy statement.

PubMed

Marin, Jennifer R; Lewiss, Resa E

2015-04-01

Point-of-care ultrasonography is increasingly being used to facilitate accurate and timely diagnoses and to guide procedures. It is important for pediatric emergency physicians caring for patients in the emergency department to receive adequate and continued point-of-care ultrasonography training for those indications used in their practice setting. Emergency departments should have credentialing and quality assurance programs. Pediatric emergency medicine fellowships should provide appropriate training to physician trainees. Hospitals should provide privileges to physicians who demonstrate competency in point-of-care ultrasonography. Ongoing research will provide the necessary measures to define the optimal training and competency assessment standards. Requirements for credentialing and hospital privileges will vary and will be specific to individual departments and hospitals. As more physicians are trained and more research is completed, there should be one national standard for credentialing and privileging in point-of-care ultrasonography for pediatric emergency physicians.

Pharmacologic studies in vulnerable populations: Using the pediatric experience.

PubMed

Zimmerman, Kanecia; Gonzalez, Daniel; Swamy, Geeta K; Cohen-Wolkowiez, Michael

2015-11-01

Historically, few data exist to guide dosing in children and pregnant women. Multiple barriers to inclusion of these vulnerable populations in clinical trials have led to this paucity of data. However, federal legislation targeted at pediatric therapeutics, innovative clinical trial design, use of quantitative clinical pharmacology methods, pediatric thought leadership, and collaboration have successfully overcome many existing barriers. This success has resulted in improved knowledge on pharmacokinetics, safety, and efficacy of therapeutics in children. To date, research in pregnant women has not been characterized by similar success. Wide gaps in knowledge remain despite the common use of therapeutics in pregnancy. Given the similar barriers to drug research and development in pediatric and pregnant populations, the route toward success in children may serve as a model for the advancement of drug development and appropriate drug administration in pregnant women. Copyright © 2015 Elsevier Inc. All rights reserved.

Effects of leadership characteristics on pediatric registered nurses' job satisfaction.

PubMed

Roberts-Turner, Reneé; Hinds, Pamela S; Nelson, John; Pryor, Juanda; Robinson, Nellie C; Wang, Jichuan

2014-01-01

Job satisfaction levels among registered nurses (RNs) influence RN recruitment, retention, turnover, and patient outcomes. Researchers examining the relationship between characteristics of nursing leadership and RN job satisfaction have treated RNs as a monolithic group with little research on the satisfaction of hospital-based pediatric RNs. This study assessed the relationship of transformational and transactional nursing leadership characteristics and RN job satisfaction reported by pediatric RNs. This single site study included 935 hospital-based pediatric RNs who completed validated survey items regarding nursing leadership and job satisfaction. A structural equation model (SEM) was applied to assess how autonomy (transformational leadership) and distributive justice (transactional leadership) influence RN job satisfaction, and how RN socio-demographic characteristics influence job satisfaction via autonomy and distributive justice. Findings revealed that both autonomy and distributive justice had significant positive effects on RN job satisfaction but the largest source of influence was autonomy.

Optimal design in pediatric pharmacokinetic and pharmacodynamic clinical studies.

PubMed

Roberts, Jessica K; Stockmann, Chris; Balch, Alfred; Yu, Tian; Ward, Robert M; Spigarelli, Michael G; Sherwin, Catherine M T

2015-03-01

It is not trivial to conduct clinical trials with pediatric participants. Ethical, logistical, and financial considerations add to the complexity of pediatric studies. Optimal design theory allows investigators the opportunity to apply mathematical optimization algorithms to define how to structure their data collection to answer focused research questions. These techniques can be used to determine an optimal sample size, optimal sample times, and the number of samples required for pharmacokinetic and pharmacodynamic studies. The aim of this review is to demonstrate how to determine optimal sample size, optimal sample times, and the number of samples required from each patient by presenting specific examples using optimal design tools. Additionally, this review aims to discuss the relative usefulness of sparse vs rich data. This review is intended to educate the clinician, as well as the basic research scientist, whom plan on conducting a pharmacokinetic/pharmacodynamic clinical trial in pediatric patients. © 2015 John Wiley & Sons Ltd.

Towards a new era in fetal medicine in the Nordic countries.

PubMed

Sitras, Vasilis

2016-08-01

Fetal medicine is a subspecialty of obstetrics investigating the development, growth and disease of the human fetus. The advances in fetal imaging (ultrasonography, MRI) and molecular diagnostic techniques, together with the possibility of intervention in utero, make fetal medicine an important, rapidly developing field within women's healthcare. Therefore, a variety of specialists, such as neonatologists, pediatric cardiologists, medical geneticists, radiologists and pediatric surgeons, are necessary to adjunct in the diagnosis and treatment of the fetus as a patient. In this commentary, we provide a description of some organizational and educational aspects of fetal medicine in the Nordic countries, using examples of the management of specific conditions such as aneuploidy screening, red cell allo-immunization and fetal interventions. Clearly, there are several cultural, legal, organizational and practical differences between the Nordic countries; these are not necessarily negative, given the high standards of care in all Nordic countries. The scope of the newly founded Nordic Network of Fetal Medicine is to enhance cooperation in clinical practice, education and research between the participant countries. Hopefully, this initiative will find the necessary political and economic support from the national authorities and bring a new era in the field of fetal medicine in the Nordic region. © 2016 Nordic Federation of Societies of Obstetrics and Gynecology.

Adderall for All: A Defense of Pediatric Neuroenhancement.

PubMed

Flanigan, Jessica

2013-08-20

I argue that young patients should be able to access neuroenhancing drugs without a diagnosis of ADHD. The current framework of consent for pediatric patients can be adapted to accommodate neuroenhancement. After a brief overview of pediatric neuroenhancement, I develop three arguments in favor of greater acceptance of neuroenhancement for young patients. First, ADHD is not relevantly different from other disadvantages that could be treated with stimulant medication. Second, establishing a legitimate framework for pediatric neuroenhancement would mitigate the bad effects of diversion and improve research on neuroenhancement and ADHD. Third, some pediatric patients have rights to access neuroenhancements. I then consider several objections to pediatric neuroenhancement. I address concerns about addiction, advertising, authentic development, the parent-child relationship and equal opportunity and conclude that these concerns may inform a framework for prescribing neuroenhancement but they do not justify limits on prescribing.

Exemplar pediatric collaborative improvement networks: achieving results.

PubMed

Billett, Amy L; Colletti, Richard B; Mandel, Keith E; Miller, Marlene; Muething, Stephen E; Sharek, Paul J; Lannon, Carole M

2013-06-01

A number of pediatric collaborative improvement networks have demonstrated improved care and outcomes for children. Regionally, Cincinnati Children's Hospital Medical Center Physician Hospital Organization has sustained key asthma processes, substantially increased the percentage of their asthma population receiving "perfect care," and implemented an innovative pay-for-performance program with a large commercial payor based on asthma performance measures. The California Perinatal Quality Care Collaborative uses its outcomes database to improve care for infants in California NICUs. It has achieved reductions in central line-associated blood stream infections (CLABSI), increased breast-milk feeding rates at hospital discharge, and is now working to improve delivery room management. Solutions for Patient Safety (SPS) has achieved significant improvements in adverse drug events and surgical site infections across all 8 Ohio children's hospitals, with 7700 fewer children harmed and >$11.8 million in avoided costs. SPS is now expanding nationally, aiming to eliminate all events of serious harm at children's hospitals. National collaborative networks include ImproveCareNow, which aims to improve care and outcomes for children with inflammatory bowel disease. Reliable adherence to Model Care Guidelines has produced improved remission rates without using new medications and a significant increase in the proportion of Crohn disease patients not taking prednisone. Data-driven collaboratives of the Children's Hospital Association Quality Transformation Network initially focused on CLABSI in PICUs. By September 2011, they had prevented an estimated 2964 CLABSI, saving 355 lives and $103,722,423. Subsequent improvement efforts include CLABSI reductions in additional settings and populations.

Detection of Brain Reorganization in Pediatric Multiple Sclerosis Using Functional MRI

DTIC Science & Technology

2014-10-01

Unclassified b. ABSTRACT Unclassified c. THIS PAGE Unclassified Unclassified 19b. TELEPHONE NUMBER (include area code ) Standard Form 298 (Rev. 8-98...Research titled: “Passive fMRI mapping of language function for pediatric epilepsy surgery : validation using Wada, ECS, and FMAER” 2. Invited talk to...The mapping of language is important in pediatric patients who will undergo resection surgery near cortical regions essential for language function

Pediatric Psychosocial Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management | Center for Cancer Research

Cancer.gov

The 2nd Edition of the handbook, Pediatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management, by Oxford Press, 2015 fills an important niche, as it provides practical hands-on information on many aspects of psychological and psychiatric aspects of pediatric oncology care.  It is organized with sections addressing specific clinical

Reporting of interventions and "standard of care" control arms in pediatric clinical trials: a quantitative analysis.

PubMed

Yu, Ashley M; Balasubramanaiam, Bannuya; Offringa, Martin; Kelly, Lauren E

2018-06-13

In pediatric medicine, the usual treatment received by children ("standard of care") varies across centers. Evaluations of new treatments often compare to the existing "standard of care" to determine if a treatment is more effective, has a better safety profile, or costs less. The objective of our study was to evaluate intervention and "standard of care" control arms reported in published pediatric clinical trials. Pediatric clinical trials, published in 2014, reporting the use of a "standard of care" control arm were included. Duplicate assessment of reporting completeness was done using the 12-item TIDieR (Template for Intervention Description and Replication) checklist for both the "standard of care" control arms and intervention arms within the same published study. Following screening, 214 pediatric trials in diverse therapeutic areas were included. Several different terms were used to describe "standard of care." There was a significant difference between the mean reported TIDieR checklist items of "standard of care" control arms (5.81 (SD 2.13) and intervention arms (8.45 (SD 1.39, p < 0.0001). Reporting of intervention and "standard of care" control arms in pediatric clinical trials should be improved as current "standard of care" reporting deficiencies limit reproducibility of research and may ultimately contribute to research waste.

Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue | Center for Cancer Research

Cancer.gov

Pediatric oncology psychosocial professionals collaborated with an interdisciplinary group of experts and stakeholders and developed evidence-based standards for pediatric psychosocial care. Given the breadth of research evidence and traditions of clinical care, 15 standards were derived. Each standard is based on a systematic review of relevant literature and used the AGREE

Pediatric Oncology Branch - Psychosocial Support and Research Program-Educational Materials | Center for Cancer Research

Cancer.gov

Educational Resources The Pediatric Oncology Branch has produced a number of educational and therapeutic materials to help the children we serve learn about their condition and cope with the challenges they might face as a result of their illness. If you are interested in any of these resources, contact Lori Wiener, Ph.D., at wienerl@mail.nih.gov.

Internationalization: the Hong Kong-China experience as a model for collaborative education in Asia.

PubMed

Tam, Paul K H; Wong, Kenneth K Y; Li, Long; Zhang, J Z

2013-10-01

The Hong Kong model for collaboration in education in Asia is based on internationalization. Hong Kong benefits from being an international city combining an Eastern heritage and a Western society. The University of Hong Kong ranks among the world's top 25 universities (2012/2013 QS world university rankings), and its Division of Paediatric Surgery has an international reputation in research and training. In the past two decades, Hong Kong has leading roles in major international pediatric surgical organizations including Pacific Association of Pediatric Surgeons, International Pediatric Endosurgery Group, Asian Association of Pediatric Surgeons and World Federation of Associations of Pediatric Surgeons. While Hong Kong has close collaboration with Japan and other advanced economies, the talk will focus on our transfer of international experience to Mainland China. (1) A Train-the-Trainer scheme consisting of a 1-year structured education program for next-generation leaders from selected centers enabled replication and proliferation of similar training nationwide. (2) A series of laparoscopic workshops resulted in training of over 1,300 surgeons in basic and advanced skills in minimally invasive surgery within 5 years and the establishment of a national specialist organization overseeing development and quality assurance. (3) A series of Cross-Strait Symposia on Pediatric Oncology established the foundation of multidisciplinary, multicenter collaboration in education and research in Mainland China, Taiwan and Hong Kong. (4) Initiation of a scientific writing course will enhance surgical research and training in China. The Hong Kong experience may serve as a model of collaboration with other developing economies in Asia.

Pediatric neuropsychology: toward subspecialty designation.

PubMed

Baron, Ida Sue; Wills, Karen; Rey-Casserly, Celiane; Armstrong, Kira; Westerveld, Michael

2011-08-01

Clinical neuropsychology is a rapidly expanding field of study in the psychological sciences whose practitioners are expert in the assessment, treatment, and research of individuals with known or suspected central nervous system disease or disorder. Pediatric neuropsychology has emerged as a distinct subspecialty area with related education, training, and clinical expertise for a growing number of neuropsychologists. This paper details the numerous steps taken by two affiliated organizations, the American Board of Clinical Neuropsychology and its membership organization, the American Academy of Clinical Neuropsychology, in the interest of the larger pediatric neuropsychology community and in pediatric neuropsychology subspecialty development.

Should pediatric patients wait for HLA-DR-matched renal transplants?

PubMed

Gritsch, H A; Veale, J L; Leichtman, A B; Guidinger, M K; Magee, J C; McDonald, R A; Harmon, W E; Delmonico, F L; Ettenger, R B; Cecka, J M

2008-10-01

Graft survival rates from deceased donors aged 35 years or less among all primary pediatric kidney transplant recipients in the United States between 1996 and 2004 were retrospectively examined to determine the effect of HLA-DR mismatches on graft survival. Zero HLA-DR-mismatched kidneys had statistically comparable 5-year graft survival (71%), to 1-DR-mismatched kidneys (69%) and 2-DR-mismatched kidneys (71%). When compared to donors less than 35 years of age, the relative rate of allograft failure was 1.32 (p = 0.0326) for donor age greater than or equal to age 35. There was no statistical increase in the odds of developing a panel-reactive antibody (PRA) greater than 30% at the time of second waitlisting, based upon the degree of HLA-A, -B or -DR mismatch of the first transplant, nor was there a 'dose effect' when more HLA antigens were mismatched between the donor and recipient. Therefore, pediatric transplant programs should utilize the recently implemented Organ Procurement and Transplantation Network's (OPTN)allocation policy, which prioritizes pediatric recipients to receive kidneys from deceased donors less than 35 years of age, and should not turn down such kidney offers to wait for a better HLA-DR-matched kidney.

Cognitive Development and Learning in the Pediatric Organ Transplant Recipient.

ERIC Educational Resources Information Center

Hobbs, Steven A.; Sexson, Sandra B.

1993-01-01

This article reviews studies evaluating neurocognitive changes following organ transplantation in pediatric end-stage renal and liver disease. Findings suggest possible neurocognitive benefits associated with organ transplantation. Recommendations are made for methodological improvements in future research. (DB)

Researchers', Regulators', and Sponsors' Views on Pediatric Clinical Trials: A Multinational Study.

PubMed

Joseph, Pathma D; Craig, Jonathan C; Tong, Allison; Caldwell, Patrina H Y

2016-10-01

The last decade has seen dramatic changes in the regulatory landscape to support more trials involving children, but child-specific challenges and inequitable conduct across income regions persist. The goal of this study was to describe the attitudes and opinions of stakeholders toward trials in children, to inform additional strategies to promote more high-quality, relevant pediatric trials across the globe. Key informant semi-structured interviews were conducted with stakeholders (researchers, regulators, and sponsors) who were purposively sampled from low- to middle-income countries and high-income countries. The transcripts were thematically analyzed. Thirty-five stakeholders from 10 countries were interviewed. Five major themes were identified: addressing pervasive inequities (paucity of safety and efficacy data, knowledge disparities, volatile environment, double standards, contextual relevance, market-driven forces, industry sponsorship bias and prohibitive costs); contending with infrastructural barriers (resource constraints, dearth of pediatric trial expertise, and logistical complexities); navigating complex ethical and regulatory frameworks ("draconian" oversight, ambiguous requirements, exploitation, excessive paternalism and precariousness of coercion versus volunteerism); respecting uniqueness of children (pediatric research paradigms, child-appropriate approaches, and family-centered empowerment); and driving evidence-based child health (advocacy, opportunities, treatment access, best practices, and research prioritization). Stakeholders acknowledge that changes in the regulatory environment have encouraged more trials in children, but they contend that inequities and political, regulatory, and resource barriers continue to exist. Embedding trials as part of routine clinical care, addressing the unique needs of children, and streamlining regulatory approvals were suggested. Stakeholders recommended increasing international collaboration, establishing centralized trials infrastructure, and aligning research to child health priorities to encourage trials that address global child health care needs. Copyright © 2016 by the American Academy of Pediatrics.

Network Modeling of microRNA-mRNA Interactions in Neuroblastoma Tumorigenesis Identifies miR-204 as a Direct Inhibitor of MYCN.

PubMed

Ooi, Chi Yan; Carter, Daniel R; Liu, Bing; Mayoh, Chelsea; Beckers, Anneleen; Lalwani, Amit; Nagy, Zsuzsanna; De Brouwer, Sara; Decaesteker, Bieke; Hung, Tzong-Tyng; Norris, Murray D; Haber, Michelle; Liu, Tao; De Preter, Katleen; Speleman, Frank; Cheung, Belamy B; Marshall, Glenn M

2018-06-15

Neuroblastoma is a pediatric cancer of the sympathetic nervous system where MYCN amplification is a key indicator of poor prognosis. However, mechanisms by which MYCN promotes neuroblastoma tumorigenesis are not fully understood. In this study, we analyzed global miRNA and mRNA expression profiles of tissues at different stages of tumorigenesis from TH-MYCN transgenic mice, a model of MYCN-driven neuroblastoma. On the basis of a Bayesian learning network model in which we compared pretumor ganglia from TH-MYCN +/+ mice to age-matched wild-type controls, we devised a predicted miRNA-mRNA interaction network. Among the miRNA-mRNA interactions operating during human neuroblastoma tumorigenesis, we identified miR-204 as a tumor suppressor miRNA that inhibited a subnetwork of oncogenes strongly associated with MYCN -amplified neuroblastoma and poor patient outcome. MYCN bound to the miR-204 promoter and repressed miR-204 transcription. Conversely, miR-204 directly bound MYCN mRNA and repressed MYCN expression. miR-204 overexpression significantly inhibited neuroblastoma cell proliferation in vitro and tumorigenesis in vivo Together, these findings identify novel tumorigenic miRNA gene networks and miR-204 as a tumor suppressor that regulates MYCN expression in neuroblastoma tumorigenesis. Significance: Network modeling of miRNA-mRNA regulatory interactions in a mouse model of neuroblastoma identifies miR-204 as a tumor suppressor and negative regulator of MYCN. Cancer Res; 78(12); 3122-34. ©2018 AACR . ©2018 American Association for Cancer Research.

Interdisciplinary Care in Disorders/Differences of Sex Development (DSD): The Psychosocial Component of the DSD – Translational Research Network

PubMed Central

Sandberg, David E.; Gardner, Melissa; Callens, Nina; Mazur, Tom

2017-01-01

Scientific discovery and clinical management strategies for Disorders/Differences of Sex Development (DSD) have advanced in recent years. The 2006 Consensus Statement on Management of Intersex Disorders stated that a mental health component to care is integral to promote positive adaptation, yet the parameters of this element have not been described. The objective of this paper is three-fold: to describe the psychosocial screening protocol adopted by the clinical centers of the DSD-Translational Research Network; to summarize psychosocial data collected at one of the 10 network sites; and to suggest how systematic behavioral health screenings can be employed to tailor care in DSD that results in better health and quality of life outcomes. Steps taken in developing the largely “noncategorical” screening protocol are described. These preliminary findings suggest that DSD, as one category of pediatric chronic conditions, is not associated with marked disturbances of psychosocial adaptation, either for the family or the child; however, screening frequently uncovered “risk factors” for individual families or patients that can potentially be addressed in the context of ongoing clinical care. Administration of the DSD-TRN psychosocial screening protocol was demonstrated to be feasible in the context of interdisciplinary team care and was acceptable to families on a longitudinal basis. The ultimate value of systematic screening will be demonstrated through a tailoring of psychosocial, medical and surgical services, based on this information that enhances the quality of patient and family-centered care and subsequent outcomes. PMID:28574671

Comparisons of Adolescent and Parent Willingness to Participate in Minimal and Above Minimal Risk Pediatric Asthma Research Protocols

PubMed Central

Brody, Janet L.; Annett, Robert D.; Scherer, David G.; Perryman, Mandy L.; Cofrin, Keely M. W.

2007-01-01

Purpose Much has been written about conceptual concern for voluntary assent with children and adolescents. However, little empirical data exists examining the frequency with which, or context in which, adolescents and parents disagree on research participation decisions. The purpose of this study was to compare parent and adolescent willingness to participate in minimal and above minimal risk pediatric asthma research protocols. Method 36 adolescents diagnosed with asthma and one of their parents independently rated their willingness to participate in 9 pediatric asthma research protocol vignettes. The selected protocols were chosen by an expert panel as representative of typical minimal and above minimal risk pediatric asthma studies. Results Parents and adolescents were significantly less likely to agree to enroll in above minimal risk studies. However, this was qualified by a finding that adolescents were significantly more willing than parents to enroll in above minimal risk research. Across all 9 studies, parents and adolescents held concordant views on participation decisions approximately 60% of the time. Perception of potential study benefit was the most frequent reason provided for participation decisions by both parents and adolescents. Conclusion Parents and their adolescents report a consistent 40% discordance in their views about participating in asthma research across a variety of asthma research protocols, with adolescents more willing than their parents to enroll in above minimal risk studies. These differences of opinion highlight the need to carefully consider the process by which families are offered the option of adolescent research participation. PMID:16109343

Managing pediatric dental patients: issues raised by the law and changing views of proper child care.

PubMed

Bross, Donald C

2004-01-01

The purpose of this paper was to examine legal issues regarding the management of pediatric dental patients and changing views of proper child care. Standards of care in pediatric dentistry are not static. They change in response to research, patterns of reimbursement, patient and parental expectations of reasonable care, and consensus among practitioners. The law pertaining to accountability for pediatric dental patient treatment largely reflects standards of care established by the pediatric dentistry profession. However, the law can also reflect changes in public expectations of reasonable care that can effectively outrun the discipline's efforts to reflect new knowledge or changing public concerns. A major impetus for considering the care of children in all settings has been the increasing recognition of suboptimal children's care, as well as concerns that children have either been abused or neglected in a number of settings. Too often, practices towards children have been untested and based only on the assumption that what is done is "for the child's own good." Pediatric dentists can respond to changing standards of reasonable care for pediatric dental patients, as expressed in legal decisions. They can also usefully consider how attention to child maltreatment has sensitized parents to be better consumers of services on their children's behalf. Rather than reacting only to public pressures for better means of behavior management, the challenge is to exceed expectations via new research and thoughtful anticipation of improvements that can be made.

The management of menstrual suppression and uterine bleeding: a survey of current practices in the Pediatric Blood and Marrow Transplant Consortium.

PubMed

Adegite, Enitan A; Goyal, Rakesh K; Murray, Pamela J; Marshal, Mike; Sucato, Gina S

2012-09-01

Current guidelines recommend the use of combined hormonal contraceptive pills for menstrual suppression in pediatric blood and marrow transplant (BMT) recipients but recent research reveals that provider practice varies. This study was designed to describe the current practice for managing menstrual issues, that is, menstrual suppression and uterine bleeding, in pediatric BMT patients and to better understand health care providers' practices in the use of gonadotropin-releasing hormone agonists (GnRHa). A cross sectional survey consisting of 53 questions was distributed via email to principal investigators in the Pediatric Blood and Marrow Transplant Consortium (PBMTC). Responses were collected using www.surveymonkey.com. Menstrual suppression and uterine bleeding in pediatric BMT patients are primarily managed by pediatric oncologists (97%). The most frequently reported hormonal method used for induction of therapeutic amenorrhea was GnRHa (41%). The top three reasons for choosing a method were greater likelihood of amenorrhea, concerns about side effects, and possible gonadal protection. Continuous combined hormonal contraceptive pills were the most commonly used method for the management of clinically significant uterine bleeding regardless of primary method used for menstrual suppression. Despite the 2002 PBMTC guidelines, wide variation in menstrual suppression management practices still exists. Our data show that use of GnRHa is more common than previously reported. Additional research is needed to develop evidence-based practice guidelines in pediatric BMT patients. Copyright © 2012 Wiley Periodicals, Inc.

Enhancing pediatric clinical trial feasibility through the use of Bayesian statistics.

PubMed

Huff, Robin A; Maca, Jeff D; Puri, Mala; Seltzer, Earl W

2017-11-01

BackgroundPediatric clinical trials commonly experience recruitment challenges including limited number of patients and investigators, inclusion/exclusion criteria that further reduce the patient pool, and a competitive research landscape created by pediatric regulatory commitments. To overcome these challenges, innovative approaches are needed.MethodsThis article explores the use of Bayesian statistics to improve pediatric trial feasibility, using pediatric Type-2 diabetes as an example. Data for six therapies approved for adults were used to perform simulations to determine the impact on pediatric trial size.ResultsWhen the number of adult patients contributing to the simulation was assumed to be the same as the number of patients to be enrolled in the pediatric trial, the pediatric trial size was reduced by 75-78% when compared with a frequentist statistical approach, but was associated with a 34-45% false-positive rate. In subsequent simulations, greater control was exerted over the false-positive rate by decreasing the contribution of the adult data. A 30-33% reduction in trial size was achieved when false-positives were held to less than 10%.ConclusionReducing the trial size through the use of Bayesian statistics would facilitate completion of pediatric trials, enabling drugs to be labeled appropriately for children.

Assessment and Management of Treatment-Refractory Obsessive-Compulsive Disorder in Children

PubMed Central

Bloch, Michael H.; Storch, Eric A.

2015-01-01

OBJECTIVE To review the assessment and treatment of treatment-refractory pediatric obsessive-compulsive disorder (OCD). METHOD A PubMed search was conducted to identify controlled trials in pediatric OCD. Additionally, practice guidelines for the treatment of adults and children were further reviewed for references in treatment-refractory OCD across the lifespan. RESULTS Pharmacotherapy with selective serotonin reuptake inhibitors (SSRIs) and cognitive-behavioral therapy are effective treatments for pediatric OCD. Evidence suggests that CBT is additionally effective even in pediatric patients with refractory OCD symptoms. Antipsychotic augmentation, raising SSRI dosage, and several glutamate-modulating agents have some evidence of efficacy in adults with treatment-refractory OCD but have not been studied in pediatric populations. CONCLUSION Several pharmacological treatment options exist for children with refractory OCD symptoms. However, little evidence-based data exist to guide treatment for our most challenging pediatric OCD patients. Further research is needed to evaluate the efficacy/side-effect profile of commonly used interventions in treatment-refractory pediatric OCD. PMID:25791142

Pediatric Cancer Survivorship Research: Experience of the Childhood Cancer Survivor Study

PubMed Central

Leisenring, Wendy M.; Mertens, Ann C.; Armstrong, Gregory T.; Stovall, Marilyn A.; Neglia, Joseph P.; Lanctot, Jennifer Q.; Boice, John D.; Whitton, John A.; Yasui, Yutaka

2009-01-01

The Childhood Cancer Survivor Study (CCSS) is a comprehensive multicenter study designed to quantify and better understand the effects of pediatric cancer and its treatment on later health, including behavioral and sociodemographic outcomes. The CCSS investigators have published more than 100 articles in the scientific literature related to the study. As with any large cohort study, high standards for methodologic approaches are imperative for valid and generalizable results. In this article we describe methodological issues of study design, exposure assessment, outcome validation, and statistical analysis. Methods for handling missing data, intrafamily correlation, and competing risks analysis are addressed; each with particular relevance to pediatric cancer survivorship research. Our goal in this article is to provide a resource and reference for other researchers working in the area of long-term cancer survivorship. PMID:19364957

Developing and Modifying Behavioral Coding Schemes in Pediatric Psychology: A Practical Guide

PubMed Central

McMurtry, C. Meghan; Chambers, Christine T.; Bakeman, Roger

2015-01-01

Objectives To provide a concise and practical guide to the development, modification, and use of behavioral coding schemes for observational data in pediatric psychology. Methods This article provides a review of relevant literature and experience in developing and refining behavioral coding schemes. Results A step-by-step guide to developing and/or modifying behavioral coding schemes is provided. Major steps include refining a research question, developing or refining the coding manual, piloting and refining the coding manual, and implementing the coding scheme. Major tasks within each step are discussed, and pediatric psychology examples are provided throughout. Conclusions Behavioral coding can be a complex and time-intensive process, but the approach is invaluable in allowing researchers to address clinically relevant research questions in ways that would not otherwise be possible. PMID:25416837

Toward evidence-based diagnosis of myocarditis in children and adolescents: Rationale, design, and first baseline data of MYKKE, a multicenter registry and study platform.

PubMed

Messroghli, Daniel R; Pickardt, Thomas; Fischer, Marcus; Opgen-Rhein, Bernd; Papakostas, Konstantin; Böcker, Dorothée; Jakob, André; Khalil, Markus; Mueller, Goetz C; Schmidt, Florian; Kaestner, Michael; Udink Ten Cate, Floris E A; Wagner, Robert; Ruf, Bettina; Kiski, Daniela; Wiegand, Gesa; Degener, Franziska; Bauer, Ulrike M M; Friede, Tim; Schubert, Stephan

2017-05-01

The aim of this registry is to provide data on age-related clinical features of suspected myocarditis and to create a study platform allowing for deriving diagnostic criteria and, at a later stage, testing therapeutic interventions in patients with myocarditis. After an initial 6-month pilot phase, MYKKE was opened in June 2014 as a prospective multicenter registry for patients from pediatric heart centers, university hospitals, and community hospitals with pediatric cardiology wards in Germany. Inclusion criteria consisted of age<18 years and hospitalization for suspected myocarditis as leading diagnosis at the discretion of the treating physician. By December 31, 2015, fifteen centers across Germany were actively participating and had enrolled 149 patients. Baseline data reveal 2 age peaks (<2 years, >12 years), show higher proportions of males, and document a high prevalence of severe disease courses in pediatric patients with suspected myocarditis. Severe clinical courses and early adverse events were more prevalent in younger patients and were related to severely impaired leftventricular ejection fraction at initial presentation. MYKKE represents a multicenter registry and research platform for children and adolescents with suspected myocarditis that achieve steady recruitment and generate a wide range of real-world data on clinical course, diagnostic workup, and treatment of this group of patients. The baseline data reveal the presence of 2 age peaks and provide important insights into the severity of disease in children with suspected myocarditis. In the future, MYKKE might facilitate interventional substudies by providing an established collaborating network using common diagnostic approaches. Copyright © 2017 Elsevier Inc. All rights reserved.

Estimation of fish and omega-3 fatty acid intake in pediatric nonalcoholic fatty liver disease

PubMed Central

St-Jules, David E; Watters, Corilee A; Brunt, Elizabeth M; Wilkens, Lynne R; Novotny, Rachel; Belt, Patricia; Lavine, Joel E

2013-01-01

Introduction Fish and omega-3 fatty acids are reported to be beneficial in pediatric nonalcoholic fatty liver disease (NAFLD), but no studies have assessed their relation to histological severity. The objectives of this study were to evaluate the dietary intake of fish and omega-3 fatty acids in children with biopsy-proven NAFLD, and examine their association with serological and histological indicators of disease. Materials and Methods This was a cross-sectional analysis of 223 children (6–18 years) that participated in the Treatment of Nonalcoholic Fatty Liver Disease in Children trial or the NAFLD Database study conducted by the Nonalcoholic Steatohepatitis Clinical Research Network. The distribution of fish and omega-3 fatty acid intake were determined from responses to the Block Brief 2000 Food Frequency Questionnaire, and analyzed for associations with serum alanine aminotransferase, histological features of fatty liver disease, and diagnosis of steatohepatitis after adjusting for demographic, anthropometric and dietary variables. Results The minority of subjects consumed the recommended eight ounces of fish per week (22/223 (10%)) and 200 mg of long-chain omega-3 fatty acids per day (12/223 (5%)). Lack of fish and long-chain omega-3 fatty acid intake was associated with greater portal (p=0.03 and p=0.10, respectively) and lobular inflammation (p=0.09 and p=0.004, respectively) after controlling for potential confounders. Discussion Fish and omega-3 fatty acid intake were insufficient in children with NAFLD, which may increase susceptibility to hepatic inflammation. Patients with pediatric NAFLD should be encouraged to consume the recommended amount of fish per week. PMID:24177784

Importance of Urine Dipstick in Evaluation of Young Febrile Infants With Positive Urine Culture: A Spanish Pediatric Emergency Research Group Study.

PubMed

Velasco, Roberto; Benito, Helvia; Mozun, Rebeca; Trujillo, Juan E; Merino, Pedro A; de la Torre, Mercedes; Gomez, Borja; Mintegi, Santiago

2016-12-01

Guidelines from the American Academy of Pediatrics define urinary tract infection (UTI) as the growth of greater than 50,000 ufc/mL of a single bacterium in a urine culture with a positive urine dipstick or with a urinalysis associated. Our objective was to evaluate the adequacy of this cutoff point for the diagnosis of UTI in young febrile infants. Subanalysis of a prospective multicenter study developed in RISeuP-SPERG Network between October 11 and September 13. To carry out the study, it was performed a comparison of analytical and microbiological characteristics of patients younger than 90 days with fever without focus, taking into account the results of urine dipstick and urine culture. Of a total of 3333 infants younger than 90 days with fever without focus which were included in the study, 538 were classified as UTI in accordance with American Academy of Pediatrics' guidelines. These patients were similar to those who had a positive urine dipstick and a urine culture yielding of 10,000 to 50,000 ufc/mL, and they were different from those who had a normal urine dipstick and a urine culture >50,000 ufc/mL, being focused on the isolated bacteria and blood biomarkers values. Forty-five invasive bacterial infections were diagnosed (5.9% of the 756 with a urine culture >10,000 ufc/mL). Half of the infants with a normal urine dipstick diagnosed with invasive bacterial infections were younger than 15 days. It might be inadequate to use a threshold of 50,000 cfu/mL to consider a urine culture as positive in young febrile infants given the fact that it would misdiagnose several UTIs.

Practice Pattern Variation in Pediatric Eosinophilic Esophagitis in the Carolinas EoE Collaborative: A Research Model in Community and Academic Practices.

PubMed

Huang, Kevin Z; Jensen, Elizabeth T; Chen, Hannah X; Landes, Lisa E; McConnell, Kristen A; Almond, M Angie; Johnston, Douglas T; Durban, Raquel; Jobe, Laura; Frost, Carrie; Donnelly, Sarah; Antonio, Brady; Safta, Anca M; Quiros, J Antonio; Markowitz, Jonathan E; Dellon, Evan S

2018-06-01

Differences in the initial management of pediatric eosinophilic esophagitis (EoE) by practice setting have not been well characterized. We aimed to characterize these differences for sites in the Carolinas EoE Collaborative (CEoEC), a multicenter network of academic and community practices. We performed a retrospective cohort study of pediatric EoE patients at five CEoEC sites: University of North Carolina (UNC) Hospital, Charlotte Asthma and Allergy Specialists, Greenville Health Systems, Wake Forest Baptist Medical Center, and the Medical University of South Carolina Hospital. Cases of EoE were defined by consensus guidelines. Data were extracted from electronic medical records. We tested for differences among sites and used a multinomial model (polytomous regression) to assess associations between treatment and site, adjusting on patient factors. We identified 464 children with EoE across the CEoEC sites. The median age was highest at Wake Forest (11.4 years), the median eosinophil count was highest at UNC (69 eos/hpf), and UNC had the most male patients (82%). UNC used topical steroids for initial treatment in 86% of cases, compared with <1% in Greenville ( P < 0.01). Greenville used dietary elimination more frequently than UNC (81% vs 2%, P < 0.01). Differences in treatment approach held after adjusting for potential baseline confounders. There was no significant association between patient factors and initial treatment approach. Significant differences in EoE patient factors and treatment approaches were identified across CEoEC sites and were not explained by patient or practice factors. This suggests that institutional or provider preferences drive initial treatment approaches, and that more data are needed to drive best practice decisions.

Lack of agreement in pediatric emergency department discharge diagnoses from clinical and administrative data sources.

PubMed

Gorelick, Marc H; Knight, Stacey; Alessandrini, Evaline A; Stanley, Rachel M; Chamberlain, James M; Kuppermann, Nathan; Alpern, Elizabeth R

2007-07-01

Diagnosis information from existing data sources is used commonly for epidemiologic, administrative, and research purposes. The quality of such data for emergency department (ED) visits is unknown. To determine the agreement on final diagnoses between two sources, electronic administrative sources and manually abstracted medical records, for pediatric ED visits, in a multicenter network. This was a cross sectional study at 19 EDs nationwide. The authors obtained data from two sources at each ED during a three-month period in 2003: administrative sources for all visits and abstracted records for randomly selected visits during ten days over the study period. Records were matched using unique identifiers and probabilistic linkage. The authors recorded up to three diagnoses from each abstracted medical record and up to ten for the administrative data source. Diagnoses were grouped into 104 groups using a modification of the Clinical Classification System. A total of 8,860 abstracted records had at least one valid diagnosis code (with a total of 12,895 diagnoses) and were successfully matched to records in the administrative source. Overall, 67% (95% confidence interval = 66% to 68%) of diagnoses from the administrative and abstracted sources were within the same diagnosis group. Agreement varied by site, ranging from 54% to 77%. Agreement varied substantially by diagnosis group; there was no difference by method of linkage. Clustering clinically similar diagnosis groups improved agreement between administrative and abstracted data sources. ED diagnoses retrieved from electronic administrative sources and manual chart review frequently disagree, even if similar diagnosis codes are grouped. Agreement varies by institution and by diagnosis. Further work is needed to improve the accuracy of diagnosis coding; development of a grouping system specific to pediatric emergency care may be beneficial.

Rationale, design and objectives of ARegPKD, a European ARPKD registry study.

PubMed

Ebner, Kathrin; Feldkoetter, Markus; Ariceta, Gema; Bergmann, Carsten; Buettner, Reinhard; Doyon, Anke; Duzova, Ali; Goebel, Heike; Haffner, Dieter; Hero, Barbara; Hoppe, Bernd; Illig, Thomas; Jankauskiene, Augustina; Klopp, Norman; König, Jens; Litwin, Mieczyslaw; Mekahli, Djalila; Ranchin, Bruno; Sander, Anja; Testa, Sara; Weber, Lutz Thorsten; Wicher, Dorota; Yuzbasioglu, Ayse; Zerres, Klaus; Dötsch, Jörg; Schaefer, Franz; Liebau, Max Christoph

2015-02-18

Autosomal recessive polycystic kidney disease (ARPKD) is a rare but frequently severe disorder that is typically characterized by cystic kidneys and congenital hepatic fibrosis but displays pronounced phenotypic heterogeneity. ARPKD is among the most important causes for pediatric end stage renal disease and a leading reason for liver-, kidney- or combined liver kidney transplantation in childhood. The underlying pathophysiology, the mechanisms resulting in the observed clinical heterogeneity and the long-term clinical evolution of patients remain poorly understood. Current treatment approaches continue to be largely symptomatic and opinion-based even in most-advanced medical centers. While large clinical trials for the frequent and mostly adult onset autosomal dominant polycystic kidney diseases have recently been conducted, therapeutic initiatives for ARPKD are facing the challenge of small and clinically variable cohorts for which reliable end points are hard to establish. ARegPKD is an international, mostly European, observational study to deeply phenotype ARPKD patients in a pro- and retrospective fashion. This registry study is conducted with the support of the German Society for Pediatric Nephrology (GPN) and the European Study Consortium for Chronic Kidney Disorders Affecting Pediatric Patients (ESCAPE Network). ARegPKD clinically characterizes long-term ARPKD courses by a web-based approach that uses detailed basic data questionnaires in combination with yearly follow-up visits. Clinical data collection is accompanied by associated biobanking and reference histology, thus setting roots for future translational research. The novel registry study ARegPKD aims to characterize miscellaneous subcohorts and to compare the applied treatment options in a large cohort of deeply characterized patients. ARegPKD will thus provide evidence base for clinical treatment decisions and contribute to the pathophysiological understanding of this severe inherited disorder.

New frontiers in pediatric allogeneic stem cell transplantation

PubMed Central

Talano, Julie-An M.; Pulsipher, Michael A.; Symons, Heather J.; Militano, Olga; Shereck, Evan B.; Giller, Roger H.; Hancock, Laura; Morris, Erin; Cairo, Mitchell S.

2015-01-01

The inaugural meeting of “New Frontiers in Pediatric Allogeneic Stem Cell Transplantation” organized by the Pediatric Blood and Transplant Consortium (PBMTC) was held at the American Society of Pediatric Hematology and Oncology Annual Meeting. This meeting provided an international platform for physicians and investigators active in the research and utilization of pediatric allogeneic stem cell transplantation (AlloSCT) in children and adolescents with malignant and non-malignant disease, to share information and develop future collaborative strategies. The primary objectives of the conference included: 1) to present advances in AlloSCT in pediatric ALL and novel pre- and post-immunotherapy; 2) to highlight new strategies in alternative allogeneic stem cell donor sources for children and adolescents with non-malignant hematological disorders; 3) to discuss timing of immune reconstitution after AlloSCT and methods of facilitating more rapid recovery of immunity; 4) to identify strategies of utilizing AlloSCT in pediatric myeloproliferative disorders (MPD); 5) to develop diagnostic and therapeutic approaches to hematological complications post pediatric AlloSCT; 6) to enhance the understanding of new novel cellular therapeutic approaches to pediatric malignant and non-malignant hematological disorders; and 7) to discuss optimizing drug therapy in pediatric recipients of AlloSCT. This paper will provide a brief overview of the conference. PMID:24820213

The Ethics of Vaccination Nudges in Pediatric Practice.

PubMed

Navin, Mark C

2017-03-01

Techniques from behavioral economics-nudges-may help physicians increase pediatric vaccine compliance, but critics have objected that nudges can undermine autonomy. Since autonomy is a centrally important value in healthcare decision-making contexts, it counts against pediatric vaccination nudges if they undermine parental autonomy. Advocates for healthcare nudges have resisted the charge that nudges undermine autonomy, and the recent bioethics literature illustrates the current intractability of this debate. This article rejects a principle to which parties on both sides of this debate sometimes seem committed: that nudges are morally permissible only if they are consistent with autonomy. Instead, I argue that, at least in the case of pediatric vaccination, some autonomy-undermining nudges may be morally justified. This is because parental autonomy in pediatric decision-making is not as morally valuable as the autonomy of adult patients, and because the interests of both the vaccinated child and other members of the community can sometimes be weighty enough to justify autonomy-infringing pediatric vaccination nudges. This article concludes with a set of worries about the effect of pediatric vaccination nudges on parent-physician relationships, and it calls on the American Academy of Pediatrics to draw on scientific and bioethics research to develop guidelines for the use of nudges in pediatric practice and, in particular, for the use of pediatric vaccination nudges.