Measure Once, Cut Twice – Adding Patient-Reported Outcome Measures to the Electronic Health Record for Comparative Effectiveness Research

PubMed Central

Wu, Albert W.; Kharrazi, Hadi; Boulware, L. Ebony; Snyder, Claire F.

2013-01-01

Objective This paper presents the current state of patient-reported outcome measures, and explains new opportunities for leveraging the recent adoption of electronic health records to expand the application of patient-reported outcomes in both clinical care and comparative effectiveness research. Study Design and Setting Historic developments of patient-reported outcome, electronic health record, and comparative effectiveness research are analyzed in two dimensions: patient-centeredness and digitization. We pose the question: “What needs to be standardized around the collection of patient-reported outcomes in electronic health records for comparative effectiveness research?” Results We identified three converging trends: the progression of patient-reported outcomes toward greater patient centeredness and electronic adaptation; the evolution of electronic health records into personalized and fully digitized solutions; the shift toward patient-oriented comparative effectiveness research. Related to this convergence, we propose an architecture for patient-reported outcome standardization that could serve as a first step toward a more comprehensive integration of patient-reported outcomes with electronic health record for both practice and research. Conclusion The science of patient-reported outcome measurement has matured sufficiently to be integrated routinely into electronic health records and other e-health solutions to collect data on an ongoing basis for clinical care and comparative effectiveness research. Further efforts and ideally coordinated efforts from various stakeholders are needed to refine the details of the proposed framework for standardization. PMID:23849145

Evaluation of patient reporting of adverse drug reactions to the UK 'Yellow Card Scheme': literature review, descriptive and qualitative analyses, and questionnaire surveys.

PubMed

Avery, A J; Anderson, C; Bond, C M; Fortnum, H; Gifford, A; Hannaford, P C; Hazell, L; Krska, J; Lee, A J; McLernon, D J; Murphy, E; Shakir, S; Watson, M C

2011-05-01

The monitoring of adverse drug reactions (ADRs) through pharmacovigilance is vital to patient safety. Spontaneous reporting of ADRs is one method of pharmacovigilance, and in the UK this is undertaken through the Yellow Card Scheme (YCS). Yellow Card reports are submitted to the Medicines and Healthcare products Regulatory Agency (MHRA) by post, telephone or via the internet. The MHRA electronically records and reviews information submitted so that important safety issues can be detected. While previous studies have shown differences between patient and health-care professional (HCP) reports for the types of drugs and reactions reported, relatively little is known about the pharmacovigilance impact of patient reports. There have also been few studies on the views and experiences of patients/consumers on the reporting of suspected ADRs. To evaluate the pharmacovigilance impact of patient reporting of ADRs by analysing reports of suspected ADRs from the UK YCS and comparing reports from patients and HCPs. To elicit the views and experiences of patients and the public about patient reporting of ADRs. (1) Literature review and survey of international experiences of consumer reporting of ADRs; (2) descriptive analysis of Yellow Card reports; (3) signal generation analysis of Yellow Card reports; (4) qualitative analysis of Yellow Card reports; (5) questionnaire survey of patients reporting on Yellow Cards; (6) qualitative analysis of telephone interviews with patient reporters to the scheme; (7) qualitative analysis of focus groups and usability testing of the patient YCS; and (8) national omnibus telephone survey of public awareness of the YCS. Patients (n = 5180) and HCPs (n = 20,949) submitting Yellow Card reports from October 2005 to September 2007. Respondents to questionnaire survey (n = 1362). Participants at focus groups and usability testing sessions (n = 40). National omnibus telephone survey (n = 2028). The literature review included studies in English from

Patient experience of NHS health checks: a systematic review and qualitative synthesis.

PubMed

Usher-Smith, Juliet A; Harte, Emma; MacLure, Calum; Martin, Adam; Saunders, Catherine L; Meads, Catherine; Walter, Fiona M; Griffin, Simon J; Mant, Jonathan

2017-08-11

To review the experiences of patients attending NHS Health Checks in England. A systematic review of quantitative and qualitative studies with a thematic synthesis of qualitative studies. An electronic literature search of Medline, Embase, Health Management Information Consortium, Cumulative Index of Nursing and Allied Health Literature, Global Health, PsycInfo, Web of Science, OpenGrey, the Cochrane Library, National Health Service (NHS) Evidence, Google Scholar, Google, Clinical Trials.gov and the ISRCTN registry to 09/11/16 with no language restriction and manual screening of reference lists of all included papers. Primary research reporting experiences of patients who have attended NHS Health Checks. 20 studies met the inclusion criteria, 9 reporting quantitative data and 15 qualitative data. There were consistently high levels of reported satisfaction in surveys, with over 80% feeling that they had benefited from an NHS Health Check. Data from qualitative studies showed that the NHS Health Check had been perceived to act as a wake-up call for many who reported having gone on to make substantial lifestyle changes which they attributed to the NHS Health Check. However, some had been left with a feeling of unmet expectations, were confused about or unable to remember their risk scores, found the lifestyle advice too simplistic and non-personalised or were confused about follow-up. While participants were generally very supportive of the NHS Health Check programme and examples of behaviour change were reported, there are a number of areas where improvements could be made. These include greater clarity around the aims of the programme within the promotional material, more proactive support for lifestyle change and greater appreciation of the challenges of communicating risk and the limitations of relying on the risk score alone as a trigger for facilitating behaviour change. © Article author(s) (or their employer(s) unless otherwise stated in the text of the

Understanding "revolving door" patients in general practice: a qualitative study.

PubMed

Williamson, Andrea E; Mullen, Kenneth; Wilson, Philip

2014-02-13

'Revolving door' patients in general practice are repeatedly removed from general practitioners' (GP) lists. This paper reports a qualitative portion of the first mixed methods study of these marginalised patients. We conducted qualitative semi-structured interviews with six practitioner services staff and six GPs in Scotland, utilizing Charmazian grounded theory to characterise 'revolving door' patients and their impact from professionals' perspectives. 'Revolving door' patients were reported as having three necessary characteristics; they had unreasonable expectations, exhibited inappropriate behaviours and had unmet health needs. A range of boundary breaches were reported too when 'revolving door' patients interacted with NHS staff. We utilise the 'sensitising concepts' of legitimacy by drawing on literature about 'good and bad' patients and 'dirty work designations.' We relate these to the core work of general practice and explore the role that medical and moral schemas have in how health service professionals understand and work with 'revolving door' patients. We suggest this may have wider relevance for the problem doctor patient relationship literature.

Equivalence of electronic and paper-based patient-reported outcome measures.

PubMed

Campbell, Niloufar; Ali, Faraz; Finlay, Andrew Y; Salek, Sam S

2015-08-01

Electronic formats (ePROs) of paper-based patient-reported outcomes (PROs) should be validated before they can be reliably used. This review aimed to examine studies investigating measurement equivalence between ePROs and their paper originals to identify methodologies used and to determine the extent of such validation. Three databases (OvidSP, Web of Science and PubMed) were searched using a set of keywords. Results were examined for compliance with inclusion criteria. Articles or abstracts that directly compared screen-based electronic versions of PROs with their validated paper-based originals, with regard to their measurement equivalence, were included. Publications were excluded if the only instruments reported were stand-alone visual analogue scales or interactive voice response formats. Papers published before 2007 were excluded, as a previous meta-analysis examined papers published before this time. Fifty-five studies investigating 79 instruments met the inclusion criteria. 53 % of the 79 instruments studied were condition specific. Several instruments, such as the SF-36, were reported in more than one publication. The most frequently reported formats for ePROs were Web-based versions. In 78 % of the publications, there was evidence of equivalence or comparability between the two formats as judged by study authors. Of the 30 publications that provided preference data, 87 % found that overall participants preferred the electronic format. When examining equivalence between paper and electronic versions of PROs, formats are usually judged by authors to be equivalent. Participants prefer electronic formats. This literature review gives encouragement to the further widespread development and use of ePROs.

A Qualitative Study of Vulnerable Patient Views of Type 2 Diabetes Consumer Reports.

PubMed

Longo, Daniel R; Crabtree, Benjamin F; Pellerano, Maria B; Howard, Jenna; Saver, Barry; Hannan, Edward L; Lee, Justin; Lundberg, Michael T; Sabo, Roy

2016-06-01

The Patient Protection and Affordable Care Act (ACA) mandates the release of publicly available consumer reports to highlight differences in quality of care and reduce healthcare disparities. However, little is known about patient perceptions of the value of such reports. This study aims to identify whether vulnerable populations with type 2 diabetes perceive consumer reports as helpful in making decisions about diabetes care. We conducted a brief demographic survey and qualitative study of 18 focus groups: six each of African American, Hispanic, and non-Hispanic White consumers diagnosed with type 2 diabetes (n = 92). We analysed focus group transcripts to identify recurring themes, which were summarized and compared across population groups. Participants expressed minimal interest in currently available consumer reports. They instead listed personal referrals and interpersonal interactions among the most important factors when choosing a physician. Further, in place of information to aid in physician selection, participants articulated strong desires for more basic, straightforward disease-specific information that would promote diabetes self-management. This study's results call into question the value of consumer reports as defined by the ACA. Participants reported little interest in comparative provider performance data. Instead, they were more interested in information to assist in diabetes self-management. This suggests that consumer reports may not be as important a tool to improve outcomes and reduce health disparities as policy makers imagine them to be.

Content validity and electronic PRO (ePRO) usability of the Lung Cancer Symptom Scale-Mesothelioma (LCSS-Meso) in mesothelioma patients.

PubMed

Gelhorn, Heather L; Skalicky, Anne M; Balantac, Zaneta; Eremenco, Sonya; Cimms, Tricia; Halling, Katarina; Hollen, Patricia J; Gralla, Richard J; Mahoney, Martin C; Sexton, Chris

2018-07-01

Obtaining qualitative data directly from the patient perspective enhances the content validity of patient-reported outcome (PRO) instruments. The objective of this qualitative study was to evaluate the content validity of the Lung Cancer Symptom Scale for Mesothelioma (LCSS-Meso) and its usability on an electronic device. A cross-sectional methodological study, using a qualitative approach, was conducted among patients recruited from four clinical sites. The primary target population included patients with pleural mesothelioma; data were also collected from patients with peritoneal mesothelioma on an exploratory basis. Semi-structured interviews were conducted consisting of concept elicitation, cognitive interviewing, and evaluation of electronic patient-reported outcome (ePRO) usability. Participants (n = 21) were interviewed in person (n = 9) or by telephone (n = 12); 71% were male with a mean age of 69 years (SD = 14). The most common signs and symptoms experienced by participants with pleural mesothelioma (n = 18) were shortness of breath, fluid build-up, pain, fatigue, coughing, and appetite loss. The most commonly described symptoms for those with peritoneal mesothelioma (n = 4) were bloating, changes in appetite, fatigue, fluid build-up, shortness of breath, and pain. Participants with pleural mesothelioma commonly described symptoms assessed by the LCSS-Meso in language consistent with the questionnaire and a majority understood and easily completed each of the items. The ePRO version was easy to use, and there was no evidence that the electronic formatting changed the way participants responded to the questions. Results support the content validity of the LCSS-Meso and the usability of the electronic format for use in assessing symptoms among patients with pleural mesothelioma.

"Not just little adults": qualitative methods to support the development of pediatric patient-reported outcomes.

PubMed

Arbuckle, Rob; Abetz-Webb, Linda

2013-01-01

The US FDA and the European Medicines Agency (EMA) have issued incentives and laws mandating clinical research in pediatrics. While guidances for the development and validation of patient-reported outcomes (PROs) or health-related quality of life (HRQL) measures have been issued by these agencies, little attention has focused on pediatric PRO development methods. With reference to the literature, this article provides an overview of specific considerations that should be made with regard to the development of pediatric PRO measures, with a focus on performing qualitative research to ensure content validity. Throughout the questionnaire development process it is critical to use developmentally appropriate language and techniques to ensure outcomes have content validity, and will be reliable and valid within narrow age bands (0-2, 3-5, 6-8, 9-11, 12-14, 15-17 years). For qualitative research, sample sizes within those age bands must be adequate to demonstrate saturation while taking into account children's rapid growth and development. Interview methods, interview guides, and length of interview must all take developmental stage into account. Drawings, play-doh, or props can be used to engage the child. Care needs to be taken during cognitive debriefing, where repeated questioning can lead a child to change their answers, due to thinking their answer is incorrect. For the PROs themselves, the greatest challenge is in measuring outcomes in children aged 5-8 years. In this age range, while self-report is generally more valid, parent reports of observable behaviors are generally more reliable. As such, 'team completion' or a parent-administered child report is often the best option for children aged 5-8 years. For infants and very young children (aged 0-4 years), patient rating of observable behaviors is necessary, and, for adolescents and children aged 9 years and older, self-reported outcomes are generally valid and reliable. In conclusion, the development of PRO

Effect of electronic report writing on the quality of nursing report recording

PubMed Central

Heidarizadeh, Khadijeh; Rassouli, Maryam; Manoochehri, Houman; Tafreshi, Mansoureh Zagheri; Ghorbanpour, Reza Kashef

2017-01-01

Background and Aim Recording performed nursery actions is one of the main chores of nurses. The findings have shown that recorded reports are not qualitatively valid. Since electronic reports can be regarded as a base to write reports, this study aims at determining the effect of utilizing electronic nursing reports on the quality of the records. Methods This quasi-experimental study was conducted with the aim of applying an electronic system of nursing recording in the heart department of Shahid Rahimi Medical Center, Lorestan University of Medical Science. The samples were nursing reports on the hospitalized patients in the heart department, the basis of complete enumeration (census) during the fall of 2014. The subjects were sixteen employed nurses. To do the study, the software of nursing records was set based on the Clinical Care Classification system (CCC). The research’s tool was the checklist of the Standards of Nursing Documentation. Results The findings indicated that before and after the intervention, the amount of reports’ adaption with the written standards, respectively, was (21.8%) and (71.3%), and the most complete recording was medicine status (58%) and (100%). The worst complete recording before the intervention, acute changes was (99.1%) and nursing processes was (78%) and after, the medicine status, intake and output status and patient’s education (100%); while the nursing report structure was regarded in all cases (100%). The results showed that there is a significant difference in the quality of reporting before and after using CCC (p<0.001). Conclusions Since the necessary parameters for recording a standard report do exist in electronic reporting (CCC), from one point, nurses are reminded to record the necessary parts and from the other point, the system does not allow the user to shut it down unless the necessary parameters are recorded. For this reason, the quality of recorded reports with electronic reporting improves. PMID:29238481

The provider perspective: investigating the effect of the Electronic Patient-Reported Outcome (ePRO) mobile application and portal on primary care provider workflow.

PubMed

Hans, Parminder K; Gray, Carolyn Steele; Gill, Ashlinder; Tiessen, James

2018-03-01

Aim This qualitative study investigates how the Electronic Patient-Reported Outcome (ePRO) mobile application and portal system, designed to capture patient-reported measures to support self-management, affected primary care provider workflows. The Canadian health system is facing an ageing population that is living with chronic disease. Disruptive innovations like mobile health technologies can help to support health system transformation needed to better meet the multifaceted needs of the complex care patient. However, there are challenges with implementing these technologies in primary care settings, in particular the effect on primary care provider workflows. Over a six-week period interdisciplinary primary care providers (n=6) and their complex care patients (n=12), used the ePRO mobile application and portal to collaboratively goal-set, manage care plans, and support self-management using patient-reported measures. Secondary thematic analysis of focus groups, training sessions, and issue tracker reports captured user experiences at a Toronto area Family Health Team from October 2014 to January 2015. Findings Key issues raised by providers included: liability concerns associated with remote monitoring, increased documentation activities due to a lack of interoperability between the app and the electronic patient record, increased provider anxiety with regard to the potential for the app to disrupt and infringe upon appointment time, and increased demands for patient engagement. Primary care providers reported the app helped to focus care plans and to begin a collaborative conversation on goal-setting. However, throughout our investigation we found a high level of provider resistance evidenced by consistent attempts to shift the app towards fitting with existing workflows rather than adapting much of their behaviour. As health systems seek innovative and disruptive models to better serve this complex patient population, provider change resistance will need to

What Patients Value About Reading Visit Notes: A Qualitative Inquiry of Patient Experiences With Their Health Information

PubMed Central

Fossa, Alan; Folcarelli, Patricia H; Walker, Jan; Bell, Sigall K

2017-01-01

Background Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking. Objective We aimed to learn more about patient experiences with reading and providing feedback on their visit notes. Methods We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses (κ=.74). Results Patients and care partners submitted 260 reports. Among these, 98.5% (256/260) of reports indicated that the reporting tool was valuable, and 68.8% (179/260) highlighted what patients liked about reading notes and the OpenNotes patient reporting tool process. We identified 4 themes describing what patients value about note content: confirm and remember next steps, quicker access and results, positive emotions, and sharing information with care partners; and 4 themes about both patients’ use of notes and the feedback tool: accuracy and correcting mistakes, partnership and engagement, bidirectional communication and enhanced education, and importance of feedback. Conclusions Patients and care partners who read notes and submitted feedback reported greater engagement and the desire to help clinicians improve note accuracy. Aspects of what patients like about using both notes as well as a feedback tool highlight personal, relational, and safety benefits. Future efforts to engage patients through the EHR may be guided by what patients value, offering opportunities to strengthen care

Open Oncology Notes: A Qualitative Study of Oncology Patients' Experiences Reading Their Cancer Care Notes.

PubMed

Kayastha, Neha; Pollak, Kathryn I; LeBlanc, Thomas W

2018-04-01

Electronic medical records increasingly allow patients access to clinician notes. Although most believe that open notes benefits patients, some suggest negative consequences. Little is known about the experiences of patients with cancer reading their medical notes; thus we aimed to describe this qualitatively. We interviewed 20 adults with metastatic or incurable cancer receiving cancer treatment. The semistructured qualitative interviews included four segments: assessing their overall experience reading notes, discussing how notes affected their cancer care experiences, reading a real note with the interviewer, and making suggestions for improvement. We used a constant comparison approach to analyze these qualitative data. We found four themes. Patients reported that notes resulted in the following: (1) increased comprehension; (2) ameliorated uncertainty, relieved anxiety, and facilitated control; (3) increased trust; and (4) for a subset of patients, increased anxiety. Patients described increased comprehension because notes refreshed their memory and clarified their understanding of visits. This helped mitigate the unfamiliarity of cancer, addressing uncertainty and relieving anxiety. Notes facilitated control, empowering patients to ask clinicians more questions. The transparency of notes also increased trust in clinicians. For a subset of patients, however, notes were emotionally difficult to read and raised concerns. Patients identified medical jargon and repetition in notes as areas for improvement. Most patients thought that reading notes improved their care experiences. A small subset of patients experienced increased distress. As reading notes becomes a routine part of the patient experience, physicians might want to elicit and address concerns that arise from notes, thereby further engaging patients in their care.

Barriers to mesalamine adherence in patients with inflammatory bowel disease: a qualitative analysis.

PubMed

Devlen, Jennifer; Beusterien, Kathleen; Yen, Linnette; Ahmed, Awais; Cheifetz, Adam S; Moss, Alan C

2014-03-01

The causes for nonadherence to mesalamine in patients with inflammatory bowel disease (IBD) have been characterized using mostly indirect methods. Patient-reported barriers are lacking in this population. To identify patient-reported barriers to mesalamine adherence through direct interviews. Focus groups and one-on-one interviews were undertaken in adult patients with IBD. Transcripts from the focus groups and interviews were analyzed to identify themes and links between these themes, assisted by qualitative data software MaxQDA. Of 27 patients participating, 21 (78%) had ulcerative colitis, and 6 (22%) had Crohn's disease. Their self-reported adherence ranged from complete adherence (n = 3) to intermittent nonadherence (n = 24). Patients frequently indicated that they were resistant to taking medications for their condition. The barriers to adherence that emerged from interviews could be categorized under a number of themes: competing priorities, social stigma, refill inconvenience, costs, efficacy values, side effects, and pill characteristics. Efficacy values reported to influence adherence included doubts about efficacy, consequences of missed doses, and doubts about need for maintenance medication. Pill characteristics reported as barriers included pill size and pill frequency. Despite use of electronic prescribing, obtaining refills was reported as an obstacle to adherence in this cohort. Decanting of pills to multiple containers to increase accessibility was also reported. Patients with both ulcerative colitis and Crohn's disease report a number of common barriers to mesalamine adherence. Factors in medication-taking behavior and beliefs were reported in this study that may have implications for strategies to improve adherence by health care providers.

Development of an integrated electronic platform for patient self-report and management of adverse events during cancer treatment.

PubMed

Holch, P; Warrington, L; Bamforth, L C A; Keding, A; Ziegler, L E; Absolom, K; Hector, C; Harley, C; Johnson, O; Hall, G; Morris, C; Velikova, G

2017-09-01

Significant adverse events (AE) during cancer therapy disrupt treatment and escalate to emergency admissions. Approaches to improve the timeliness and accuracy of AE reporting may improve safety and reduce health service costs. Reporting AE via patient reported outcomes (PROs), can improve clinician-patient communication and making data available to clinicians in 'real-time' using electronic PROs (ePROs) could potentially transform clinical practice by providing easily accessible records to guide treatment decisions. This manuscript describes the development of eRAPID (electronic patient self-Reporting of Adverse-events: Patient Information and aDvice) is a National Institute for Health Research-funded programme, a system for patients to self-report and manage AE online during and after cancer treatment. A multidisciplinary team of IT experts, staff and patients developed using agile principles a secure web application interface (QStore) between an existing online questionnaire builder (QTool) displaying real-time ePRO data to clinicians in the electronic patient record at Leeds Teaching Hospitals NHS Trust. Hierarchical algorithms were developed corresponding to Common Terminology Criteria for Adverse Events grading using the QTool question dependency function. Patient advocates (N = 9), patients (N = 13), and staff (N = 19) usability tested the system reporting combinations of AE. The eRAPID system allows patients to report AE from home on PC, tablet or any web enabled device securely during treatment. The system generates immediate self-management advice for low or moderate AE and for severe AE advice to contact the hospital immediately. Clinicians can view patient AE data in the electronic patient record and receive email notifications when patients report severe AE. Evaluation of the system in a randomised controlled trial in breast, gynaecological and colorectal cancer patients undergoing systemic therapy is currently underway. To adapt eRAPID for

Do GPs use electronic mental health resources? - a qualitative study.

PubMed

Austin, David; Pier, Ciaran; Mitchell, Joanna; Schattner, Peter; Wade, Victoria; Pierce, David; Klein, Britt

2006-05-01

The Better Outcomes in Mental Health Care (BOMHC) initiative encourages general practitioners to use electronic mental health resources (EMHRs) during consultation with patients requiring psychological assistance. However, there is little data on GPs' acceptance and use of EMHRs. Semistructured interviews were conducted with 27 GPs to determine their attitude toward EMHRs, and their use during consultation with patients. Few GPs reported frequently using EMHRs in consultation. Identified barriers to use included lack of familiarity with information technology, and insufficient knowledge of available resources. Identified advantages of electronic resources included high patient acceptance, time efficiency, and improved quality of information. General practitioners recognise several advantages of utilising electronic resources for managing patients with mental illness. However, GPs are not sufficiently familiar with electronic resources to use them effectively. This could be overcome by education.

Understanding “revolving door” patients in general practice: a qualitative study

PubMed Central

2014-01-01

Background ‘Revolving door’ patients in general practice are repeatedly removed from general practitioners’ (GP) lists. This paper reports a qualitative portion of the first mixed methods study of these marginalised patients. Methods We conducted qualitative semi-structured interviews with six practitioner services staff and six GPs in Scotland, utilizing Charmazian grounded theory to characterise ‘revolving door’ patients and their impact from professionals’ perspectives. Results ‘Revolving door’ patients were reported as having three necessary characteristics; they had unreasonable expectations, exhibited inappropriate behaviours and had unmet health needs. A range of boundary breaches were reported too when ‘revolving door’ patients interacted with NHS staff. Conclusions We utilise the ‘sensitising concepts’ of legitimacy by drawing on literature about ‘good and bad’ patients and ‘dirty work designations.’ We relate these to the core work of general practice and explore the role that medical and moral schemas have in how health service professionals understand and work with ‘revolving door’ patients. We suggest this may have wider relevance for the problem doctor patient relationship literature. PMID:24524363

Enhancing genomic laboratory reports from the patients' view: A qualitative analysis.

PubMed

Stuckey, Heather; Williams, Janet L; Fan, Audrey L; Rahm, Alanna Kulchak; Green, Jamie; Feldman, Lynn; Bonhag, Michele; Zallen, Doris T; Segal, Michael M; Williams, Marc S

2015-10-01

The purpose of this study was to develop a family genomic laboratory report designed to communicate genome sequencing results to parents of children who were participating in a whole genome sequencing clinical research study. Semi-structured interviews were conducted with parents of children who participated in a whole genome sequencing clinical research study to address the elements, language and format of a sample family-directed genome laboratory report. The qualitative interviews were followed by two focus groups aimed at evaluating example presentations of information about prognosis and next steps related to the whole genome sequencing result. Three themes emerged from the qualitative data: (i) Parents described a continual search for valid information and resources regarding their child's condition, a need that prior reports did not meet for parents; (ii) Parents believed that the Family Report would help facilitate communication with physicians and family members; and (iii) Parents identified specific items they appreciated in a genomics Family Report: simplicity of language, logical flow, visual appeal, information on what to expect in the future and recommended next steps. Parents affirmed their desire for a family genomic results report designed for their use and reference. They articulated the need for clear, easy to understand language that provided information with temporal detail and specific recommendations regarding relevant findings consistent with that available to clinicians. © 2015 Wiley Periodicals, Inc.

Enhancing genomic laboratory reports from the patients' view: A qualitative analysis

PubMed Central

Stuckey, Heather; Fan, Audrey L.; Rahm, Alanna Kulchak; Green, Jamie; Feldman, Lynn; Bonhag, Michele; Zallen, Doris T.; Segal, Michael M.; Williams, Marc S.

2015-01-01

The purpose of this study was to develop a family genomic laboratory report designed to communicate genome sequencing results to parents of children who were participating in a whole genome sequencing clinical research study. Semi‐structured interviews were conducted with parents of children who participated in a whole genome sequencing clinical research study to address the elements, language and format of a sample family‐directed genome laboratory report. The qualitative interviews were followed by two focus groups aimed at evaluating example presentations of information about prognosis and next steps related to the whole genome sequencing result. Three themes emerged from the qualitative data: (i) Parents described a continual search for valid information and resources regarding their child's condition, a need that prior reports did not meet for parents; (ii) Parents believed that the Family Report would help facilitate communication with physicians and family members; and (iii) Parents identified specific items they appreciated in a genomics Family Report: simplicity of language, logical flow, visual appeal, information on what to expect in the future and recommended next steps. Parents affirmed their desire for a family genomic results report designed for their use and reference. They articulated the need for clear, easy to understand language that provided information with temporal detail and specific recommendations regarding relevant findings consistent with that available to clinicians. PMID:26086630

All together now: findings from a PCORI workshop to align patient-reported outcomes in the electronic health record

PubMed Central

Jensen, Roxanne E; Snyder, Claire F; Basch, Ethan; Frank, Lori; Wu, Albert W

2016-01-01

In recent years, patient-reported outcomes have become increasingly collected and integrated into electronic health records. However, there are few cross-cutting recommendations and limited guidance available in this rapidly developing research area. Our goal is to report key findings from a 2013 Patient-Centered Outcomes Research Institute workshop on this topic and a summary of actions that followed from the workshop, and present resulting recommendations that address patient, clinical and research/quality improvement barriers to regular use. These findings provide actionable guidance across research and practice settings to promote and sustain widespread adoption of patient-reported outcomes across patient populations, healthcare settings and electronic health record systems. PMID:27586855

All together now: findings from a PCORI workshop to align patient-reported outcomes in the electronic health record.

PubMed

Jensen, Roxanne E; Snyder, Claire F; Basch, Ethan; Frank, Lori; Wu, Albert W

2016-11-01

In recent years, patient-reported outcomes have become increasingly collected and integrated into electronic health records. However, there are few cross-cutting recommendations and limited guidance available in this rapidly developing research area. Our goal is to report key findings from a 2013 Patient-Centered Outcomes Research Institute workshop on this topic and a summary of actions that followed from the workshop, and present resulting recommendations that address patient, clinical and research/quality improvement barriers to regular use. These findings provide actionable guidance across research and practice settings to promote and sustain widespread adoption of patient-reported outcomes across patient populations, healthcare settings and electronic health record systems.

Content Validity for the VVSymQ® Instrument: A New Patient-Reported Outcome Measure for the Assessment of Varicose Veins Symptoms.

PubMed

Paty, Jean; Elash, Celeste A; Turner-Bowker, Diane M

2017-02-01

Varicose veins are common and can impact patients' quality of life, but consensus regarding the evaluation of varicose vein symptoms is lacking and existing measures have limitations. This research aimed to develop and establish the content validity of a new electronic patient-reported outcome (PRO) measure, the VVSymQ ® instrument, to assess symptoms of superficial venous insufficiency (varicose veins) in clinical trials. The development of the VVSymQ ® instrument began with qualitative interviews with patients based on the symptom domain of the VEINES-QOL/Sym, an existing PRO instrument for chronic venous disorders of the leg. Three phases of qualitative research were conducted to examine the relevance and importance of the symptoms to patients with varicose veins, and the patients' ability to understand and use the VVSymQ ® instrument. The development included evaluating questions that had 1-week and 24-h recall periods, and paper and electronic versions of the new instrument. Five symptoms (heaviness, achiness, swelling, throbbing, and itching [HASTI™]) were consistently reported by patients across all sources of qualitative data. The final version of the VVSymQ ® instrument queries patients on the HASTI™ symptoms using a 24-h recall period and a 6-point duration-based response scale ranging from "None of the time" to "All of the time," and is administered daily via an electronic diary. Cognitive interviews demonstrated varicose vein patients' understanding of and their ability to use the final version of the VVSymQ ® instrument. Content validity was established for the VVSymQ ® instrument, which assesses the five HASTI™ symptoms of varicose veins daily via an electronic diary and has promise for use in research and practice.

Nurses' shift reports: a systematic literature search and critical review of qualitative field studies.

PubMed

Buus, Niels; Hoeck, Bente; Hamilton, Bridget Elizabeth

2017-10-01

To identify reporting practices that feature in studies of nurses' shift reports across diverse nursing specialities. The objectives were to perform an exhaustive systematic literature search and to critically review the quality and findings of qualitative field studies of nurses' shift reports. Nurses' shift reports are routine occurrences in healthcare organisations that are viewed as crucial for patient outcomes, patient safety and continuity of care. Studies of communication between nurses attend primarily to 1:1 communication and analyse the adequacy and accuracy of patient information and feature handovers at the bedside. Still, verbal reports between groups of nurses about patients are commonplace. Shift reports are obvious sites for studying the situated accomplishment of professional nursing at the group level. This review is focused exclusively on qualitative field research for nuanced and contextualised insights into nurses' everyday shift reporting practices. The study is a systematic literature search and critical review of qualitative field analyses of nurses' shift reports. We searched in the databases CIHAHL, PubMed and PsycINFO and identified and reviewed 19 articles published 1992-2014. Data were systematically extracted using criteria for the evaluation of qualitative research reports. The studies described shift report practices and identified several factors contributing to distribution of clinical knowledge. Shift report practices were described as highly conventionalised and locally situated, but with occasional opportunities for improvisation and negotiation between nurses. Finally, shift reports were described as multifunctional meetings, with individual and social effects for nurses and teams. Innovations in between-shift communications can benefit from this analysis, by providing for the many functions of handovers that are revealed in field studies. Leaders and practising nurses may consider what are the best opportunities for nurses to

A review of patient and carer participation and the use of qualitative research in the development of core outcome sets.

PubMed

Jones, Janet E; Jones, Laura L; Keeley, Thomas J H; Calvert, Melanie J; Mathers, Jonathan

2017-01-01

To be meaningful, a core outcome set (COS) should be relevant to all stakeholders including patients and carers. This review aimed to explore the methods by which patients and carers have been included as participants in COS development exercises and, in particular, the use and reporting of qualitative methods. In August 2015, a search of the Core Outcomes Measures in Effectiveness Trials (COMET) database was undertaken to identify papers involving patients and carers in COS development. Data were extracted to identify the data collection methods used in COS development, the number of health professionals, patients and carers participating in these, and the reported details of qualitative research undertaken. Fifty-nine papers reporting patient and carer participation were included in the review, ten of which reported using qualitative methods. Although patients and carers participated in outcome elicitation for inclusion in COS processes, health professionals tended to dominate the prioritisation exercises. Of the ten qualitative papers, only three were reported as a clear pre-designed part of a COS process. Qualitative data were collected using interviews, focus groups or a combination of these. None of the qualitative papers reported an underpinning methodological framework and details regarding data saturation, reflexivity and resource use associated with data collection were often poorly reported. Five papers reported difficulty in achieving a diverse sample of participants and two reported that a large and varied range of outcomes were often identified by participants making subsequent rating and ranking difficult. Consideration of the best way to include patients and carers throughout the COS development process is needed. Additionally, further work is required to assess the potential role of qualitative methods in COS, to explore the knowledge produced by different qualitative data collection methods, and to evaluate the time and resources required to

A review of patient and carer participation and the use of qualitative research in the development of core outcome sets

PubMed Central

2017-01-01

Background To be meaningful, a core outcome set (COS) should be relevant to all stakeholders including patients and carers. This review aimed to explore the methods by which patients and carers have been included as participants in COS development exercises and, in particular, the use and reporting of qualitative methods. Methods In August 2015, a search of the Core Outcomes Measures in Effectiveness Trials (COMET) database was undertaken to identify papers involving patients and carers in COS development. Data were extracted to identify the data collection methods used in COS development, the number of health professionals, patients and carers participating in these, and the reported details of qualitative research undertaken. Results Fifty-nine papers reporting patient and carer participation were included in the review, ten of which reported using qualitative methods. Although patients and carers participated in outcome elicitation for inclusion in COS processes, health professionals tended to dominate the prioritisation exercises. Of the ten qualitative papers, only three were reported as a clear pre-designed part of a COS process. Qualitative data were collected using interviews, focus groups or a combination of these. None of the qualitative papers reported an underpinning methodological framework and details regarding data saturation, reflexivity and resource use associated with data collection were often poorly reported. Five papers reported difficulty in achieving a diverse sample of participants and two reported that a large and varied range of outcomes were often identified by participants making subsequent rating and ranking difficult. Conclusions Consideration of the best way to include patients and carers throughout the COS development process is needed. Additionally, further work is required to assess the potential role of qualitative methods in COS, to explore the knowledge produced by different qualitative data collection methods, and to evaluate

Electronic capture of patient-reported and clinician-reported outcome measures in an elective orthopaedic setting: a retrospective cohort analysis.

PubMed

Malhotra, Karan; Buraimoh, Olatunbosun; Thornton, James; Cullen, Nicholas; Singh, Dishan; Goldberg, Andrew J

2016-06-20

To determine whether an entirely electronic system can be used to capture both patient-reported outcomes (electronic Patient-Reported Outcome Measures, ePROMs) as well as clinician-validated diagnostic and complexity data in an elective surgical orthopaedic outpatient setting. To examine patients' experience of this system and factors impacting their experience. Retrospective analysis of prospectively collected data. Single centre series. Outpatient clinics at an elective foot and ankle unit in the UK. All new adult patients attending elective orthopaedic outpatient clinics over a 32-month period. All patients were invited to complete ePROMs prior to attending their outpatient appointment. At their appointment, those patients who had not completed ePROMs were offered the opportunity to complete it on a tablet device with technical support. Matched diagnostic and complexity data were captured by the treating consultant during the appointment. Capture rates of patient-reported and clinician-reported data. All information and technology (IT) failures, language and disability barriers were captured. Patients were asked to rate their experience of using ePROMs. The scoring systems used included EQ-5D-5L, the Manchester-Oxford Foot Questionnaire (MOxFQ) and the Visual Analogue Scale (VAS) pain score. Out of 2534 new patients, 2176 (85.9%) completed ePROMs, of whom 1090 (50.09%) completed ePROMs at home/work prior to their appointment. 31.5% used a mobile (smartphone/tablet) device. Clinician-reported data were captured on 2491 patients (98.3%). The mean patient experience score of using Patient-Reported Outcome Measures (PROMs) was 8.55±1.85 out of 10 and 666 patients (30.61%) left comments. Of patients leaving comments, 214 (32.13%) felt ePROMs did not adequately capture their symptoms and these patients had significantly lower patient experience scores (p<0.001). This study demonstrates the successful implementation of technology into a service improvement programme

An initial, qualitative investigation of patient-centered education in dentistry.

PubMed

Clayton, Marc; Borromeo, Chuck; Hess, Sherry; Hochheiser, Harry; Schleyer, Titus

2013-01-01

Patient education plays an important role in the delivery of dental care. Current evidence suggests that the emergence of the Internet and other electronic resources are significantly influencing how patients learn about their healthcare. We conducted a qualitative inquiry using a combination of interviews with patients and clinicians, and direct observation of patient education episodes, to begin identifying requirements for customized, patient-centered approaches to education at the point of care. Most patients in our study felt comfortable with the amount and method of education during the dental visit, but 38% sought additional information on the Internet. Dentists and their team members provided patient education mostly verbally, supported by media such as radiographs, images and models. Electronic means, especially the Internet, were little used. Patient education occupied a significant portion of the time of initial comprehensive examination (29%) and routine (7%) dental visits. A deeper understanding of patient knowledge deficits and information needs will be needed to design effective educational interventions. Patient education should be meaningfully integrated into the workflow shared by dentists, their team members and patients, in order to maximize its outcomes.

Qualitative Methods in Patient-Centered Outcomes Research.

PubMed

Vandermause, Roxanne; Barg, Frances K; Esmail, Laura; Edmundson, Lauren; Girard, Samantha; Perfetti, A Ross

2017-02-01

The Patient-Centered Outcomes Research Institute (PCORI), created to fund research guided by patients, caregivers, and the broader health care community, offers a new research venue. Many (41 of 50) first funded projects involved qualitative research methods. This study was completed to examine the current state of the science of qualitative methodologies used in PCORI-funded research. Principal investigators participated in phenomenological interviews to learn (a) how do researchers using qualitative methods experience seeking funding for, implementing and disseminating their work; and (b) how may qualitative methods advance the quality and relevance of evidence for patients? Results showed the experience of doing qualitative research in the current research climate as "Being a bona fide qualitative researcher: Staying true to research aims while negotiating challenges," with overlapping patterns: (a) researching the elemental, (b) expecting surprise, and (c) pushing boundaries. The nature of qualitative work today was explicitly described and is rendered in this article.

Use of the Blue Button Online Tool for Sharing Health Information: Qualitative Interviews With Patients and Providers.

PubMed

Klein, Dawn M; Fix, Gemmae M; Hogan, Timothy P; Simon, Steven R; Nazi, Kim M; Turvey, Carolyn L

2015-08-18

Information sharing between providers is critical for care coordination, especially in health systems such as the United States Department of Veterans Affairs (VA), where many patients also receive care from other health care organizations. Patients can facilitate this sharing by using the Blue Button, an online tool that promotes patients' ability to view, print, and download their health records. The aim of this study was to characterize (1) patients' use of Blue Button, an online information-sharing tool in VA's patient portal, My HealtheVet, (2) information-sharing practices between VA and non-VA providers, and (3) how providers and patients use a printed Blue Button report during a clinical visit. Semistructured qualitative interviews were conducted with 34 VA patients, 10 VA providers, and 9 non-VA providers. Interviews focused on patients' use of Blue Button, information-sharing practices between VA and non-VA providers, and how patients and providers use a printed Blue Button report during a clinical visit. Qualitative themes were identified through iterative rounds of coding starting with an a priori schema based on technology adoption theory. Information sharing between VA and non-VA providers relied primarily on the patient. Patients most commonly used Blue Button to access and share VA laboratory results. Providers recognized the need for improved information sharing, valued the Blue Button printout, and expressed interest in a way to share information electronically across settings. Consumer-oriented technologies such as Blue Button can facilitate patients sharing health information with providers in other health care systems; however, more education is needed to inform patients of this use to facilitate care coordination. Additional research is needed to explore how personal health record documents, such as Blue Button reports, can be easily shared and incorporated into the clinical workflow of providers.

The experience of acute leukaemia in adult patients: a qualitative thematic synthesis.

PubMed

Papadopoulou, Constantina; Johnston, Bridget; Themessl-Huber, Markus

2013-10-01

The aim of this review was to systematically identify and synthesise all qualitative evidence on how adult patients diagnosed with acute leukaemia experience living with their illness. A systematic search strategy was developed comprising of two search strings: i) acute leukaemia and ii) qualitative methodology. The search strategy was run in seven electronic databases (Medline, CINAHL, PsychINFO, EMBASE, BNI & Archive, SSCI and ASSIA). Nine qualitative studies in adult patients with acute leukaemia, published in peer reviewed journals between 01/1990 and 01/2013 were included in the final sample. The qualitative thematic synthesis resulted in the development of a conceptual model describing a person's path to build a renewed self. Following the initial blow of diagnosis with the range of initial reactions, patients with acute leukaemia are living in a contracting world; they have to deal with the life in hospital, the several losses and the impact of their illness on their emotions and interpersonal relationships. Several factors take up a buffering role at that stage: coping, support, information and hope. Finally, patients accommodate acute leukaemia in their lives through re-evaluating personal values and assigning new meaning to their experience. Results from this thematic synthesis are indicative of the impact of acute leukaemia on patients' lives and the processes they use to make sense and accommodate the illness in their life. Increasing our understanding of these processes is warranted to improve patient care. Copyright © 2013. Published by Elsevier Ltd.

Screening Electronic Health Record-Related Patient Safety Reports Using Machine Learning.

PubMed

Marella, William M; Sparnon, Erin; Finley, Edward

2017-03-01

The objective of this study was to develop a semiautomated approach to screening cases that describe hazards associated with the electronic health record (EHR) from a mandatory, population-based patient safety reporting system. Potentially relevant cases were identified through a query of the Pennsylvania Patient Safety Reporting System. A random sample of cases were manually screened for relevance and divided into training, testing, and validation data sets to develop a machine learning model. This model was used to automate screening of remaining potentially relevant cases. Of the 4 algorithms tested, a naive Bayes kernel performed best, with an area under the receiver operating characteristic curve of 0.927 ± 0.023, accuracy of 0.855 ± 0.033, and F score of 0.877 ± 0.027. The machine learning model and text mining approach described here are useful tools for identifying and analyzing adverse event and near-miss reports. Although reporting systems are beginning to incorporate structured fields on health information technology and the EHR, these methods can identify related events that reporters classify in other ways. These methods can facilitate analysis of legacy safety reports by retrieving health information technology-related and EHR-related events from databases without fields and controlled values focused on this subject and distinguishing them from reports in which the EHR is mentioned only in passing. Machine learning and text mining are useful additions to the patient safety toolkit and can be used to semiautomate screening and analysis of unstructured text in safety reports from frontline staff.

Use of the Blue Button Online Tool for Sharing Health Information: Qualitative Interviews With Patients and Providers

PubMed Central

Fix, Gemmae M; Hogan, Timothy P; Simon, Steven R; Nazi, Kim M; Turvey, Carolyn L

2015-01-01

Background Information sharing between providers is critical for care coordination, especially in health systems such as the United States Department of Veterans Affairs (VA), where many patients also receive care from other health care organizations. Patients can facilitate this sharing by using the Blue Button, an online tool that promotes patients’ ability to view, print, and download their health records. Objective The aim of this study was to characterize (1) patients’ use of Blue Button, an online information-sharing tool in VA’s patient portal, My HealtheVet, (2) information-sharing practices between VA and non-VA providers, and (3) how providers and patients use a printed Blue Button report during a clinical visit. Methods Semistructured qualitative interviews were conducted with 34 VA patients, 10 VA providers, and 9 non-VA providers. Interviews focused on patients’ use of Blue Button, information-sharing practices between VA and non-VA providers, and how patients and providers use a printed Blue Button report during a clinical visit. Qualitative themes were identified through iterative rounds of coding starting with an a priori schema based on technology adoption theory. Results Information sharing between VA and non-VA providers relied primarily on the patient. Patients most commonly used Blue Button to access and share VA laboratory results. Providers recognized the need for improved information sharing, valued the Blue Button printout, and expressed interest in a way to share information electronically across settings. Conclusions Consumer-oriented technologies such as Blue Button can facilitate patients sharing health information with providers in other health care systems; however, more education is needed to inform patients of this use to facilitate care coordination. Additional research is needed to explore how personal health record documents, such as Blue Button reports, can be easily shared and incorporated into the clinical workflow of

Electronic patient portals: evidence on health outcomes, satisfaction, efficiency, and attitudes: a systematic review.

PubMed

Goldzweig, Caroline Lubick; Orshansky, Greg; Paige, Neil M; Towfigh, Ali Alexander; Haggstrom, David A; Miake-Lye, Isomi; Beroes, Jessica M; Shekelle, Paul G

2013-11-19

Patient portals tied to provider electronic health record (EHR) systems are increasingly popular. To systematically review the literature reporting the effect of patient portals on clinical care. PubMed and Web of Science searches from 1 January 1990 to 24 January 2013. Hypothesis-testing or quantitative studies of patient portals tethered to a provider EHR that addressed patient outcomes, satisfaction, adherence, efficiency, utilization, attitudes, and patient characteristics, as well as qualitative studies of barriers or facilitators, were included. Two reviewers independently extracted data and addressed discrepancies through consensus discussion. From 6508 titles, 14 randomized, controlled trials; 21 observational, hypothesis-testing studies; 5 quantitative, descriptive studies; and 6 qualitative studies were included. Evidence is mixed about the effect of portals on patient outcomes and satisfaction, although they may be more effective when used with case management. The effect of portals on utilization and efficiency is unclear, although patient race and ethnicity, education level or literacy, and degree of comorbid conditions may influence use. Limited data for most outcomes and an absence of reporting on organizational and provider context and implementation processes. Evidence that patient portals improve health outcomes, cost, or utilization is insufficient. Patient attitudes are generally positive, but more widespread use may require efforts to overcome racial, ethnic, and literacy barriers. Portals represent a new technology with benefits that are still unclear. Better understanding requires studies that include details about context, implementation factors, and cost.

Implications of electronic health record downtime: an analysis of patient safety event reports.

PubMed

Larsen, Ethan; Fong, Allan; Wernz, Christian; Ratwani, Raj M

2018-02-01

We sought to understand the types of clinical processes, such as image and medication ordering, that are disrupted during electronic health record (EHR) downtime periods by analyzing the narratives of patient safety event report data. From a database of 80 381 event reports, 76 reports were identified as explicitly describing a safety event associated with an EHR downtime period. These reports were analyzed and categorized based on a developed code book to identify the clinical processes that were impacted by downtime. We also examined whether downtime procedures were in place and followed. The reports were coded into categories related to their reported clinical process: Laboratory, Medication, Imaging, Registration, Patient Handoff, Documentation, History Viewing, Delay of Procedure, and General. A majority of reports (48.7%, n = 37) were associated with lab orders and results, followed by medication ordering and administration (14.5%, n = 11). Incidents commonly involved patient identification and communication of clinical information. A majority of reports (46%, n = 35) indicated that downtime procedures either were not followed or were not in place. Only 27.6% of incidents (n = 21) indicated that downtime procedures were successfully executed. Patient safety report data offer a lens into EHR downtime-related safety hazards. Important areas of risk during EHR downtime periods were patient identification and communication of clinical information; these should be a focus of downtime procedure planning to reduce safety hazards. EHR downtime events pose patient safety hazards, and we highlight critical areas for downtime procedure improvement. © The Author 2017. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com

Using the Electronic Medical Record to Enhance Physician-Nurse Communication Regarding Patients' Discharge Status.

PubMed

Driscoll, Molly; Gurka, David

2015-01-01

The fast-paced environment of hospitals contributes to communication failures between health care providers while impacting patient care and patient flow. An effective mechanism for sharing patients' discharge information with health care team members is required to improve patient throughput. The communication of a patient's discharge plan was identified as crucial in alleviating patient flow delays at a tertiary care, academic medical center. By identifying the patients who were expected to be discharged the following day, the health care team could initiate discharge preparations in advance to improve patient care and patient flow. The patients' electronic medical record served to convey dynamic information regarding the patients' discharge status to the health care team via conditional discharge orders. Two neurosciences units piloted a conditional discharge order initiative. Conditional discharge orders were designed in the electronic medical record so that the conditions for discharge were listed in a dropdown menu. The health care team was trained on the conditional discharge order protocol, including when to write them, how to find them in the patients' electronic medical record, and what actions should be prompted by these orders. On average, 24% of the patients discharged had conditional discharge orders written the day before discharge. The average discharge time for patients with conditional discharge orders decreased by 83 minutes (0.06 day) from baseline. Qualitatively, the health care team reported improved workflows with conditional orders. The conditional discharge orders allowed physicians to communicate pending discharges electronically to the multidisciplinary team. The initiative positively impacted patient discharge times and workflows.

Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system.

PubMed

Ashley, Laura; Jones, Helen; Forman, David; Newsham, Alex; Brown, Julia; Downing, Amy; Velikova, Galina; Wright, Penny

2011-10-26

Cancer survivors can face significant physical and psychosocial challenges; there is a need to identify and predict which survivors experience what sorts of difficulties. As highlighted in the UK National Cancer Survivorship Initiative, routine post-diagnostic collection of patient reported outcome measures (PROMs) is required; to be most informative, PROMs must be linked and analysed with patients' diagnostic and treatment information. We have designed and built a potentially cost-efficient UK-scalable electronic system for collecting PROMs via the internet, at regular post-diagnostic time-points, for linking these data with patients' clinical data in cancer registries, and for electronically managing the associated patient monitoring and communications; the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. This study aims to test the feasibility of the ePOCS system, by running it for 2 years in two Yorkshire NHS Trusts, and using the Northern and Yorkshire Cancer Registry and Information Service. Non-metastatic breast, colorectal and prostate cancer patients (largest survivor groups), within 6 months post-diagnosis, will be recruited from hospitals in the Yorkshire Cancer Network. Participants will be asked to complete PROMS, assessing a range of health-related quality-of-life outcomes, at three time-points up to 15 months post-diagnosis, and subsequently to provide opinion on the ePOCS system via a feedback questionnaire. Feasibility will be examined primarily in terms of patient recruitment and retention rates, the representativeness of participating patients, the quantity and quality of collected PROMs data, patients' feedback, the success and reliability of the underpinning informatics, and the system running costs. If sufficient data are generated during system testing, these will be analysed to assess the health-related quality-of-life outcomes reported by patients, and to explore if and how they relate to disease, treatment and

[Electronic versus paper-based patient records: a cost-benefit analysis].

PubMed

Neubauer, A S; Priglinger, S; Ehrt, O

2001-11-01

The aim of this study is to compare the costs and benefits of electronic, paperless patient records with the conventional paper-based charts. Costs and benefits of planned electronic patient records are calculated for a University eye hospital with 140 beds. Benefit is determined by direct costs saved by electronic records. In the example shown, the additional benefits of electronic patient records, as far as they can be quantified total 192,000 DM per year. The costs of the necessary investments are 234,000 DM per year when using a linear depreciation over 4 years. In total, there are additional annual costs for electronic patient records of 42,000 DM. Different scenarios were analyzed. By increasing the time of depreciation to 6 years, the cost deficit reduces to only approximately 9,000 DM. Increased wages reduce the deficit further while the deficit increases with a loss of functions of the electronic patient record. However, several benefits of electronic records regarding research, teaching, quality control and better data access cannot be easily quantified and would greatly increase the benefit to cost ratio. Only part of the advantages of electronic patient records can easily be quantified in terms of directly saved costs. The small cost deficit calculated in this example is overcompensated by several benefits, which can only be enumerated qualitatively due to problems in quantification.

Improving patient-centered communication while using an electronic health record: Report from a curriculum evaluation.

PubMed

Fogarty, Colleen T; Winters, Paul; Farah, Subrina

2016-05-01

Researchers and clinicians are concerned about the impact of electronic health record use and patient-centered communication. Training about patient-centered clinical communication skills with the electronic health record may help clinicians adapt and remain patient-centered. We developed an interactive workshop eliciting challenges and opportunities of working with the electronic health record in clinical practice, introduction of specific patient-centered behaviors and mindful practice techniques, and video demonstrating contrasts in common behavior and "better practices." One hundred thirty-nine resident physicians and faculty supervisors in five residency training programs at the University of Rochester Medical Center participated in the workshops. Participants were asked to complete an 11-item survey of behaviors related to their use of the electronic health record prior to training and after attending training. We used paired t-tests to assess changes in self-reported behavior from pre-intervention to post-intervention. We trained 139 clinicians in the workshops; 110 participants completed the baseline assessment and 39 completed both the baseline and post-intervention assessment. Data from post-curriculum respondents found a statistically significant increase in "I told the patient when turning my attention from the patient to the computer," from 60% of the time prior to the training to 70% of the time after. Data from our program evaluation demonstrated improvement in one communication behavior. Sample size limited the detection of other changes; further research should investigate effective training techniques for patient-centered communication while using the electronic health record. © The Author(s) 2016.

A qualitative evaluation of a comprehensive self-management programme for COPD patients: effectiveness from the patients' perspective.

PubMed

Monninkhof, Evelyn; van der Aa, Maaike; van der Valk, Paul; van der Palen, Job; Zielhuis, Gerhard; Koning, Karen; Pieterse, Marcel

2004-11-01

The COPE self-management programme, including a self-management education course, self-treatment of exacerbations and a fitness programme, appeared to have no significant effect on health related quality of life (HRQoL) as measured by the St. George's Respiratory Questionnaire (SGRQ). This is in contrast to our hypothesis and despite expressions of satisfaction of patients to healthcare workers. To understand this discrepancy, a qualitative study was performed. A purposive sample of 20 participants of the COPE self-management programme were interviewed at home using in-depth, semi-structured interviews. Interviews were audio taped and transcribed verbatim and analysed according grounded theory. The fitness programme was most positively evaluated by patients due to the perceived increase of exercise capacity and the social aspect of the group training. Major effects gained by the self-management education course reported by patients were the skills to evenly distribute their energy and to listen to their body signals. Most patients thought favourable about self-treatment of exacerbations. The possibility to start early, not having to call a doctor and autonomy were raised as important advantages. Furthermore, several patients reported increased self-confidence and coping behaviour as important effects of the COPE programme. Finally, many patients reported feeling safe due to the frequent follow-up visits and 24h access to the hospital, and this aspect elicited to be very important. In this study, the qualitative interviews suggest that the SGRQ and possibly other existing HRQoL instruments might fail to capture the full experience of patients in self-management studies. The need for more elaborate qualitative research on this subject is indicated.

Comparison of 99mTc-MDP SPECT qualitative vs quantitative results in patients with suspected condylar hyperplasia.

PubMed

López Buitrago, D F; Ruiz Botero, J; Corral, C M; Carmona, A R; Sabogal, A

To compare qualitative vs quantitative results of Single Photon Emission Computerised Tomography (SPECT), calculated from percentage of 99m Tc-MDP (methylene diphosphonate) uptake, in condyles of patients with a presumptive clinical diagnosis of condylar hyperplasia. A retrospective, descriptive study was conducted on the 99m Tc-MDP SPECT bone scintigraphy reports from 51 patients, with clinical impression of facial asymmetry related to condylar hyperplasia referred by their specialist in orthodontics or maxillofacial surgery, to a nuclear medicine department in order to take this type of test. Quantitative data from 99m Tc-MDP condylar uptake of each were obtained and compared with qualitative image interpretation reported by a nuclear medicine expert. The concordances between the 51 qualitative and quantitative reports results was established. The total sample included 32 women (63%) and 19 men (37%). The patient age range was 13-45 years (21±8 years). According to qualitative reports, 19 patients were positive for right side condylar hyperplasia, 12 for left side condylar hyperplasia, with 8 bilateral, and 12 negative. The quantitative reports diagnosed 16 positives for right side condylar hyperplasia, 10 for left side condylar hyperplasia, and 25 negatives. Nuclear medicine images are an important diagnostic tool, but the qualitative interpretation of the images is not as reliable as the quantitative calculation. The agreement between the two types of report is low (39.2%, Kappa=0.13; P>.2). The main limitation of quantitative reports is that they do not register bilateral condylar hyperplasia cases. Copyright © 2017 Elsevier España, S.L.U. y SEMNIM. All rights reserved.

Quality of life among dermatology patients: a systematic review of investigations using qualitative methods.

PubMed

Singh, Sanminder; Ehsani-Chimeh, Nazanin; Kornmehl, Heather; Armstrong, April W

2017-07-13

Quality of life may be assessed using quantitative or qualitative methods. Quantitative methods are commonly used in research settings; however, they may fail to capture the full range of patient experiences and impact on quality of life. Qualitative methods may be used to address this limitation. In this systematic review, we aim to synthesize data from articles utilizing qualitative methods to assess quality of life in dermatology patients. We performed a systematic review search using the MEDLINE, EMBASE, and SCOPUS databases. The search was conducted using the following search criteria: ("Dermatology" [MeSH]) AND ("Quality of Life" [MeSH]), AND ("Qualitative Research" [MeSH]), searching literature spanning from January 1, 1946- October 5, 2016. The systematic review of 15 articles included 533 dermatology patients. Patients expressed frustration over the unpredictability of disease symptoms and having to compensate for the subsequent limitations by altering their daily routines. Patients also reported profound helplessness due to chronic skin disease and social isolation in an effort to hide their disease. Patients noted the patient-provider relationship as a source of support and information exchange, with the goal to form easy to use treatment plans that met both physician and patient expectations. Qualitative assessment of patient quality of life can provide new insights into the patient experience and the impact of their skin disease. Qualitative methodology may capture meaningful information that may be overlooked by quantitative methods, and it should be included in quality of life research.

Electronic Patient Reported Outcomes in Paediatric Oncology - Applying Mobile and Near Field Communication Technology.

PubMed

Duregger, Katharina; Hayn, Dieter; Nitzlnader, Michael; Kropf, Martin; Falgenhauer, Markus; Ladenstein, Ruth; Schreier, Günter

2016-01-01

Electronic Patient Reported Outcomes (ePRO) gathered using telemonitoring solutions might be a valuable source of information in rare cancer research. The objective of this paper was to develop a concept and implement a prototype for introducing ePRO into the existing neuroblastoma research network by applying Near Field Communication and mobile technology. For physicians, an application was developed for registering patients within the research network and providing patients with an ID card and a PIN for authentication when transmitting telemonitoring data to the Electronic Data Capture system OpenClinica. For patients, a previously developed telemonitoring system was extended by a Simple Object Access Protocol (SOAP) interface for transmitting nine different health parameters and toxicities. The concept was fully implemented on the front-end side. The developed application for physicians was prototypically implemented and the mobile application of the telemonitoring system was successfully connected to OpenClinica. Future work will focus on the implementation of the back-end features.

Development of a Patient-Reported Outcome Instrument to Evaluate Symptoms of Advanced NSCLC: Qualitative Research and Content Validity of the Non-Small Cell Lung Cancer Symptom Assessment Questionnaire (NSCLC-SAQ)

PubMed Central

Atkinson, Thomas M.; DeBusk, Kendra P.A.; Liepa, Astra M.; Scanlon, Michael; Coons, Stephen Joel

2016-01-01

PURPOSE To describe the process and results of the preliminary qualitative development of a new symptom-based PRO measure intended to assess treatment benefit in advanced non-small cell lung cancer (NSCLC) clinical trials. METHODS Individual qualitative interviews were conducted with adult NSCLC (Stage I–IV) patients in the US. Experienced interviewers conducted concept elicitation (CE) and cognitive interviews using semi-structured interview guides. The CE interview guide was used to elicit spontaneous reports of symptom experiences along with probing to further explore and confirm concepts. Interview transcripts were coded and analyzed by professional qualitative coders using Atlas.ti software, and were summarized by like-content using an iterative coding framework. Data from the CE interviews were considered alongside existing literature and clinical expert opinion during an item-generation process, leading to development of a preliminary version of the NSCLC Symptom Assessment Questionnaire (NSCLC-SAQ). Three waves of cognitive interviews were conducted to evaluate concept relevance, item interpretability, and structure of the draft items to facilitate further instrument refinement. FINDINGS Fifty-one patients (mean age 64.9 [SD=11.2]; 51.0% female) participated in the CE interviews. A total of 1,897 expressions of NSCLC-related symptoms were identified and coded in interview transcripts, representing approximately 42 distinct symptom concepts. A 9-item initial draft instrument was developed for testing in three waves of cognitive interviews with additional NSCLC patients (n=20), during which both paper and electronic versions of the instrument were evaluated and refined. Participant responses and feedback during cognitive interviews led to the removal of 2 items and substantial modifications to others. IMPLICATIONS The NSCLC-SAQ is a 7-item PRO measure intended for use in advanced NSCLC clinical trials to support medical product labelling. The NSCLC-SAQ uses

Capturing the Patient’s Experience: Using Qualitative Methods to Develop a Measure of Patient-Reported Symptom Burden: An Example from Ovarian Cancer

PubMed Central

Williams, Loretta A.; Agarwal, Sonika; Bodurka, Diane C.; Saleeba, Angele K.; Sun, Charlotte C.; Cleeland, Charles S.

2013-01-01

Context Experts in patient-reported outcome (PRO) measurement emphasize the importance of including patient input in the development of PRO measures. Although best methods for acquiring this input are not yet identified, patient input early in instrument development ensures that instrument content captures information most important and relevant to patients in understandable terms. Objectives The M. D. Anderson Symptom Inventory (MDASI) is a reliable, valid PRO instrument for assessing cancer symptom burden. We report a qualitative (open-ended, in-depth) interviewing method that can be used to incorporate patient input into PRO symptom measure development, with our experience in constructing a MDASI module for ovarian cancer (MDASI-OC) as a model. Methods Fourteen patients with ovarian cancer (OC) described symptoms experienced at the time of the study, at diagnosis, and during prior treatments. Researchers and clinicians used content analysis of interview transcripts to identify symptoms in patient language. Symptoms were ranked on the basis of the number of patients mentioning them and by clinician assessment of relevance. Results Forty-two symptoms were mentioned. Eight OC-specific items will be added to the 13 core symptom items and six interference items of the MDASI in a test version of the MDASI-OC based on the number of patients mentioning them and clinician assessment of importance. The test version is undergoing psychometric evaluation. Conclusion The qualitative interviewing process, used to develop the test MDASI-OC, systematically captures common symptoms important to patients with ovarian cancer. This methodology incorporates the patient experience recommended by experts in PRO instrument development. PMID:23615044

Reporting Qualitative Research: Standards, Challenges, and Implications for Health Design.

PubMed

Peditto, Kathryn

2018-04-01

This Methods column describes the existing reporting standards for qualitative research, their application to health design research, and the challenges to implementation. Intended for both researchers and practitioners, this article provides multiple perspectives on both reporting and evaluating high-quality qualitative research. Two popular reporting standards exist for reporting qualitative research-the Consolidated Criteria for Reporting Qualitative Research (COREQ) and the Standards for Reporting Qualitative Research (SRQR). Though compiled using similar procedures, they differ in their criteria and the methods to which they apply. Creating and applying reporting criteria is inherently difficult due to the undefined and fluctuating nature of qualitative research when compared to quantitative studies. Qualitative research is expansive and occasionally controversial, spanning many different methods of inquiry and epistemological approaches. A "one-size-fits-all" standard for reporting qualitative research can be restrictive, but COREQ and SRQR both serve as valuable tools for developing responsible qualitative research proposals, effectively communicating research decisions, and evaluating submissions. Ultimately, tailoring a set of standards specific to health design research and its frequently used methods would ensure quality research and aid reviewers in their evaluations.

Massage for Children Undergoing Hematopoietic Cell Transplantation: A Qualitative Report

PubMed Central

Ackerman, Sara L.; Lown, E. Anne; Dvorak, Christopher C.; Dunn, Elizabeth A.; Abrams, Donald I.; Horn, Biljana N.; Degelman, Marcia; Cowan, Morton J.; Mehling, Wolf E.

2012-01-01

Background. No in-depth qualitative research exists about the effects of therapeutic massage with children hospitalized to undergo hematopoietic cell transplantation (HCT). The objective of this study is to describe parent caregivers' experience of the effects of massage/acupressure for their children undergoing HCT. Methods. We conducted a qualitative analysis of open-ended interviews with 15 parents of children in the intervention arm of a massage/acupressure trial. Children received both practitioner and parent-provided massage/acupressure. Results. Parents reported that their child experienced relief from pain and nausea, relaxation, and greater ease falling asleep. They also reported increased caregiver competence and closeness with their child as a result of learning and performing massage/acupressure. Parents supported a semistandardized massage protocol. Conclusion. Massage/acupressure may support symptom relief and promote relaxation and sleep among pediatric HCT patients if administered with attention to individual patients' needs and hospital routines and may relieve stress among parents, improve caregiver competence, and enhance the sense of connection between parent and child. PMID:22474526

A qualitative meta-summary using Sandelowski and Barroso's method for integrating qualitative research to explore barriers and facilitators to self-care in heart failure patients.

PubMed

Herber, Oliver Rudolf; Bücker, Bettina; Metzendorf, Maria-Inti; Barroso, Julie

2017-12-01

Individual qualitative studies provide varied reasons for why heart failure patients do not engage in self-care, yet articles that aggregated primary studies on the subject have methodological weaknesses that justified the execution of a qualitative meta-summary. The aim of this study is to integrate the findings of qualitative studies pertaining to barriers and facilitators to self-care using meta-summary techniques. Qualitative meta-summary techniques by Sandelowski and Barroso were used to combine the findings of qualitative studies. Meta-summary techniques include: (1) extraction of relevant statements of findings from each report; (2) reduction of these statements into abstracted findings and (3) calculation of effect sizes. Databases were searched systematically for qualitative studies published between January 2010 and July 2015. Out of 2264 papers identified, 31 reports based on the accounts of 814 patients were included in the meta-summary. A total of 37 statements of findings provided a comprehensive inventory of findings across all reports. Out of these statements of findings, 21 were classified as barriers, 13 as facilitators and three were classed as both barriers and facilitators. The main themes relating to barriers and facilitators to self-care were: beliefs, benefits of self-care, comorbidities, financial constraints, symptom recognition, ethnic background, inconsistent self-care, insufficient information, positive and negative emotions, organizational context, past experiences, physical environment, self-initiative, self-care adverse effects, social context and personal preferences. Based on the meta-findings identified in this study, future intervention development could address these barriers and facilitators in order to further enhance self-care abilities in heart failure patients.

Notions of quality and standards for qualitative research reporting.

PubMed

Pearson, Alan; Jordan, Zoe; Lockwood, Craig; Aromataris, Ed

2015-10-01

The utility of qualitative research findings in the health sciences has been the subject of considerable debate, particularly with the advent of qualitative systematic reviews in recent years. There has been a significant investment in the production of guidance to improve the reporting of quantitative research; however, comparatively little time has been spent on developing the same for qualitative research reporting. This paper sets out to examine the possibility of developing a framework for refereed journals to utilize when guiding authors on how to report the results of qualitative studies in the hope that this will improve the quality of reports and subsequently their inclusion in qualitative syntheses and guidelines to inform practice at the point of care. © 2014 Wiley Publishing Asia Pty Ltd.

A prospective qualitative study on patients' perceptions of endoscopic endonasal transsphenoidal surgery.

PubMed

Edem, Idara J; Banton, Beverly; Bernstein, Mark; Lwu, Shelly; Vescan, Allan; Gentilli, Fred; Zadeh, Gelareh

2013-02-01

Endoscopic transsphenoidal surgery has been shown to be a safe and effective treatment option for patients with pituitary tumours, but no study has explored patients' perceptions before and after this surgery. The authors in this study aim to explore patients' perceptions on endoscopic transsphenoidal surgery. Using qualitative research methodology, two semi-structured interviews were conducted with 30 participants who were adults aged > 18 undergoing endoscopic transsphenoidal surgery for the resection of a pituitary tumour between December 2008 and June 2011. The interviews were audiotaped and transcribed. The resulting data was analyzed using a modified thematic analysis. Seven overarching themes were identified: (1) Patients had a positive surgical experience; (2) patients were satisfied with the results of the procedure; (3) patients were initially surprised that neurosurgery could be performed endonasally; (4) patients expected a cure and to feel better after the surgery; (5) many patients feared that something might go wrong during the surgery; (6) patients were psychologically prepared for the surgery; (7) most patients reported receiving adequate pre-op and post-op information. This is the first qualitative study reporting on patients' perceptions before and after an endoscopic endonasal transsphenoidal pituitary surgery, which is increasingly used as a standard surgical approach for patients with pituitary tumours. Patients report a positive perception and general satisfaction with the endoscopic transsphenoidal surgical experience. However, there is still room for improvement in post-surgical care. Overall, patients' perceptions can help improve the delivery of comprehensive care to future patients undergoing pituitary tumour surgery.

Economic Analysis of the National Pollutant Discharge Elimination System (NPDES) Electronic Reporting Final Rule

EPA Pesticide Factsheets

This Economic Analysis (EA) quantifies the costs and savings of the proposed NPDES Electronic Reporting Rule, while acknowledging many of the qualitative benefits that will result from its implementation.

Writing a qualitative research report.

PubMed

Burnard, Philip

2004-04-01

A research project in nursing or nursing education is probably only complete once the findings have been published. This paper offers a format for writing a qualitative research report for publication. It suggests, at least, the following sections: introduction, aims of the study, review of the literature, sample, data collection methods, data analysis methods, findings, discussion, conclusion, abstract. Each of these sections is addressed along with many written-out examples. In some sections, alternative approaches are suggested. The aim of the paper is to help the neophyte researcher to structure his or her report and for the experienced researcher to reflect on his or her current practice. References to other source material on qualitative research are given.

Writing a qualitative research report.

PubMed

Burnard, Philip

2004-07-01

A research project in nursing or nursing education is probably only complete once the findings have been published. This paper offers a format for writing a qualitative research report for publication. It suggests, at least, the following sections: introduction, aims of the study, review of the literature, sample, data collection methods, data analysis methods, findings, discussion, conclusion, abstract. Each of these sections is addressed along with many written-out examples. In some sections, alternative approaches are suggested. The aim of the paper is to help the neophyte researcher to structure his or her report and for the experienced researcher to reflect on his or her current practice. References to other source material on qualitative research are given.

CBT for Pediatric Migraine: A Qualitative Study of Patient and Parent Experience.

PubMed

Kroon Van Diest, Ashley M; Ernst, Michelle M; Vaughn, Lisa; Slater, Shalonda; Powers, Scott W

2018-03-08

The goal of this study was to determine which cognitive behavioral therapy (CBT-HA) treatment components pediatric headache patient stakeholders would report to be most helpful and essential to reducing headache frequency and related disability to develop a streamlined, less burdensome treatment package that would be more accessible to patients and families. Pediatric migraine is a prevalent and disabling condition. CBT-HA has been shown to reduce headache frequency and related disability, but may not be readily available or accepted by many migraine sufferers due to treatment burden entailed. Research is needed to determine systematic ways of reducing barriers to CBT-HA. Qualitative interviews were conducted with 10 patients and 9 of their parents who had undergone CBT-HA. Interviews were analyzed using an inductive thematic analysis approach based upon modified grounded theory. Patients were 13-17.5 years of age (M = 15.4, SD = 1.63) and had undergone CBT-HA ∼1-2 years prior to participating in the study. Overall, patients and their parents reported that CBT-HA was helpful in reducing headache frequency and related disability. Although patients provided mixed reports on the effectiveness of different CBT-HA skills, the majority of patients indicated that the mind and body relaxation skills of CBT-HA (deep breathing, progressive muscle relaxation, and activity pacing in particular) were the most helpful and most frequently used skills. Patients and parents also generally reported that treatment was easy to learn, and noted at least some aspect of treatment was enjoyable. Results from these qualitative interviews indicate that mind and body CBT-HA relaxation skills emerged as popular and effective based on patient and parent report. Future research examining the effectiveness of streamlined pediatric migraine nonpharmacological interventions should include these patient-preferred skills. © 2018 American Headache Society.

Standards for reporting qualitative research: a synthesis of recommendations.

PubMed

O'Brien, Bridget C; Harris, Ilene B; Beckman, Thomas J; Reed, Darcy A; Cook, David A

2014-09-01

Standards for reporting exist for many types of quantitative research, but currently none exist for the broad spectrum of qualitative research. The purpose of the present study was to formulate and define standards for reporting qualitative research while preserving the requisite flexibility to accommodate various paradigms, approaches, and methods. The authors identified guidelines, reporting standards, and critical appraisal criteria for qualitative research by searching PubMed, Web of Science, and Google through July 2013; reviewing the reference lists of retrieved sources; and contacting experts. Specifically, two authors reviewed a sample of sources to generate an initial set of items that were potentially important in reporting qualitative research. Through an iterative process of reviewing sources, modifying the set of items, and coding all sources for items, the authors prepared a near-final list of items and descriptions and sent this list to five external reviewers for feedback. The final items and descriptions included in the reporting standards reflect this feedback. The Standards for Reporting Qualitative Research (SRQR) consists of 21 items. The authors define and explain key elements of each item and provide examples from recently published articles to illustrate ways in which the standards can be met. The SRQR aims to improve the transparency of all aspects of qualitative research by providing clear standards for reporting qualitative research. These standards will assist authors during manuscript preparation, editors and reviewers in evaluating a manuscript for potential publication, and readers when critically appraising, applying, and synthesizing study findings.

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.

Developing a patient-led electronic feedback system for quality and safety within Renal PatientView.

PubMed

Giles, Sally J; Reynolds, Caroline; Heyhoe, Jane; Armitage, Gerry

2017-03-01

It is increasingly acknowledged that patients can provide direct feedback about the quality and safety of their care through patient reporting systems. The aim of this study was to explore the feasibility of patients, healthcare professionals and researchers working in partnership to develop a patient-led quality and safety feedback system within an existing electronic health record (EHR), known as Renal PatientView (RPV). Phase 1 (inception) involved focus groups (n = 9) and phase 2 (requirements) involved cognitive walkthroughs (n = 34) and 1:1 qualitative interviews (n = 34) with patients and healthcare professionals. A Joint Services Expert Panel (JSP) was convened to review the findings from phase 1 and agree the core principles and components of the system prototype. Phase 1 data were analysed using a thematic approach. Data from phase 1 were used to inform the design of the initial system prototype. Phase 2 data were analysed using the components of heuristic evaluation, resulting in a list of core principles and components for the final system prototype. Phase 1 identified four main barriers and facilitators to patients feeding back on quality and safety concerns. In phase 2, the JSP agreed that the system should be based on seven core principles and components. Stakeholders were able to work together to identify core principles and components for an electronic patient quality and safety feedback system in renal services. Tensions arose due to competing priorities, particularly around anonymity and feedback. Careful consideration should be given to the feasibility of integrating a novel element with differing priorities into an established system with existing functions and objectives. © 2016 European Dialysis and Transplant Nurses Association/European Renal Care Association.

Qualitative approach to patient-reported outcomes in oncology: protocol of a French study

PubMed Central

Orri, Massimiliano; Sibeoni, Jordan; Labey, Mathilde; Bousquet, Guilhem; Verneuil, Laurence; Revah-Levy, Anne

2015-01-01

Introduction The past decade has been characterised by movement from a doctor-centred to a patient-centred approach to treatment outcomes, in which doctors try to see the illness through their patients’ eyes. Patients, family members and doctors are the three participants in cancer care, but their perspectives about what have been helpful during cancer treatment have never simultaneously and explicitly compared in the same qualitative study. The aim of this study project is to explore patients’ perspectives about the care they receive, as well as families’ and doctors’ perspectives about what have been helpful for the patient. These three points of view will be compared and contrasted in order to analyse the convergences and divergences in these perspectives. Methods and analysis This is a national multicentre qualitative study. Participants will be constituted by three different subsamples: (1) patients with cancer (skin, breast, urological and lung cancers), (2) their relatives, and (3) their referring physicians. Recruitment will follow the purposive sample technique, and the final sample size will be determined by data saturation. Data will be collected through open-ended semistructured interviews and independently analysed with NVivo V.10 software by three researchers according to the principles of Interpretative Phenomenological Analysis. Ethics and dissemination The research protocol received approval from the University Paris Descartes review board (IRB number: 20140600001072), and participants will provide written consent. To the best of our knowledge, this is the first study to focus on the simultaneous exploration of the separate points of view of patients, families and doctors about the care received during the cancer care journey. We expect that our findings will help to improve communication and relationships between doctors, patients and families. Comparison of these three points of view will provide information about the convergences and

Qualitative approach to patient-reported outcomes in oncology: protocol of a French study.

PubMed

Orri, Massimiliano; Sibeoni, Jordan; Labey, Mathilde; Bousquet, Guilhem; Verneuil, Laurence; Revah-Levy, Anne

2015-07-10

The past decade has been characterised by movement from a doctor-centred to a patient-centred approach to treatment outcomes, in which doctors try to see the illness through their patients' eyes. Patients, family members and doctors are the three participants in cancer care, but their perspectives about what have been helpful during cancer treatment have never simultaneously and explicitly compared in the same qualitative study. The aim of this study project is to explore patients' perspectives about the care they receive, as well as families' and doctors' perspectives about what have been helpful for the patient. These three points of view will be compared and contrasted in order to analyse the convergences and divergences in these perspectives. This is a national multicentre qualitative study. Participants will be constituted by three different subsamples: (1) patients with cancer (skin, breast, urological and lung cancers), (2) their relatives, and (3) their referring physicians. Recruitment will follow the purposive sample technique, and the final sample size will be determined by data saturation. Data will be collected through open-ended semistructured interviews and independently analysed with NVivo V.10 software by three researchers according to the principles of Interpretative Phenomenological Analysis. The research protocol received approval from the University Paris Descartes review board (IRB number: 20140600001072), and participants will provide written consent. To the best of our knowledge, this is the first study to focus on the simultaneous exploration of the separate points of view of patients, families and doctors about the care received during the cancer care journey. We expect that our findings will help to improve communication and relationships between doctors, patients and families. Comparison of these three points of view will provide information about the convergences and divergences of these perspectives and how to address the needs of all

Feasibility of using a handheld electronic device for the collection of patient reported outcomes data from children.

PubMed

Vinney, Lisa A; Grade, John D; Connor, Nadine P

2012-01-01

The manner in which a communication disorder affects health-related quality of life (QOL) in children is not known. Unfortunately, collection of quality of life data via traditional paper measures is labor intensive and has several other limitations, which hinder the investigation of pediatric quality of life in children. Currently, there is not sufficient research regarding the use of electronic devices to collect pediatric patient reported outcomes in order to address such limitations. Thus, we used a cross-over design to compare responses to a pediatric health quality of life instrument (PedsQL 4.0) delivered using a handheld electronic device to those from a traditional paper form. Respondents were children with (n=9) and without (n=10) a speech or voice disorder. For paper versus the electronic format, we examined time to completion, number of incomplete or inaccurate question responses, intra-rater reliability, ease of use, and child and parent preference. There were no significant differences between children's scores, time to complete the measure, or ratings related to ease of answering questions. The percentage of children who made answering errors or omissions with paper and pencil was significantly greater than the percentage of children who made such errors using the device. This preliminary study demonstrated that use of an electronic device to collect QOL or patient-reported outcomes (PRO) data from children is more efficient than and just as feasible, reliable, and acceptable as using paper forms. The development of hardware and software applications for the collection of QOL and/or PRO data in children with speech disorders is likely warranted. The reader will be able to understand: (1) The potential benefits of using electronic data capture via handheld devices for collecting pediatric patient reported outcomes; (2) The Pediatric Quality of Life Inventory 4.0 is a measure of the perception of general health quality that has distinguished between

Feasibility and accessibility of electronic patient-reported outcome measures using a smartphone during routine chemotherapy: a pilot study.

PubMed

Bae, Woo Kyun; Kwon, Jihyun; Lee, Hyun Woo; Lee, Sang-Cheol; Song, Eun-Kee; Shim, Hyeok; Ryu, Keun Ho; Song, Jemin; Seo, Sungbo; Yang, Yaewon; Park, Jong-Hyock; Lee, Ki Hyeong; Han, Hye Sook

2018-05-07

There is growing interest in integrating electronic patient-reported outcome (PRO) measures into routine oncology practice for symptom monitoring. Here, we evaluated the feasibility and accessibility of electronic PRO measures using a smartphone (PRO-SMART) for cancer patients receiving routine chemotherapy. The proposed PRO-SMART application obtains daily personal health record (PHR) data from cancer patients via a smartphone. An analysis report of cumulative PHR data is provided to the clinician in a format suitable for upload to electronic medical records (EMRs). Cancer outpatients who had received at least two cycles of chemotherapy and who were scheduled for two more cycles were enrolled. Between February 2015 and December 2016, 111 patients were screened and 101 of these were included. One-hundred patients used PRO-SMART at least once and were included in the final analysis (90.1% overall accessibility among all screened patients). The number of symptomatic adverse events (AEs) related to chemotherapy recorded in EMRs (mean ± standard deviation [SD]) increased from 0.92 ± 0.80 to 2.26 ± 1.80 (P < 0.001), and grading of AEs increased from 0.81 ± 0.69 to 1.00 ± 0.62 (P = 0.029). After using PRO-SMART, the numeric rating scale for pain (mean ± SD) increased from 0.20 ± 0.72 to 0.99 ± 1.55 (P < 0.001). A patient-reported questionnaire revealed that 64.2% of patients found it useful and 83% found it easy to use. This study suggests that the proposed PRO-SMART is feasible and accessible for assessment of symptomatic AEs in cancer patients receiving chemotherapy for a prospective randomized trial.

Patients' involvement in improvement initiatives: a qualitative systematic review.

PubMed

van, Claire; McInerney, Patricia; Cooke, Richard

2015-10-01

Over the last 20 years, quality improvement in health has become an important strategy in health services in many countries. With the emphasis on quality health care, there has been a shift in social paradigms towards including service users in their own health on different levels. There is growing evidence in literature on the positive impact on health outcomes where patients are active participants in their personal care. There is however less information available on the broader influence of users on improvement in systems. The objective of this review was to identify the barriers and enablers to patients being involved in quality improvement efforts directed towards their own health care. This review considered studies that included adults and children of any age experiencing any health problem.The review considered studies that explored patient or user participation in quality improvement and the factors enabling and hindering this processThe qualitative component of this review considered studies that focused on qualitative data, including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research. Other texts such as opinion papers and reports were also considered. The search strategy aimed to find both published and unpublished studies. A three-step search strategy was utilized in this review. The searches using all identified keywords and index terms included the databases PubMed, PsycINFO, Medline, Scopus, EBSCOhost and CINAHL.Qualitative, text and opinion papers were considered for inclusion in this review.Closely related concepts like community involvement, family involvement, patients' involvement in their own care (for example, in the case of shared decision making), and patient centeredness in the context of a consultation were excluded. Qualitative and textual papers selected for retrieval were assessed by two independent reviewers for authenticity prior to inclusion in the review using

Spiritual Concerns in Hindu Cancer Patients Undergoing Palliative Care: A Qualitative Study

PubMed Central

Simha, Srinagesh; Noble, Simon; Chaturvedi, Santosh K

2013-01-01

Aims: Spiritual concerns are being identified as important components of palliative care. The aim of this study was to explore the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India. Materials and Methods: The methodology used was a qualitative method: Interpretive phenomenological analysis. A semi-structured interview guide was used to collect data, based on Indian and western literature reports. Certain aspects like karma and pooja, relevant to Hindus, were included. Theme saturation was achieved on interviewing 10 participants. Results: The seven most common spiritual concerns reported were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one's situation, belief in karma, and the question Why me? No participant expressed four of the concerns studied: Loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle. Conclusions: This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. The study indicates the need for adequate attention to spiritual aspects during palliative care. PMID:24049350

Early recovery following lower limb arthroplasty: Qualitative interviews with patients undergoing elective hip and knee replacement surgery. Initial phase in the development of a patient-reported outcome measure.

PubMed

Strickland, Louise H; Kelly, Laura; Hamilton, Thomas W; Murray, David W; Pandit, Hemant G; Jenkinson, Crispin

2017-09-27

To explore the patients' perspective of surgery and early recovery when undergoing lower limb (hip or knee) arthroplasty. Lower limb arthroplasty is a commonly performed procedure for symptomatic arthritis, which has not responded to conservative medical treatment. Each patient's perspective of the surgical process and early recovery period impacts on their quality of life. Open, semistructured qualitative interviews were used to allow for a deeper understanding of the patient perspective when undergoing a hip or knee arthroplasty. Following ethical approval, 30 patients were interviewed between August and November 2016 during the perioperative period while undergoing an elective hip or knee arthroplasty (n = 30). The interviews were performed between the day of surgery and a nine-week postoperative clinic appointment. Data were analysed using an in-depth narrative thematic analysis method. NVivo qualitative data analysis software was used. Seven main themes evolved from the interviews: "improving function and mobility", "pain", "experiences of health care", "support from others", "involvement and understanding of care decisions", "behaviour and coping" and "fatigue and sleeping". The early postoperative recovery period is of vital importance to all surgical patients. This is no different for the orthopaedic patient. However, identifying key self-reported areas of importance from patients can guide clinical focus for healthcare professionals. To have specific patient-reported information regarding key areas of importance during the perioperative phase is invaluable when caring for the orthopaedic surgical patient. It gives insight and understanding in to this increasing population group. This study has also served as a starting point in the development of a questionnaire which could be used to assess interventions in the lower limb arthroplasty population. These results will influence both items and content of the questionnaire. © 2017 John Wiley & Sons Ltd.

"It's like texting at the dinner table": A qualitative analysis of the impact of electronic health records on patient-physician interaction in hospitals.

PubMed

Pelland, Kimberly D; Baier, Rosa R; Gardner, Rebekah L

2017-06-30

nBACKGROUND: Electronic health records (EHRs) may reduce medical errors and improve care, but can complicate clinical encounters. To describe hospital-based physicians' perceptions of the impact of EHRs on patient-physician interactions and contrast these findings against office-based physicians' perceptionsMethods: We performed a qualitative analysis of comments submitted in response to the 2014 Rhode Island Health Information Technology Survey. Office- and hospital-based physicians licensed in Rhode Island, in active practice, and located in Rhode Island or neighboring states completed the survey about their Electronic Health Record use. The survey's response rate was 68.3% and 2,236 (87.1%) respondents had EHRs. Among survey respondents, 27.3% of hospital-based and 37.8% of office-based physicians with EHRs responded to the question about patient interaction. Five main themes emerged for hospital-based physicians, with respondents generally perceiving EHRs as negatively altering patient interactions. We noted the same five themes among office-based physicians, but the rank-order of the top two responses differed by setting: hospital-based physicians commented most frequently that they spend less time with patients because they have to spend more time on computers; office-based physicians commented most frequently on EHRs worsening the quality of their interactions and relationships with patients. In our analysis of a large sample of physicians, hospital-based physicians generally perceived EHRs as negatively altering patient interactions, although they emphasized different reasons than their office-based counterparts. These findings add to the prior literature, which focuses on outpatient physicians, and can shape interventions to improve how EHRs are used in inpatient settings.

Teen use of a patient portal: a qualitative study of parent and teen attitudes.

PubMed

Bergman, David A; Brown, Nancy L; Wilson, Sandra

2008-01-01

We conducted a qualitative study of the attitudes of teens and parents toward the use of a patient portal. We conducted two teen and two parent focus groups, one teen electronic bulletin board, and one parent electronic bulletin board. Videotapes and transcripts from the groups were independently analyzed by two reviewers for significant themes, which were then validated by two other members of the research team. Twenty-eight teens and 23 parents participated in the groups. Significant themes included issues about teens' control of their own healthcare; enthusiasm about the use of a patient portal to access their providers, seek health information, and make appointments; and concerns about confidentiality. In summary, there was considerable support among teens and parents for a patient portal as well as concerns about confidentiality. The teen portal affords an opportunity to negotiate issues of confidentiality.

Synthesising quantitative and qualitative research in evidence-based patient information.

PubMed

Goldsmith, Megan R; Bankhead, Clare R; Austoker, Joan

2007-03-01

Systematic reviews have, in the past, focused on quantitative studies and clinical effectiveness, while excluding qualitative evidence. Qualitative research can inform evidence-based practice independently of other research methodologies but methods for the synthesis of such data are currently evolving. Synthesising quantitative and qualitative research in a single review is an important methodological challenge. This paper describes the review methods developed and the difficulties encountered during the process of updating a systematic review of evidence to inform guidelines for the content of patient information related to cervical screening. Systematic searches of 12 electronic databases (January 1996 to July 2004) were conducted. Studies that evaluated the content of information provided to women about cervical screening or that addressed women's information needs were assessed for inclusion. A data extraction form and quality assessment criteria were developed from published resources. A non-quantitative synthesis was conducted and a tabular evidence profile for each important outcome (eg "explain what the test involves") was prepared. The overall quality of evidence for each outcome was then assessed using an approach published by the GRADE working group, which was adapted to suit the review questions and modified to include qualitative research evidence. Quantitative and qualitative studies were considered separately for every outcome. 32 papers were included in the systematic review following data extraction and assessment of methodological quality. The review questions were best answered by evidence from a range of data sources. The inclusion of qualitative research, which was often highly relevant and specific to many components of the screening information materials, enabled the production of a set of recommendations that will directly affect policy within the NHS Cervical Screening Programme. A practical example is provided of how quantitative and

Synthesising quantitative and qualitative research in evidence‐based patient information

PubMed Central

Goldsmith, Megan R; Bankhead, Clare R; Austoker, Joan

2007-01-01

Background Systematic reviews have, in the past, focused on quantitative studies and clinical effectiveness, while excluding qualitative evidence. Qualitative research can inform evidence‐based practice independently of other research methodologies but methods for the synthesis of such data are currently evolving. Synthesising quantitative and qualitative research in a single review is an important methodological challenge. Aims This paper describes the review methods developed and the difficulties encountered during the process of updating a systematic review of evidence to inform guidelines for the content of patient information related to cervical screening. Methods Systematic searches of 12 electronic databases (January 1996 to July 2004) were conducted. Studies that evaluated the content of information provided to women about cervical screening or that addressed women's information needs were assessed for inclusion. A data extraction form and quality assessment criteria were developed from published resources. A non‐quantitative synthesis was conducted and a tabular evidence profile for each important outcome (eg “explain what the test involves”) was prepared. The overall quality of evidence for each outcome was then assessed using an approach published by the GRADE working group, which was adapted to suit the review questions and modified to include qualitative research evidence. Quantitative and qualitative studies were considered separately for every outcome. Results 32 papers were included in the systematic review following data extraction and assessment of methodological quality. The review questions were best answered by evidence from a range of data sources. The inclusion of qualitative research, which was often highly relevant and specific to many components of the screening information materials, enabled the production of a set of recommendations that will directly affect policy within the NHS Cervical Screening Programme. Conclusions A

Experiences from ten years of incident reporting in health care: a qualitative study among department managers and coordinators.

PubMed

Carlfjord, Siw; Öhrn, Annica; Gunnarsson, Anna

2018-02-14

Incident reporting (IR) in health care has been advocated as a means to improve patient safety. The purpose of IR is to identify safety hazards and develop interventions to mitigate these hazards in order to reduce harm in health care. Using qualitative methods is a way to reveal how IR is used and perceived in health care practice. The aim of the present study was to explore the experiences of IR from two different perspectives, including heads of departments and IR coordinators, to better understand how they value the practice and their thoughts regarding future application. Data collection was performed in Östergötland County, Sweden, where an electronic IR system was implemented in 2004, and the authorities explicitly have advocated IR from that date. A purposive sample of nine heads of departments from three hospitals were interviewed, and two focus group discussions with IR coordinators took place. Data were analysed using qualitative content analysis. Two main themes emerged from the data: "Incident reporting has come to stay" building on the categories entitled perceived advantages, observed changes and value of the IR system, and "Remaining challenges in incident reporting" including the categories entitled need for action, encouraged learning, continuous culture improvement, IR system development and proper use of IR. After 10 years, the practice of IR is widely accepted in the selected setting. IR has helped to put patient safety on the agenda, and a cultural change towards no blame has been observed. The informants suggest an increased focus on action, and further development of the tools for reporting and handling incidents.

Clinician’s use of automated reports of estimated glomerular filtration rate: A qualitative study

PubMed Central

2012-01-01

Background There is a growing awareness in primary care of the importance of identifying patients with chronic kidney disease (CKD) so that they can receive appropriate clinical care; one method that has been widely embraced is the use of automated reporting of estimated glomerular filtration rate (eGFR) by clinical laboratories. We undertook a qualitative study to examine how clinicians use eGFR in clinical decision making, patient communication issues, barriers to use of eGFR, and suggestions to improve the clinical usefulness of eGFR reports. Methods Our study used qualitative methods with structured interviews among primary care clinicians including both physicians and allied health providers, recruited from Kaiser Permanente Northwest, a non-profit health maintenance organization. Results We found that clinicians generally held favorable views toward eGFR reporting but did not use eGFR to replace serum creatinine in their clinical decision-making. Clinicians used eGFR as a tool to help identify CKD, educate patients about their kidney function and make treatment decisions. Barriers noted by several clinicians included a desire for greater education regarding care for patients with CKD and tools to facilitate discussion of eGFR findings with patients. Conclusions The manner in which clinicians use eGFRs appears to be more complex than previously understood, and our study illustrates some of the efforts that might be usefully undertaken (e.g. specific clinician education) when encouraging further promulgation of eGFR reporting and usage. PMID:23173944

Heterophile antibody interference in qualitative urine/serum hCG devices: Case report.

PubMed

Patel, Khushbu K; Gronowski, Ann M

2016-06-01

This case report investigates the origin of a false positive result on a serum qualitative human chorionic gonadotropin (hCG) device. A 46-year-old woman diagnosed with chronic myeloid leukemia presented with nausea and vomiting. A qualitative serum hCG test was interpreted as positive; however, a quantitative serum hCG test was negative (<5IU/L). To further investigate this discrepancy, the sample was pretreated with heterophilic blocking reagent (HBR). Additionally, the sample was tested on other qualitative hCG devices composed of antibodies from different animal sources. Blocking reagent from an automated quantitative immunoassay was also tested for its ability to inhibit the heterophile antibody interference. The qualitative test result was negative after pretreatment with heterophilic blocking reagent. Other devices composed of antibodies from different animal sources also demonstrated mixed results with the patient's sample. Blocking reagent obtained from the automated quantitative assay inhibited the heterophile antibody interference in the patient's sample. This case demonstrates that positive serum point-of-care hCG results should be interpreted with caution and confirmed with a quantitative serum hCG immunoassay when clinical suspicion is raised. Copyright © 2016 The Canadian Society of Clinical Chemists. Published by Elsevier Inc. All rights reserved.

Patient and Healthcare Provider Barriers to Hypertension Awareness, Treatment and Follow Up: A Systematic Review and Meta-Analysis of Qualitative and Quantitative Studies

PubMed Central

Khatib, Rasha; Schwalm, Jon-David; Yusuf, Salim; Haynes, R. Brian; McKee, Martin; Khan, Maheer; Nieuwlaat, Robby

2014-01-01

Background Although the importance of detecting, treating, and controlling hypertension has been recognized for decades, the majority of patients with hypertension remain uncontrolled. The path from evidence to practice contains many potential barriers, but their role has not been reviewed systematically. This review aimed to synthesize and identify important barriers to hypertension control as reported by patients and healthcare providers. Methods Electronic databases MEDLINE, EMBASE and Global Health were searched systematically up to February 2013. Two reviewers independently selected eligible studies. Two reviewers categorized barriers based on a theoretical framework of behavior change. The theoretical framework suggests that a change in behavior requires a strong commitment to change [intention], the necessary skills and abilities to adopt the behavior [capability], and an absence of health system and support constraints. Findings Twenty-five qualitative studies and 44 quantitative studies met the inclusion criteria. In qualitative studies, health system barriers were most commonly discussed in studies of patients and health care providers. Quantitative studies identified disagreement with clinical recommendations as the most common barrier among health care providers. Quantitative studies of patients yielded different results: lack of knowledge was the most common barrier to hypertension awareness. Stress, anxiety and depression were most commonly reported as barriers that hindered or delayed adoption of a healthier lifestyle. In terms of hypertension treatment adherence, patients mostly reported forgetting to take their medication. Finally, priority setting barriers were most commonly reported by patients in terms of following up with their health care providers. Conclusions This review identified a wide range of barriers facing patients and health care providers pursuing hypertension control, indicating the need for targeted multi-faceted interventions

Using qualitative methods to understand factors contributing to patient satisfaction among dermatology patients: a systematic review.

PubMed

Gibbons, Caitlin; Singh, Sanminder; Gibbons, Brittany; Clark, Caitlin; Torres, Josefina; Cheng, Michelle Y; Wang, Elizabeth A; Armstrong, April W

2018-05-01

In this systematic review, we aimed to synthesize data that identify factors contributing to patient satisfaction in dermatology care using qualitative methods. We performed a comprehensive search of the literature using the PubMed database for articles published between January 1, 2000 and February 9, 2015. The initial search yielded 186 articles, of which 13 were included after applying inclusion and exclusion criteria. The systematic review of 13 articles included a total of 330 patients. Using in-field observations and semistructured interviews, studies found that qualitative methods and analysis increased the provider's sensitivity to patient needs and enhanced patient care. Analyses using qualitative methods found increased patient satisfaction in their healthcare provider is associated with (1) confidence in the provider's diagnosis, (2) perception of patient-centered, individualized recommendations and (3) quality of patient education and provider explanation during a visit. Patient satisfaction is measured using either quantitative or qualitative methods. Quantitative methods result in standardized data that often does not capture the nuances of patient experience. In contrast, qualitative methodology is integral to gathering patient perspectives on patient care and satisfaction and should be included in future research models.

Text mining applied to electronic cardiovascular procedure reports to identify patients with trileaflet aortic stenosis and coronary artery disease.

PubMed

Small, Aeron M; Kiss, Daniel H; Zlatsin, Yevgeny; Birtwell, David L; Williams, Heather; Guerraty, Marie A; Han, Yuchi; Anwaruddin, Saif; Holmes, John H; Chirinos, Julio A; Wilensky, Robert L; Giri, Jay; Rader, Daniel J

2017-08-01

Interrogation of the electronic health record (EHR) using billing codes as a surrogate for diagnoses of interest has been widely used for clinical research. However, the accuracy of this methodology is variable, as it reflects billing codes rather than severity of disease, and depends on the disease and the accuracy of the coding practitioner. Systematic application of text mining to the EHR has had variable success for the detection of cardiovascular phenotypes. We hypothesize that the application of text mining algorithms to cardiovascular procedure reports may be a superior method to identify patients with cardiovascular conditions of interest. We adapted the Oracle product Endeca, which utilizes text mining to identify terms of interest from a NoSQL-like database, for purposes of searching cardiovascular procedure reports and termed the tool "PennSeek". We imported 282,569 echocardiography reports representing 81,164 individuals and 27,205 cardiac catheterization reports representing 14,567 individuals from non-searchable databases into PennSeek. We then applied clinical criteria to these reports in PennSeek to identify patients with trileaflet aortic stenosis (TAS) and coronary artery disease (CAD). Accuracy of patient identification by text mining through PennSeek was compared with ICD-9 billing codes. Text mining identified 7115 patients with TAS and 9247 patients with CAD. ICD-9 codes identified 8272 patients with TAS and 6913 patients with CAD. 4346 patients with AS and 6024 patients with CAD were identified by both approaches. A randomly selected sample of 200-250 patients uniquely identified by text mining was compared with 200-250 patients uniquely identified by billing codes for both diseases. We demonstrate that text mining was superior, with a positive predictive value (PPV) of 0.95 compared to 0.53 by ICD-9 for TAS, and a PPV of 0.97 compared to 0.86 for CAD. These results highlight the superiority of text mining algorithms applied to electronic

Experiences of patients who were early adopters of electronic communication with their physician: satisfaction, benefits, and concerns.

PubMed

Houston, Thomas K; Sands, Daniel Z; Jenckes, Mollie W; Ford, Daniel E

2004-09-01

To explore the experiences of patients who were early adopters of e-mail communication with their physicians. Patients' experiences were assessed with an Internetbased survey of 1881 individuals and in-depth telephone follow-up interviews with 56 individuals who used e-mail to communicate with providers. Two investigators qualitatively coded interview comments independently, with differences adjudicated by group consensus. A total of 311 (16.5%) of the 1881 individuals reported using electronic mail to communicate with their physicians. Compared with the population-based Behavioral Risk Factor Surveillance Survey, users of e-mail with physicians were twice as likely to have a college education, were younger, were less frequently ethnic minorities, and more frequently reported fair/poor health. Among the 311 patients who used e-mail with their physicians, the most frequent topics were results of laboratory testing and prescription renewals. However, many of the 311 users (21%) also reported using asynchronous e-mail inappropriately to convey urgent or sensitive issues (suicidality, chest pain, etc). Almost all (95%) perceived that e-mail was more efficient than the telephone. Important benefits uncovered from the interviews were that some patients felt more emboldened to ask questions in e-mail compared with face-to-face communication with doctors, and liked the ability to save the e-mail messages. Users also expressed concerns about privacy. Patients that use electronic communication with their physicians find the communication efficient for disease management. Further patient education about inappropriate use of e-mail for urgent issues is needed.

Feasibility of Using Qualitative Interviews to Explore Patients' Treatment Goals: Experience from Dermatology.

PubMed

Blome, Christine; von Usslar, Kathrin; Augustin, Matthias

2016-06-01

Qualitative interviews are used to assess understandability and content validity of patient-reported outcomes. However, the common approach of asking patients to paraphrase items may not be sufficient to completely reveal item content as understood by patients. We used qualitative interviews to elicit more detailed information about patients' understanding of treatment goal items for the Patient Benefit Index 2.0 (PBI 2.0). This questionnaire measures patient-relevant benefit from treatments for skin diseases by assessing goal importance prior to and goal attainment after treatment. We interviewed 16 patients with psoriasis, atopic dermatitis, leg ulcers, and vitiligo. Patients were asked to elaborate in detail on their understanding of 15 treatment goal items. Subsequently, they were asked to suggest changes in item wording and to name missing treatment goals. Interview transcripts were analyzed according to an adapted approach of content analysis. The task was easy for the patients to understand, and they shared detailed information on what each goal meant to them. Results of the content analysis induced a range of revisions of the PBI 2.0 items, including changes in wording (four items) and item order (two items). Four items were deleted because they were found to be redundant or irrelevant, and one item was added to the list of treatment goals. Asking patients to elaborate on their item understanding in qualitative interviews provided detailed insight into item content and understandability. This method has helped considerably to improve feasibility and content validity of the PBI 2.0.

Ethical guidelines for use of electronic mail between patients and physicians.

PubMed

Bovi, Amy M

2003-01-01

This report examines the ethical implications of electronic communication, focusing on the use of electronic mail (e-mail), considers its impact on a previously established patient-physician relationship, and the limitations in using e-mail to create a new patient-physician relationship. In its recommendations, this report offers guidance to physicians who use electronic mail to communicate with patients and online users. These guidelines maintain that e-mail should not be used to establish a patient-physician relationship, but rather to supplement personal encounters. When using e-mail, physicians hold the same ethical responsibilities to their patients as they do during other encounters and that information must be presented in a manner that meets professional standards. The report requires that physicians notify patients of e-mail's inherent limitations and that patients be given the opportunity to accept these limitations prior to the communication of privileged information. Finally, physicians should be aware of privacy and confidentiality concerns when using e-mail to communicate with patients.

Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ

PubMed Central

2012-01-01

Background The syntheses of multiple qualitative studies can pull together data across different contexts, generate new theoretical or conceptual models, identify research gaps, and provide evidence for the development, implementation and evaluation of health interventions. This study aims to develop a framework for reporting the synthesis of qualitative health research. Methods We conducted a comprehensive search for guidance and reviews relevant to the synthesis of qualitative research, methodology papers, and published syntheses of qualitative health research in MEDLINE, Embase, CINAHL and relevant organisational websites to May 2011. Initial items were generated inductively from guides to synthesizing qualitative health research. The preliminary checklist was piloted against forty published syntheses of qualitative research, purposively selected to capture a range of year of publication, methods and methodologies, and health topics. We removed items that were duplicated, impractical to assess, and rephrased items for clarity. Results The Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement consists of 21 items grouped into five main domains: introduction, methods and methodology, literature search and selection, appraisal, and synthesis of findings. Conclusions The ENTREQ statement can help researchers to report the stages most commonly associated with the synthesis of qualitative health research: searching and selecting qualitative research, quality appraisal, and methods for synthesising qualitative findings. The synthesis of qualitative research is an expanding and evolving methodological area and we would value feedback from all stakeholders for the continued development and extension of the ENTREQ statement. PMID:23185978

Journal article reporting standards for qualitative primary, qualitative meta-analytic, and mixed methods research in psychology: The APA Publications and Communications Board task force report.

PubMed

Levitt, Heidi M; Bamberg, Michael; Creswell, John W; Frost, David M; Josselson, Ruthellen; Suárez-Orozco, Carola

2018-01-01

The American Psychological Association Publications and Communications Board Working Group on Journal Article Reporting Standards for Qualitative Research (JARS-Qual Working Group) was charged with examining the state of journal article reporting standards as they applied to qualitative research and with generating recommendations for standards that would be appropriate for a wide range of methods within the discipline of psychology. These standards describe what should be included in a research report to enable and facilitate the review process. This publication marks a historical moment-the first inclusion of qualitative research in APA Style, which is the basis of both the Publication Manual of the American Psychological Association (APA, 2010) and APA Style CENTRAL, an online program to support APA Style. In addition to the general JARS-Qual guidelines, the Working Group has developed standards for both qualitative meta-analysis and mixed methods research. The reporting standards were developed for psychological qualitative research but may hold utility for a broad range of social sciences. They honor a range of qualitative traditions, methods, and reporting styles. The Working Group was composed of a group of researchers with backgrounds in varying methods, research topics, and approaches to inquiry. In this article, they present these standards and their rationale, and they detail the ways that the standards differ from the quantitative research reporting standards. They describe how the standards can be used by authors in the process of writing qualitative research for submission as well as by reviewers and editors in the process of reviewing research. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Experiences With a Self-Reported Mobile Phone-Based System Among Patients With Colorectal Cancer: A Qualitative Study.

PubMed

Drott, Jenny; Vilhelmsson, Maria; Kjellgren, Karin; Berterö, Carina

2016-06-09

In cancer care, mobile phone-based systems are becoming more widely used in the assessment, monitoring, and management of side effects. To explore the experiences of patients with colorectal cancer on using a mobile phone-based system for reporting neurotoxic side effects. Eleven patients were interviewed (ages 44-68 years). A semistructured interview guide was used to perform telephone interviews. The interviews were transcribed verbatim and analyzed with qualitative content analysis. The patients' experiences of using a mobile phone-based system were identified and constructed as: "being involved," "pacing oneself," and "managing the questions." "Being involved" refers to their individual feelings. Patients were participating in their own care by being observant of the side effects they were experiencing. They were aware that the answers they gave were monitored in real time and taken into account by health care professionals when planning further treatment. "Pacing oneself" describes how the patients can have an impact on the time and place they choose to answer the questions. Answering the questionnaire was easy, and despite the substantial number of questions, it was quickly completed. "Managing the questions" pointed out that the patients needed to be observant because of the construction of the questions. They could not routinely answer all the questions. Patients understood that side effects can vary during the cycles of treatment and need to be assessed repeatedly during treatment. This mobile phone-based system reinforced the patients' feeling of involvement in their own care. The patients were comfortable with the technology and appreciated that the system was not time consuming.

A prospective study of the feasibility and acceptability of a Web-based, electronic patient-reported outcome system in assessing patient recovery after major gynecologic cancer surgery.

PubMed

Andikyan, Vaagn; Rezk, Youssef; Einstein, M Heather; Gualtiere, Gina; Leitao, Mario M; Sonoda, Yukio; Abu-Rustum, Nadeem R; Barakat, Richard R; Basch, Ethan M; Chi, Dennis S

2012-11-01

The purposes of this study are to evaluate the feasibility of capturing patient-reported outcomes (PROs) electronically and to identify the most common distressing symptoms in women recovering from major gynecologic cancer surgery. This was a prospective, single-arm pilot study. Eligible participants included those scheduled for a laparotomy for presumed or known gynecologic malignancy. Patients completed a Web-based "STAR" (Symptom Tracking and Reporting for Patients) questionnaire once preoperatively and weekly during the 6-week postoperative period. The questionnaire consisted of the patient adaptation of the NCI CTCAE 3.0 and EORTC QLQ-C30 3.0. When a patient submitted a response that was concerning, an automated email alert was sent to the clinician. The patient's assessment of STAR's usefulness was measured via an exit survey. Forty-nine patients completed the study. The procedures included the following: hysterectomy±staging (67%), resection of tumor (22%), salpingo-oophorectomy (6%), and other (4%). Most patients (82%) completed at least 4 sessions in STAR. The CTC generated 43 alerts. These alerts resulted in 25 telephone contacts with patients, 2 ER referrals, one new appointment, and one pharmaceutical prescription. The 3 most common patient-reported symptoms generating an alert were as follows: poor performance status (19%), nausea (18%), and fatigue (17%). Most patients found STAR useful (80%) and would recommend it to others (85%). Application of a Web-based, electronic STAR system is feasible in the postoperative period, highly accepted by patients, and warrants further study. Poor performance status, nausea, and fatigue were the most common distressing patient-reported symptoms. Copyright © 2012 Elsevier Inc. All rights reserved.

Experiences of patient-centredness with specialized community-based care: a systematic review and qualitative meta-synthesis.

PubMed

Winsor, S; Smith, A; Vanstone, M; Giacomini, M; Brundisini, F K; DeJean, D

2013-01-01

Specialized community-based care (SCBC) endeavours to help patients manage chronic diseases by formalizing the link between primary care providers and other community providers with specialized training. Many types of health care providers and community-based programs are employed in SCBC. Patient-centred care focuses on patients' psychosocial experience of health and illness to ensure that patients' care plans are modelled on their individual values, preferences, spirituality, and expressed needs. To synthesize qualitative research on patient and provider experiences of SCBC interventions and health care delivery models, using the core principles of patient-centredness. This report synthesizes 29 primary qualitative studies on the topic of SCBC interventions for patients with chronic conditions. Included studies were published between 2002 and 2012, and followed adult patients in North America, Europe, Australia, and New Zealand. Qualitative meta-synthesis was used to integrate findings across primary research studies. Three core themes emerged from the analysis: patients' health beliefs affect their participation in SCBC interventions;patients' experiences with community-based care differ from their experiences with hospital-based care;patients and providers value the role of nurses differently in community-based chronic disease care. Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across several qualitative studies builds an increasingly robust understanding that is more likely to be transferable. The diversity of interventions that fall under SCBC and the cross-interventional focus of many of the studies mean that findings might not be generalizable to all forms of SCBC or its specific components. Patients with chronic diseases who participated in SCBC interventions reported greater satisfaction when SCBC helped them better understand their diagnosis, facilitated increased socialization, provided

A clinical perspective on electronically collecting patient-reported outcomes at the point-of-care for overactive bladder

PubMed Central

Desantis, Darren; Baverstock, Richard J.; Civitarese, Andrea; Crump, R. Trafford; Carlson, Kevin V.

2016-01-01

Introduction Collecting patient-reported outcomes (PROs) can inform the treatment and management of overactive bladder (OAB). However, collecting these data at the point-of-care can be time-consuming and have a negative impact on a clinic’s workflow. The purpose of this study was to pilot a digital system for collecting PROs at the point-of-care and qualitatively assess clinicians’ perspectives in terms of the system’s impact on the delivery of care for OAB. Methods Patients visiting a urology clinic for OAB completed several PRO instruments using a tablet while awaiting assessment. Clinicians reviewed their responses using a digital dashboard during clinical encounters. Qualitative interviews were conducted with the clinicians, to assess the collection system’s impact in terms of: 1) logistics, 2) workflow; 3) patient communication; 4) influence on clinical decisions; 5) user experiences; and 6) the care model. Results Six interviews were conducted and thematic saturation was met, with several themes emerging. All participants were generally positive regarding the use of the digital collecting system. Participants felt that the dashboard improved workflow and enhanced communication with patients, but it was not thought to be any more influential on clinical decision-making than conventional collection methods. Several aspects of the digital PRO collection system were identified as needing improvement. Conclusions The digital PRO collection system used at the point-of-care had a positive impact on the delivery of care for OAB. The results from this study could provide insight to other urologists who are interested in collecting PROs in their clinic. PMID:27942273

How are qualitative methods used in diabetes research? A 30-year systematic review.

PubMed

Hennink, Monique M; Kaiser, Bonnie N; Sekar, Swathi; Griswold, Emily P; Ali, Mohammed K

2017-02-01

We aimed to describe how qualitative methods are used in global research on diabetes and identify opportunities whereby qualitative methods could further benefit our understanding of the human experience of diabetes and interventions to address it. We conducted a systematic review of National Library of Medicine, EMBASE, and Web of Science electronic databases to identify original research articles that used qualitative methods to study diabetes between 1980 and 2011. We identified 554 eligible articles and categorised these by geographic region, year of publication, study population, study design, research question, qualitative data collection methods, and journal type. Results show low use of qualitative methods in diabetes research over the past 30 years. The majority of articles (75%) reported using substantive qualitative research, while mixed-methods research has remained underutilised. Eighty-five per cent of articles reported studies conducted in North America or Europe, with few studies in developing countries. Most articles reported recruiting clinic-based populations (58%). Over half (54%) of research questions focused on patient experience and 24% on diabetes management. Qualitative methods can provide important insights about socio-cultural aspects of disease to improve disease management. However, they remain underutilised for understanding the diabetes experience, especially in Africa and Asia and amongst non-clinic populations.

Implementation of a patient-facing genomic test report in the electronic health record using a web-application interface.

PubMed

Williams, Marc S; Kern, Melissa S; Lerch, Virginia R; Billet, Jonathan; Williams, Janet L; Moore, Gregory J

2018-05-30

Genomic medicine is emerging into clinical care. Communication of genetic laboratory results to patients and providers is hampered by the complex technical nature of the laboratory reports. This can lead to confusion and misinterpretation of the results resulting in inappropriate care. Patients usually do not receive a copy of the report leading to further opportunities for miscommunication. To address these problems, interpretive reports were created using input from the intended end users, patients and providers. This paper describes the technical development and deployment of the first patient-facing genomic test report (PGR) within an electronic health record (EHR) ecosystem using a locally developed standards-based web-application interface. A patient-facing genomic test report with a companion provider report was configured for implementation within the EHR using a locally developed software platform, COMPASS™. COMPASS™ is designed to manage secure data exchange, as well as patient and provider access to patient reported data capture and clinical display tools. COMPASS™ is built using a Software as a Service (SaaS) approach which exposes an API that apps can interact with. An authoring tool was developed that allowed creation of patient-specific PGRs and the accompanying provider reports. These were converted to a format that allowed them to be presented in the patient portal and EHR respectively using the existing COMPASS™ interface thus allowing patients, caregivers and providers access to individual reports designed for the intended end user. The PGR as developed was shown to enhance patient and provider communication around genomic results. It is built on current standards but is designed to support integration with other tools and be compatible with emerging opportunities such as SMART on FHIR. This approach could be used to support genomic return of results as the tool is scalable and generalizable.

Closing information gaps with shared electronic patient summaries: how much will it matter?

PubMed

Remen, Vebjørn Mack; Grimsmo, Anders

2011-11-01

Information deficits contribute to medical errors. Hence several efforts to develop electronic communication systems to facilitate a flow of information between health care providers have been attempted, including initiatives to develop regional or national electronic patient summaries. To study information access and information needs in inpatient emergency departments, and how clinicians in these departments handle deficits in available information. We conducted an observational study of consecutive unplanned inpatient admissions using a structured form to register a set of predefined parameters and free-text notes, including a post-examination interview with the examining emergency department doctors and nurses. We observed 177 patient admissions, excluding any patients under 18 years of age and planned admissions. One in four patients arrived without any referral. Nearly all referrals described the presenting complaint with a tentative diagnosis. One third of the referrals lacked medication record and medical history. Only one in ten referrals contained information about contraindications. If the patient had previously been admitted to the hospital, the emergency department doctors used the existing electronic patient record and seemed to favor previous discharge letters as an information source. Information on current medications was often copied from earlier admissions. In half of the cases the patients also provided supplementary information in other ways not available, though one in five patients was not in a cognitive state to be properly interviewed. The examining doctors reported a lack of crucial information in 10% of the observed referrals. Overall, information about medications and previous history was described in most referrals, but was still the information most frequently inquired or searched for. Qualitative assessments revealed that insufficient information put a significant stress on both patients and staff, and in turn caused additional

Sex Differences in Reported Pain Across 11,000 Patients Captured in Electronic Medical Records

PubMed Central

Ruau, David; Liu, Linda Y.; Clark, J. David; Angst, Martin S.; Butte, Atul J.

2011-01-01

Clinically recorded pain scores are abundant in patient health records but are rarely used in research. The use of this information could help improve clinical outcomes. For example, a recent report by the Institute of Medicine stated that ineffective use of clinical information contributes to under-treatment of patient subpopulations — especially women. This study used diagnosis-associated pain scores from a large hospital database to document sex differences in reported pain. We used de-identified electronic medical records from Stanford Hospital and Clinics for more than 72,000 patients. Each record contained at least one disease-associated pain score. We found over 160,000 pain scores in more than 250 primary diagnoses, and analyzed differences in disease-specific pain reported by men and women. After filtering for diagnoses with minimum encounter numbers, we found diagnosis-specific sex differences in reported pain. The most significant differences occurred in patients with disorders of the musculoskeletal, circulatory, respiratory and digestive systems, followed by infectious diseases, and injury and poisoning. We also discovered sex-specific differences in pain intensity in previously unreported diseases, including disorders of the cervical region, and acute sinusitis (p = 0.01, 0.017, respectively). Pain scores were collected during hospital encounters. No information about the use of pre-encounter over-the-counter medications was available. To our knowledge, this is the largest data-driven study documenting sex differences of disease-associated pain. It highlights the utility of EMR data to corroborate and expand on results of smaller clinical studies. Our findings emphasize the need for future research examining the mechanisms underlying differences in pain. PMID:22245360

Venous thromboembolism prophylaxis in mental health in-patient services: a qualitative study.

PubMed

Purcell, Audrey; Clarke, Mary; Maidment, Ian

2018-06-01

Background Venous thromboembolism (VTE) is an important and potentially preventable cause of morbidity and mortality in hospitalised patients. It is a significant, international patient safety issue affecting medical, surgical and mental health in-patients. There is a paucity of published evidence on the incidence of VTE, and the role of VTE risk-assessment and prophylaxis, in mental healthcare settings. Epidemiological evidence indicates that antipsychotic medications are an independent risk factor for VTE. Objective To explore healthcare practitioners' experiences and perspectives regarding VTE prophylaxis for in-patients in mental health services in Ireland. Setting This study was conducted in two national teaching hospitals in Dublin, Ireland. Method This experiential, qualitative study was conducted using face-to-face, semi-structured interviews. Purposive sampling was used to allow strategic selection of participants from the pharmacy, medical and nursing disciplines. Data was analysed using inductive thematic analysis. Consolidated criteria for reporting qualitative studies guidelines were used as a reporting framework. Main outcome measure Participants' views on VTE prophylaxis for mental health in-patients. Results Five key themes were derived: risk factors in mental health, attitudes to risk-assessment, challenges with VTE prophylaxis, lack of awareness, and lack of evidence in mental health. Conclusion The results indicate considerable diversities in perceived risk of VTE, and in experiences with VTE risk-assessment and prophylaxis. VTE risk was considered in practice specifically for immobile, older adults and eating disorder patients on bed rest. Specific research is required to address this area of clinical uncertainty in mental health.

An analysis of electronic health record-related patient safety incidents.

PubMed

Palojoki, Sari; Mäkelä, Matti; Lehtonen, Lasse; Saranto, Kaija

2017-06-01

The aim of this study was to analyse electronic health record-related patient safety incidents in the patient safety incident reporting database in fully digital hospitals in Finland. We compare Finnish data to similar international data and discuss their content with regard to the literature. We analysed the types of electronic health record-related patient safety incidents that occurred at 23 hospitals during a 2-year period. A procedure of taxonomy mapping served to allow comparisons. This study represents a rare examination of patient safety risks in a fully digital environment. The proportion of electronic health record-related incidents was markedly higher in our study than in previous studies with similar data. Human-computer interaction problems were the most frequently reported. The results show the possibility of error arising from the complex interaction between clinicians and computers.

Electronic Brief Intervention and Text Messaging for Marijuana Use During Pregnancy: Initial Acceptability of Patients and Providers

PubMed Central

Gray, Justin; Svikis, Dace S; Puder, Karoline S; Resnicow, Ken; Konkel, Janine; Rice, Shetoya; McGoron, Lucy; Ondersma, Steven J

2017-01-01

Background Marijuana is the most widely used illicit substance during pregnancy. Technology-delivered brief interventions and text messaging have shown promise in general and pregnant samples but have not yet been applied to marijuana use in pregnancy. Objective The objective of the study was to evaluate, among pregnant women and prenatal care providers, the acceptability of an electronic brief intervention and text messaging plan for marijuana use in pregnancy. Methods Participants included patients (n=10) and medical staff (n=12) from an urban prenatal clinic. Patient-participants were recruited directly during a prenatal care visit. Those who were eligible reviewed the interventions individually and provided quantitative and qualitative feedback regarding software acceptability and helpfulness during a one-on-one interview with research staff. Provider-participants took part in focus groups in which the intervention materials were reviewed and discussed. Qualitative and focus group feedback was transcribed, coded manually, and classified by category and theme. Results Patient-participants provided high ratings for satisfaction, with mean ratings for respectfulness, interest, ease of use, and helpfulness ranging between 4.4 and 4.7 on a 5-point Likert scale. Of the 10 participants, 5 reported that they preferred working with the program versus their doctor, and 9 of 10 said the intervention made them more likely to reduce their marijuana use. Provider-participants received the program favorably, stating the information presented was both relevant and important for their patient population. Conclusions The findings support the acceptability of electronic brief intervention and text messaging for marijuana use during pregnancy. This, combined with their ease of use and low barrier to initiation, suggests that further evaluation in a randomized trial is appropriate. PMID:29117931

Experiences With a Self-Reported Mobile Phone-Based System Among Patients With Colorectal Cancer: A Qualitative Study

PubMed Central

2016-01-01

Background In cancer care, mobile phone-based systems are becoming more widely used in the assessment, monitoring, and management of side effects. Objective To explore the experiences of patients with colorectal cancer on using a mobile phone-based system for reporting neurotoxic side effects. Methods Eleven patients were interviewed (ages 44-68 years). A semistructured interview guide was used to perform telephone interviews. The interviews were transcribed verbatim and analyzed with qualitative content analysis. Results The patients' experiences of using a mobile phone-based system were identified and constructed as: “being involved,” “pacing oneself,” and “managing the questions.” “Being involved” refers to their individual feelings. Patients were participating in their own care by being observant of the side effects they were experiencing. They were aware that the answers they gave were monitored in real time and taken into account by health care professionals when planning further treatment. “Pacing oneself” describes how the patients can have an impact on the time and place they choose to answer the questions. Answering the questionnaire was easy, and despite the substantial number of questions, it was quickly completed. “Managing the questions” pointed out that the patients needed to be observant because of the construction of the questions. They could not routinely answer all the questions. Patients understood that side effects can vary during the cycles of treatment and need to be assessed repeatedly during treatment. Conclusions This mobile phone-based system reinforced the patients’ feeling of involvement in their own care. The patients were comfortable with the technology and appreciated that the system was not time consuming. PMID:27282257

Refining Prescription Warning Labels Using Patient Feedback: A Qualitative Study

PubMed Central

Mansukhani, Sonal Ghura; Huang, Yen-Ming

2016-01-01

The complexity of written medication information hinders patients’ understanding and leads to patient misuse of prescribed medications. Incorporating patient feedback in designing prescription warning labels (PWLs) is crucial in enhancing patient comprehension of medication warning instructions. This qualitative study explored patient feedback on five newly designed PWLs. In-depth semi-structured face-to-face interviews were conducted with 21 patients, who were 18 years and older, spoke English, and took a prescription medication. These patients were shown different variations of the five most commonly used PWLs-Take with Food, Do not Drink Alcohol, Take with a Full glass of Water, Do not Chew or Break, and Protect from Sunlight. The 60-minute interviews explored feedback on patient comprehension of the PWL instructions and their suggestions for improving the clarity of the PWLs. At the end of the interview, patient self-reported socio-demographic information was collected with a 3-minute survey and a brief health literacy assessment was completed using the Newest Vital Sign. Twenty-one patients completed the interviews. Most patients were female (n = 15, 71.4%) with ages ranging from 23 to 66 years old (mean: 47.6 ± 13.3). The mean health literacy score was 2.4 on a scale of 0–6. Qualitative content analysis based on the text, pictures, and placement of the PWLs on the pill bottle showed preferences for including ‘WARNING’ on the PWL to create alertness, inclusion of a picture together with the text, yellow color highlighting behind the text, and placement of the PWL on the front of the pill bottle. Although patients had positive opinions of the redesigned PWLs, patients wanted further improvements to the content and design of the PWLs for enhanced clarity and understandability. PMID:27258026

Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

PubMed Central

Jones, Helen; Thomas, James; Newsham, Alex; Downing, Amy; Morris, Eva; Brown, Julia; Velikova, Galina; Forman, David; Wright, Penny

2013-01-01

Background Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries. Objective This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis. Methods Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system. Results ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback

A Qualitative Investigation on Patient Empowerment in Prostate Cancer

PubMed Central

Renzi, Chiara; Fioretti, Chiara; Oliveri, Serena; Mazzocco, Ketti; Zerini, Dario; Alessandro, Ombretta; Rojas, Damaris P.; Jereczek-Fossa, Barbara A.; Pravettoni, Gabriella

2017-01-01

Purpose: Men with prostate cancer often describe low levels of empowerment. eHealth interventions may represent useful tools to deliver care and education and to meet patients' needs within an empowerment framework. In order to design a platform for cancer patients' empowerment within the H2020 iManageCancer project, the perspective of the target population for the platform was assessed. The present study aims to assess the qualitative experience of prostate cancer patients during treatment in order to provide insights for clinical practice with a particular focus on the design of a web platform to promote cancer patients' empowerment. Methods: Ten patients undergoing radiation therapy treatment took part in a semi-structured interview to explore different aspects of patient empowerment. Four main thematic areas were addressed: patient-healthcare providers' communication, decision-making, needs, and resources. A qualitative approach using thematic analysis was followed. Results: Half of the patients reported little to no possibility to share information and questions with healthcare providers. With regards to decision-making, the role of healthcare providers was perceived as directive/informative, but half of the patients perceived to assume an active role in at least one interaction. Difficulties and needs included the choice of the specialist or of the structure after diagnosis, clinicians' support in self-management, surgical consequences, and side effects, preparation for radiation therapy. Resources included family and social support both from a practical and from an emotional perspective, coping style, and work schedule management. Conclusions: These results suggest that relations with healthcare providers should be supported, especially immediately after diagnosis and after surgery. Support to self-management after surgery and at the beginning of radiation therapy treatment also constitutes a priority. The adoption of a personalized approach from the

Blame the Patient, Blame the Doctor or Blame the System? A Meta-Synthesis of Qualitative Studies of Patient Safety in Primary Care

PubMed Central

Daker-White, Gavin; Hays, Rebecca; McSharry, Jennifer; Giles, Sally; Cheraghi-Sohi, Sudeh; Rhodes, Penny; Sanders, Caroline

2015-01-01

Objective Studies of patient safety in health care have traditionally focused on hospital medicine. However, recent years have seen more research located in primary care settings which have different features compared to secondary care. This study set out to synthesize published qualitative research concerning patient safety in primary care in order to build a conceptual model. Method Meta-ethnography, an interpretive synthesis method whereby third order interpretations are produced that best describe the groups of findings contained in the reports of primary studies. Results Forty-eight studies were included as 5 discrete subsets where the findings were translated into one another: patients’ perspectives of safety, staff perspectives of safety, medication safety, systems or organisational issues and the primary/secondary care interface. The studies were focused predominantly on issues seen to either improve or compromise patient safety. These issues related to the characteristics or behaviour of patients, staff or clinical systems and interactions between staff, patients and staff, or people and systems. Electronic health records, protocols and guidelines could be seen to both degrade and improve patient safety in different circumstances. A conceptual reading of the studies pointed to patient safety as a subjective feeling or judgement grounded in moral views and with potentially hidden psychological consequences affecting care processes and relationships. The main threats to safety appeared to derive from ‘grand’ systems issues, for example involving service accessibility, resources or working hours which may not be amenable to effective intervention by individual practices or health workers, especially in the context of a public health system. Conclusion Overall, the findings underline the human elements in patient safety primary health care. The key to patient safety lies in effective face-to-face communication between patients and health care staff or

An analysis of electronic health record-related patient safety concerns

PubMed Central

Meeks, Derek W; Smith, Michael W; Taylor, Lesley; Sittig, Dean F; Scott, Jean M; Singh, Hardeep

2014-01-01

Objective A recent Institute of Medicine report called for attention to safety issues related to electronic health records (EHRs). We analyzed EHR-related safety concerns reported within a large, integrated healthcare system. Methods The Informatics Patient Safety Office of the Veterans Health Administration (VA) maintains a non-punitive, voluntary reporting system to collect and investigate EHR-related safety concerns (ie, adverse events, potential events, and near misses). We analyzed completed investigations using an eight-dimension sociotechnical conceptual model that accounted for both technical and non-technical dimensions of safety. Using the framework analysis approach to qualitative data, we identified emergent and recurring safety concerns common to multiple reports. Results We extracted 100 consecutive, unique, closed investigations between August 2009 and May 2013 from 344 reported incidents. Seventy-four involved unsafe technology and 25 involved unsafe use of technology. A majority (70%) involved two or more model dimensions. Most often, non-technical dimensions such as workflow, policies, and personnel interacted in a complex fashion with technical dimensions such as software/hardware, content, and user interface to produce safety concerns. Most (94%) safety concerns related to either unmet data-display needs in the EHR (ie, displayed information available to the end user failed to reduce uncertainty or led to increased potential for patient harm), software upgrades or modifications, data transmission between components of the EHR, or ‘hidden dependencies’ within the EHR. Discussion EHR-related safety concerns involving both unsafe technology and unsafe use of technology persist long after ‘go-live’ and despite the sophisticated EHR infrastructure represented in our data source. Currently, few healthcare institutions have reporting and analysis capabilities similar to the VA. Conclusions Because EHR-related safety concerns have complex

Why Clinicians Don't Report Adverse Drug Events: Qualitative Study.

PubMed

Hohl, Corinne M; Small, Serena S; Peddie, David; Badke, Katherin; Bailey, Chantelle; Balka, Ellen

2018-02-27

Adverse drug events are unintended and harmful events related to medications. Adverse drug events are important for patient care, quality improvement, drug safety research, and postmarketing surveillance, but they are vastly underreported. Our objectives were to identify barriers to adverse drug event documentation and factors contributing to underreporting. This qualitative study was conducted in 1 ambulatory center, and the emergency departments and inpatient wards of 3 acute care hospitals in British Columbia between March 2014 and December 2016. We completed workplace observations and focus groups with general practitioners, hospitalists, emergency physicians, and hospital and community pharmacists. We analyzed field notes by coding and iteratively analyzing our data to identify emerging concepts, generate thematic and event summaries, and create workflow diagrams. Clinicians validated emerging concepts by applying them to cases from their clinical practice. We completed 238 hours of observations during which clinicians investigated 65 suspect adverse drug events. The observed events were often complex and diagnosed over time, requiring the input of multiple providers. Providers documented adverse drug events in charts to support continuity of care but never reported them to external agencies. Providers faced time constraints, and reporting would have required duplication of documentation. Existing reporting systems are not suited to capture the complex nature of adverse drug events or adapted to workflow and are simply not used by frontline clinicians. Systems that are integrated into electronic medical records, make use of existing data to avoid duplication of documentation, and generate alerts to improve safety may address the shortcomings of existing systems and generate robust adverse drug event data as a by-product of safer care. ©Corinne M Hohl, Serena S Small, David Peddie, Katherin Badke, Chantelle Bailey, Ellen Balka. Originally published in JMIR

Qualitative European survey of patients with idiopathic pulmonary fibrosis: patients' perspectives of the disease and treatment.

PubMed

Russell, Anne-Marie; Ripamonti, Elena; Vancheri, Carlo

2016-01-14

'Living with IPF and an exploration of Esbriet® - a new treatment' was an exploratory, qualitative, real-world survey of European patients with idiopathic pulmonary fibrosis (IPF) who were receiving treatment with pirfenidone prior to its commercial availability. The aim of the survey was to probe the impact of IPF on patients' quality of life; the role of healthcare professionals and caregivers; the information needs of both patients and their caregivers; and patients' perceptions of pirfenidone as a new treatment option for IPF. Patients from the UK, Germany and Italy, with a diagnosis of IPF (duration >3 months), who were being treated with pirfenidone, were recruited from patient support groups, specialist centres and advocacy groups. Semi-structured, qualitative, in-depth patient interviews of 1-h duration were conducted by an independent researcher. Patients were initially asked about their experiences of living with IPF and then prompted to describe their experiences of taking pirfenidone. Techniques utilised included: the bubble-speech technique; the icon cards projective exercise; and the free association exercise. All interviews were transcribed and analysed by an independent researcher. Forty-five patients (71% male) were interviewed (mean age 68.5 years; mean time since diagnosis 3.5 years); 87% of patients reported that diagnosis took >1 year. Patients reported that IPF had a significant physical and emotional impact on their quality of life. The beneficial role played by caregivers and interstitial lung disease specialist nurses (where available) was specifically highlighted. Although most patients were keen for information on IPF, this was often of poor quality, out of date, or in English only. Patients' perceptions of pirfenidone were largely positive and associated with 'hope' but were also influenced by the level of side effects experienced. This survey highlights the impact of IPF on patients' lives, and the need to adequately support both

Mandated reporters' experiences with reporting child maltreatment: a meta-synthesis of qualitative studies.

PubMed

McTavish, Jill R; Kimber, Melissa; Devries, Karen; Colombini, Manuela; MacGregor, Jennifer C D; Wathen, C Nadine; Agarwal, Arnav; MacMillan, Harriet L

2017-10-16

To systematically search for research about the effectiveness of mandatory reporting of child maltreatment and to synthesise qualitative research that explores mandated reporters' (MRs) experiences with reporting. As no studies assessing the effectiveness of mandatory reporting were retrieved from our systematic search, we conducted a meta-synthesis of retrieved qualitative research. Searches in Medline (Ovid), Embase, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Sociological Abstracts, Education Resources Information Center, Criminal Justice Abstracts and Cochrane Library yielded over 6000 citations, which were deduplicated and then screened by two independent reviewers. English-language, primary qualitative studies that investigated MRs' experiences with reporting of child maltreatment were included. Critical appraisal involved a modified checklist from the Critical Appraisal Skills Programme and qualitative meta-synthesis was used to combine results from the primary studies. All healthcare and social-service settings implicated by mandatory reporting laws were included. Included studies crossed nine high-income countries (USA, Australia, Sweden, Taiwan, Canada, Norway, Finland, Israel and Cyprus) and three middle-income countries (South Africa, Brazil and El Salvador). The studies represent the views of 1088 MRs. Factors that influence MRs' decision to report and MRs' views towards and experiences with mandatory reporting of child maltreatment. Forty-four articles reporting 42 studies were included. Findings indicate that MRs struggle to identify and respond to less overt forms of child maltreatment. While some articles (14%) described positive experiences MRs had with the reporting process, negative experiences were reported in 73% of articles and included accounts of harm to therapeutic relationships and child death following removal from their family of origin. The findings of this meta-synthesis suggest that there are many potentially

Transforming Verbal Counts in Reports of Qualitative Descriptive Studies Into Numbers

PubMed Central

Chang, YunKyung; Voils, Corrine I.; Sandelowski, Margarete; Hasselblad, Vic; Crandell, Jamie L.

2009-01-01

Reports of qualitative studies typically do not offer much information on the numbers of respondents linked to any one finding. This information may be especially useful in reports of basic, or minimally interpretive, qualitative descriptive studies focused on surveying a range of experiences in a target domain, and its lack may limit the ability to synthesize the results of such studies with quantitative results in systematic reviews. Accordingly, the authors illustrate strategies for deriving plausible ranges of respondents expressing a finding in a set of reports of basic qualitative descriptive studies on antiretroviral adherence and suggest how the results might be used. These strategies have limitations and are never appropriate for use with findings from interpretive qualitative studies. Yet they offer a temporary workaround for preserving and maximizing the value of information from basic qualitative descriptive studies for systematic reviews. They show also why quantitizing is never simply quantitative. PMID:19448052

The experiences of professionals with using information from patient-reported outcome measures to improve the quality of healthcare: a systematic review of qualitative research.

PubMed

Boyce, Maria B; Browne, John P; Greenhalgh, Joanne

2014-06-01

To synthesise qualitative studies that investigated the experiences of healthcare professionals with using information from patient-reported outcome measures (PROMs) to improve the quality of care. A qualitative systematic review was conducted by searching PubMed, PsycINFO and CINAHL with no time restrictions. Hand searching was also performed. Eligible studies were evaluated using the Critical Appraisal Skills Programme toolkit for qualitative studies. A thematic synthesis identified common themes across studies. Study characteristics were examined to explain differences in findings. All healthcare settings. Healthcare professionals. Professionals' views of PROMs after receiving PROMs feedback about individual patients or groups of patients. Sixteen studies met the inclusion criteria. Barriers and facilitators to the use of PROMs emerged within four main themes: collecting and incorporating the data (practical), valuing the data (attitudinal), making sense of the data (methodological) and using the data to make changes to patient care (impact). Professionals value PROMs when they are useful for the clinical decision-making process. Practical barriers to the routine use of PROMs are prominent when the correct infrastructure is not in place before commencing data collection and when their use is disruptive to normal work routines. Technology can play a greater role in processing the information in the most efficient manner. Improvements to the interpretability of PROMs should increase their use. Attitudes to the use of PROMs may be improved by engaging professionals in the planning stage of the intervention and by ensuring a high level of transparency around the rationale for data collection. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Montreal Accord on Patient-Reported Outcomes (PROs) use series - Paper 8: patient-reported outcomes in electronic health records can inform clinical and policy decisions.

PubMed

Ahmed, Sara; Ware, Patrick; Gardner, William; Witter, James; Bingham, Clifton O; Kairy, Dahlia; Bartlett, Susan J

2017-09-01

Given that the goal of health care systems is to improve and maintain the health of the populations they serve, the indicators of performance must include outcomes that are meaningful to patients. The growth of health technologies provides an unprecedented opportunity to integrate the patient voice into clinical care by linking electronic health records (EHRs) to patient-reported outcome (PRO) data collection. However, PRO data must be relevant, meaningful, and actionable for those who will have to invest the time and effort to collect it. In this study, we highlight opportunities to integrate PRO data collection into EHRs. We consider how stakeholder perspectives should influence the selection of PROs and ways to enhance engagement in and commitment to PRO implementation. We propose a research and policy agenda to address unanswered questions and facilitate the widespread adoption of PRO data collection into EHRs. Building a learning health care system that gathers PRO data in ways that can inform individual patient care, quality improvement, and comparative effectiveness research has the potential to accelerate the application of new evidence and knowledge to patient care. Copyright © 2017 Elsevier Inc. All rights reserved.

Mixed-methods development of a new patient-reported outcome instrument for chronic low back pain: part 1-the Patient Assessment for Low Back Pain - Symptoms (PAL-S).

PubMed

Martin, Mona L; Blum, Steven I; Liedgens, Hiltrud; Bushnell, Donald M; McCarrier, Kelly P; Hatley, Noël V; Ramasamy, Abhilasha; Freynhagen, Rainer; Wallace, Mark; Argoff, Charles; Eerdekens, Mariёlle; Kok, Maurits; Patrick, Donald L

2018-06-01

We describe the mixed-methods (qualitative and quantitative) development and preliminary validation of the Patient Assessment for Low Back Pain-Symptoms (PAL-S), a patient-reported outcome measure for use in chronic low back pain (cLBP) clinical trials. Qualitative methods (concept elicitation and cognitive interviews) were used to identify and refine symptom concepts and quantitative methods (classical test theory and Rasch measurement theory) were used to evaluate item- and scale-level performance of the measure using an iterative approach. Patients with cLBP participated in concept elicitation interviews (N = 43), cognitive interviews (N = 38), and interview-based assessment of paper-to-electronic mode equivalence (N = 8). A web-based sample of patients with self-reported cLBP participated in quantitative studies to evaluate preliminary (N = 598) and revised (n = 401) drafts and a physician-diagnosed cohort of patients with cLBP (N = 45) participated in preliminary validation of the measure. The PAL-S contained 14 items describing symptoms (overall pain, sharp, prickling, sensitive, tender, radiating, shocking, shooting, burning, squeezing, muscle spasms, throbbing, aching, and stiffness). Item-level performance, scale structure, and scoring seemed to be appropriate. One-week test-retest reproducibility was acceptable (intraclass correlation coefficient 0.81 [95% confidence interval, 0.61-0.91]). Convergent validity was demonstrated with total score and MOS-36 Bodily Pain (Pearson correlation -0.79), Neuropathic Pain Symptom Inventory (0.73), Roland-Morris Disability Questionnaire (0.67), and MOS-36 Physical Functioning (-0.65). Individual item scores and total score discriminated between numeric rating scale tertile groups and painDETECT categories. Respondent interpretation of paper and electronic administration modes was equivalent. The PAL-S has demonstrated content validity and is potentially useful to assess treatment benefit in cLBP clinical trials.

Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology.

PubMed

Basch, Ethan; Abernethy, Amy P; Mullins, C Daniel; Reeve, Bryce B; Smith, Mary Lou; Coons, Stephen Joel; Sloan, Jeff; Wenzel, Keith; Chauhan, Cynthia; Eppard, Wayland; Frank, Elizabeth S; Lipscomb, Joseph; Raymond, Stephen A; Spencer, Merianne; Tunis, Sean

2012-12-01

Examining the patient's subjective experience in prospective clinical comparative effectiveness research (CER) of oncology treatments or process interventions is essential for informing decision making. Patient-reported outcome (PRO) measures are the standard tools for directly eliciting the patient experience. There are currently no widely accepted standards for developing or implementing PRO measures in CER. Recommendations for the design and implementation of PRO measures in CER were developed via a standardized process including multistakeholder interviews, a technical working group, and public comments. Key recommendations are to include assessment of patient-reported symptoms as well as health-related quality of life in all prospective clinical CER studies in adult oncology; to identify symptoms relevant to a particular study population and context based on literature review and/or qualitative and quantitative methods; to assure that PRO measures used are valid, reliable, and sensitive in a comparable population (measures particularly recommended include EORTC QLQ-C30, FACT, MDASI, PRO-CTCAE, and PROMIS); to collect PRO data electronically whenever possible; to employ methods that minimize missing patient reports and include a plan for analyzing and reporting missing PRO data; to report the proportion of responders and cumulative distribution of responses in addition to mean changes in scores; and to publish results of PRO analyses simultaneously with other clinical outcomes. Twelve core symptoms are recommended for consideration in studies in advanced or metastatic cancers. Adherence to methodologic standards for the selection, implementation, and analysis/reporting of PRO measures will lead to an understanding of the patient experience that informs better decisions by patients, providers, regulators, and payers.

Barriers to computed tomography radiation risk communication in the emergency department: a qualitative analysis of patient and physician perspectives.

PubMed

Robey, Thomas E; Edwards, Kelly; Murphy, Mary K

2014-02-01

This qualitative study aimed to characterize the barriers to informed discussions between patients and emergency physicians (EPs) about radiation risk from computed tomography (CT) and to identify future interventions to improve patient understanding of CT radiation risk. This study used a focus group approach to collect concepts about radiation risk exposure from a national sample of EPs and a local sample of emergency department (ED) patients. A directed content analysis used an a priori medical ethics framework to explore themes from the focus groups while a subsequent normative ethics analysis compared these results with existing perceptions about discussing CT radiation risk. Focus groups (three each for a total of 19 EPs and 27 patients) identified concepts consistent with core medical ethics principles: patients emphasized autonomy and nonmaleficence more than physicians, while physicians emphasized beneficence. Subjects' knowledge of radiation dose and risk were equivalent to previously published reports. When asked about whether they should talk about radiation with patients, 74% of EPs reported that radiation exposure should be discussed, but the study EPs self-reported doing so with only an average of 24% of patients. Patients reported wanting to hear about radiation from their physicians the next time they need CT scans and thought that a written handout would work better than any other method. When presented with options for how to discuss risk with patients, EPs reported needing easy access to risk information and preferred discussion over other communications approaches, but had mixed support of distributing patient handouts. The normative view that radiation from diagnostic CT should be discussed in the ED is shared by patients and physicians, but is challenged by the lack of a structured method to communicate CT radiation risk to ED patients. Our analysis identifies promising interest among physicians and patients to use information guides and

Facilitating Ambulatory Electronic Health Record System Implementation: Evidence from a Qualitative Study

PubMed Central

Hefner, Jennifer; Robbins, Julie; Huerta, Timothy R.

2013-01-01

Background. Ambulatory care practices have increasing interest in leveraging the capabilities of electronic health record (EHR) systems, but little information is available documenting how organizations have successfully implemented these systems. Objective. To characterize elements of successful electronic health record (EHR) system implementation and to synthesize the key informants' perspectives about successful implementation practices. Methods. Key informant interviews and focus groups were conducted with a purposive sample of individuals from US healthcare organizations identified for their success with ambulatory EHR implementation. Rigorous qualitative data analyses used both deductive and inductive methods. Results. Participants identified personal and system-related barriers, at both the individual and organization levels, including poor computer skills, productivity losses, resistance to change, and EHR system failure. Implementation success was reportedly facilitated by careful planning and consistent communication throughout distinct stages of the implementation process. A significant element of successful implementation was an emphasis on optimization, both during “go-live” and, subsequently, when users had more experience with the system. Conclusion. Successful EHR implementation requires both detailed planning and clear mechanisms to deal with unforeseen or unintended consequences. Focusing on user buy-in early and including plans for optimization can facilitate greater success. PMID:24228257

Cochrane Qualitative and Implementation Methods Group guidance series-paper 6: reporting guidelines for qualitative, implementation, and process evaluation evidence syntheses.

PubMed

Flemming, Kate; Booth, Andrew; Hannes, Karin; Cargo, Margaret; Noyes, Jane

2018-05-01

To outline contemporary and novel developments for the presentation and reporting of syntheses of qualitative, implementation, and process evaluation evidence and provide recommendations for the use of reporting guidelines. An overview of reporting guidelines for qualitative, implementation, and process evaluation evidence syntheses drawing on current international literature and the collective expert knowledge of the Cochrane Qualitative and Implementation Methods Group. Several reporting guidelines exist that can be used or adapted to report syntheses of qualitative, implementation, and process evaluation evidence. Methods to develop individual guidance varied. The use of a relevant reporting guideline can enhance the transparency, consistency, and quality of reporting. Guidelines that exist are generic, method specific, and for particular aspects of the reviewing process, searching. Caution is expressed over the potential for reporting guidelines to produce a mechanistic approach moving the focus away from the content and toward the procedural aspects of the review. The use of a reporting guideline is recommended and a five-step decision flowchart to guide the choice of reporting guideline is provided. Gaps remain in method-specific reporting guidelines such as mixed-study, implementation, and process evaluation evidence syntheses. Copyright © 2017 Elsevier Inc. All rights reserved.

PATIENT-REPORTED OUTCOMES (PROs): PUTTING THE PATIENT PERSPECTIVE IN PATIENT-CENTERED OUTCOMES RESEARCH

PubMed Central

Snyder, Claire F.; Jensen, Roxanne E.; Segal, Jodi B.; Wu, Albert W.

2013-01-01

Patient-centered outcomes research (PCOR) aims to improve care quality and patient outcomes by providing information that patients, clinicians, and family members need regarding treatment alternatives, and emphasizing patient input to inform the research process. PCOR capitalizes on available data sources and generates new evidence to provide timely and relevant information and can be conducted using prospective data collection, disease registries, electronic medical records, aggregated results from prior research, and administrative claims. Given PCOR’s emphasis on the patient perspective, methods to incorporate patient-reported outcomes (PROs) are critical. PROs are defined by the U.S. Food & Drug Administration as “Any report coming directly from patients… about a health condition and its treatment.” However, PROs have not routinely been collected in a way that facilitates their use in PCOR. Electronic medical records, disease registries, and administrative data have only rarely collected, or been linked to, PROs. Recent technological developments facilitate the electronic collection of PROs and linkage of PRO data, offering new opportunities for putting the patient perspective in PCOR. This paper describes the importance of and methods for using PROs for PCOR. We (1) define PROs; (2) identify how PROs can be used in PCOR, and the critical role of electronic data methods for facilitating the use of PRO data in PCOR; (3) outline the challenges and key unanswered questions that need to be addressed for the routine use of PROs in PCOR; and (4) discuss policy and research interventions to accelerate the integration of PROs with clinical data. PMID:23774513

Standards for Instrument Migration When Implementing Paper Patient-Reported Outcome Instruments Electronically: Recommendations from a Qualitative Synthesis of Cognitive Interview and Usability Studies.

PubMed

Muehlhausen, Willie; Byrom, Bill; Skerritt, Barbara; McCarthy, Marie; McDowell, Bryan; Sohn, Jeremy

2018-01-01

To synthesize the findings of cognitive interview and usability studies performed to assess the measurement equivalence of patient-reported outcome (PRO) instruments migrated from paper to electronic formats (ePRO), and make recommendations regarding future migration validation requirements and ePRO design best practice. We synthesized findings from all cognitive interview and usability studies performed by a contract research organization between 2012 and 2015: 53 studies comprising 68 unique instruments and 101 instrument evaluations. We summarized study findings to make recommendations for best practice and future validation requirements. Five studies (9%) identified minor findings during cognitive interview that may possibly affect instrument measurement properties. All findings could be addressed by application of ePRO best practice, such as eliminating scrolling, ensuring appropriate font size, ensuring suitable thickness of visual analogue scale lines, and providing suitable instructions. Similarly, regarding solution usability, 49 of the 53 studies (92%) recommended no changes in display clarity, navigation, operation, and completion without help. Reported usability findings could be eliminated by following good product design such as the size, location, and responsiveness of navigation buttons. With the benefit of accumulating evidence, it is possible to relax the need to routinely conduct cognitive interview and usability studies when implementing minor changes during instrument migration. Application of design best practice and selecting vendor solutions with good user interface and user experience properties that have been assessed in a representative group may enable many instrument migrations to be accepted without formal validation studies by instead conducting a structured expert screen review. Copyright © 2018 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.

Building and testing a patient-centric electronic bedside communication center.

PubMed

Dykes, Patricia C; Carroll, Diane L; Hurley, Ann C; Benoit, Angela; Chang, Frank; Pozzar, Rachel; Caligtan, Christine A

2013-01-01

In this article, the authors describe the development and pilot testing of an electronic bedside communication center (eBCC) prototype to improve access to health information for hospitalized adults and their family caregivers. Focus groups were used to identify improvements for the initial eBCC prototype developed by the research team. Face-to-face bedside interviews and questions were presented while patients used the eBCC for usability testing to drive further development. Qualitative methods within an iterative, participatory approach supported the development of an eBCC prototype that was considered both easy to use and helpful for accessing tailored patient information during an inpatient hospitalization to receive acute care. Copyright 2013, SLACK Incorporated.

Patient safety incident reporting: a qualitative study of thoughts and perceptions of experts 15 years after 'To Err is Human'.

PubMed

Mitchell, Imogen; Schuster, Anne; Smith, Katherine; Pronovost, Peter; Wu, Albert

2016-02-01

One of the key recommendations of the Institute of Medicine's (IOM) report, To Err is Human, 15 years ago was for greater attention to incident reporting in healthcare, analogous to the role it has played in aviation and other high-risk industries. With the passage of time and maturation of the patient safety field, we conducted semistructured interviews with 11 international patient safety experts with knowledge of the US healthcare and meeting at least one of the following criteria: (1) involved in the development of the IOM's recommendations, (2) responsible for the design and/or implementation of national or regional incident reporting systems, (3) conducted research on patient safety/incident reporting at a national level. Five key challenges emerged to explain why incident reporting has not reached its potential: poor processing of incident reports (triaging, analysis, recommendations), inadequate engagement of doctors, insufficient subsequent visible action, inadequate funding and institutional support of incident reporting systems and inadequate usage of evolving health information technology. Leading patient safety experts acknowledge the current challenges of incident reports. The future of incident reporting lies in targeted incident reporting, effective triaging and robust analysis of the incident reports and meaningful engagement of doctors. Incident reporting must be coupled with visible, sustainable action and linkage of incident reports to the electronic health record. If the healthcare industry wants to learn from its mistakes, miss or near miss events, it will need to take incident reporting as seriously as the health budget. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Electronic patient-reported data capture as a foundation of rapid learning cancer care.

PubMed

Abernethy, Amy P; Ahmad, Asif; Zafar, S Yousuf; Wheeler, Jane L; Reese, Jennifer Barsky; Lyerly, H Kim

2010-06-01

"Rapid learning healthcare" presents a new infrastructure to support comparative effectiveness research. By leveraging heterogeneous datasets (eg, clinical, administrative, genomic, registry, and research), health information technology, and sophisticated iterative analyses, rapid learning healthcare provides a real-time framework in which clinical studies can evaluate the relative impact of therapeutic approaches on a diverse array of measures. This article describes an effort, at 1 academic medical center, to demonstrate what rapid learning healthcare might look like in operation. The article describes the process of developing and testing the components of this new model of integrated clinical/research function, with the pilot site being an academic oncology clinic and with electronic patient-reported outcomes (ePROs) being the foundational dataset. Steps included: feasibility study of the ePRO system; validation study of ePRO collection across 3 cancers; linking ePRO and other datasets; implementation; stakeholder alignment and buy in, and; demonstration through use cases. Two use cases are presented; participants were metastatic breast cancer (n = 65) and gastrointestinal cancer (n = 113) patients at 2 academic medical centers. (1) Patient-reported symptom data were collected with tablet computers; patients with breast and gastrointestinal cancer indicated high levels of sexual distress, which prompted multidisciplinary response, design of an intervention, and successful application for funding to study the intervention's impact. (2) The system evaluated the longitudinal impact of a psychosocial care program provided to patients with breast cancer. Participants used tablet computers to complete PRO surveys; data indicated significant impact on psychosocial outcomes, notably distress and despair, despite advanced disease. Results return to the clinic, allowing iterative update and evaluation. An ePRO-based rapid learning cancer clinic is feasible, providing

Electronic patient-reported outcomes from home in patients recovering from major gynecologic cancer surgery: A prospective study measuring symptoms and health-related quality of life.

PubMed

Cowan, Renee A; Suidan, Rudy S; Andikyan, Vaagn; Rezk, Youssef A; Einstein, M Heather; Chang, Kaity; Carter, Jeanne; Zivanovic, Oliver; Jewell, Elizabeth J; Abu-Rustum, Nadeem R; Basch, Ethan; Chi, Dennis S

2016-11-01

We previously reported on the feasibility of a Web-based system to capture patient-reported outcomes (PROs) in the immediate postoperative period. The purpose of this study was to update the experience of these patients and assess patient and provider satisfaction and feedback regarding the system. This is a prospective cohort study of patients scheduled to undergo laparotomy for presumed gynecologic malignancy. Patients completed a Web-based Symptom Tracking and Reporting (STAR) questionnaire preoperatively and weekly during a 6-week postoperative period. Email alerts were sent to study nurses when concerning patient responses were entered. The patient and the nurse assessments of STAR's usefulness were measured via an exit survey. The study enrolled 96 eligible patients. Of these, 71 patients (74%) completed at least four of seven total sessions. Of the patients who completed the exit satisfaction survey, 98% found STAR easy to use; 84% found it useful; and 82% would recommend it to other patients. Despite positive feedback from patients, clinical personnel found that the STAR system increased their current workload without enhancing patient care. Application of an electronic program for PROs in those recovering from major gynecologic cancer surgery is feasible, and acceptable to most patients. While most clinicians did not find STAR clinically helpful, the majority of patients reported a positive experience with the system and would recommend its use. The program helped many patients feel more empowered in their postoperative recovery. Copyright © 2016 Elsevier Inc. All rights reserved.

Towards successful coordination of electronic health record based-referrals: a qualitative analysis.

PubMed

Hysong, Sylvia J; Esquivel, Adol; Sittig, Dean F; Paul, Lindsey A; Espadas, Donna; Singh, Simran; Singh, Hardeep

2011-07-27

Successful subspecialty referrals require considerable coordination and interactive communication among the primary care provider (PCP), the subspecialist, and the patient, which may be challenging in the outpatient setting. Even when referrals are facilitated by electronic health records (EHRs) (i.e., e-referrals), lapses in patient follow-up might occur. Although compelling reasons exist why referral coordination should be improved, little is known about which elements of the complex referral coordination process should be targeted for improvement. Using Okhuysen & Bechky's coordination framework, this paper aims to understand the barriers, facilitators, and suggestions for improving communication and coordination of EHR-based referrals in an integrated healthcare system. We conducted a qualitative study to understand coordination breakdowns related to e-referrals in an integrated healthcare system and examined work-system factors that affect the timely receipt of subspecialty care. We conducted interviews with seven subject matter experts and six focus groups with a total of 30 PCPs and subspecialists at two tertiary care Department of Veterans Affairs (VA) medical centers. Using techniques from grounded theory and content analysis, we identified organizational themes that affected the referral process. Four themes emerged: lack of an institutional referral policy, lack of standardization in certain referral procedures, ambiguity in roles and responsibilities, and inadequate resources to adapt and respond to referral requests effectively. Marked differences in PCPs' and subspecialists' communication styles and individual mental models of the referral processes likely precluded the development of a shared mental model to facilitate coordination and successful referral completion. Notably, very few barriers related to the EHR were reported. Despite facilitating information transfer between PCPs and subspecialists, e-referrals remain prone to coordination

Towards successful coordination of electronic health record based-referrals: a qualitative analysis

PubMed Central

2011-01-01

Background Successful subspecialty referrals require considerable coordination and interactive communication among the primary care provider (PCP), the subspecialist, and the patient, which may be challenging in the outpatient setting. Even when referrals are facilitated by electronic health records (EHRs) (i.e., e-referrals), lapses in patient follow-up might occur. Although compelling reasons exist why referral coordination should be improved, little is known about which elements of the complex referral coordination process should be targeted for improvement. Using Okhuysen & Bechky's coordination framework, this paper aims to understand the barriers, facilitators, and suggestions for improving communication and coordination of EHR-based referrals in an integrated healthcare system. Methods We conducted a qualitative study to understand coordination breakdowns related to e-referrals in an integrated healthcare system and examined work-system factors that affect the timely receipt of subspecialty care. We conducted interviews with seven subject matter experts and six focus groups with a total of 30 PCPs and subspecialists at two tertiary care Department of Veterans Affairs (VA) medical centers. Using techniques from grounded theory and content analysis, we identified organizational themes that affected the referral process. Results Four themes emerged: lack of an institutional referral policy, lack of standardization in certain referral procedures, ambiguity in roles and responsibilities, and inadequate resources to adapt and respond to referral requests effectively. Marked differences in PCPs' and subspecialists' communication styles and individual mental models of the referral processes likely precluded the development of a shared mental model to facilitate coordination and successful referral completion. Notably, very few barriers related to the EHR were reported. Conclusions Despite facilitating information transfer between PCPs and subspecialists, e

Electronic Brief Intervention and Text Messaging for Marijuana Use During Pregnancy: Initial Acceptability of Patients and Providers.

PubMed

Gray, Justin; Beatty, Jessica R; Svikis, Dace S; Puder, Karoline S; Resnicow, Ken; Konkel, Janine; Rice, Shetoya; McGoron, Lucy; Ondersma, Steven J

2017-11-08

Marijuana is the most widely used illicit substance during pregnancy. Technology-delivered brief interventions and text messaging have shown promise in general and pregnant samples but have not yet been applied to marijuana use in pregnancy. The objective of the study was to evaluate, among pregnant women and prenatal care providers, the acceptability of an electronic brief intervention and text messaging plan for marijuana use in pregnancy. Participants included patients (n=10) and medical staff (n=12) from an urban prenatal clinic. Patient-participants were recruited directly during a prenatal care visit. Those who were eligible reviewed the interventions individually and provided quantitative and qualitative feedback regarding software acceptability and helpfulness during a one-on-one interview with research staff. Provider-participants took part in focus groups in which the intervention materials were reviewed and discussed. Qualitative and focus group feedback was transcribed, coded manually, and classified by category and theme. Patient-participants provided high ratings for satisfaction, with mean ratings for respectfulness, interest, ease of use, and helpfulness ranging between 4.4 and 4.7 on a 5-point Likert scale. Of the 10 participants, 5 reported that they preferred working with the program versus their doctor, and 9 of 10 said the intervention made them more likely to reduce their marijuana use. Provider-participants received the program favorably, stating the information presented was both relevant and important for their patient population. The findings support the acceptability of electronic brief intervention and text messaging for marijuana use during pregnancy. This, combined with their ease of use and low barrier to initiation, suggests that further evaluation in a randomized trial is appropriate. ©Justin Gray, Jessica R Beatty, Dace S Svikis, Karoline S Puder, Ken Resnicow, Janine Konkel, Shetoya Rice, Lucy McGoron, Steven J Ondersma

Patients' perspectives on taking warfarin: qualitative study in family practice

PubMed Central

Dantas, Guilherme Coelho; Thompson, Barbara V; Manson, Judith A; Tracy, C Shawn; Upshur, Ross EG

2004-01-01

Background Despite the well-documented benefits of using warfarin to prevent stroke, physicians remain reluctant to initiate therapy, and especially so with the elderly owing to the higher risk of hemorrhage. Prior research suggests that patients are more accepting of the risk of bleeding than are physicians, although there have been few qualitative studies. The aim of this study was to employ qualitative methods to investigate the experience and perspective of individuals taking warfarin. Methods We conducted face-to-face interviews with 21 older patients (12 male, 9 female) who had been taking warfarin for a minimum of six months. Participants were patients at a family practice clinic situated in a large, tertiary care teaching hospital. We used a semistructured interview guide with four main thematic areas: decision-making, knowledge/education, impact, and satisfaction. Data were analysed according to the principles of content analysis. Results and Discussion Participants tended to have minimal input into the decision to initiate warfarin therapy, instead relying in great part on physicians' expertise. There appeared to be low retention of information received regarding the therapy; half the patients in our sample possessed only a superficial level of understanding of the risks and benefits. This notwithstanding, participants reported a high level of satisfaction with the care provided and a low level of impact on their day-to-day lives. Conclusions Minimal patient involvement in the initial decision and modest knowledge did not appear to diminish satisfaction with warfarin management. At the same time, care providers exert a tremendous influence on the initiation of warfarin therapy and should strive to incorporate patient preferences and expectations into the decision-making process. PMID:15268764

Clinicians' Reports in Electronic Health Records Versus Patients' Concerns in Social Media: A Pilot Study of Adverse Drug Reactions of Aspirin and Atorvastatin.

PubMed

Topaz, Maxim; Lai, Kenneth; Dhopeshwarkar, Neil; Seger, Diane L; Sa'adon, Roee; Goss, Foster; Rozenblum, Ronen; Zhou, Li

2016-03-01

Large databases of clinician reported (e.g., allergy repositories) and patient reported (e.g., social media) adverse drug reactions (ADRs) exist; however, whether patients and clinicians report the same concerns is not clear. Our objective was to compare electronic health record data and social media data to better understand differences and similarities between clinician-reported ADRs and patients' concerns regarding aspirin and atorvastatin. This pilot study explored a large repository of electronic health record data and social media data for clinician-reported ADRs and patients concerns for two common medications: aspirin (n = 31,817 ADRs accessible in clinical data; n = 19,186 potential ADRs accessible in social media data) and atorvastatin (n = 15,047 ADRs accessible in clinical data; n = 23,408 potential ADRs accessible in social media data). We found that the most frequently reported ADRs matched the most frequent patients' concerns. However, several less frequently reported reactions were more prevalent on social media (i.e., aspirin-induced hypoglycemia was discussed only on social media). Overall, we found a relatively strong positive and statistically significant correlation between the frequency ranking of reactions and patients' concerns for atorvastatin (Pearson's r = 0.61, p < 0.001) but not for aspirin (Pearson's r = 0.1, p = 0.69). Future studies should develop further natural language methods for a more detailed data analysis (i.e., identifying causality and temporal aspects in the social media data).

Patients in transition--improving hospital-home care collaboration through electronic messaging: providers' perspectives.

PubMed

Melby, Line; Brattheim, Berit J; Hellesø, Ragnhild

2015-12-01

To explore how the use of electronic messages support hospital and community care nurses' collaboration and communication concerning patients' admittance to and discharges from hospitals. Nurses in hospitals and in community care play a crucial role in the transfer of patients between the home and the hospital. Several studies have shown that transition situations are challenging due to a lack of communication and information exchange. Information and communication technologies may support nurses' work in these transition situations. An electronic message system was introduced in Norway to support patient transitions across the health care sector. A descriptive, qualitative interview study was conducted. One hospital and three adjacent communities were included in the study. We conducted semi-structured interviews with hospital nurses and community care nurses. In total, 41 persons were included in the study. The analysis stemmed from three main topics related to the aims of e-messaging: efficiency, quality and safety. These were further divided into sub-themes. All informants agreed that electronic messaging is more efficient, i.e. less time-consuming than previous means of communication. The shift from predominantly oral communication to writing electronic messages has brought attention to the content of the information exchanged, thereby leading to more conscious communication. Electronic messaging enables improved information security, thereby enhancing patient safety, but this depends on nurses using the system as intended. Nurses consider electronic messaging to be a useful tool for communication and collaboration in patient transitions. Patient transitions are demanding situations both for patients and for the nurses who facilitate the transitions. The introduction of information and communication technologies can support nurses' work in the transition situations, and this is likely to benefit the patients. © 2015 John Wiley & Sons Ltd.

[Qualitative analysis among electronic cigarette users: practices, use, representations].

PubMed

Fontaine, Astrid; Artigas, Fernanda

2017-01-01

Electronic cigarettes are smokeless devices that simulate the act of tobacco smoking by spraying an ?e-liquid? and diffusing an aerosol that is inhaled by the user. Although the initial enthusiasm observed in 2012-2013 has tended to flag, electronic cigarettes are now part of the landscape of smokers seeking an alternative to smoking and abstinence. Smoking cessation professionals need to meet a growing demand from smokers and must adopt a clear position in relation to this device. The results presented here were derived from a qualitative study conducted with the financial support of the French Directorate of Health, part of the Ministry of Social Affairs and Health from September 2014 to January 2016. The study was based on classical field-work ethnology: observations were made during events involving electronic cigarette users and 25 semi-structured interviews with diverse profiles to clarify a poorly known field. This study contributes to the observation and understanding of an emerging phenomenon, likely to induce a lasting change in our relationship to tobacco. The study revealed a wide variety of profiles among smokers interested by electronic cigarettes. Men and women, young and old, or former smokers, adopt various attitudes when trying this device, and their patterns of use often change over the months following initiation.

Acceptability of an Electronic Self-Report Assessment Program for patients with cancer.

PubMed

Wolpin, Seth; Berry, Donna; Austin-Seymour, Mary; Bush, Nigel; Fann, Jesse R; Halpenny, Barbara; Lober, William B; McCorkle, Ruth

2008-01-01

Eliciting symptom and quality of life information from patients is an important component of medical and nursing care processes. Traditionally, this information has been collected with paper and pencil. However, this approach presents several barriers, including delays in receiving information, difficulty in integrating responses with electronic records, and the time required to manually score questionnaires for measurement purposes. One solution that addresses many of these barriers is the adoption of computerized screening for symptom and quality-of-life information. This research explored the acceptability of asking symptom and quality-of-life questions using the Electronic Self Report Assessment-Cancer program on wireless laptops equipped with touch-screen format. Acceptability data were explored with respect to whether any differences may be attributed to demographics and symptom and quality-of-life levels, such as depression and cognitive and emotional functioning. This evaluation used descriptive and univariate statistics to examine data from 342 participants from the ongoing ESRA-C randomized clinical trial. Research participants for the ESRA-C study were recruited from the Seattle Cancer Care Alliance, a consortium among the University of Washington Medical Center, Fred Hutchinson Cancer Research Center, and Children's Hospital and Regional Medical Center in Seattle, WA. The sample consisted of 342 adult participants who completed both baseline and follow-up survey sessions. Medical oncology represented the largest recruitment group (45.3%), followed by stem cell transplant (34.5%) and radiation oncology (20.2%). The primary finding was that patients were generally able to use ESRA-C quickly and without difficulty in a real-world clinical setting and that they were overall quite satisfied with the ESRA-C program. Significant differences were found in several acceptability areas with respect to demographics and quality of life measures such as age, sex, and

Electronic symptom reporting between patient and provider for improved health care service quality: a systematic review of randomized controlled trials. part 1: state of the art.

PubMed

Johansen, Monika Alise; Henriksen, Eva; Horsch, Alexander; Schuster, Tibor; Berntsen, Gro K Rosvold

2012-10-03

Over the last two decades, the number of studies on electronic symptom reporting has increased greatly. However, the field is very heterogeneous: the choices of patient groups, health service innovations, and research targets seem to involve a broad range of foci. To move the field forward, it is necessary to build on work that has been done and direct further research to the areas holding most promise. Therefore, we conducted a comprehensive review of randomized controlled trials (RCTs) focusing on electronic communication between patient and provider to improve health care service quality, presented in two parts. Part 2 investigates the methodological quality and effects of the RCTs, and demonstrates some promising benefits of electronic symptom reporting. To give a comprehensive overview of the most mature part of this emerging field regarding (1) patient groups, (2) health service innovations, and (3) research targets relevant to electronic symptom reporting. We searched Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore for original studies presented in English-language articles published from 1990 to November 2011. Inclusion criteria were RCTs of interventions where patients or parents reported health information electronically to the health care system for health care purposes and were given feedback. Of 642 records identified, we included 32 articles representing 29 studies. The included articles were published from 2002, with 24 published during the last 5 years. The following five patient groups were represented: respiratory and lung diseases (12 studies), cancer (6), psychiatry (6), cardiovascular (3), and diabetes (1). In addition to these, 1 study had a mix of three groups. All included studies, except 1, focused on long-term conditions. We identified four categories of health service innovations: consultation support (7 studies), monitoring with clinician support (12), self-management with clinician support (9

Electronic Symptom Reporting Between Patient and Provider for Improved Health Care Service Quality: A Systematic Review of Randomized Controlled Trials. Part 1: State of the Art

PubMed Central

Henriksen, Eva; Horsch, Alexander; Schuster, Tibor; Berntsen, Gro K Rosvold

2012-01-01

Background Over the last two decades, the number of studies on electronic symptom reporting has increased greatly. However, the field is very heterogeneous: the choices of patient groups, health service innovations, and research targets seem to involve a broad range of foci. To move the field forward, it is necessary to build on work that has been done and direct further research to the areas holding most promise. Therefore, we conducted a comprehensive review of randomized controlled trials (RCTs) focusing on electronic communication between patient and provider to improve health care service quality, presented in two parts. Part 2 investigates the methodological quality and effects of the RCTs, and demonstrates some promising benefits of electronic symptom reporting. Objective To give a comprehensive overview of the most mature part of this emerging field regarding (1) patient groups, (2) health service innovations, and (3) research targets relevant to electronic symptom reporting. Methods We searched Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore for original studies presented in English-language articles published from 1990 to November 2011. Inclusion criteria were RCTs of interventions where patients or parents reported health information electronically to the health care system for health care purposes and were given feedback. Results Of 642 records identified, we included 32 articles representing 29 studies. The included articles were published from 2002, with 24 published during the last 5 years. The following five patient groups were represented: respiratory and lung diseases (12 studies), cancer (6), psychiatry (6), cardiovascular (3), and diabetes (1). In addition to these, 1 study had a mix of three groups. All included studies, except 1, focused on long-term conditions. We identified four categories of health service innovations: consultation support (7 studies), monitoring with clinician support (12), self

Patient involvement in patient safety: Protocol for developing an intervention using patient reports of organisational safety and patient incident reporting.

PubMed

Ward, Jane K; McEachan, Rosemary R C; Lawton, Rebecca; Armitage, Gerry; Watt, Ian; Wright, John

2011-05-27

Patients have the potential to provide a rich source of information on both organisational aspects of safety and patient safety incidents. This project aims to develop two patient safety interventions to promote organisational learning about safety - a patient measure of organisational safety (PMOS), and a patient incident reporting tool (PIRT) - to help the NHS prevent patient safety incidents by learning more about when and why they occur. To develop the PMOS 1) literature will be reviewed to identify similar measures and key contributory factors to error; 2) four patient focus groups will ascertain practicality and feasibility; 3) 25 patient interviews will elicit approximately 60 items across 10 domains; 4) 10 patient and clinician interviews will test acceptability and understanding. Qualitative data will be analysed using thematic content analysis.To develop the PIRT 1) individual and then combined patient and clinician focus groups will provide guidance for the development of three potential reporting tools; 2) nine wards across three hospital directorates will pilot each of the tools for three months. The best performing tool will be identified from the frequency, volume and quality of reports. The validity of both measures will be tested. 300 patients will be asked to complete the PMOS and PIRT during their stay in hospital. A sub-sample (N = 50) will complete the PMOS again one week later. Health professionals in participating wards will also be asked to complete the AHRQ safety culture questionnaire. Case notes for all patients will be reviewed. The psychometric properties of the PMOS will be assessed and a final valid and reliable version developed. Concurrent validity for the PIRT will be assessed by comparing reported incidents with those identified from case note review and the existing staff reporting scheme. In a subsequent study these tools will be used to provide information to wards/units about their priorities for patient safety. A patient

Qualitative interviews vs standardized self-report questionnaires in assessing quality of life in heart transplant recipients.

PubMed

Abbey, Susan E; De Luca, Enza; Mauthner, Oliver E; McKeever, Patricia; Shildrick, Margrit; Poole, Jennifer M; Gewarges, Mena; Ross, Heather J

2011-08-01

Quality of life (QoL) studies in heart transplant recipients (HTRs) using validated, quantitative, self-report questionnaires have reported poor QoL in approximately 20% of patients. This consecutive mixed methods study compared self-report questionnaires, the Medical Outcomes Study 36-item Short Form Health Survey (MOS SF-36) and the Atkinson Life Satisfaction Scale, with phenomenologically informed audiovisual (AV) qualitative interview data in 27 medically stable HTRs (70% male; age 53 ± 13.77 years; time since transplant 4.06 ± 2.42 years). Self-report questionnaire data reported poor QoL and more distress compared with previous studies and normative population samples; in contrast, 52% of HTRs displayed pervasive distress according to visual methodology. Using qualitative methods to assess QoL yields information that would otherwise remain unobserved by the exclusive use of quantitative QOL questionnaires. Copyright © 2011 International Society for Heart and Lung Transplantation. Published by Elsevier Inc. All rights reserved.

Telemanagement of hypertension: A qualitative assessment of patient and physician preferences

PubMed Central

Halifax, Nancy VD; Cafazzo, Joseph A; Irvine, M Jane; Hamill, Melinda; Rizo, Carlos A; McIsaac, Warren J; Rossos, Peter G; Logan, Alexander G

2007-01-01

BACKGROUND: Prevalence surveys have consistently found that the blood pressure control rate among people with hypertension is less than 25%. Studies of telemedicine as a means of providing care to hypertensive patients have shown that this approach is effective in lowering blood pressure. Major design flaws and high operating costs, however, have hindered its adoption by physicians and patients. OBJECTIVES: In the present commentary, the field of telemedicine, as it pertains to hypertension management, is reviewed, and the investigators’ experiences in developing a new telemedicine system are outlined. METHODS: An applied qualitative case study approach was used to determine the information needs for the design of a telemedicine system. Opinions were elicited separately from type 2 diabetic patients with hypertension (n=24) and family practitioners in active clinical practice (n=18). RESULTS: Physician and patient focus group meetings provided key information that led to changes in the prototype system. The low level of computer and Internet use by patients in everyday life and by physicians in practice-related activities precluded their inclusion in the design of the system for information retrieval and receiving clinical alerts. For patients, the mobile phone appeared to be an acceptable alternative. The only practical, automated means to disseminate reports and alerts to physicians was by fax, which was the most universally available device in a doctor’s office. CONCLUSION: This tightly focused qualitative study led to the development of design principles for a prototype system, increasing the likelihood of user acceptance and improving its effectiveness. PMID:17534469

Adoption of electronic health records: a qualitative study of academic and private physicians and health administrators.

PubMed

Grabenbauer, L; Fraser, R; McClay, J; Woelfl, N; Thompson, C B; Cambell, J; Windle, J

2011-01-01

Less than 20% of hospitals in the US have an electronic health record (EHR). In this qualitative study, we examine the perspectives of both academic and private physicians and administrators as stakeholders, and their alignment, to explore their perspectives on the use of technology in the clinical environment. Focus groups were conducted with 74 participants who were asked a series of open-ended questions. Grounded theory was used to analyze the transcribed data and build convergent themes. The relevance and importance of themes was constructed by examining frequency, convergence, and intensity. A model was proposed that represents the interactions between themes. Six major themes emerged, which include the impact of EHR systems on workflow, patient care, communication, research/outcomes/billing, education/learning, and institutional culture. Academic and private physicians were confident of the future benefits of EHR systems, yet cautious about the current implementations of EHR, and its impact on interactions with other members of the healthcare team and with patients, and the amount of time necessary to use EHR's. Private physicians differed on education and were uneasy about the steep learning curve necessary for use of new systems. In contrast to physicians, university and hospital administrators are optimistic, and value the availability of data for use in reporting. The results of our study indicate that both private and academic physicians concur on the need for features that maintain and enhance the relationship with the patient and the healthcare team. Resistance to adoption is related to insufficient functionality and its potential negative impact on patient care. Integration of data collection into clinical workflows must consider the unexpected costs of data acquisition.

Accurate assessment of adherence: self-report and clinician report vs electronic monitoring of nebulizers.

PubMed

Daniels, Tracey; Goodacre, Lynne; Sutton, Chris; Pollard, Kim; Conway, Steven; Peckham, Daniel

2011-08-01

People with cystic fibrosis have a high treatment burden. While uncertainty remains about individual patient level of adherence to medication, treatment regimens are difficult to tailor, and interventions are difficult to evaluate. Self- and clinician-reported measures are routinely used despite criticism that they overestimate adherence. This study assessed agreement between rates of adherence to prescribed nebulizer treatments when measured by self-report, clinician report, and electronic monitoring suitable for long-term use. Seventy-eight adults with cystic fibrosis were questioned about their adherence to prescribed nebulizer treatments over the previous 3 months. Self-report was compared with clinician report and stored adherence data downloaded from the I-Neb nebulizer system. Adherence measures were expressed as a percentage of the prescribed regimen, bias was estimated by the paired difference in mean (95% CI) patient and clinician reported and actual adherence. Agreement between adherence measures was calculated using intraclass correlation coefficients (95% CI), and disagreements for individuals were displayed using Bland-Altman plots. Patient-identified prescriptions matched the medical record prescription. Median self-reported adherence was 80% (interquartile range, 60%-95%), whereas median adherence measured by nebulizer download was 36% (interquartile range, 5%-84.5%). Nine participants overmedicated and underreported adherence. Median clinician report ranged from 50% to 60%, depending on profession. Extensive discrepancies between self-report and clinician report compared with nebulizer download were identified for individuals. Self- and clinician-reporting of adherence does not provide accurate measurement of adherence when compared with electronic monitoring. Using inaccurate measures has implications for treatment burden, clinician prescribing practices, cost, and accuracy of trial data.

Living with cancer: a qualitative report of the experiences of leukaemia patients in Lagos, Nigeria.

PubMed

Adejoh, Samuel Ojima; Temilola, Olusegun Moses; Olayiwola, Bolutife

2013-12-01

The study examined the qualitative, cognitive and psychosocial experiences of those living with leukaemia undergoing treatment at a teaching hospital. Twenty respondents who consented to participate were purposively selected from the cancer patients with leukaemia receiving treatment in the said teaching hospital. The in-depth interview method was used to collect data. The data was analysed using manual content analysis. Data showed that patients lack basic knowledge about leukaemia and had no beliefs regarding leukaemia. Some patients believed in God and a medical breakthrough for a cure, while for some, the hope of living was not certain. The ill-health condition had brought about financial predicament to both patients and family members and has limited their productivity in terms of income-generating activities. Good interpersonal relationships and support from their care providers aided their compliance to treatment regime and provided hope for living positively with their condition. The study concludes that there is a need to educate the patients on the causes of their condition. Financial supports should be rendered to those living with leukaemia, while health care providers should be encouraged to continue to maintain good interpersonal relationships with their patients.

Medication adherence perspectives in haemodialysis patients: a qualitative study.

PubMed

Ghimire, Saurav; Castelino, Ronald L; Jose, Matthew D; Zaidi, Syed Tabish R

2017-05-22

End-stage kidney disease patients undergoing haemodialysis are prescribed with multiple complex regimens and are predisposed to high risk of medication nonadherence. The aims of this study were to explore factors associated with medication adherence, and, to examine the differential perspectives on medication-taking behaviour shown by adherent and nonadherent haemodialysis patients. A qualitative exploratory design was used. One-on-one semi-structured interviews were conducted with 30 haemodialysis patients at the outpatient dialysis facility in Hobart, Australia. Patient self-reported adherence was measured using 4-item Morisky Green Levine scale. Interview transcripts were thematically analysed and mapped against the World Health Organization (WHO) determinants of medication adherence. Participants were 44-84 years old, and were prescribed with 4-19 medications daily. More than half of the participants were nonadherent to their medications based on self-reported measure (56.7%, n = 17). Themes mapped against WHO adherence model comprised of patient-related (knowledge, awareness, attitude, self-efficacy, action control, and facilitation); health system/ healthcare team related (quality of interaction, and mistrust and collateral arrangements); therapy-related (physical characteristics of medicines, packaging, and side effects); condition-related (symptom severity); and social/ economic factors (access to medicines, and relative affordability). Patients expressed a number of concerns that led to nonadherence behaviour. Many of the issues identified were patient-related and potentially modifiable by using psycho-educational or cognitive-behavioural interventions. Healthcare professionals should be more vigilant towards identifying these concerns to address adherence issues. Future research should be aimed at understanding healthcare professionals' perceptions and practices of assessing medication adherence in dialysis patients that may guide intervention to

Provider perceptions of the value of same-day, electronic patient-reported measures for use in clinical HIV care

PubMed Central

Fredericksen, RJ; Tufano, J; Ralston, J; McReynolds, J; Stewart, M; Lober, WB; Mayer, K; Mathews, WC; Mugavero, M; Crane, PK; Crane, HM

2016-01-01

Strong evidence suggests that patient-reported outcomes (PROs) aid in managing chronic conditions, reduce omissions in care, and improve patient-provider communication. However, provider acceptability of PROs and their use in clinical HIV care is not well known. We interviewed providers (n=27) from four geographically diverse HIV and community care clinics in the U.S. that have integrated PROs into routine HIV care, querying perceived value, challenges, and use of PRO data. Perceived benefits included the ability of PROs to identify less-observable behaviors and conditions, particularly suicidal ideation, depression, and substance use; usefulness in agenda-setting prior to a visit; and reduction of social desirability bias in patient-provider communication. Challenges included initial flow integration issues and ease of interpretation of PRO feedback. Providers value same-day, electronic patient-reported measures for use in clinical HIV care with the condition that PROs are 1) tailored to be the most clinically relevant to their population; 2) well-integrated into clinic flow; 3) easy to interpret, highlighting chief patient concerns and changes over time. PMID:27237187

Methodology or method? A critical review of qualitative case study reports.

PubMed

Hyett, Nerida; Kenny, Amanda; Dickson-Swift, Virginia

2014-01-01

Despite on-going debate about credibility, and reported limitations in comparison to other approaches, case study is an increasingly popular approach among qualitative researchers. We critically analysed the methodological descriptions of published case studies. Three high-impact qualitative methods journals were searched to locate case studies published in the past 5 years; 34 were selected for analysis. Articles were categorized as health and health services (n=12), social sciences and anthropology (n=7), or methods (n=15) case studies. The articles were reviewed using an adapted version of established criteria to determine whether adequate methodological justification was present, and if study aims, methods, and reported findings were consistent with a qualitative case study approach. Findings were grouped into five themes outlining key methodological issues: case study methodology or method, case of something particular and case selection, contextually bound case study, researcher and case interactions and triangulation, and study design inconsistent with methodology reported. Improved reporting of case studies by qualitative researchers will advance the methodology for the benefit of researchers and practitioners.

Methodology or method? A critical review of qualitative case study reports

PubMed Central

Hyett, Nerida; Kenny, Amanda; Dickson-Swift, Virginia

2014-01-01

Despite on-going debate about credibility, and reported limitations in comparison to other approaches, case study is an increasingly popular approach among qualitative researchers. We critically analysed the methodological descriptions of published case studies. Three high-impact qualitative methods journals were searched to locate case studies published in the past 5 years; 34 were selected for analysis. Articles were categorized as health and health services (n=12), social sciences and anthropology (n=7), or methods (n=15) case studies. The articles were reviewed using an adapted version of established criteria to determine whether adequate methodological justification was present, and if study aims, methods, and reported findings were consistent with a qualitative case study approach. Findings were grouped into five themes outlining key methodological issues: case study methodology or method, case of something particular and case selection, contextually bound case study, researcher and case interactions and triangulation, and study design inconsistent with methodology reported. Improved reporting of case studies by qualitative researchers will advance the methodology for the benefit of researchers and practitioners. PMID:24809980

Patients’ experiences of chronic non-malignant musculoskeletal pain: a qualitative systematic review

PubMed Central

Toye, Francine; Seers, Kate; Allcock, Nick; Briggs, Michelle; Carr, Eloise; Andrews, JoyAnn; Barker, Karen

2013-01-01

Background Musculoskeletal (MSK) pain is one of the most predominant types of pain and accounts for a large portion of the primary care workload. Aim To systematically review and integrate the findings of qualitative research to increase understanding of patients’ experiences of chronic non-malignant MSK pain. Design and setting Synthesis of qualitative research using meta-ethnography using six electronic databases up until February 2012 (Medline, Embase, Cinahl, Psychinfo, Amed and HMIC). Method Databases were searched from their inception until February 2012, supplemented by hand-searching contents lists of specific journals for 2001–2011 and citation tracking. Full published reports of qualitative studies exploring adults’ own experience of chronic non-malignant MSK pain were eligible for inclusion. Results Out of 24 992 titles, 676 abstracts, and 321 full texts were screened, 77 papers reporting 60 individual studies were included. A new concept of pain as an adversarial struggle emerged. This adversarial struggle was to: 1) affirm self; 2) reconstruct self in time; 3) construct an explanation for suffering; 4) negotiate the healthcare system; and 5) prove legitimacy. However, despite this struggle there is also a sense for some patients of 6) moving forward alongside pain. Conclusions This review provides a theoretical underpinning for improving patient experience and facilitating a therapeutic collaborative partnership. A conceptual model is presented, which offers opportunities for improvement by involving patients, showing them their pain is understood, and forming the basis to help patients move forward alongside their pain. PMID:24351499

Exploring the implementation of an electronic record into a maternity unit: a qualitative study using Normalisation Process Theory.

PubMed

Scantlebury, Arabella; Sheard, Laura; Watt, Ian; Cairns, Paul; Wright, John; Adamson, Joy

2017-01-07

To explore the benefits, barriers and disadvantages of implementing an electronic record system (ERS). The extent that the system has become 'normalised' into routine practice was also explored. Qualitative semi-structured interviews were conducted with 19 members of NHS staff who represented a variety of staff groups (doctors, midwives of different grades, health care assistants) and wards within a maternity unit at a NHS teaching hospital. Interviews were conducted during the first year of the phased implementation of ERS and were analysed thematically. The four mechanisms of Normalisation Process Theory (NPT) (coherence, cognitive participation, collective action and reflexive monitoring) were adapted for use within the study and provided a theoretical framework to interpret the study's findings. Coherence (participants' understanding of why the ERS has been implemented) was mixed - whilst those involved in ERS implementation anticipated advantages such as improved access to information; the majority were unclear why the ERS was introduced. Participants' willingness to engage with and invest time into the ERS (cognitive participation) depended on the amount of training and support they received and their willingness to change from paper to electronic records. Collective action (the extent the ERS was used) may be influenced by whether participants perceived there to be benefits associated with the system. Whilst some individuals reported benefits such as improved legibility of records, others felt benefits were yet to emerge. The parallel use of paper and the lack of integration of electronic systems within and between the trust and other healthcare organisations hindered ERS use. When appraising the ERS (reflexive monitoring) participants perceived the system to negatively impact the patient-clinician relationship, time and patient safety. Despite expectations that the ERS would have a number of advantages, its implementation was perceived to have a range of

Design of an eMonitor system to transport electronic patient care report (ePCR) information in unstable MobileIP wireless environment.

PubMed

Giovanni, Mazza G; Shenvi, Rohit; Battles, Marcie; Orthner, Helmuth F

2008-11-06

The eMonitor is a component of the ePatient system; a prototype system used by emergency medical services (EMS) personnel in the field to record and transmits electronic patient care report (ePCR) information interactively. The eMonitor component allows each Mobile Data Terminal (MDT) on an unreliable Cisco MobileIP wireless network to securely send and received XML messages used to update patient information to and from the MDT before, during and after the transport of a patient.

Consumers' Perceptions of Patient-Accessible Electronic Medical Records

PubMed Central

Vaughon, Wendy L; Czaja, Sara J; Levy, Joslyn; Rockoff, Maxine L

2013-01-01

Background Electronic health information (eHealth) tools for patients, including patient-accessible electronic medical records (patient portals), are proliferating in health care delivery systems nationally. However, there has been very limited study of the perceived utility and functionality of portals, as well as limited assessment of these systems by vulnerable (low education level, racial/ethnic minority) consumers. Objective The objective of the study was to identify vulnerable consumers’ response to patient portals, their perceived utility and value, as well as their reactions to specific portal functions. Methods This qualitative study used 4 focus groups with 28 low education level, English-speaking consumers in June and July 2010, in New York City. Results Participants included 10 males and 18 females, ranging in age from 21-63 years; 19 non-Hispanic black, 7 Hispanic, 1 non-Hispanic White and 1 Other. None of the participants had higher than a high school level education, and 13 had less than a high school education. All participants had experience with computers and 26 used the Internet. Major themes were enhanced consumer engagement/patient empowerment, extending the doctor’s visit/enhancing communication with health care providers, literacy and health literacy factors, improved prevention and health maintenance, and privacy and security concerns. Consumers were also asked to comment on a number of key portal features. Consumers were most positive about features that increased convenience, such as making appointments and refilling prescriptions. Consumers raised concerns about a number of potential barriers to usage, such as complex language, complex visual layouts, and poor usability features. Conclusions Most consumers were enthusiastic about patient portals and perceived that they had great utility and value. Study findings suggest that for patient portals to be effective for all consumers, portals must be designed to be easy to read, visually

HIV Care Providers' Attitudes regarding Mobile Phone Applications and Web-Based Dashboards to support Patient Self-Management and Care Coordination: Results from a Qualitative Feasibility Study.

PubMed

Swendeman, Dallas; Farmer, Shu; Mindry, Deborah; Lee, Sung-Jae; Medich, Melissa

2016-10-01

In-depth qualitative interviews were conducted with healthcare providers (HCPs) from five HIV medical care coordination teams in a large Los Angeles County HIV clinic, including physicians, nurses, and psychosocial services providers. HCPs reported on the potential utility, acceptability, and barriers for patient self-monitoring and notifications via mobile phones, and web-based dashboards for HCPs. Potential benefits included: 1) enhancing patient engagement, motivation, adherence, and self-management; and 2) improving provider-patient relationships and HCP care coordination. Newly diagnosed and patients with co-morbidities were highest priorities for mobile application support. Facilitators included universal mobile phone ownership and use of smartphones or text messaging. Patient-level barriers included concerns about low motivation and financial instability for consistent use by some patients. Organizational barriers, cited primarily by physicians, included concerns about privacy protections, easy dashboard access, non-integrated electronic records, and competing burdens in limited appointment times. Psychosocial services providers were most supportive of the proposed mobile tools.

40 CFR 233.39 - Electronic reporting.

Code of Federal Regulations, 2014 CFR

2014-07-01

... 40 Protection of Environment 25 2014-07-01 2014-07-01 false Electronic reporting. 233.39 Section... PROGRAM REGULATIONS Program Operation § 233.39 Electronic reporting. States that choose to receive electronic documents must satisfy the requirements of 40 CFR Part 3—(Electronic reporting) in their state...

40 CFR 233.39 - Electronic reporting.

Code of Federal Regulations, 2012 CFR

2012-07-01

... 40 Protection of Environment 26 2012-07-01 2011-07-01 true Electronic reporting. 233.39 Section... PROGRAM REGULATIONS Program Operation § 233.39 Electronic reporting. States that choose to receive electronic documents must satisfy the requirements of 40 CFR Part 3—(Electronic reporting) in their state...

40 CFR 233.39 - Electronic reporting.

Code of Federal Regulations, 2010 CFR

2010-07-01

... 40 Protection of Environment 24 2010-07-01 2010-07-01 false Electronic reporting. 233.39 Section... PROGRAM REGULATIONS Program Operation § 233.39 Electronic reporting. States that choose to receive electronic documents must satisfy the requirements of 40 CFR Part 3—(Electronic reporting) in their state...

40 CFR 233.39 - Electronic reporting.

Code of Federal Regulations, 2011 CFR

2011-07-01

... 40 Protection of Environment 25 2011-07-01 2011-07-01 false Electronic reporting. 233.39 Section... PROGRAM REGULATIONS Program Operation § 233.39 Electronic reporting. States that choose to receive electronic documents must satisfy the requirements of 40 CFR Part 3—(Electronic reporting) in their state...

40 CFR 233.39 - Electronic reporting.

Code of Federal Regulations, 2013 CFR

2013-07-01

... 40 Protection of Environment 26 2013-07-01 2013-07-01 false Electronic reporting. 233.39 Section... PROGRAM REGULATIONS Program Operation § 233.39 Electronic reporting. States that choose to receive electronic documents must satisfy the requirements of 40 CFR Part 3—(Electronic reporting) in their state...

Synthesis of quantitative and qualitative research: an example using Critical Interpretive Synthesis.

PubMed

Flemming, Kate

2010-01-01

This paper is a report of a Critical Interpretive Synthesis to synthesize quantitative research, in the form of an effectiveness review and a guideline, with qualitative research to examine the use of morphine to treat cancer-related pain. Critical Interpretive Synthesis is a new method of reviewing, developed from meta-ethnography, which integrates systematic review methodology with a qualitative tradition of enquiry. It has not previously been used specifically to synthesize effectiveness and qualitative literature. Data sources. An existing systematic review of quantitative research and a guideline examining the effectiveness of oral morphine to treat cancer pain were identified. Electronic searches of Medline, CINAHL, Embase, PsychINFO, Health Management Information Consortium database and the Social Science Citation Index to identify qualitative research were carried out in May 2008. Qualitative research papers reporting on the use of morphine to treat cancer pain were identified. The findings of the effectiveness research were used as a framework to guide the translation of findings from qualitative research using an integrative grid. A secondary translation of findings from the qualitative research, not specifically mapped to the effectiveness literature, was guided by the framework. Nineteen qualitative papers were synthesized with the quantitative effectiveness literature, producing 14 synthetic constructs. These were developed into four synthesizing arguments which drew on patients', carers' and healthcare professionals' interpretations of the meaning and context of the use of morphine to treat cancer pain. Critical Interpretive Synthesis can be adapted to synthesize reviews of quantitative research into effectiveness with qualitative research and fits into an existing typology of approaches to synthesizing qualitative and quantitative research.

40 CFR 51.286 - Electronic reporting.

Code of Federal Regulations, 2011 CFR

2011-07-01

... 40 Protection of Environment 2 2011-07-01 2011-07-01 false Electronic reporting. 51.286 Section 51... Requirements § 51.286 Electronic reporting. States that wish to receive electronic documents must revise the State Implementation Plan to satisfy the requirements of 40 CFR Part 3—(Electronic reporting). [70 FR...

40 CFR 51.286 - Electronic reporting.

Code of Federal Regulations, 2012 CFR

2012-07-01

... 40 Protection of Environment 2 2012-07-01 2012-07-01 false Electronic reporting. 51.286 Section 51... Requirements § 51.286 Electronic reporting. States that wish to receive electronic documents must revise the State Implementation Plan to satisfy the requirements of 40 CFR Part 3—(Electronic reporting). [70 FR...

40 CFR 51.286 - Electronic reporting.

Code of Federal Regulations, 2010 CFR

2010-07-01

... 40 Protection of Environment 2 2010-07-01 2010-07-01 false Electronic reporting. 51.286 Section 51... Requirements § 51.286 Electronic reporting. States that wish to receive electronic documents must revise the State Implementation Plan to satisfy the requirements of 40 CFR Part 3—(Electronic reporting). [70 FR...

40 CFR 51.286 - Electronic reporting.

Code of Federal Regulations, 2013 CFR

2013-07-01

... 40 Protection of Environment 2 2013-07-01 2013-07-01 false Electronic reporting. 51.286 Section 51... Requirements § 51.286 Electronic reporting. States that wish to receive electronic documents must revise the State Implementation Plan to satisfy the requirements of 40 CFR Part 3—(Electronic reporting). [70 FR...

40 CFR 51.286 - Electronic reporting.

Code of Federal Regulations, 2014 CFR

2014-07-01

... 40 Protection of Environment 2 2014-07-01 2014-07-01 false Electronic reporting. 51.286 Section 51... Requirements § 51.286 Electronic reporting. States that wish to receive electronic documents must revise the State Implementation Plan to satisfy the requirements of 40 CFR Part 3—(Electronic reporting). [70 FR...

Emergency Medicine Resident Physicians’ Perceptions of Electronic Documentation and Workflow

PubMed Central

Neri, P.M.; Redden, L.; Poole, S.; Pozner, C.N.; Horsky, J.; Raja, A.S.; Poon, E.; Schiff, G.

2015-01-01

Summary Objective To understand emergency department (ED) physicians’ use of electronic documentation in order to identify usability and workflow considerations for the design of future ED information system (EDIS) physician documentation modules. Methods We invited emergency medicine resident physicians to participate in a mixed methods study using task analysis and qualitative interviews. Participants completed a simulated, standardized patient encounter in a medical simulation center while documenting in the test environment of a currently used EDIS. We recorded the time on task, type and sequence of tasks performed by the participants (including tasks performed in parallel). We then conducted semi-structured interviews with each participant. We analyzed these qualitative data using the constant comparative method to generate themes. Results Eight resident physicians participated. The simulation session averaged 17 minutes and participants spent 11 minutes on average on tasks that included electronic documentation. Participants performed tasks in parallel, such as history taking and electronic documentation. Five of the 8 participants performed a similar workflow sequence during the first part of the session while the remaining three used different workflows. Three themes characterize electronic documentation: (1) physicians report that location and timing of documentation varies based on patient acuity and workload, (2) physicians report a need for features that support improved efficiency; and (3) physicians like viewing available patient data but struggle with integration of the EDIS with other information sources. Conclusion We confirmed that physicians spend much of their time on documentation (65%) during an ED patient visit. Further, we found that resident physicians did not all use the same workflow and approach even when presented with an identical standardized patient scenario. Future EHR design should consider these varied workflows while trying to

Understanding the patient experience of health care-associated infection: A qualitative systematic review.

PubMed

Currie, Kay; Melone, Lynn; Stewart, Sally; King, Caroline; Holopainen, Arja; Clark, Alex M; Reilly, Jacqui

2018-01-30

The global burden of health care-associated infection (HAI) is well recognized; what is less well known is the impact HAI has on patients. To develop acceptable, effective interventions, greater understanding of patients' experience of HAI is needed. This qualitative systematic review sought to explore adult patients' experiences of common HAIs. Five databases were searched. Search terms were combined for qualitative research, HAI terms, and patient experience. Study selection was conducted by 2 researchers using prespecified criteria. Critical Appraisal Skills Programme quality appraisal tools were used. Internationally recognized Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were applied. The Noblit and Hare (1988) approach to meta-synthesis was adopted. Seventeen studies (2001-2017) from 5 countries addressing 5 common types of HAI met the inclusion criteria. Four interrelated themes emerged: the continuum of physical and emotional responses, experiencing the response of health care professionals, adapting to life with an HAI, and the complex cultural context of HAI. The impact of different HAIs may vary; however, there are many similarities in the experience recounted by patients. The biosociocultural context of contagion was graphically expressed, with potential impact on social relationships and professional interactions highlighted. Further research to investigate contemporary patient experience in an era of antimicrobial resistance is warranted. Copyright © 2017 Association for Professionals in Infection Control and Epidemiology, Inc. Published by Elsevier Inc. All rights reserved.

Qualitative evaluation of pretreatment patient concerns in orthodontics.

PubMed

Twigge, Eugene; Roberts, Rachel M; Jamieson, Lisa; Dreyer, Craig W; Sampson, Wayne J

2016-07-01

A discrepancy exists between objective and subjective measures of orthodontic treatment need, highlighting the importance of patients' perceptions. Limited qualitative information is available regarding patients' perceptions and orthodontic concerns. For the first time, patient facial images and qualitative methodology were used to assess patients' orthodontic concerns, which are incorporated into and are important in treatment planning and consent. An interview-based, cross-sectional study of adolescent patients eligible to receive orthodontic treatment in a public dental hospital was conducted with 105 adolescents (42 boys, 63 girls) aged between 12 and 17 years. Each patient's face was video recorded, and 3 images were selected from each recording to assess the patient's orthodontic concerns. The initial chief concerns were compared with concerns articulated after the patients assessed their facial images. In addition, patient concerns were compared with occlusal features visible on smiling using the Dental Aesthetic Index and patient study casts. For 37% of the adolescent patients, smiling images helped to identify additional concerns. For 87%, their smiling images helped them to describe their concerns in more detail. In addition, a few patients did not articulate any concern about features measurable on the Dental Aesthetic Index that were visible on smiling. Showing adolescent patients images of their face and smile helped them to identify and better describe their concerns. Adolescents are not always overly concerned about visible and quantifiable malocclusion features. This might influence orthodontic treatment planning and consent. Copyright © 2016 American Association of Orthodontists. Published by Elsevier Inc. All rights reserved.

GPs' management strategies for patients with insomnia: a survey and qualitative interview study.

PubMed

Everitt, Hazel; McDermott, Lisa; Leydon, Geraldine; Yules, Harvey; Baldwin, David; Little, Paul

2014-02-01

Patients frequently experience sleep problems and present to primary care. However, information is limited regarding the management strategies that GPs employ. To gain an understanding of current GP management strategies for insomnia. A postal questionnaire survey and qualitative interviews with GPs in the south of England. A postal survey of 296 GPs and qualitative interviews were carried out with 23 of the GPs. The survey response rate was 56% (166/296). GPs look for signs of depression and anxiety in patients and if present treat these first. 'Sleep hygiene' advice is provided by 88% (147/166) of GPs but often seems insufficient and they feel under pressure to prescribe. Benzodiazepines and Z drugs are prescribed, often reluctantly, for short periods, because of known problems with dependence and tolerance. Many GPs prescribe low-dose amitriptyline for insomnia although it is not licensed for this indication. For insomnia 95% (157/166) of survey responders 'ever prescribe' amitriptyline, with 31% (52/166) stating they do so commonly. Most GPs perceived amitriptyline to be effective and a longer-term option for those with ongoing sleep problems. GPs report a lack of knowledge and confidence in the provision and use of psychological therapies, such as cognitive behavioural therapy (CBT), in the management of insomnia. GPs often find 'sleep hygiene' advice is insufficient for managing insomnia and report frequently prescribing medication, including amitriptyline (off licence), which is often based on perceived patient pressure for a prescription. Patients are rarely offered psychological therapies such as CBT for insomnia, despite evidence suggesting its potential effectiveness.

Schizophrenia Patient or Spiritually Advanced Personality? A Qualitative Case Analysis.

PubMed

Bhargav, Hemant; Jagannathan, Aarti; Raghuram, Nagarathna; Srinivasan, T M; Gangadhar, Bangalore N

2015-10-01

Many aspects of spiritual experience are similar in form and content to symptoms of psychosis. Both spiritually advanced people and patients suffering from psychopathology experience alterations in their sense of 'self.' Psychotic experiences originate from derangement of the personality, whereas spiritual experiences involve systematic thinning out of the selfish ego, allowing individual consciousness to merge into universal consciousness. Documented instances and case studies suggest possible confusion between the spiritually advanced and schizophrenia patients. Clinical practice contains no clear guidelines on how to distinguish them. Here we use a case presentation to help tabulate clinically useful points distinguishing spiritually advanced persons from schizophrenia patients. A 34-year-old unmarried male reported to our clinic with four main complaints: lack of sense of self since childhood; repeated thoughts questioning whether he existed or not; social withdrawal; and inability to continue in any occupation. Qualitative case analysis and discussions using descriptions from ancient texts and modern psychology led to the diagnosis of schizophrenia rather than spiritual advancement.

Acceptability of an Electronic Self Report Assessment Program for Patients with Cancer

PubMed Central

Wolpin, S.; Berry, D.; Austin-Seymour, M.; Bush, N.; Fann, J.R.; Halpenny, B.; Lober, W.; McCorkle, Ruth

2010-01-01

Background Eliciting symptom and quality of life information from patients is an important component of medical and nursing care processes. Traditionally, this information has been collected with paper and pencil. However, this approach presents several barriers, including delays in receiving information, difficulty integrating responses with electronic records and the time required to manual score questionnaires for measurement purposes. One solution that addresses many of these barriers is the adoption of computerized screening for symptom and quality of life information. Objective This research explored the acceptability of asking symptom and quality of life questions using the Electronic Self Report Assessment – Cancer program on wireless laptops equipped with touch screen format. Methods Acceptability data was explored with respect to whether any differences may be attributed to demographics, and symptom and quality of life levels such as depression, cognitive and emotional functioning. This evaluation utilized descriptive and univariate statistics to examine data from 342 participants from the ongoing ESRA-C randomized clinical trial. Research participants for the ESRA-C study were recruited from the Seattle Cancer Care Alliance (SCCA), a consortium between the University of Washington Medical Center, Fred Hutchinson Cancer Research Center, and Children’s Hospital and Regional Medical Center in Seattle, Washington. Results The sample consisted of 342 adult participants who completed both baseline and follow-up survey sessions. Medical Oncology represented the largest recruitment group (45.3%), followed by Stem Cell Transplant (34.5%) and Radiation Oncology (20.2%). The primary finding was that patients were generally able to utilize ESRA-C quickly and without difficulty in a real-world clinical setting and that they were overall quite satisfied with the ESRA-C program. Significant differences were found in several acceptability areas with respect to

Toward electronic health recording: evaluation of electronic patient reported outcome measures (e-PROMs) system for remote monitoring of early systemic lupus patients.

PubMed

El Miedany, Y; El Gaafary, M; El Aroussy, Nadia; Bahlas, S; Hegazi, M; Palmer, D; Youssef, S

2017-11-01

The study aimed to assess the value of evaluation of electronic patient reported outcome measures (e-PROMs) in the assessment and management of SLE disease activity flares, its association with adherence to therapy as well as organ damage. A randomized, controlled crossover study was carried out over a 24-month duration. One hundred forty-seven SLE patients meeting the revised American College of Rheumatology (ACR) criteria were enrolled. Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) was used to assess disease activity, whereas organ damage was scored using the Systemic Lupus International Collaborating Clinics (SLICC)/ACR Damage Index. In the first 12 months, the patients were assessed every 3 months. At 12 months, the patients were randomized into a cohort of 73 patients who continued their care in the same style and 74 patients who completed an online e-PROMs questionnaire on monthly basis for another 12-month period. The data captured were then retrospectively analyzed at the end of the 24-month study period. At the end of the first year of the study, the mean SLEDAI and SDI scores were 8.72 (6.1) and 1.9 (2.2). At the end of the second year, the mean SLEDAI and SDI scores in the e-PROMs cohort were 3.1 (2.6) and 1.2 (1.3), whereas in the control group, the scores were 7.63 (6.7) and 1.8 (2.3), respectively (p < 0.01). Adjusting for possible confounding variables, the number of flares, regardless of their severity, was associated with damage accrual (OR 2.03, 95% CI 1.34 to 2.83, p < 0.001). Adherence to therapy was significantly (p < 0.1) higher in the e-PROMs group. e-PROMs was equivalent to PROMs paper format and has a potential disease-modifying effect as it facilitated close monitoring of disease activity with an option of management escalation whenever indicated.

Improving Patient Safety With the Military Electronic Health Record

DTIC Science & Technology

2005-01-01

Consolidated Health Informatics (CHI) project, one of the 24 electronic government ( eGov ) Internet- based technology initiatives supporting the president’s...United States Department of Defense (DoD) has transformed health care delivery in its use of information technology to automate patient data...use throughout the Federal Government . The importance of standards in EHR systems was further recognized in an IOM report, which stated, “Electronic

Patient beliefs and attitudes to taking statins: systematic review of qualitative studies.

PubMed

Ju, Angela; Hanson, Camilla S; Banks, Emily; Korda, Rosemary; Craig, Jonathan C; Usherwood, Tim; MacDonald, Peter; Tong, Allison

2018-06-01

Statins are effective in preventing cardiovascular disease (CVD) events and are recommended for at-risk individuals but estimated adherence rates are low. To describe patients' perspectives, experiences, and attitudes towards taking statins. Systematic review of qualitative studies reporting perspectives of patients on statins. PsycINFO, CINAHL, Embase, MEDLINE, and PhD dissertations from inception to 6 October 2016 were searched for qualitative studies on adult patients' perspectives on statins. All text and participant quotations were extracted from each article and analysed by thematic synthesis. Thirty-two studies involving 888 participants aged 22-93 years across eight countries were included. Seven themes were identified: confidence in prevention (trust in efficacy, minimising long-term catastrophic CVD, taking control, easing anxiety about high cholesterol); routinising into daily life; questioning utility (imperceptible benefits, uncertainties about pharmacological mechanisms); medical distrust (scepticism about overprescribing, pressure to start therapy); threatening health (competing priorities and risks, debilitating side effects, toxicity to body); signifying sickness (fear of perpetual dependence, losing the battle); and financial strain. An expectation that statins could prevent CVD and being able to integrate the statin regimen in daily life facilitated acceptance of statins among patients. However, avoiding the 'sick' identity and prolonged dependence on medications, uncertainties about the pharmacological mechanisms, risks to health, side effects, costs, and scepticism about clinicians' motives for prescribing statins were barriers to uptake. Shared decision making that addresses the risks, reasons for prescribing, patient priorities, and implementing strategies to minimise lifestyle intrusion and manage side effects may improve patient satisfaction and continuation of statins. © British Journal of General Practice 2018.

Patient adherence to tuberculosis treatment: a systematic review of qualitative research.

PubMed

Munro, Salla A; Lewin, Simon A; Smith, Helen J; Engel, Mark E; Fretheim, Atle; Volmink, Jimmy

2007-07-24

Tuberculosis (TB) is a major contributor to the global burden of disease and has received considerable attention in recent years, particularly in low- and middle-income countries where it is closely associated with HIV/AIDS. Poor adherence to treatment is common despite various interventions aimed at improving treatment completion. Lack of a comprehensive and holistic understanding of barriers to and facilitators of, treatment adherence is currently a major obstacle to finding effective solutions. The aim of this systematic review of qualitative studies was to understand the factors considered important by patients, caregivers and health care providers in contributing to TB medication adherence. We searched 19 electronic databases (1966-February 2005) for qualitative studies on patients', caregivers', or health care providers' perceptions of adherence to preventive or curative TB treatment with the free text terms "Tuberculosis AND (adherence OR compliance OR concordance)". We supplemented our search with citation searches and by consulting experts. For included studies, study quality was assessed using a predetermined checklist and data were extracted independently onto a standard form. We then followed Noblit and Hare's method of meta-ethnography to synthesize the findings, using both reciprocal translation and line-of-argument synthesis. We screened 7,814 citations and selected 44 articles that met the prespecified inclusion criteria. The synthesis offers an overview of qualitative evidence derived from these multiple international studies. We identified eight major themes across the studies: organisation of treatment and care; interpretations of illness and wellness; the financial burden of treatment; knowledge, attitudes, and beliefs about treatment; law and immigration; personal characteristics and adherence behaviour; side effects; and family, community, and household support. Our interpretation of the themes across all studies produced a line

Patient Use of the Electronic Communication Portal in Management of Type 2 Diabetes.

PubMed

Peremislov, Diana

2017-09-01

High incidence and prevalence of type 2 diabetes require urgent attention to the management of this chronic disease. The purpose of this study was to explore electronic communication (e-communication) between patients with type 2 diabetes and their providers within the patient portal. Qualitative design with conventional content analysis techniques was used. A purposive random sample of 90 electronic medical record charts of patient-portal users with type 2 diabetes was subjected to a retrospective review. The sample mainly consisted of patients between the ages of 50 and 70 years, who were white, non-Hispanic, and English-speaking. The three major themes that emerged in e-communication via patient portal were inform theme, which was the most frequently identified theme; instruct/request theme, which was mainly used in initiation of e-communication; and the question theme. The patient portal was used primarily for requests by patients and instruction by providers, showing relatively short e-message encounters with a high number of partially completed encounters, frequent lack of resolution, and a low level of involvement of diabetes specialists in e-communication. There is a need to revise healthcare system guidelines on initiation and use of e-communication via patient portal and develop standardized templates to promote diabetes education in type 2 diabetes.

How to Conduct Clinical Qualitative Research on the Patient's Experience

ERIC Educational Resources Information Center

Chenail, Ronald J.

2011-01-01

From a perspective of patient-centered healthcare, exploring patients' (a) preconceptions, (b) treatment experiences, (c) quality of life, (d) satisfaction, (e) illness understandings, and (f) design are all critical components in improving primary health care and research. Utilizing qualitative approaches to discover patients' experiences can…

Cross-Media Electronic Reporting Rule

EPA Pesticide Factsheets

Cross-Media Electronic Reporting Regulation (CROMERR) sets performance-based, technology-neutral standards for systems that states, tribes, and local governments use to receive electronic reports from facilities they regulate under EPA-authorized programs.

Elderly patients' and GPs' perspectives of patient-GP communication concerning polypharmacy: a qualitative interview study.

PubMed

Schöpf, Andrea C; von Hirschhausen, Maike; Farin, Erik; Maun, Andy

2017-12-26

Aim The aim of this study was to explore elderly patients' and general practitioners' (GPs') perceptions of communication about polypharmacy, medication safety and approaches for empowerment. To manage polypharmacy, GPs need to know patients' real medication consumption. However, previous research has shown that patients do not always volunteer all information about their medication regimen, for example, such as the intake of over-the-counter medication or the alteration or discontinuation of prescribed medication. A qualitative interview study including patients of at least 65 years old with polypharmacy (⩾5 medications) and their GPs in a German Primary Healthcare Centre. The transcripts from the semi-structured interviews (n=6 with patients; n=3 with GPs) were analysed using a framework analytical approach. Findings We identified three themes: differing medication plans: causes?; dialogue concerning medication: whose responsibility?; supporting patients' engagement: how? While GPs stated that patients do not always report or might even conceal information, all patients reported that they could speak openly about everything with their GPs. In this context, trust might act as a double-edged sword, as it can promote open communication but also prevent patients from asking questions. Both GPs and patients could name very few ways in which patients could be supported to become more informed and active in communication concerning polypharmacy and medication safety. This study shows that patients' awareness of the significance of their active role in addressing polypharmacy needs to be increased. This includes understanding that trusting the doctor does not preclude asking questions or seeking more information. Thus, interventions which improve patients' communication skills and address specific issues of polypharmacy, particularly in elderly patients, should be designed. GPs might support patients by 'inviting' their contribution.

Patients' perceptions of joint teleconsultations: a qualitative evaluation.

PubMed

Harrison, Robert; Macfarlane, Anne; Murray, Elizabeth; Wallace, Paul

2006-03-01

To determine patient perceptions of joint teleconsultations (JTC), with particular reference to reasons underlying, and factors contributing to, patient satisfaction and dissatisfaction with this mode of health delivery. Telemedicine has been welcomed as one way of improving health-care delivery, by improving patient access to secondary care and specialist services hence widening patient choice, particularly for patients outside major conurbations. However, a recent systematic review found currently available data on patient satisfaction with telemedicine to be methodologically flawed. Qualitative evaluations offer the opportunity to elucidate the details of patient satisfaction with this mode of health-care delivery. Qualitative study using semi-structured interviews. Purposive sample of 28 participants of a major randomized controlled trial (Virtual Outreach study) of JTC conducted in one urban and one rural area in Britain. Joint teleconferenced consultations with the patient, patient's general practitioner (GP), and a hospital specialist. The patient and GP were sited in the local practice, while the hospital specialist was in the hospital outpatient department, and the two parties were connected by an ISDN2 link and video-conferencing software. Patient experiences of JTC, with particular reference to reasons underlying, and factors contributing to, overall satisfaction or dissatisfaction. Two major themes were identified: customer care and doctor-patient interaction. Patients appreciated the customer care aspects of JTC, particularly the enhanced convenience, reduced costs and improved punctuality associated with JTC. However, there were divergent views about the doctor-patient interactions with some patients expressing a sense of alienation arising from the use of technology, and problems with doctor-patient communication. These data add significantly to the existing literature on patient satisfaction with telemedicine, by elucidating the factors underlying

Methodological Reporting in Qualitative, Quantitative, and Mixed Methods Health Services Research Articles

PubMed Central

Wisdom, Jennifer P; Cavaleri, Mary A; Onwuegbuzie, Anthony J; Green, Carla A

2012-01-01

Objectives Methodologically sound mixed methods research can improve our understanding of health services by providing a more comprehensive picture of health services than either method can alone. This study describes the frequency of mixed methods in published health services research and compares the presence of methodological components indicative of rigorous approaches across mixed methods, qualitative, and quantitative articles. Data Sources All empirical articles (n = 1,651) published between 2003 and 2007 from four top-ranked health services journals. Study Design All mixed methods articles (n = 47) and random samples of qualitative and quantitative articles were evaluated to identify reporting of key components indicating rigor for each method, based on accepted standards for evaluating the quality of research reports (e.g., use of p-values in quantitative reports, description of context in qualitative reports, and integration in mixed method reports). We used chi-square tests to evaluate differences between article types for each component. Principal Findings Mixed methods articles comprised 2.85 percent (n = 47) of empirical articles, quantitative articles 90.98 percent (n = 1,502), and qualitative articles 6.18 percent (n = 102). There was a statistically significant difference (χ2(1) = 12.20, p = .0005, Cramer's V = 0.09, odds ratio = 1.49 [95% confidence interval = 1,27, 1.74]) in the proportion of quantitative methodological components present in mixed methods compared to quantitative papers (21.94 versus 47.07 percent, respectively) but no statistically significant difference (χ2(1) = 0.02, p = .89, Cramer's V = 0.01) in the proportion of qualitative methodological components in mixed methods compared to qualitative papers (21.34 versus 25.47 percent, respectively). Conclusion Few published health services research articles use mixed methods. The frequency of key methodological components is variable. Suggestions are provided to increase the

Non cardiopatic and cardiopatic beta thalassemic patients: quantitative and qualitative cardiac iron deposition evaluation with MRI.

PubMed

Macarini, L; Marini, S; Pietrapertosa, A; Scardapane, A; Ettorre, G C

2005-01-01

Cardiomyopathy is one of the major complications of b thalassaemia major as a result of transfusional iron overload. The aim of our study is to evaluate with MR if there is any difference of iron deposition signal intensity (SI) or distribution between non-cardiopathic and cardiopathic thalassaemic patients in order to establish if there is a relationship between cardiopathy and iron deposition. We studied 20 patients affected by b thalassaemia major, of whom 10 cardiopathic and 10 non-cardiopathic, and 10 healthy volunteers as control group. Serum ferritin and left ventricular ejection fraction were calculated in thalassaemic patients. All patients were examined using a 1.5 MR unit with ECG-gated GE cine-MR T2*-weighted, SE T1-weighted and GE T2*-weighted sequences. In all cases, using an adequate ROI, the myocardial and skeletal muscle signal intensity (SI), the myocardial/skeletal muscle signal intensity ratio (SIR) and the SI average of the myocardium and skeletal muscle were calculated for every study group. The qualitative evaluation of iron deposition distribution was independently performed by three radiologists who analyzed the extension, the site and the morphology of iron deposition on the MR images and reported their observations on the basis of a four-level rating scale: 0 (absent), 1 (limited), 2 (partial), 3 (widespread deposition). The result of quantitative and qualitative evaluations were analysed with statistical tests. Cardiac iron deposition was found in 8/10 non-cardiopathic thalassaemic patients and in all cardiopathic thalassaemic patients. We noticed a significant SI difference (p>0.05) between the healthy volunteer control group and the thalassaemic patients with iron deposition, but no significant SI difference in iron deposition between non-cardiopathic and cardiopathic thalassaemic patients in the areas evaluated. The qualitative evaluation revealed a different distribution of iron deposition between the two thalassaemic groups, with

Patient Perceptions of Electronic Medical Record Use by Faculty and Resident Physicians: A Mixed Methods Study.

PubMed

Lee, Wei Wei; Alkureishi, Maria A; Ukabiala, Obioma; Venable, Laura Ruth; Ngooi, Samantha S; Staisiunas, Daina D; Wroblewski, Kristen E; Arora, Vineet M

2016-11-01

While concerns remain regarding Electronic Medical Records (EMR) use impeding doctor-patient communication, resident and faculty patient perspectives post-widespread EMR adoption remain largely unexplored. We aimed to describe patient perspectives of outpatient resident and faculty EMR use and identify positive and negative EMR use examples to promote optimal utilization. This was a prospective mixed-methods study. Internal medicine faculty and resident patients at the University of Chicago's primary care clinic participated in the study. In 2013, one year after EMR implementation, telephone interviews were conducted with patients using open-ended and Likert style questions to elicit positive and negative perceptions of EMR use by physicians. Interview transcripts were analyzed qualitatively to develop a coding classification. Satisfaction with physician EMR use was examined using bivariate statistics. In total, 108 interviews were completed and analyzed. Two major themes were noted: (1) Clinical Functions of EMR and (2) Communication Functions of EMR; as well as six subthemes: (1a) Clinical Care (i.e., clinical efficiency), (1b) Documentation (i.e., proper record keeping and access), (1c) Information Access, (1d) Educational Resource, (2a) Patient Engagement and (2b) Physical Focus (i.e., body positioning). Overall, 85 % (979/1154) of patient perceptions of EMR use were positive, with the majority within the "Clinical Care" subtheme (n = 218). Of negative perceptions, 66 % (115/175) related to the "Communication Functions" theme, and the majority of those related to the "Physical Focus" subtheme (n = 71). The majority of patients (90 %, 95/106) were satisfied with physician EMR use: 59 % (63/107) reported the computer had a positive effect on their relationship and only 7 % (8/108) reported the EMR made it harder to talk with their doctors. Despite concerns regarding EMRs impeding doctor-patient communication, patients reported largely positive

A qualitative study of how patients with type 2 diabetes use an electronic stand-alone personal health record.

PubMed

Fuji, Kevin T; Abbott, Amy A; Galt, Kimberly A

2015-04-01

Patient use of personal health records (PHRs) to manage their health information has been proposed to enhance patient knowledge and empower patients to make changes in their self-care behaviors. However, there remains a gap in understanding about patients' actual PHR use behaviors. The purpose of this qualitative study was to explore how patients with type 2 diabetes used a PHR to manage their diabetes-related health information for self-care. Fifty-nine patients with type 2 diabetes were interviewed 3-6 months after receiving initial training on a free-of-charge, Web-based PHR. Interviews were audio-recorded, transcribed, and analyzed using an iterative process of in vivo coding, categorization, and theme development. Nine themes emerged, three of which expressed positive experiences: complete and accessible record; increased awareness; and behavioral changes. The remaining six themes expressed negative experiences: out of sight, out of mind; I would have used it if I were sicker; economic, infrastructure, and computer literacy barriers; lack of patient-provider engagement; double tracking; and privacy and security concerns. Despite some potential positive benefits resulting from PHR use, several barriers inhibited sustained and effective use over time. Provider and patient education about the benefits of PHR use and about the potential for filling in information gaps in the provider-based record is key to engage patients and stimulate PHR adoption and use.

Patients' appraisals of public and private healthcare: a qualitative study of physiotherapy and osteopathy.

PubMed

Bradbury, Katherine J; Bishop, Felicity L; Yardley, Lucy; Lewith, George

2013-10-01

Patients have previously reported differences in their experiences of treatments received in the public and private sectors; it remains unclear whether such perceived differences are particular to or shared across different interventions. This study explored whether patients' appraisals of public and private treatments are similar when appraising a complementary therapy (osteopathy) compared to a mainstream therapy (physiotherapy). Thirty-five qualitative interviews were analysed thematically. Patients' appraisals varied by health-care sector and therapy type: physiotherapy was appraised more negatively in the National Health Service than the private sector but osteopathy was appraised similarly within both health-care sectors. Potential reasons for this are discussed.

End-of-Life Dreams and Visions: A Qualitative Perspective From Hospice Patients.

PubMed

Nosek, Cheryl L; Kerr, Christopher W; Woodworth, Julie; Wright, Scott T; Grant, Pei C; Kuszczak, Sarah M; Banas, Anne; Luczkiewicz, Debra L; Depner, Rachel M

2015-05-01

End-of-life dreams and visions (ELDVs) are well documented throughout history and across cultures with impact on the dying person and their loved ones having profound meaning. Published studies on ELDVs are primarily based on surveys or interviews with clinicians or families of dead persons. This study uniquely examined patient dreams and visions from their personal perspective. This article reports the qualitative findings from dreams and visions of 63 hospice patients. Inductive content analysis was used to examine the content and subjective significance of ELDVs. Six categories emerged: comforting presence, preparing to go, watching or engaging with the deceased, loved ones waiting, distressing experiences, and unfinished business. © The Author(s) 2014.

Critical issues in an electronic documentation system.

PubMed

Weir, Charlene R; Nebeker, Jonathan R

2007-10-11

The Veterans Health Administration (VHA), of the U.S. Department of Veteran Affairs has instituted a medical record (EMR) that includes electronic documentation of all narrative components of the medical record. To support clinicians using the system, multiple efforts have been instituted to ease the creation of narrative reports. Although electronic documentation is easier to read and improves access to information, it also may create new and additional hazards for users. This study is the first step in a series of studies to evaluate the issues surrounding the creation and use of electronic documentation. Eighty-eight providers across multiple clinical roles were interviewed in 10 primary care sites in the VA system. Interviews were tape-recorded, transcribed and qualitatively analyzed for themes. In addition, specific questions were asked about perceived harm due to electronic documentation practices. Five themes relating to difficulties with electronic documentation were identified: 1) information overload; 2) hidden information; 3) lack of trust; 4) communication; 5) decision-making. Three providers reported that they knew of an incident where current documentation practices had caused patient harm and over 75% of respondents reported significant mis-trust of the system.

Inner conflict in patients receiving oral anticancer agents: a qualitative study.

PubMed

Yagasaki, Kaori; Komatsu, Hiroko; Takahashi, Tsunehiro

2015-04-14

To explore the experiences of patients receiving oral anticancer agents. A qualitative study using semistructured interviews with a grounded theory approach. A university hospital in Japan. 14 patients with gastric cancer who managed their cancer with oral anticancer agents. Patients with cancer experienced inner conflict between rational belief and emotional resistance to taking medication due to confrontation with cancer, doubt regarding efficacy and concerns over potential harm attached to use of the agent. Although they perceived themselves as being adherent to medication, they reported partial non-adherent behaviours. The patients reassessed their lives through the experience of inner conflict and, ultimately, they recognised their role in medication therapy. Patients with cancer experienced inner conflict, in which considerable emotional resistance to taking their medication affected their occasional non-adherent behaviours. In patient-centred care, it is imperative that healthcare providers understand patients' inner conflict and inconsistency between their subjective view and behaviour to support patient adherence. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Adherence to HAART therapy measured by electronic monitoring in newly diagnosed HIV patients in Botswana.

PubMed

Vriesendorp, Reinout; Cohen, Adam; Kristanto, Paulus; Vrijens, Bernard; Rakesh, Pande; Anand, Bene; Iwebor, Henry Uchechukwaka; Stiekema, Jacobus

2007-12-01

This pilot study was designed to evaluate the feasibility and benefits of electronic adherence monitoring of antiretroviral medications in HIV patients who recently started Highly Active Anti Retroviral Therapy (HAART) in Francistown, Botswana and to compare this with self-reporting. Dosing histories were compiled electronically using Micro Electro Mechanical Systems (MEMS) monitors to evaluate adherence to prescribed therapies. Thirty patients enrolled in the antiretroviral treatment program were monitored over 6 weeks. These patients were all antiretroviral (ARV) naïve. After each visit (mean three times) to the pharmacy, the data compiled by the monitors were downloaded. Electronic monitoring of adherence was compared to patient self-reports of adherence. The mean individual medication adherence level measured with the electronic device was 85% (range 21-100%). The mean adherence level measured by means of self-reporting was 98% (range 70-100%). Medication prescribed on a once-a-day dose base was associated with a higher adherence level (97.9% for efavirenz) compared with a twice-a-day regimen (88.4% for Lamivudine/Zidovudine). It is feasible to assess treatment adherence of patients living in a low resource setting on HAART by using electronic monitors. Adherence, even in the early stages of treatment, appears to be insufficient in some patients and may be below the level required for continuous inhibition of viral replication. This approach may lead to improved targeting of counselling about their medication intake of such patients in order to prevent occurrence of resistant viral strains due to inadequate inhibition of viral replication. In this pilot study a significant difference between the data recorded through the electronic monitors and those provided by self-reporting was observed.

Stigma Experienced by Parkinson's Disease Patients: A Descriptive Review of Qualitative Studies.

PubMed

Maffoni, Marina; Giardini, Anna; Pierobon, Antonia; Ferrazzoli, Davide; Frazzitta, Giuseppe

2017-01-01

Parkinson's disease (PD) is a neurodegenerative disease characterized by motor and nonmotor symptoms. Both of them imply a negative impact on Health-Related Quality of Life. A significant one is the stigma experienced by the parkinsonian patients and their caregivers. Moreover, stigma may affect everyday life and patient's subjective and relational perception and it may lead to frustration and isolation. Aim of the present work is to qualitatively describe the stigma of PD patients stemming from literature review, in order to catch the subjective experience and the meaning of the stigma construct. Literature review was performed on PubMed database and Google Scholar (keywords: Parkinson Disease, qualitative, stigma, social problem, isolation, discrimination) and was restricted to qualitative data: 14 articles were identified to be suitable to the aim of the present overview. Results are divided into four core constructs: stigma arising from symptoms, stigma linked to relational and communication problems, social stigma arising from sharing perceptions, and caregiver's stigma. The principal relations to these constructs are deeply analyzed and described subjectively through patients' and caregiver's point of view. The qualitative research may allow a better understanding of a subjective symptom such as stigma in parkinsonian patients from an intercultural and a social point of view.

Stigma Experienced by Parkinson's Disease Patients: A Descriptive Review of Qualitative Studies

PubMed Central

Maffoni, Marina; Pierobon, Antonia; Ferrazzoli, Davide

2017-01-01

Parkinson's disease (PD) is a neurodegenerative disease characterized by motor and nonmotor symptoms. Both of them imply a negative impact on Health-Related Quality of Life. A significant one is the stigma experienced by the parkinsonian patients and their caregivers. Moreover, stigma may affect everyday life and patient's subjective and relational perception and it may lead to frustration and isolation. Aim of the present work is to qualitatively describe the stigma of PD patients stemming from literature review, in order to catch the subjective experience and the meaning of the stigma construct. Literature review was performed on PubMed database and Google Scholar (keywords: Parkinson Disease, qualitative, stigma, social problem, isolation, discrimination) and was restricted to qualitative data: 14 articles were identified to be suitable to the aim of the present overview. Results are divided into four core constructs: stigma arising from symptoms, stigma linked to relational and communication problems, social stigma arising from sharing perceptions, and caregiver's stigma. The principal relations to these constructs are deeply analyzed and described subjectively through patients' and caregiver's point of view. The qualitative research may allow a better understanding of a subjective symptom such as stigma in parkinsonian patients from an intercultural and a social point of view. PMID:28243481

The electronic patient record: a strategic planning framework.

PubMed

Gordon, D B; Marafioti, S; Carter, M; Kunov, H; Dolan, A

1995-01-01

Sunnybrook Health Science Center (Sunnybrook) is a multifacility academic teaching center. In May 1994, Sunnybrook struck an electronic patient record taskforce to develop a strategic plan for the implementation of a comprehensive, facility wide electronic patient record (EPR). The taskforce sought to create a conceptual framework which provides context and integrates decision-making related to the comprehensive electronic patient record. The EPR is very much broader in scope than the traditional paper-based record. It is not restricted to simply reporting individual patient data. By the Institute of Medicine's definition, the electronic patient record resides in a system specifically designed to support users through availability of complete and accurate data, practitioner reminders and alerts, clinical decision support systems, links to bodies of medical knowledge, and other aids [1]. It is a comprehensive resource for patient care. The taskforce proposed a three domain model for determining how the EPR affects Sunnybrook. The EPR enables Sunnybrook to have a high performance team structure (domain 1), to function as an integrated organization (domain 2), and to reach out and develop new relationships with external organizations to become an extended enterprise (domain 3) [2]. Domain 1: Sunnybrook's high performance teams or patient service units' (PSUs) are decentralized, autonomous operating units that provide care to patients grouped by 'like' diagnosis and resource needs. The EPR must provide functions and applications which promote patient focused care, such as cross functional charting and care maps, group scheduling, clinical email, and a range of enabling technologies for multiskilled workers. Domain 2: In the integrated organization domain, the EPR should facilitate closer linkages between the arrangement of PSUs into clinical teams and with other facilities within the center in order to provide a longitudinal record that covers a continuum of care

Physicians' use of and attitudes toward electronic mail for patient communication.

PubMed

Gaster, Barak; Knight, Christopher L; DeWitt, Dawn E; Sheffield, John V L; Assefi, Nassim P; Buchwald, Dedra

2003-05-01

To assess physicians' use of and attitudes toward electronic mail (e-mail) for patient communication, we conducted a mail-in survey of physicians who see patients in outpatient clinics affiliated with a large academic medical center (N = 283). Seventy-two percent of physicians reported using e-mail to communicate with patients, averaging 7.7 e-mails from patients per month. The lowest level of use was by community-based primary care physicians (odds ratio, 0.22; 95% confidence interval, 0.08 to 0.59). Those physicians who reported using e-mail with patients reported high satisfaction with its use. Although physicians were concerned about the confidentiality of e-mail, few discussed this issue with patients.

Physicians' Use of and Attitudes Toward Electronic Mail for Patient Communication

PubMed Central

Gaster, Barak; Knight, Christopher L; DeWitt, Dawn E; Sheffield, John V L; Assefi, Nassim P; Buchwald, Dedra

2003-01-01

To assess physicians' use of and attitudes toward electronic mail (e-mail) for patient communication, we conducted a mail-in survey of physicians who see patients in outpatient clinics affiliated with a large academic medical center (N = 283). Seventy-two percent of physicians reported using e-mail to communicate with patients, averaging 7.7 e-mails from patients per month. The lowest level of use was by community-based primary care physicians (odds ratio, 0.22; 95% confidence interval, 0.08 to 0.59). Those physicians who reported using e-mail with patients reported high satisfaction with its use. Although physicians were concerned about the confidentiality of e-mail, few discussed this issue with patients. PMID:12795738

Patient-reported outcomes and adult patients' disease experience in the idiopathic inflammatory myopathies. report from the OMERACT 11 Myositis Special Interest Group.

PubMed

Alexanderson, Helene; Del Grande, Maria; Bingham, Clifton O; Orbai, Ana-Maria; Sarver, Catherine; Clegg-Smith, Katherine; Lundberg, Ingrid E; Song, Yeong Wook; Christopher-Stine, Lisa

2014-03-01

The newly formed Outcome Measures in Rheumatology (OMERACT) Myositis Special Interest Group (SIG) was established to examine patient-reported outcome measures (PROM) in myositis. At OMERACT 11, a literature review of PROM used in the idiopathic inflammatory myopathies (IIM) and other neuromuscular conditions was presented. The group examined in more detail 2 PROM more extensively evaluated in patients with IIM, the Myositis Activities Profile, and the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire, through the OMERACT filter of truth, discrimination, and feasibility. Preliminary results from a qualitative study of patients with myositis regarding their symptoms were discussed that emphasized the range of symptoms experienced: pain, physical tightness/stiffness, fatigue, disease effect on emotional life and relationships, and treatment-related side effects. Following discussion of these results and following additional discussions since OMERACT 11, a research agenda was developed. The next step in evaluating PROM in IIM will require additional focus groups with a spectrum of patients with different myositis disease phenotypes and manifestations across a range of disease activity, and from multiple international settings. The group will initially focus on dermatomyositis and polymyositis in adults. Qualitative analysis will facilitate the identification of commonalities and divergent patient-relevant aspects of disease, insights that are critical given the heterogeneous manifestations of these diseases. Based on these qualitative studies, existing myositis PROM can be examined to more thoroughly assess content validity, and will be important to identify gaps in domain measurement that will be required to develop a preliminary core set of patient-relevant domains for IIM.

Quantitative versus qualitative cultures of respiratory secretions for clinical outcomes in patients with ventilator-associated pneumonia.

PubMed

Berton, Danilo Cortozi; Kalil, Andre C; Cavalcanti, Manuela; Teixeira, Paulo José Zimermann

2008-10-08

Ventilator-associated pneumonia (VAP) is a common infectious disease in intensive care units (ICUs). The best diagnostic approach to resolve this condition remains uncertain. To evaluate whether quantitative cultures of respiratory secretions are effective in reducing mortality in immunocompetent patients with VAP, compared with qualitative cultures. We also considered changes in antibiotic use, length of ICU stay and mechanical ventilation. We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2007, issue 4), which contains the Acute Respiratory Infections Group's Specialized Register; MEDLINE (1966 to December 2007); EMBASE (1974 to December 2007); and LILACS (1982 to December 2007). Randomized controlled trials (RCTs) comparing respiratory samples processed quantitatively or qualitatively, obtained by invasive or non-invasive methods from immunocompetent patients with VAP, and which analyzed the impact of these methods on antibiotic use and mortality rates. Two review authors independently reviewed and selected trials from the search results, and assessed studies for suitability, methodology and quality. We analyzed data using Review Manager software. We pooled the included studies to yield the risk ratio (RR) for mortality and antibiotic change with 95% confidence intervals (CI). Of the 3931 references identified from the electronic databases, five RCTs (1367 patients) met the inclusion criteria. Three studies compared invasive methods using quantitative cultures versus non-invasive methods using qualitative cultures, and were used to answer the main objective of this review. The other two studies compared invasive versus non-invasive methods, both using quantitative cultures. All five studies were combined to compare invasive versus non-invasive interventions for diagnosing VAP. The studies that compared quantitative and qualitative cultures (1240 patients) showed no statistically significant differences in mortality

Use of a Patient-Accessible Electronic Medical Record in a Practice for Congestive Heart Failure: Patient and Physician Experiences

PubMed Central

Earnest, Mark A.; Ross, Stephen E.; Wittevrongel, Loretta; Moore, Laurie A.; Lin, Chen-Tan

2004-01-01

Objective: The aim of this study was to evaluate the experiences of patients and physicians in a clinical trial of an online electronic medical record (SPPARO, System Providing Patients Access to Records Online). Design: Quantitative data were obtained from questionnaires. Qualitative data were obtained from individual interviews and focus groups. Measurements: Questionnaire items were based on issues identified by patients and physicians in previous studies. Individual interviews and focus groups were performed using a semistructured format developed through an iterative process. Results: Of the eight physicians who participated in the trial, seven completed questionnaires and interviews. Of the 394 patients in the practice, 107 enrolled in the study, and 54 were assigned randomly to the intervention group. Of these, 41 used SPPARO during the trial period. In questionnaires and interviews, patients were significantly more likely than physicians to anticipate benefits of SPPARO and less likely to anticipate problems. Attitudes of subjects did not diverge from controls after the intervention period. In posttrial focus groups, SPPARO users described its practical benefits. Comprehending medical jargon was a minor obstacle. Physicians anticipated that implementing SPPARO might increase their workload and distort their clinical interactions. In posttrial interviews, physicians and staff reported no change in their workload and no adverse consequences. All of the physicians ultimately supported the concept of giving patients online access to their clinical notes and test results. Conclusion: SPPARO was useful for a number of patients. Physicians initially voiced a number of concerns about implementing SPPARO, but their experience with it was far more positive. PMID:15187074

Patient-Centered Research to Support the Development of the Symptoms of Major Depressive Disorder Scale (SMDDS): Initial Qualitative Research.

PubMed

McCarrier, Kelly P; Deal, Linda S; Abraham, Lucy; Blum, Steven I; Bush, Elizabeth Nicole; Martin, Mona L; Thase, Michael E; Coons, Stephen Joel

2016-04-01

Content valid, patient-reported outcome (PRO) measures of major depressive disorder (MDD) symptoms are needed to assess MDD treatment benefit. While a range of questionnaires are currently available to evaluate aspects of depression from the patient's perspective, their comprehensiveness and qualitative development histories are unclear. The objective of this study was to describe the process and results of the preliminary qualitative development of a new symptom-based PRO measure intended to assess treatment benefit in MDD clinical trials. Qualitative interviews were conducted with adult MDD patients in the USA who recently experienced a major depressive episode. Experienced interviewers conducted concept elicitation (CE) and cognitive interviews using semi-structured interview guides. The CE interview guide was used to elicit spontaneous reports of symptom experiences along with probing to further explore and confirm concepts. The cognitive interview guide was developed to evaluate concept relevance, understandability, and structure of the draft items, and to facilitate further instrument refinement. Forty patients participated in the CE interviews. A total of 3022 symptom codes, representing 84 different concepts were derived from the transcripts. Data from the CE interviews were considered alongside existing literature and clinical expert opinion during an item-generation process, leading to development of a preliminary version of the Symptoms of Major Depressive Disorder Scale (SMDDS). Fifteen patients participated in three waves of cognitive interviews, during which the SMDDS was further refined. The SMDDS is a 35-item PRO measure intended for use as an endpoint in MDD clinical trials to support medical product labeling. The SMDDS uses a 7-day recall period and verbal rating scales. It was developed in accordance with the US Food and Drug Administration (FDA)'s PRO Guidance and best practices. Qualitative interviews have provided evidence for content validity

Beyond Googling: The Ethics of Using Patients' Electronic Footprints in Psychiatric Practice.

PubMed

Fisher, Carl E; Appelbaum, Paul S

Electronic communications are an increasingly important part of people's lives, and much information is accessible through such means. Anecdotal clinical reports indicate that mental health professionals are beginning to use information from their patients' electronic activities in treatment and that their data-gathering practices have gone far beyond simply searching for patients online. Both academic and private sector researchers are developing mental health applications to collect patient information for clinical purposes. Professional societies and commentators have provided minimal guidance, however, about best practices for obtaining or using information from electronic communications or other online activities. This article reviews the clinical and ethical issues regarding use of patients' electronic activities, primarily focusing on situations in which patients share information with clinicians voluntarily. We discuss the potential uses of mental health patients' electronic footprints for therapeutic purposes, and consider both the potential benefits and the drawbacks and risks. Whether clinicians decide to use such information in treating any particular patient-and if so, the nature and scope of its use-requires case-by-case analysis. But it is reasonable to assume that clinicians, depending on their circumstances and goals, will encounter circumstances in which patients' electronic activities will be relevant to, and useful in, treatment.

Referrals to integrative medicine in a tertiary hospital: findings from electronic health record data and qualitative interviews.

PubMed

Griffin, Kristen H; Nate, Kent C; Rivard, Rachael L; Christianson, Jon B; Dusek, Jeffery A

2016-07-25

To examine patterns of, and decision-making processes, informing referrals for inpatient access to integrative medicine (IM) services at a large, acute care hospital. Retrospective electronic health record review and structured qualitative interviews. A 630-bed tertiary care hospital with an IM service available to inpatients. IM referrals of all inpatients aged ≥18 years between July 2012 and December 2014 were identified using the hospital's electronic health record. Fifteen physicians, 15 nurses and 7 administrators were interviewed to better understand roles and perspectives in referring patients for IM services. In the study hospital, primary sources of referrals for IM services were the orthopaedic and neuroscience/spine service lines. While the largest absolute number of IM referrals was made for patients with lengths of stay of 3 days or fewer, a disproportionate number of total IM referrals was made for patients with long lengths of stay (≥10 days), compared with a smaller percentage of patients in the hospital with lengths of stay ≥10 days. Physicians and nurses were more likely to refer patients who displayed strong symptoms (eg, pain and anxiety) and/or did not respond to conventional therapies. IM referrals were predominantly nurse-initiated. A built-in delay in the time from referral initiation to service delivery discouraged referrals of some patients. Conventional providers refer patients for IM services when these services are available in a tertiary hospital. Referral patterns are influenced by patient characteristics, operational features and provider perspectives. Nurses play a key role in the referral process. Overcoming cultural and knowledge differences between conventional and IM providers is likely to be a continuing challenge to providing IM in inpatient settings. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Integrating Electronic Patient-Reported Outcome Measures into Routine HIV Care and the ANRS CO3 Aquitaine Cohort's Data Capture and Visualization System (QuAliV): Protocol for a Formative Research Study.

PubMed

Barger, Diana; Leleux, Olivier; Conte, Valérie; Sapparrart, Vincent; Gapillout, Marie; Crespel, Isabelle; Erramouspe, Marie; Delveaux, Sandrine; Dabis, Francois; Bonnet, Fabrice

2018-06-07

Effective antiretroviral therapy has greatly reduced HIV-related morbidity and mortality, dramatically changing the demographics of the population of people living with HIV. The majority of people living with HIV in France are well cared for insofar as their HIV infection is concerned but remain at risk for age-associated comorbidities. Their long-term, potentially complex, and growing care needs make the routine, longitudinal assessment of health-related quality of life and other patient-reported outcomes of relevance in the current treatment era. We aim to describe the development of a Web-based electronic patient-reported outcomes system for people living with HIV linked to the ANRS CO3 Aquitaine cohort's data capture and visualization system (ARPEGE) and designed to facilitate the electronic collection of patient-reported data and ultimately promote better patient-physician communication and quality of care (both patient satisfaction and health outcomes). Participants who meet the eligibility criteria will be invited to engage with the Web-based electronic patient-reported outcomes system and provided with the information necessary to create a personal patient account. They will then be able to access the electronic patient-reported outcomes system and complete a set of standardized validated questionnaires covering health-related quality of life (World Health Organization's Quality of Life Instrument in HIV infection, named WHOQOL-HIV BREF) and other patient-reported outcomes. The information provided via questionnaires will ultimately be presented in a summary format for clinicians, together with the patient's HIV care history. The prototype of the Web-based electronic patient-reported outcome system will be finalized and the first 2 formative research phases of the study (prototyping and usability testing) will be conducted from December 2017 to May 2018. We describe the sequential processes planned to ensure that the proposed electronic patient-reported

Oral complaints and dental care of haematopoietic stem cell transplant patients: a qualitative survey of patients and their dentists.

PubMed

Bos-den Braber, Jacolien; Potting, Carin M J; Bronkhorst, Ewald M; Huysmans, Marie-Charlotte D N J M; Blijlevens, Nicole M A

2015-01-01

Little is known about the understanding of the oral and dental needs of haematopoietic stem cell transplant (HSCT) patients or about dentists' views and experiences regarding this patient group. This information is essential if we want to improve the standard of peri-HSCT dental care. The primary objective of this qualitative survey was to explore the following: (1) The understanding of dental care pre- and post-HSCT (2) The subjective oral complaints of HSCT patients both short- and long-term (3) The relationship of these oral complaints to the severity of oral mucositis during hospitalization The secondary objective was to explore the opinions of dentists regarding dental care before and after HSCT. All adult patients who survived HSCT at the Radboud University Medical Centre between 2010 and 2011 (n = 101) received a questionnaire. During hospitalization, mucositis scores were recorded daily in the patient's chart. The patients' dentist (n = 88) was also sent a questionnaire after permission of the patient. Ninety-six out of 101 patients (95%) responded. The average period since HSCT was 19 months (range 8-31 months). The overall mean maximum mucositis score was 6.6 (sd = 3.3). Only eight patients reported not having visited a dentist pre-HSCT. The majority of the patients (59%) reported short-term oral complaints, and 28% reported long-term oral complaints. Fifty-two dentists responded (59%). Nine had not performed pre-HSCT screening and eight dentists reported screening their patients but could not complete the necessary treatments. Only 44 dentists succeeded in completing the required treatments. The most important advice of the dentist was to reinforce the importance of regular dental care. Most patients report short-term and/or long-term oral complaints after HSCT. Most dentists stress the importance of regular dental care before and after HSCT but report not being familiar with the particular dental care needs of this patient group. The high

Patient Perspectives on Quality of Life With Uncontrolled Type 1 Diabetes Mellitus: A Systematic Review and Qualitative Meta-synthesis.

PubMed

Vanstone, Meredith; Rewegan, Alex; Brundisini, Francesca; Dejean, Deirdre; Giacomini, Mita

2015-01-01

Patients with uncontrolled type 1 diabetes mellitus may be candidates for pancreatic islet cell transplantation. This report synthesizes qualitative research on how patients with uncontrolled type 1 diabetes perceive their quality of life. The objective of this analysis was to examine the perceptions of patients with uncontrolled type 1 diabetes on how it affects their lived experience and quality of life. This report synthesizes 31 primary qualitative studies to examine quality of life from the perspectives of adult patients with type 1 diabetes mellitus and their families or partners. We performed a qualitative meta-synthesis to integrate findings across primary research studies. Long- and short-term negative consequences of uncontrolled type 1 diabetes affect all aspects of patients' lives: physical, emotional, practical, and social. The effect on each domain is far-reaching, and effects interact across domains. Uncontrolled blood sugar levels lead to substantial psychological distress, negative moods, cognitive difficulties, irritable or aggressive behaviour, and closely associated problems with relationships, self-image, and confidence. Emotional distress is pervasive and under-addressed by health care providers. Patients live in fear of complications from diabetes over the long term. In the shorter term, they are anxious about the personal, social, and professional consequences of hypoglycemic episodes (e.g., injury, humiliation), and may curtail normal activities such as driving or socializing because they are worried about having an episode. The quality of life for patients' family members is also negatively impacted by uncontrolled type 1 diabetes. Uncontrolled type 1 diabetes has significant negative impacts on the quality of life of both people with the disease and their families.

Methodological reporting in qualitative, quantitative, and mixed methods health services research articles.

PubMed

Wisdom, Jennifer P; Cavaleri, Mary A; Onwuegbuzie, Anthony J; Green, Carla A

2012-04-01

Methodologically sound mixed methods research can improve our understanding of health services by providing a more comprehensive picture of health services than either method can alone. This study describes the frequency of mixed methods in published health services research and compares the presence of methodological components indicative of rigorous approaches across mixed methods, qualitative, and quantitative articles. All empirical articles (n = 1,651) published between 2003 and 2007 from four top-ranked health services journals. All mixed methods articles (n = 47) and random samples of qualitative and quantitative articles were evaluated to identify reporting of key components indicating rigor for each method, based on accepted standards for evaluating the quality of research reports (e.g., use of p-values in quantitative reports, description of context in qualitative reports, and integration in mixed method reports). We used chi-square tests to evaluate differences between article types for each component. Mixed methods articles comprised 2.85 percent (n = 47) of empirical articles, quantitative articles 90.98 percent (n = 1,502), and qualitative articles 6.18 percent (n = 102). There was a statistically significant difference (χ(2) (1) = 12.20, p = .0005, Cramer's V = 0.09, odds ratio = 1.49 [95% confidence interval = 1,27, 1.74]) in the proportion of quantitative methodological components present in mixed methods compared to quantitative papers (21.94 versus 47.07 percent, respectively) but no statistically significant difference (χ(2) (1) = 0.02, p = .89, Cramer's V = 0.01) in the proportion of qualitative methodological components in mixed methods compared to qualitative papers (21.34 versus 25.47 percent, respectively). Few published health services research articles use mixed methods. The frequency of key methodological components is variable. Suggestions are provided to increase the transparency of mixed methods studies and

Integrating cancer survivors' experiences into UK cancer registries: design and development of the ePOCS system (electronic Patient-reported Outcomes from Cancer Survivors)

PubMed Central

Ashley, L; Jones, H; Thomas, J; Forman, D; Newsham, A; Morris, E; Johnson, O; Velikova, G; Wright, P

2011-01-01

Background: Understanding the psychosocial challenges of cancer survivorship, and identifying which patients experience ongoing difficulties, is a key priority. The ePOCS (electronic patient-reported outcomes from cancer survivors) project aims to develop and evaluate a cost-efficient, UK-scalable electronic system for collecting patient-reported outcome measures (PROMs), at regular post-diagnostic timepoints, and linking these with clinical data in cancer registries. Methods: A multidisciplinary team developed the system using agile methods. Design entailed process mapping the system's constituent parts, data flows and involved human activities, and undertaking usability testing. Informatics specialists built new technical components, including a web-based questionnaire tool and tracking database, and established component-connecting data flows. Development challenges were overcome, including patient usability and data linkage and security. Results: We have developed a system in which PROMs are completed online, using a secure questionnaire administration tool, accessed via a public-facing website, and the responses are linked and stored with clinical registry data. Patient monitoring and communications are semiautomated via a tracker database, and patient correspondence is primarily Email-based. The system is currently honed for clinician-led hospital-based patient recruitment. Conclusions: A feasibility test study is underway. Although there are possible challenges to sustaining and scaling up ePOCS, the system has potential to support UK epidemiological PROMs collection and clinical data linkage. PMID:22048035

Exploring behavioural determinants relating to health professional reporting of medication errors: a qualitative study using the Theoretical Domains Framework.

PubMed

Alqubaisi, Mai; Tonna, Antonella; Strath, Alison; Stewart, Derek

2016-07-01

Effective and efficient medication reporting processes are essential in promoting patient safety. Few qualitative studies have explored reporting of medication errors by health professionals, and none have made reference to behavioural theories. The objective was to describe and understand the behavioural determinants of health professional reporting of medication errors in the United Arab Emirates (UAE). This was a qualitative study comprising face-to-face, semi-structured interviews within three major medical/surgical hospitals of Abu Dhabi, the UAE. Health professionals were sampled purposively in strata of profession and years of experience. The semi-structured interview schedule focused on behavioural determinants around medication error reporting, facilitators, barriers and experiences. The Theoretical Domains Framework (TDF; a framework of theories of behaviour change) was used as a coding framework. Ethical approval was obtained from a UK university and all participating hospital ethics committees. Data saturation was achieved after interviewing ten nurses, ten pharmacists and nine physicians. Whilst it appeared that patient safety and organisational improvement goals and intentions were behavioural determinants which facilitated reporting, there were key determinants which deterred reporting. These included the beliefs of the consequences of reporting (lack of any feedback following reporting and impacting professional reputation, relationships and career progression), emotions (fear and worry) and issues related to the environmental context (time taken to report). These key behavioural determinants which negatively impact error reporting can facilitate the development of an intervention, centring on organisational safety and reporting culture, to enhance reporting effectiveness and efficiency.

Instant availability of patient records, but diminished availability of patient information: A multi-method study of GP's use of electronic patient records

PubMed Central

Christensen, Tom; Grimsmo, Anders

2008-01-01

Background In spite of succesful adoption of electronic patient records (EPR) by Norwegian GPs, what constitutes the actual benefits and effects of the use of EPRs in the perspective of the GPs and patients has not been fully characterized. We wanted to study primary care physicians' use of electronic patient record (EPR) systems in terms of use of different EPR functions and the time spent on using the records, as well as the potential effects of EPR systems on the clinician-patient relationship. Methods A combined qualitative and quantitative study that uses data collected from focus groups, observations of primary care encounters and a questionnaire survey of a random sample of general practitioners to describe their use of EPR in primary care. Results The overall availability of individual patient records had improved, but the availability of the information within each EPR was not satisfactory. GPs' use of EPRs were efficient and comprehensive, but have resulted in transfer of administrative work from secretaries to physicians. We found no indications of disturbance of the clinician-patient relationship by use of computers in this study. Conclusion Although GPs are generally satisfied with their EPRs systems, there are still unmet needs and functionality to be covered. It is urgent to find methods that can make a better representation of information in large patient records as well as prevent EPRs from contributing to increased administrative workload of physicians. PMID:18373858

PatientViewpoint: a website for patient-reported outcomes assessment.

PubMed

Snyder, Claire F; Jensen, Roxanne; Courtin, S Orion; Wu, Albert W

2009-09-01

To develop a prototype website to collect patient-reported outcomes in outpatient clinical oncology and link the data with the electronic medical record (EMR). A multidisciplinary Research Network, including experts in outcomes research, clinical oncology, nursing, social work, information technology, EMRs, behavioral science, decision science, clinical trials, law, and a cancer survivor, was formed to design the prototype website. The Research Network developed the initial website specifications, elicited feedback from patients (n = 20) and clinicians (n = 7), constructed the website, and conducted usability testing (n = 10). Clinicians reported that the website could improve clinical practice if it was not burdensome and were most interested in tracking change over time. Patients were interested in using the website because of the potential to facilitate communication with their clinicians. Patients emphasized the importance of short and simple surveys and a user-friendly interface. The PatientView-oint website was designed to meet these specifications. Usability testing suggested that patients had few problems accessing and using the site. Preliminary reports from clinicians and patients suggest that a website to collect PROs and link them with the EMR could help improve the quality of cancer care. Further pilot-testing will evaluate the use, usefulness, and acceptability of PatientViewpoint.

Fix and forget or fix and report: a qualitative study of tensions at the front line of incident reporting.

PubMed

Hewitt, Tanya Anne; Chreim, Samia

2015-05-01

Practitioners frequently encounter safety problems that they themselves can resolve on the spot. We ask: when faced with such a problem, do practitioners fix it in the moment and forget about it, or do they fix it in the moment and report it? We consider factors underlying these two approaches. We used a qualitative case study design employing in-depth interviews with 40 healthcare practitioners in a tertiary care hospital in Ontario, Canada. We conducted a thematic analysis, and compared the findings with the literature. 'Fixing and forgetting' was the main choice that most practitioners made in situations where they faced problems that they themselves could resolve. These situations included (A) handling near misses, which were seen as unworthy of reporting since they did not result in actual harm to the patient, (B) prioritising solving individual patients' safety problems, which were viewed as unique or one-time events and (C) encountering re-occurring safety problems, which were framed as inevitable, routine events. In only a few instances was 'fixing and reporting' mentioned as a way that the providers dealt with problems that they could resolve. We found that generally healthcare providers do not prioritise reporting if a safety problem is fixed. We argue that fixing and forgetting patient safety problems encountered may not serve patient safety as well as fixing and reporting. The latter approach aligns with recent calls for patient safety to be more preventive. We consider implications for practice. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Self-Care Practices among Diabetes Patients in Addis Ababa: A Qualitative Study

PubMed Central

Tewahido, Dagmawit; Berhane, Yemane

2017-01-01

Background Self-care practices that include self-monitoring of blood sugar level, diet management, physical exercise, adherence to medications, and foot care are the cornerstones of diabetes management. However, very little is known about self-care in developing countries where the prevalence of diabetes is increasing. Objective The objective of this study was to describe self-care practices among individuals with type II diabetes in Addis Ababa, Ethiopia. Methods A qualitative method was used to gather data from type II diabetes patients. Patients were recruited from the outpatient diabetes clinics of two public hospitals in Addis Ababa. Data were collected using a semi structured interview guide. A thematic analysis approach was used to process the data. Results Overall self-care practices were not adequate. Most patients reported irregular self-monitoring of blood sugar. Dietary and physical exercise recommendations were inadequately practiced by most of the participants. Most patients better adhered to medication prescriptions. Patients generally lack proper information/knowledge regarding the importance of self-care and how it should be implemented. Based on reported behavior we identified three main categories of patients; which are those ‘endeavor to be compliant’, ‘confused’ and ‘negligent’. Conclusion Diabetes patients largely depend on prescribed medications to control their blood sugar level. The importance of proper self-care practices for effective management of diabetes is not adequately emphasized in diabetes care centers and patients lack sufficient knowledge for proper self-care. PMID:28045992

Measuring Patient Adherence to Malaria Treatment: A Comparison of Results from Self-Report and a Customised Electronic Monitoring Device

PubMed Central

Bruxvoort, Katia; Festo, Charles; Cairns, Matthew; Kalolella, Admirabilis; Mayaya, Frank; Kachur, S. Patrick; Schellenberg, David; Goodman, Catherine

2015-01-01

Background Self-report is the most common and feasible method for assessing patient adherence to medication, but can be prone to recall bias and social desirability bias. Most studies assessing adherence to artemisinin-based combination therapies (ACTs) have relied on self-report. In this study, we use a novel customised electronic monitoring device—termed smart blister packs—to examine the validity of self-reported adherence to artemether-lumefantrine (AL) in southern Tanzania. Methods Smart blister packs were designed to look identical to locally available AL blister packs and to record the date and time each tablet was removed from packaging. Patients obtaining AL at randomly selected health facilities and drug stores were followed up at home three days later and interviewed about each dose of AL taken. Blister packs were requested for pill count and extraction of smart blister pack data. Results Data on adherence from both self-report verified by pill count and smart blister packs were available for 696 of 1,204 patients. There was no difference between methods in the proportion of patients assessed to have completed treatment (64% and 67%, respectively). However, the percentage taking the correct number of pills for each dose at the correct times (timely completion) was higher by self-report than smart blister packs (37% vs. 24%; p<0.0001). By smart blister packs, 64% of patients completing treatment did not take the correct number of pills per dose or did not take each dose at the correct time interval. Conclusion Smart blister packs resulted in lower estimates of timely completion of AL and may be less prone to recall and social desirability bias. They may be useful when data on patterns of adherence are desirable to evaluate treatment outcomes. Improved methods of collecting self-reported data are needed to minimise bias and maximise comparability between studies. PMID:26214848

Individual influences on lifestyle change to reduce vascular risk: a qualitative literature review

PubMed Central

Murray, Jenni; Honey, Stephanie; Hill, Kate; Craigs, Cheryl; House, Allan

2012-01-01

Background Management of cardiovascular risk includes adoption of healthy lifestyles. Uptake and completion rates for lifestyle programmes are low and many barriers and facilitators to lifestyle behaviour change have been reported in the literature. Clarity on which barriers and facilitators to target during consultations in primary care may support a more systematic approach to lifestyle behaviour change in those at high risk of cardiovascular events. Aim To identify the main barriers and facilitators to lifestyle behaviour change in individuals at high risk of cardiovascular events. Design A content synthesis of the qualitative literature reporting patient-level influences on lifestyle change. Method Qualitative studies involving patients at high risk of cardiovascular events were identified through electronic searching and screening against predefined selection criteria. Factors (reported influences) were extracted and, using a clustering technique, organised into categories that were then linked to key themes through relationship mapping. Results A total of 348 factors were extracted from 33 studies. Factors were organised into 20 categories and from these categories five key themes were identified: emotions, beliefs, information and communication, friends and family support, and cost/transport. Conclusion It is possible to organise the large number of self-reported individual influences on lifestyle behaviours into a small number of themes. Further research is needed to clarify which of these patient-level barriers and facilitators are the best predictors of uptake and participation in programmes aimed at helping people to change lifestyle. PMID:22687232

Developing patient-centered treatment protocols in brain stimulation: a rationale for combining quantitative and qualitative approaches in persons with HIV.

PubMed

Rosedale, Mary; Malaspina, Dolores; Malamud, Daniel; Strauss, Shiela M; Horne, Jaclyn D; Abouzied, Salman; Cruciani, Ricardo A; Knotkova, Helena

2012-01-01

This article reports and discusses how quantitative (physiological and behavioral) and qualitative methods are being combined in an open-label pilot feasibility study. The study evaluates safety, tolerability, and acceptability of a protocol to treat depression in HIV-infected individuals, using a 2-week block of transcranial direct current stimulation (tDCS) over the dorsolateral prefrontal cortex. Major depressive disorder (MDD) is the second most prevalent psychiatric disorder after substance abuse among HIV-positive adults, and novel antidepressant treatments are needed for this vulnerable population. The authors describe the challenges and contributions derived from different research perspectives and methodological approaches and provide a philosophical framework for combining quantitative and qualitative measurements for a fuller examination of the disorder. Four methodological points are presented: (1) the value of combining quantitative and qualitative approaches; (2) the need for context-specific measures when studying patients with medical and psychiatric comorbidities; (3) the importance of research designs that integrate physiological, behavioral, and qualitative approaches when evaluating novel treatments; and (4) the need to explore the relationships between biomarkers, clinical symptom assessments, patient self-evaluations, and patient experiences when developing new, patient-centered protocols. The authors conclude that the complexity of studying novel treatments in complex and new patient populations requires complex research designs to capture the richness of data that inform translational research.

Patient outcomes after critical illness: a systematic review of qualitative studies following hospital discharge.

PubMed

Hashem, Mohamed D; Nallagangula, Aparna; Nalamalapu, Swaroopa; Nunna, Krishidhar; Nausran, Utkarsh; Robinson, Karen A; Dinglas, Victor D; Needham, Dale M; Eakin, Michelle N

2016-10-26

There is growing interest in patient outcomes following critical illness, with an increasing number and different types of studies conducted, and a need for synthesis of existing findings to help inform the field. For this purpose we conducted a systematic review of qualitative studies evaluating patient outcomes after hospital discharge for survivors of critical illness. We searched the PubMed, EMBASE, CINAHL, PsycINFO, and CENTRAL databases from inception to June 2015. Studies were eligible for inclusion if the study population was >50 % adults discharged from the ICU, with qualitative evaluation of patient outcomes. Studies were excluded if they focused on specific ICU patient populations or specialty ICUs. Citations were screened in duplicate, and two reviewers extracted data sequentially for each eligible article. Themes related to patient outcome domains were coded and categorized based on the main domains of the Patient Reported Outcomes Measurement Information System (PROMIS) framework. A total of 2735 citations were screened, and 22 full-text articles were eligible, with year of publication ranging from 1995 to 2015. All of the qualitative themes were extracted from eligible studies and then categorized using PROMIS descriptors: satisfaction with life (16 studies), including positive outlook, acceptance, gratitude, independence, boredom, loneliness, and wishing they had not lived; mental health (15 articles), including symptoms of post-traumatic stress disorder, anxiety, depression, and irritability/anger; physical health (14 articles), including mobility, activities of daily living, fatigue, appetite, sensory changes, muscle weakness, and sleep disturbances; social health (seven articles), including changes in friends/family relationships; and ability to participate in social roles and activities (six articles), including hobbies and disability. ICU survivors may experience positive emotions and life satisfaction; however, a wide range of mental

Patients' perspectives of a multifaceted intervention with a focus on technology: a qualitative analysis.

PubMed

Lambert-Kerzner, Anne; Havranek, Edward P; Plomondon, Mary E; Albright, Karen; Moore, Ashley; Gryniewicz, Kelsey; Magid, David; Ho, P Michael

2010-11-01

Few studies have investigated the effectiveness of multifaceted interventions from the study participants' perspective. We conducted qualitative interviews to understand patients' experiences with a multifaceted blood pressure (BP) control intervention involving interactive voice response technology, home BP monitoring, and pharmacist-led BP management. In the randomized study, the intervention resulted in clinically significant decreases in BP. We used insights generated from in-depth interviews from all study participants randomly assigned to the multifaceted intervention or usual care (n=146) to create a model explaining the observed improvements in health behavior and clinical outcomes. The data were analyzed using qualitative content analysis methods and consultative and reflexive team analysis. Six explanatory factors emerged from the patients' interviews: (1) improved relationships with medical personnel; (2) increased knowledge of hypertension; (3) increased participation in their health care and personal empowerment; (4) greater understanding of the impact of health behavior on BP; (5) high satisfaction with technology used in the intervention; and, for some patients, (6) increased health care utilization. Eighty-six percent of the intervention patients and 62% of the usual care patients stated that study participation had a positive effect on them. Of those expressing a positive effect, 68% (intervention) and 55% (usual care) reached their systolic BP goal. Establishing bidirectional conversations between patients and providers is a key element of successful hypertension management. Home BP monitoring coupled with interactive voice response technology reporting facilitates such conversations.

How Do Experienced Physicians Access and Evaluate Laboratory Test Results for the Chronic Patient? A Qualitative Analysis.

PubMed

Torsvik, Torbjørn; Lillebo, Børge; Hertzum, Morten

2018-04-01

 Electronic health records may present laboratory test results in a variety of ways. Little is known about how the usefulness of different visualizations of laboratory test results is influenced by the complex and varied process of clinical decision making.  The purpose of this study was to investigate how clinicians access and utilize laboratory test results when caring for patients with chronic illness.  We interviewed 10 attending physicians about how they access and assess laboratory tests when following up patients with chronic illness. The interviews were audio-recorded, transcribed verbatim, and analyzed qualitatively.  Informants preferred different visualizations of laboratory test results, depending on what aspects of the data they were interested in. As chronic patients may have laboratory test results that are permanently outside standardized reference ranges, informants would often look for significant change, rather than exact values. What constituted significant change depended on contextual information (e.g., the results of other investigations, intercurrent diseases, and medical interventions) spread across multiple locations in the electronic health record. For chronic patients, the temporal relations between data could often be of special interest. Informants struggled with finding and synthesizing fragmented information into meaningful overviews.  The presentation of laboratory test results should account for the large variety of associated contextual information needed for clinical comprehension. Future research is needed to improve the integration of the different parts of the electronic health record. Schattauer GmbH Stuttgart.

A qualitative study of Canada's experience with the implementation of electronic health information technology.

PubMed

Rozenblum, Ronen; Jang, Yeona; Zimlichman, Eyal; Salzberg, Claudia; Tamblyn, Melissa; Buckeridge, David; Forster, Alan; Bates, David W; Tamblyn, Robyn

2011-03-22

In 2001, Canada Health Infoway unveiled a plan to implement a national system of interoperable electronic health records. This government-funded corporation introduced a novel model for interprovincial/territorial collaboration to establish core aspects of a national framework. Despite this $1.6 billion initiative, Canada continues to lag behind other Western countries in adopting electronic health records. We conducted a study to identify the success of different aspects of the Canadian plan and ways to improve the adoption of electronic health records. We used a case study approach to assess the 10-year history of Canada's e-health plan. National reports and documents were reviewed, and structured interviews were conducted with 29 key stakeholders representing national and provincial organizations responsible for establishing policy and strategic direction for health information technology. Using grounded theory, we analyzed transcripts of the interviews to identify themes and their relationships. Key stakeholders identified funding, national standards, patient registries and digital imaging as important achievements of the e-health plan. Lack of an e-health policy, inadequate involvement of clinicians, failure to establish a business case for using electronic health records, a focus on national rather than regional interoperability, and inflexibility in approach were seen as barriers to adoption of the plan. To accelerate adoption of electronic health records and timely return on investment, an e-health policy needs to be tightly aligned with the major strategic directions of health care reform. Adoption needs to be actively fostered through a bottom-up, clinical-needs-first approach, a national policy for investment in electronic health records, and financial incentives based on patient outcomes that can be achieved with electronic health records.

Reasons for disagreement regarding illnesses between older patients with multimorbidity and their GPs - a qualitative study.

PubMed

Hansen, Heike; Pohontsch, Nadine; van den Bussche, Hendrik; Scherer, Martin; Schäfer, Ingmar

2015-06-02

Chronic conditions are the most common themes in doctor-patient communication, especially for older patients with multimorbidity and their GPs. Former quantitative studies identified a variety of socio-demographic and health-related factors which were associated with the (dis-)agreement between medical records and patient self-reported diseases. The aim of this qualitative study was to identify reasons for disagreement regarding illnesses between patients and their GPs. We conducted three focus groups with GPs (n = 15) and three focus groups with multimorbid patients aged 65 to 85 (n = 21). The participants were recruited from the MultiCare Cohort Study. Focus groups were audiotaped and transcribed verbatim. The transcripts of the focus groups were analysed using the qualitative content analysis according to Mayring. Categories were determined deductively and inductively. The analysis revealed seven themes concerning reasons for disagreement regarding illnesses between patients and their GPs: problems with communication and cooperation between health care professionals, disease management by the GP and the patient, the documentation behaviour of the GP, communication challenges between GP and patient, differences in the understanding of a disease between GP and patient, the prioritization and rating of diseases by GP and patient and obliviousness, repression and avoidance by the patient. For older patients with multimorbidity, our study demonstrated that there is a need to enhance the cooperation between GPs, specialists and outpatient care, a demand to improve doctor-patient communication and a need for interventions to increase patients' knowledge of diseases.

Client perceptions of the mental health engagement network: a qualitative analysis of an electronic personal health record.

PubMed

Forchuk, Cheryl; Reiss, Jeffrey P; O'Regan, Tony; Ethridge, Paige; Donelle, Lorie; Rudnick, Abraham

2015-10-14

Information technologies such as websites, mobile phone applications, and virtual reality programs have been shown to deliver innovative and effective treatments for mental illness. Much of the research studying electronic mental health interventions focuses on symptom reduction; however, to facilitate the implementation of electronic interventions in usual mental health care, it is also important to investigate the perceptions of clients who will be using the technologies. To this end, a qualitative analysis of focus group discussions regarding the Mental Health Engagement Network, a web-based personal health record and smartphone intervention, is presented here. Individuals living in the community with a mood or psychotic disorder (n = 394) were provided with a smartphone and access to an electronic personal health record, the Lawson SMART Record, for 12 to 18 months to manage their mental health. This study employed a delayed-implementation design and obtained both quantitative and qualitative data through individual interviews and focus group sessions. Participants had the opportunity to participate in voluntary focus group sessions at three points throughout the study to discuss their perceptions of the technologies. Qualitative data from 95 focus group participants were analysed using a thematic analysis. Four overarching themes emerged from focus group discussions: 1) Versatile functionality of the Lawson SMART Record and smartphone facilitated use; 2) Aspects of the technologies as barriers to use; 3) Use of the Mental health Engagement Network technologies resulted in perceived positive outcomes; 4) Future enhancement of the Lawson SMART Record and intervention is recommended. These qualitative data provide a valuable contribution to the understanding of how smarttechnologies can be integrated into usual mental health care. Smartphones are extremely portable andcommonplace in society. Therefore, clients can use these devices to manage and track mental

Designing and evaluating an electronic patient falls reporting system: perspectives for the implementation of health information technology in long-term residential care facilities.

PubMed

Mei, Yi You; Marquard, Jenna; Jacelon, Cynthia; DeFeo, Audrey L

2013-11-01

Patient falls are the leading cause of unintentional injury and death among older adults. In 2000, falls resulted in over 10,300 elderly deaths, costing the United States approximately $179 million in incidence and medical costs. Furthermore, non-fatal injuries caused by falls cost the United States $19 billion annually. Health information technology (IT) applications, specifically electronic falls reporting systems, can aid quality improvement efforts to prevent patient falls. Yet, long-term residential care facilities (LTRCFs) often do not have the financial resources to implement health IT, and workers in these settings are often not ready to adopt such systems. Additionally, most health IT evaluations are conducted in large acute-care settings, so LTRCF administrators currently lack evidence to support the value of health IT. In this paper, we detail the development of a novel, easy-to-use system to facilitate electronic patient falls reporting within a LTRCF using off-the-shelf technology that can be inexpensively implemented in a wide variety of settings. We report the results of four complimentary system evaluation measures that take into consideration varied organizational stakeholders' perspectives: (1) System-level benefits and costs, (2) system usability, via scenario-based use cases, (3) a holistic assessment of users' physical, cognitive, and marcoergonomic (work system) challenges in using the system, and (4) user technology acceptance. We report the viability of collecting and analyzing data specific to each evaluation measure and detail the relative merits of each measure in judging whether the system is acceptable to each stakeholder. The electronic falls reporting system was successfully implemented, with 100% reporting at 3-months post-implementation. The system-level benefits and costs approach showed that the electronic system required no initial investment costs aside from personnel costs and significant benefits accrued from user time savings

What perceptions do patients have of decision making (DM)? Toward an integrative patient-centered care model. A qualitative study using focus-group interviews.

PubMed

Moreau, Alain; Carol, Laurent; Dedianne, Marie Cécile; Dupraz, Christian; Perdrix, Corinne; Lainé, Xavier; Souweine, Gilbert

2012-05-01

To understand patients' perceptions of decision making and identify relationships among decision-making models. This qualitative study was made up of four focus group interviews (elderly persons, users of health support groups, students, and rural inhabitants). Participants were asked to report their perceptions of decision making in three written clinical scenarios (hypertension, breast cancer, prostate cancer). The analysis was based on the principles of grounded theory. Most patients perceived decision making as shared decision making, a deliberative question-response interaction with the physician that allowed patients to be experts in obtaining clearer information, participating in the care process, and negotiating compromises with physician preferences. Requesting second opinions allowed patients to maintain control, even within the paternalistic model preferred by elderly persons. Facilitating factors (trust, qualitative non-verbal communication, time to think) and obstacles (serious/emergency situations, perceived inadequate scientific competence, problems making requests, fear of knowing) were also part of shared decision making. In the global concept of patient-centered care, shared decision making can be flexible and can integrate paternalistic and informative models. Physicians' expertise should be associated with biomedical and relational skills through listening to, informing, and advising patients, and by supporting patients' choices. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

Physiotherapy for Patients with Sciatica Awaiting Lumbar Micro‐discectomy Surgery: A Nested, Qualitative Study of Patients' Views and Experiences

PubMed Central

Newsome, Ruth; Reddington, Michael; Cole, Ashley; Dimairo, Munyaradzi

2016-01-01

Abstract Background and Purpose Sciatica is a common clinical condition that can be extremely painful, disabling and life‐changing. Whether conservative or surgical treatment for sciatica secondary to an intervertebral disc prolapse is most effective is still much debated. An important component of conservative treatment is physiotherapy, which aims to promote physical and psychological health for the patient, whilst resorption of the disc takes place. This paper reports a qualitative study of patients' views and experiences of a bespoke physiotherapy intervention for the treatment of sciatica. Methods A qualitative study nested within a pilot randomized controlled trial of bespoke physiotherapy for the treatment of patients with sciatica awaiting lumbar microdiscectomy surgery. Patients randomized to receive bespoke physiotherapy in the intervention arm of the trial were invited to take part in semi‐structured interviews. Twenty‐one in‐depth, semi‐structured interviews took place. All interviews were recorded, fully transcribed and thematically analysed. Results Most patients in the sample found the physiotherapy valuable, appreciating the individual nature of the approach, the exercises to reduce pain and discomfort, techniques for improving functional spinal movement, walking and dynamic posture, and manual therapy and cardiovascular exercise. A small number did not find the physiotherapy of benefit. Sixteen patients in the sample went on to proceed with surgery, but most of these found value in having had the physiotherapy first. Discussion Many patients with sciatica appreciate the value of physiotherapy prior to surgery. Future research should examine patients' experiences of bespoke physiotherapy delivered within primary care. Copyright © 2016 The Authors Physiotherapy Research International published by John Wiley & Sons Ltd. PMID:26914525

Physiotherapy for Patients with Sciatica Awaiting Lumbar Micro-discectomy Surgery: A Nested, Qualitative Study of Patients' Views and Experiences.

PubMed

Boote, Jonathan; Newsome, Ruth; Reddington, Michael; Cole, Ashley; Dimairo, Munyaradzi

2017-07-01

Sciatica is a common clinical condition that can be extremely painful, disabling and life-changing. Whether conservative or surgical treatment for sciatica secondary to an intervertebral disc prolapse is most effective is still much debated. An important component of conservative treatment is physiotherapy, which aims to promote physical and psychological health for the patient, whilst resorption of the disc takes place. This paper reports a qualitative study of patients' views and experiences of a bespoke physiotherapy intervention for the treatment of sciatica. A qualitative study nested within a pilot randomized controlled trial of bespoke physiotherapy for the treatment of patients with sciatica awaiting lumbar microdiscectomy surgery. Patients randomized to receive bespoke physiotherapy in the intervention arm of the trial were invited to take part in semi-structured interviews. Twenty-one in-depth, semi-structured interviews took place. All interviews were recorded, fully transcribed and thematically analysed. Most patients in the sample found the physiotherapy valuable, appreciating the individual nature of the approach, the exercises to reduce pain and discomfort, techniques for improving functional spinal movement, walking and dynamic posture, and manual therapy and cardiovascular exercise. A small number did not find the physiotherapy of benefit. Sixteen patients in the sample went on to proceed with surgery, but most of these found value in having had the physiotherapy first. Many patients with sciatica appreciate the value of physiotherapy prior to surgery. Future research should examine patients' experiences of bespoke physiotherapy delivered within primary care. Copyright © 2016 The Authors Physiotherapy Research International published by John Wiley & Sons Ltd. Copyright © 2016 The Authors Physiotherapy Research International published by John Wiley & Sons Ltd.

Patient expectations of treatment for back pain: a systematic review of qualitative and quantitative studies.

PubMed

Verbeek, Jos; Sengers, Marie-José; Riemens, Linda; Haafkens, Joke

2004-10-15

A systematic review of qualitative and quantitative studies. To summarize evidence from studies among patients with low back pain on their expectations and satisfaction with treatment as part of practice guideline development. Patients are often dissatisfied with treatment for acute or chronic back pain. We searched the literature for studies on patient expectations and satisfaction with treatment for low back pain. Treatment aspects related to expectations or satisfaction were identified in qualitative studies. Percentages of dissatisfied patients were calculated from quantitative studies. Twelve qualitative and eight quantitative studies were found. Qualitative studies revealed the following aspects that patient expectation from treatment for back pain or with which they are dissatisfied. Patients want a clear diagnosis of the cause of their pain, information and instructions, pain relief, and a physical examination. Next, expectations are that there are more diagnostic tests, other therapy or referrals to specialists, and sickness certification. They expect confirmation from the healthcare provider that their pain is real. Like other patients, they want a confidence-based association that includes understanding, listening, respect, and being included in decision-making. The results from qualitative studies are confirmed by quantitative studies. Patients have explicit expectations on diagnosis, instructions, and interpersonal management. New strategies need to be developed in order to meet patients' expectations better. Practice guidelines should pay more attention to the best way of discussing the causes and diagnosis with the patient and should involve them in the decision-making process.

A Qualitative Description of Chronic Neck Pain has Implications for Outcome Assessment and Classification

PubMed Central

MacDermid, Joy C.; Walton, David M.; Bobos, Pavlos; Lomotan, Margaret; Carlesso, Lisa

2016-01-01

Background: Neck pain is common, but few studies have used qualitative methods to describe it. Purpose: To describe the quality, distribution and behavior of neck pain. Methods: Sixteen people (15 females; mean age = 33 years (range = 20-69)) with neck pain >3 months were interviewed using a semi-structured guide. Interview data were recorded and transcribed verbatim. Descriptive content analysis was performed by two authors. Participants then completed an electronic descriptive pain tool, placing icons (word and icon descriptors to describe quality) on anatomic diagrams to identify location of pain, and intensity ratings at each location. This data was triangulated with interviews. Results: Aching pain and stiffness in the posterior neck and shoulder region were the most common pain complaints. All patients reported more than one pain quality. Associated headache was common (11/16 people); but varied in location and pain quality; 13/16 reported upper extremity symptoms. Neuropathic characteristics (burning) or sensory disturbance (numbness/tingling) occurred in some patients, but were less common. Activities that involved lifting/carrying and psychological stress were factors reported as exacerbating pain. Physical activity was valued as essential to function, but also instigated exacerbations. Concordance between the structured pain tool and interviews enhanced trustworthiness of our results. Integrating qualitative findings with a previous classification system derived a 7-axis neck pain classification: source/context, sample subgroup, distribution, duration, episode pattern, pain/symptom severity, disability/participation restriction. Conclusions: Qualitative assessment and classification should consider the multiple dimensions of neck pain. PMID:28217199

Patient-focused goal planning process and outcome after spinal cord injury rehabilitation: quantitative and qualitative audit.

PubMed

Byrnes, Michelle; Beilby, Janet; Ray, Patricia; McLennan, Renee; Ker, John; Schug, Stephan

2012-12-01

To evaluate the process and outcome of a multidisciplinary inpatient goal planning rehabilitation programme on physical, social and psychological functioning for patients with spinal cord injury. Clinical audit: quantitative and qualitative analyses. Specialist spinal injury unit, Perth, Australia. Consecutive series of 100 newly injured spinal cord injury inpatients. MAIN MEASURE(S): The Needs Assessment Checklist (NAC), patient-focused goal planning questionnaire and goal planning progress form. The clinical audit of 100 spinal cord injured patients revealed that 547 goal planning meetings were held with 8531 goals stipulated in total. Seventy-five per cent of the goals set at the first goal planning meeting were achieved by the second meeting and the rate of goal achievements at subsequent goal planning meetings dropped to 56%. Based on quantitative analysis of physical, social and psychological functioning, the 100 spinal cord injury patients improved significantly from baseline to discharge. Furthermore, qualitative analysis revealed benefits consistently reported by spinal cord injury patients of the goal planning rehabilitation programme in improvements to their physical, social and psychological adjustment to injury. The findings of this clinical audit underpin the need for patient-focused goal planning rehabilitation programmes which are tailored to the individual's needs and involve a comprehensive multidisciplinary team.

The perspective of healthcare providers and patients on health literacy: a systematic review of the quantitative and qualitative studies.

PubMed

Rajah, Retha; Ahmad Hassali, Mohamed Azmi; Jou, Lim Ching; Murugiah, Muthu Kumar

2018-03-01

Health literacy (HL) is a multifaceted concept, thus understanding the perspective of healthcare providers, patients, and the system is vital. This systematic review examines and synthesises the available studies on HL-related knowledge, attitude, practice, and perceived barriers. CINAHL and Medline (via EBSCOhost), Google Scholar, PubMed, ProQuest, Sage Journals, and Science Direct were searched. Both quantitative and/or qualitative studies in the English language were included. Intervention studies and studies focusing on HL assessment tools and prevalence of low HL were excluded. The risk of biasness reduced with the involvement of two reviewers independently assessing study eligibility and quality. A total of 30 studies were included, which consist of 19 quantitative, 9 qualitative, and 2 mixed-method studies. Out of 17 studies, 13 reported deficiency of HL-related knowledge among healthcare providers and 1 among patients. Three studies showed a positive attitude of healthcare providers towards learning about HL. Another three studies demonstrated patients feel shame exposing their literacy and undergoing HL assessment. Common HL communication techniques reported practiced by healthcare providers were the use of everyday language, teach-back method, and providing patients with reading materials and aids, while time constraint was the most reported HL perceived barriers by both healthcare providers and patients. Significant gaps exists in HL knowledge among healthcare providers and patients that needs immediate intervention. Such as, greater effort placed in creating a health system that provides an opportunity for healthcare providers to learn about HL and patients to access health information with taking consideration of their perceived barriers.

Understanding Long-Term Outcomes and Patient Expectations Among Adolescents with Neonatal Brachial Plexus Palsy: A Qualitative and Quantitative Study

PubMed Central

Squitieri, Lee; Larson, Bradley P.; Chang, Kate W-C.; Yang, Lynda J-S.; Chung, Kevin C.

2014-01-01

Purpose Quality of life (QOL) among adolescents with neonatal brachial plexus palsy (NBPP) is an important but unexplored topic. To date, few NBPP studies use comprehensive patient-reported outcome measures, and none specifically address the adolescent population. This study explores the long-term QOL and patient expectations among adolescents with NBPP using qualitative and quantitative approaches. Methods Eighteen adolescents with residual NBPP impairment between the ages of 10 to 17 years along with their parents were included in our study. Adolescents and their parents underwent separate one hour tape-recorded semi-structured interviews, which were audio recorded and transcribed. We also collected quantitative patient outcome measures to quantify the degree of each adolescent’s functional impairment and to increase our understanding of long-term quality of life and patient expectations. Results Thirteen females and five males with a mean age of 11.6 years participated in our study. Through qualitative analysis we identified the following factors contributing to overall QOL from the patient and parent perspective: social impact and peer acceptance, emotional adjustment, aesthetic concerns and body image, functional limitations, physical and occupational therapy, finances, pain, and family dynamics. Despite residual impairment, most adolescents and their parents reported a good overall QOL according to quantitative outcome measures, with adolescents reporting slightly higher QOL than their parents. However, both adolescents and their parents report relatively modest satisfaction with their current condition and express expectations for improvement in multiple areas. Discussion Understanding patient expectations and QOL in NBPP adolescents are essential for medical decision-making and advancing care. Our study results showed that functional and aesthetic factors were responsible for the majority of observed differences in QOL among NBPP adolescents. We also

Cancer Patients' Informational Needs: Qualitative Content Analysis.

PubMed

Heidari, Haydeh; Mardani-Hamooleh, Marjan

2016-12-01

Understanding the informational needs of cancer patients is a requirement to plan any educative care program for them. The aim of this study was to identify Iranian cancer patients' perceptions of informational needs. The study took a qualitative approach. Semi-structured interviews were held with 25 cancer patients in two teaching hospitals in Iran. Transcripts of the interviews underwent conventional content analysis, and categories were extracted. The results came under two main categories: disease-related informational needs and information needs related to daily life. Disease-related informational needs had two subcategories: obtaining information about the nature of disease and obtaining information about disease prognosis. Information needs related to daily life also had two subcategories: obtaining information about healthy lifestyle and obtaining information about regular activities of daily life. The findings provide deep understanding of cancer patients' informational needs in Iran.

Development of a patient-centred, patient-reported outcome measure (PROM) for post-stroke cognitive rehabilitation: qualitative interviews with stroke survivors to inform design and content.

PubMed

Patchick, Emma L; Horne, Maria; Woodward-Nutt, Kate; Vail, Andy; Bowen, Audrey

2015-12-01

Improving cognition is service users' top research priority for life after stroke, and future research should include outcomes that they deem important. Patient perspectives on outcomes are collected using patient-reported outcome measures (PROMs). There is currently no patient-centred PROM specific for cognitive rehabilitation trials. Inform PROM development by exploring stroke survivor perspectives on the important, measurable impacts of persisting post-stroke cognitive problems. Qualitative semi-structured interviews in participants' homes. Purposive sample of 16 cognitively impaired stroke survivors at least six months post-stroke. Interviews used a schedule and communication aids developed through patient consultation. Interviews were transcribed verbatim with non-verbal communication recorded using field notes. Data were analysed using a framework approach to find commonalities to shape the focus and content of an outcome measure. Participants identified important impacts of their 'invisible' cognitive problems, outside of other stroke-related impairments. Cognitive problems exacerbated emotional issues and vice versa. Changes in self-identity and social participation were prominent. Impact was not spoken about in terms of frequency but rather in terms of the negative affect associated with problems; terms like 'bothered' and 'frustration' were often used. The results support the development of a PROM specifically designed to address the impact of cognitive problems. It should: include items addressing a comprehensive range of cognitive skills; ask questions about mood, self-identity and social participation; use accessible wording that respondents understand and endorse; measure impact rather than frequency; and explore perceived impact on carers. © 2014 John Wiley & Sons Ltd.

Electronic data collection for the analysis of surgical maneuvers on patients submitted to rhinoplasty

PubMed Central

Berger, Cezar; Freitas, Renato; Malafaia, Osvaldo; Pinto, José Simão de Paula; Mocellin, Marcos; Macedo, Evaldo; Fagundes, Marina Serrato Coelho

2012-01-01

Summary Introduction: In the health field, computerization has become increasingly necessary in professional practice, since it facilitates data recovery and assists in the development of research with greater scientific rigor. Objective: the present work aimed to develop, apply, and validate specific electronic protocols for patients referred for rhinoplasty. Methods: The prospective research had 3 stages: (1) preparation of theoretical data bases; (2) creation of a master protocol using Integrated System of Electronic Protocol (SINPE©); and (3) elaboration, application, and validation of a specific protocol for the nose and sinuses regarding rhinoplasty. Results: After the preparation of the master protocol, which dealt with the entire field of otorhinolaryngology, we idealized a specific protocol containing all matters related to the patient. In particular, the aesthetic and functional nasal complaints referred for surgical treatment (i.e., rhinoplasty) were organized into 6 main hierarchical categories: anamnesis, physical examination, complementary exams, diagnosis, treatment, and outcome. This protocol utilized these categories and their sub-items: finality; access; surgical maneuvers on the nasal dorsum, tip, and base; clinical evolution after 3, 6, and 12 months; revisional surgery; and quantitative and qualitative evaluations. Conclusion: The developed electronic-specific protocol is feasible and important for information registration from patients referred to rhinoplasty. PMID:25991979

Privacy vs usability: a qualitative exploration of patients' experiences with secure Internet communication with their general practitioner.

PubMed

Tjora, Aksel; Tran, Trung; Faxvaag, Arild

2005-05-31

Direct electronic communication between patients and physicians has the potential to empower patients and improve health care services. Communication by regular email is, however, considered a security threat in many countries and is not recommended. Systems which offer secure communication have now emerged. Unlike regular email, secure systems require that users authenticate themselves. However, the authentication steps per se may become barriers that reduce use. The objective was to study the experiences of patients who were using a secure electronic communication system. The focus of the study was the users' privacy versus the usability of the system. Qualitative interviews were conducted with 15 patients who used a secure communication system (MedAxess) to exchange personal health information with their primary care physician. Six main themes were identified from the interviews: (1) supporting simple questions, (2) security issues, (3) aspects of written communication, (4) trust in the physician, (5) simplicity of MedAxess, and (6) trouble using the system. By using the system, about half of the patients (8/15) experienced easier access to their physician, with whom they tended to solve minor health problems and elaborate on more complex illness experiences. Two thirds of the respondents (10/15) found that their physician quickly responded to their MedAxess requests. As a result of the security barriers, the users felt that the system was secure. However, due to the same barriers, the patients considered the log-in procedure cumbersome, which had considerable negative impact on the actual use of the system. Despite a perceived need for secure electronic patient-physician communication systems, security barriers may diminish their overall usefulness. A dual approach is necessary to improve this situation: patients need to be better informed about security issues, and, at the same time, their experiences of using secure systems must be studied and used to improve

Exception reporting in the Quality and Outcomes Framework: views of practice staff - a qualitative study.

PubMed

Campbell, Stephen; Hannon, Kerin; Lester, Helen

2011-04-01

Exception reporting allows practices to exclude eligible patients from indicators or an entire clinical domain of the Quality and Outcomes Framework (QOF). It is a source of contention, viewed by some as a 'gaming' mechanism. To explore GP and practice staff views and experiences of exception reporting in the QOF. Qualitative semi-structured interviews. Interviews with 24 GPs, 20 practice managers, 13 practice nurses, and nine other staff were conducted in 27 general practices in the UK. Semi-structured interviews, analysed using open explorative thematic coding. Exception reporting was seen as a clinically necessary part of the QOF. Exempting patients, particularly for discretionary reasons, was seen as an 'exception to the rule' that was justified either in terms of practising patient-centred care within a framework of population-based health measures or because of the poor face validity of the indicators. Rates in all practices were described as minimal and the threat of external scrutiny from primary care trusts kept rates low. However, GPs were happy to defend using discretionary exception codes for individual patients. Exception reporting was used, particularly at the end of the payment year, to meet unmet targets and to prevent the practice being penalised financially. Overt gaming was seen as something done by 'other' practices. Only two GPs admitted to occasional inappropriate exception reporting. Exception reporting is seen by most GPs and practice staff as an important and defensible safeguard against inappropriate treatment or over-treatment of patients. However, a minority of practitioners also saw it as a gaming mechanism.

Understanding adherence-related beliefs about medicine amongst patients of South Asian origin with diabetes and cardiovascular disease patients: a qualitative synthesis.

PubMed

Kumar, Kanta; Greenfield, Sheila; Raza, Karim; Gill, Paramjit; Stack, Rebecca

2016-05-26

Prevalence of diabetes and cardiovascular (CVD) disease amongst UK South Asians is higher than in the general population. Non-adherence to medicines may lead to poor clinical outcomes for South Asian patients with diabetes and CVD. To understand the decision making processes associated with taking medicines, a qualitative systematic meta-synthesis exploring medicine taking behaviours, and beliefs was undertaken. Four databases (Medline, Embase, Science Citation Index and CINAHL) were searched to identify qualitative studies of South Asian patients taking diabetic medicines. Data were thematic coded and synthesised. The following themes were identified: [1] beliefs about the need for and efficacy of medicines; [2] toxicity of medicines and polypharmacy; [3] the necessity of traditional remedies versus "western medicines"; [4] stigma and social support; and [5] communication. South Asians described cultural social stigma associated with diabetes and reported fears about drug toxicity as barriers to taking medicines. Cultural beliefs about traditional remedies and interactions with healthcare professionals also appeared to play a role in the way people made decisions about medicines. Advice should be tailored provided to South Asian patients highlighting the long term consequences of diabetes and CVD.

Effectiveness of rifampicin chemoprophylaxis in preventing leprosy in patient contacts: a systematic review of quantitative and qualitative evidence.

PubMed

Ferreira, Silvana Margarida Benevides; Yonekura, Tatiana; Ignotti, Eliane; Oliveira, Larissa Bertacchini de; Takahashi, Juliana; Soares, Cassia Baldini

2017-10-01

Individuals in contact with patients who have leprosy have an increased risk of disease exposure, which reinforces the need for chemoprophylactic measures, such as the use of rifampicin. The objective of the review was to synthesize the best available evidence regarding the effectiveness of rifampicin chemoprophylaxis for contacts with patients with leprosy, and to synthesize the best available evidence on the experience and acceptability of rifampicin chemoprophylaxis as reported by the contacts and health professionals involved in the treatment of leprosy or Hansen's disease. In the quantitative component, individuals in contact with leprosy patients were included. In the qualitative component, in addition to contacts, health professionals who were in the practice of treating leprosy were included. The quantitative component considered as an intervention rifampicin at any dose, frequency and mode of administration, and rifampicin combination regimens.The qualitative component considered as phenomena of interest the experience and acceptability of rifampicin chemoprophylaxis. The quantitative component considered experimental and observational studies whereas the qualitative component considered studies that focused on qualitative data, including but not limited to, designs such as phenomenology, grounded theory, ethnography and action-research. The quantitative component considered studies that reported on outcomes such as the development of clinical leprosy in the contacts of patients who had leprosy, incidence rates, adverse effects and safety/harmful effects of the intervention. A three-step strategy for published and unpublished literature was used. The search for published studies included: PubMed, Cumulative Index to Nursing and Allied Health Literature, Cochrane Library, Scopus, Web of Science, National Institute for Health and Clinical Excellence, Latin American and Caribbean Health Sciences Literature; and Google Scholar and EVIPnet for unpublished

Is the qualitative research interview an acceptable medium for research with palliative care patients and carers?

PubMed Central

Gysels, Marjolein; Shipman, Cathy; Higginson, Irene J

2008-01-01

Background Contradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview. Methods A descriptive qualitative study. The data were collected in the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study. Results The interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible. Conclusion The open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. PMID:18435846

Assessment of data quality of and staff satisfaction with an electronic health record system in a developing country (Uganda): a qualitative and quantitative comparative study.

PubMed

Ndira, S P; Rosenberger, K D; Wetter, T

2008-01-01

To assess if electronic health record systems in developing countries can improve on timeliness, availability and accuracy of routine health reports and staff satisfaction after introducing the electronic system, compared to the paper-based alternative. The research was conducted with hospital staff of Tororo District Hospital in Uganda. A comparative intervention study with qualitative and quantitative methods was used to compare the paper-based (pre-test) to the electronic system (post-test) focusing on accuracy, availability and timeliness of monthly routine reports about mothers visiting the hospital; and staff satisfaction with the electronic system as outcome measures. Timeliness: pre-test 13 of 19 months delivered to the district timely, delivery dates for six months could not be established; post-test 100%. pre-test 79% of reports were present at the district health office; post-test 100%. Accuracy: pre-test 73.2% of selected reports could be independently confirmed as correct; post-test 71.2%. Difficulties were encountered in finding enough mothers through direct follow up to inquire on accuracy of information recorded about them. Staff interviews showed that the electronic system is appreciated by the majority of the hospital staff. Remaining obstacles include staff workload, power shortages, network breakdowns and parallel data entry (paper-based and electronic). While timeliness and availability improved, improvement of accuracy could not be established. Better approaches to ascertaining accuracy have to be devised, e.g. evaluation of intended use. For success, organizational, managerial and social challenges must be addressed beyond technical aspects.

Prostate Cancer Patient Perspectives on the Use of Information in Treatment Decision-Making: A Systematic Review and Qualitative Meta-synthesis

PubMed Central

Kandasamy, Sujane; Khalid, Ahmad Firas; Majid, Umair; Vanstone, Meredith

2017-01-01

Background Men with low- to intermediate-risk prostate cancer are typically asked to choose from a variety of treatment options, including active surveillance, radical prostatectomy, or brachytherapy. The Prolaris cell cycle progression test is intended to provide additional information on personal risk status to assist men with prostate cancer in their choice of treatment. To assist with assessing that new technology, this report synthesizes qualitative research on how men with prostate cancer use information to make decisions about treatment options. Methods We performed a systematic review and qualitative meta-synthesis to retrieve and synthesize findings across primary qualitative studies that report on patient perspectives during prostate cancer treatment decision-making. Results Of 8,610 titles and abstracts reviewed, 29 studies are included in this report. Most men diagnosed with prostate cancer express that their information-seeking pathway extends beyond the medical information received from their health care provider. They access other social resources to attain additional medical information, lived-experience information, and medical administrative information to help support their final treatment decision. Men value privacy, trust, honesty, control, power, organization, and open communication during interactions with their health care providers. They also emphasize the importance of gaining comfort with their treatment choice, having a chance to confirm their health care provider's recommendations (validation of treatment plan), and exercising their preferred level of independence in the treatment decision-making process. Conclusions Although each prostate cancer patient is unique, studies suggest that most patients seek extensive information to help inform their treatment decisions. This may happen before, during, and after the treatment choice is made. Given the amount of information patients may access, it is important that they also establish the

Management of a patient's gait abnormality using smartphone technology in-clinic for improved qualitative analysis: A case report.

PubMed

VanWye, William R; Hoover, Donald L

2018-05-01

Qualitative analysis has its limitations as the speed of human movement often occurs more quickly than can be comprehended. Digital video allows for frame-by-frame analysis, and therefore likely more effective interventions for gait dysfunction. Although the use of digital video outside laboratory settings, just a decade ago, was challenging due to cost and time constraints, rapid use of smartphones and software applications has made this technology much more practical for clinical usage. A 35-year-old man presented for evaluation with the chief complaint of knee pain 24 months status-post triple arthrodesis following a work-related crush injury. In-clinic qualitative gait analysis revealed gait dysfunction, which was augmented by using a standard IPhone® 3GS camera. After video capture, an IPhone® application (Speed Up TV®, https://itunes.apple.com/us/app/speeduptv/id386986953?mt=8 ) allowed for frame-by-frame analysis. Corrective techniques were employed using in-clinic equipment to develop and apply a temporary heel-to-toe rocker sole (HTRS) to the patient's shoe. Post-intervention video revealed significantly improved gait efficiency with a decrease in pain. The patient was promptly fitted with a permanent HTRS orthosis. This intervention enabled the patient to successfully complete a work conditioning program and progress to job retraining. Video allows for multiple views, which can be further enhanced by using applications for frame-by-frame analysis and zoom capabilities. This is especially useful for less experienced observers of human motion, as well as for establishing comparative signs prior to implementation of training and/or permanent devices.

Access to cardiac rehabilitation among South-Asian patients by referral method: a qualitative study.

PubMed

Grewal, Keerat; Leung, Yvonne W; Safai, Parissa; Stewart, Donna E; Anand, Sonia; Gupta, Milan; Parsons, Cynthia; Grace, Sherry L

2010-01-01

People of South-Asian origin have an increased prevalence of coronary artery disease. Although cardiac rehabilitation (CR) is effective, South Asians are among the least likely people to participate in these programs. Automatic referral increases CR use and may reduce access inequalities. This study qualitatively explored whether CR referral knowledge and access varied among South-Asian patients. Participants were South-Asian cardiac patients receiving treatment at hospitals in Ontario, Canada. Each hospital refers to CR via one offour methods: automatically through paper or electronically, through discussion with allied health professionals (liaison referral), or through referral at the physician's discretion. Data were collected via interviews and analyzed using interpretive-descriptive analysis. Four themes emerged: the importance of predischarge CR discussions with healthcare providers, limited knowledge of CR, ease of the referral process for facilitators of CR attendance, and participants'needs for personal autonomy regarding their decision to attend CR. Liaison referral was perceived to be the most suitable referral method for participants. It facilitated communication between patients and providers, ensuring improved understanding of CR. Automatic referral may not be as well suited to this population because of reduced patient-provider communication.

Community Nursing Care of Chinese-Australian Cancer Patients: A Qualitative Study.

PubMed

McKenzie, Heather; Kwok, Cannas; Tsang, Heidi; Moreau, Elizabeth

2015-01-01

Providing quality care and support to cancer patients from minority cultures can challenge community nurses when language barriers and cultural complexities intersect with the need for complex care. This article reports on a qualitative study that explores interactions between community nurses and Chinese-Australian cancer patients. The research method focused on particular nurse-patient encounters and involved preencounter and postencounter interviews with the nurse, postencounter interviews with the patient, and observation of the encounters. Participants included community nurses, Chinese cancer patients being cared for at home, and their carers if present. Four themes were conceptualized: (1) the impact of language barriers on nurse-patient interactions, (2) patient understandings of the scope and objectives of healthcare services, (3) cultural complexities and sensitivities, and (4) valued care and support. The study demonstrates that, although many nurses do provide comprehensive, culturally competent care, language barriers can lead to task-oriented rather than comprehensive approaches, and other cultural complexities do have an impact on patient experiences and on the quality of nurse-patient interactions. Nevertheless, most patient participants experienced a feeling of security as a result of regular contact with a community nursing service. Cancer patients with complex care needs but limited English proficiency require support to negotiate complicated community services networks. Culturally competent community nurses can provide this support. The study highlights the need for continuing cultural competence education for community nurses and the importance of careful discharge planning to ensure continuity of care for this vulnerable patient group.

"Sometimes You Feel Like the Freak Show": A Qualitative Assessment of Emergency Care Experiences Among Transgender and Gender-Nonconforming Patients.

PubMed

Samuels, Elizabeth A; Tape, Chantal; Garber, Naomi; Bowman, Sarah; Choo, Esther K

2018-02-01

Transgender, gender-variant, and intersex (trans) people have decreased access to care and poorer health outcomes compared with the general population. Little has been studied and documented about such patients' emergency department (ED) experiences and barriers to care. Using survey and qualitative research methods, this study aims to identify specific areas for improvement and generate testable hypotheses about the barriers and challenges for trans individuals needing acute care. A survey and 4 focus groups were conducted with trans individuals older than 18 years who had been to an ED in the last 5 years. Participants were recruited by trans e-mail listservs; outreach to local trans organizations; and lesbian, gay, bisexual, and transgender periodical advertisements. The interview guide was reviewed by qualitative research and trans health content experts. Deidentified participant demographic information was collected with a standardized instrument. All discussions were captured on digital audio recorders and professionally transcribed. Interview coding and thematic analysis were conducted with a grounded theory approach. Among 32 participants, 71.9% were male identified and 78.1% were white. Nearly half (43.8%) reported avoiding the ED when they needed acute care. The factors that had the greatest influence on ED avoidance were fear of discrimination, length of wait, and negative previous experiences. There were 4 overarching discussion themes: system structure, care competency, discrimination and trauma, and avoidance of emergency care. Improvement recommendations focused on staff and provider training about gender and trans health, assurance of private gender identity disclosure, and accurate capture of sex, gender, and sexual orientation information in the electronic medical record. Efforts to improve trans ED experiences should focus on provider competency and communication training, electronic medical record modifications, and assurance of private means

Microstructural study of the nickel-base alloy WAZ-20 using qualitative and quantitative electron optical techniques

NASA Technical Reports Server (NTRS)

Young, S. G.

1973-01-01

The NASA nickel-base alloy WAZ-20 was analyzed by advanced metallographic techniques to qualitatively and quantitatively characterize its phases and stability. The as-cast alloy contained primary gamma-prime, a coarse gamma-gamma prime eutectic, a gamma-fine gamma prime matrix, and MC carbides. A specimen aged at 870 C for 1000 hours contained these same constituents and a few widely scattered high W particles. No detrimental phases (such as sigma or mu) were observed. Scanning electron microscope, light metallography, and replica electron microscope methods are compared. The value of quantitative electron microprobe techniques such as spot and area analysis is demonstrated.

Electronic witness system in IVF-patients perspective.

PubMed

Forte, Marina; Faustini, Federica; Maggiulli, Roberta; Scarica, Catello; Romano, Stefania; Ottolini, Christian; Farcomeni, Alessio; Palagiano, Antonio; Capalbo, Antonio; Ubaldi, Filippo Maria; Rienzi, Laura

2016-09-01

The objective of this study is to evaluate patient concerns about in vitro fertilization (IVF) errors and electronic witness systems (EWS) satisfaction. The design of this study is a prospective single-center cohort study. The setting of this study was located in the private IVF center. Four hundred eight infertile patients attending an IVF cycle at a GENERA center in Italy were equipped with an EWS. Although generally recognized as a very rare event in IVF, biological sample mix-up has been reported in the literature. For this reason, some IVF laboratories have introduced EWS with the aim to further reduce the risk of error during biological samples handling. Participating patients received a questionnaire developed through a Likert scale ranging from 1 to 6. Patient concerns about sample mix-up without and with an EWS were assessed. 90.4 % of patients expressed significant concerns relating to sample mix-up. The EWS reduced these concerns in 92.1 % of patients, 97.1 % of which were particularly satisfied with the electronic traceability of their gametes and embryos in the IVF laboratory. 97.1 % of patients felt highly comfortable with an IVF center equipped with an EWS. Female patients had a significantly higher appreciation of the EWS when compared to their male partners (p = 0.029). A significant mix-up event occurred in an Italian hospital during the study and patient's satisfaction increased significantly towards the use of the EWS after the event (p = 0.032). EWS, by sensibly reducing the risk for sample mix-up in IVF cycles, has been proved to be a trusted strategy from patient's perspective.

Capturing the experiences of patients across multiple complex interventions: a meta-qualitative approach

PubMed Central

Webster, Fiona; Christian, Jennifer; Mansfield, Elizabeth; Bhattacharyya, Onil; Hawker, Gillian; Levinson, Wendy; Naglie, Gary; Pham, Thuy-Nga; Rose, Louise; Schull, Michael; Sinha, Samir; Stergiopoulos, Vicky; Upshur, Ross; Wilson, Lynn

2015-01-01

Objectives The perspectives, needs and preferences of individuals with complex health and social needs can be overlooked in the design of healthcare interventions. This study was designed to provide new insights on patient perspectives drawing from the qualitative evaluation of 5 complex healthcare interventions. Setting Patients and their caregivers were recruited from 5 interventions based in primary, hospital and community care in Ontario, Canada. Participants We included 62 interviews from 44 patients and 18 non-clinical caregivers. Intervention Our team analysed the transcripts from 5 distinct projects. This approach to qualitative meta-evaluation identifies common issues described by a diverse group of patients, therefore providing potential insights into systems issues. Outcome measures This study is a secondary analysis of qualitative data; therefore, no outcome measures were identified. Results We identified 5 broad themes that capture the patients’ experience and highlight issues that might not be adequately addressed in complex interventions. In our study, we found that: (1) the emergency department is the unavoidable point of care; (2) patients and caregivers are part of complex and variable family systems; (3) non-medical issues mediate patients’ experiences of health and healthcare delivery; (4) the unanticipated consequences of complex healthcare interventions are often the most valuable; and (5) patient experiences are shaped by the healthcare discourses on medically complex patients. Conclusions Our findings suggest that key assumptions about patients that inform intervention design need to be made explicit in order to build capacity to better understand and support patients with multiple chronic diseases. Across many health systems internationally, multiple models are being implemented simultaneously that may have shared features and target similar patients, and a qualitative meta-evaluation approach, thus offers an opportunity for cumulative

Conducting a multicentre and multinational qualitative study on patient transitions.

PubMed

Johnson, Julie K; Barach, Paul; Vernooij-Dassen, Myrra

2012-12-01

A multicentre, multinational research study requires careful planning and coordination to accomplish the aims of the study and to ensure systematic and rigorous examination of all project methods and data collected. The aim of this paper is to describe the approach we used during the HANDOVER Project to develop a multicentre, multinational research project for studying transitions of patient care while creating a community of practice for the researchers. We highlight the process used to assure the quality of a multicentre qualitative study and to create a codebook for data analysis as examples of attending to the community of practice while conducting rigorous qualitative research. Essential elements for the success of this multinational, multilanguage research project included recruiting a strong research team, explicit planning for decision-making processes to be used throughout the project, acknowledging the differences among the study settings and planning the protocols to capitalise upon those differences. Although not commonly discussed in reports of large research projects, there is an underlying, concurrent stream of activities to develop a cohesive team that trusts and respects one another's skills and that engage independent researchers in a group process that contributes to achieving study goals. We discuss other lessons learned and offer recommendations for other teams planning multicentre research.

Patient-Perceived Usefulness of Online Electronic Medical Records: Employing Grounded Theory in the Development of Information and Communication Technologies for Use by Patients Living with Chronic Illness

PubMed Central

Winkelman, Warren J.; Leonard, Kevin J.; Rossos, Peter G.

2005-01-01

Objective: Patient use of online electronic medical records (EMR) holds the potential to improve health outcomes. The purpose of this study is to discover how patients living with chronic inflammatory bowel disease (IBD) value Internet-based patient access to electronic patient records. Design: This was a qualitative, exploratory, descriptive study using in-depth interviews and focus groups of a total of 12 patients with IBD of at least one-year duration at University Health Network, a tertiary care center in Toronto, Ontario. Results: Four themes have been elucidated that comprise a theoretical framework of patient-perceived information and communication technology usefulness: promotion of a sense of illness ownership, of patient-driven communication, of personalized support, and of mutual trust. Conclusions: For patients with chronic IBD, simply providing access to electronic medical records has little usefulness on its own. Useful technology for patients with IBD is multifaceted, self-care promoting, and integrated into the patient's already existing health and psychosocial support infrastructure. The four identified themes can serve as focal points for the evaluation of information technology designed for patient use, thus providing a patient-centered framework for developers seeking to adapt existing EMR systems to patient access and use for the purposes of improving health care quality and health outcomes. Further studies in other populations are needed to enhance generalizability of the emergent theory. PMID:15684128

NASAwide electronic publishing system: Electronic printing and duplicating, stage-2 evaluation report (GSFC)

NASA Technical Reports Server (NTRS)

Tuey, Richard C.; Lane, Robert; Hart, Susan V.

1995-01-01

The NASA Scientific and Technical Information Office was assigned the responsibility to continue with the expansion of the NASAwide networked electronic duplicating effort by including the Goddard Space Flight Center (GSFC) as an additional node to the existing configuration of networked electronic duplicating systems within NASA. The subject of this report is the evaluation of a networked electronic duplicating system which meets the duplicating requirements and expands electronic publishing capabilities without increasing current operating costs. This report continues the evaluation reported in 'NASA Electronic Publishing System - Electronic Printing and Duplicating Evaluation Report' (NASA TM-106242) and 'NASA Electronic Publishing System - Stage 1 Evaluation Report' (NASA TM-106510). This report differs from the previous reports through the inclusion of an external networked desktop editing, archival, and publishing functionality which did not exist with the previous networked electronic duplicating system. Additionally, a two-phase approach to the evaluation was undertaken; the first was a paper study justifying a 90-day, on-site evaluation, and the second phase was to validate, during the 90-day evaluation, the cost benefits and productivity increases that could be achieved in an operational mode. A benchmark of the functionality of the networked electronic publishing system and external networked desktop editing, archival, and publishing system was performed under a simulated daily production environment. This report can be used to guide others in determining the most cost effective duplicating/publishing alternative through the use of cost/benefit analysis and return on investment techniques. A treatise on the use of these techniques can be found by referring to 'NASA Electronic Publishing System -Cost/Benefit Methodology' (NASA TM-106662).

How the internet affects patients' experience of cancer: a qualitative study.

PubMed

Ziebland, Sue; Chapple, Alison; Dumelow, Carol; Evans, Julie; Prinjha, Suman; Rozmovits, Linda

2004-03-06

To explore how men and women with cancer talk about using the internet. Qualitative study using semistructured interviews collected by maximum variation sampling. Respondents recruited throughout the United Kingdom during 2001-2. 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up. Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of "social fitness." Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people's self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness.

Fit for purpose? Using the fit note with patients with chronic pain: a qualitative study

PubMed Central

Wainwright, Elaine; Wainwright, David; Keogh, Edmund; Eccleston, Christopher

2011-01-01

Background Staying in work may benefit patients with chronic pain, but can be difficult for GPs to negotiate with patients and their employers. The new fit note is designed to help this process, but little is known of how it is operating. Aim To explore GPs' views on the fit note, with particular reference to sickness certification for patients with chronic pain. Design and setting Qualitative study using semi-structured interviews in eight primary care trusts in south-west England. Method In-depth interviews with 13 GPs. Results GPs reported that the rationale behind the fit note is sound and that it may help patients with chronic pain to return to work earlier. However, GPs also reported barriers to successful fit note use, including the need to preserve doctor–patient relationships, inconsistent engagement from employers, GPs' lack of specialist occupational health knowledge, issues with fit note training, and whether a new form can achieve cultural shift. Conclusion While doctors agree that good work improves health outcomes, they do not think that fit notes will greatly alter sickness-certification rates without more concerted initiatives to manage the tripartite negotiation between doctor, patient, and employer. PMID:22137416

Inpatient medical errors involving glucose-lowering medications and their impact on patients: review of 2,598 incidents from a voluntary electronic error-reporting database.

PubMed

Amori, Renee E; Pittas, Anastassios G; Siegel, Richard D; Kumar, Sanjaya; Chen, Jack S; Karnam, Suneel; Golden, Sherita H; Salem, Deeb N

2008-01-01

To describe characteristics of inpatient medical errors involving hypoglycemic medications and their impact on patient care. We conducted a cross-sectional analysis of medical errors and associated adverse events voluntarily reported by hospital employees and staff in 21 nonprofit, nonfederal health-care organizations in the United States that implemented a Web-based electronic error-reporting system (e-ERS) between August 1, 2000, and December 31, 2005. Persons reporting the errors determined the level of impact on patient care. The median duration of e-ERS use was 3.1 years, and 2,598 inpatient error reports involved insulin or orally administered hypoglycemic agents. Nursing staff provided 59% of the reports; physicians reported <2%. Approximately two-thirds of the errors (1,693 of 2,598) reached the patient. Errors that caused temporary harm necessitating major treatment or that caused permanent harm accounted for 1.5% of reports (40 of 2,598). Insulin was involved in 82% of reports, and orally administered hypoglycemic agents were involved in 18% of all reports (473 of 2,598). Sulfonylureas were implicated in 51.8% of reports involving oral hypoglycemic agents (9.4% of all reports). An e-ERS provides an accessible venue for reporting and tracking inpatient medical errors involving glucose-lowering medications. Results are limited by potential underreporting of events, particularly by physicians, and variations in the reporter perception of patient harm.

Patient-reported Symptom Experiences in Patients With Carcinoid Syndrome After Participation in a Study of Telotristat Etiprate: A Qualitative Interview Approach.

PubMed

Gelhorn, Heather L; Kulke, Matthew H; O'Dorisio, Thomas; Yang, Qi M; Jackson, Jessica; Jackson, Shanna; Boehm, Kristi A; Law, Linda; Kostelec, Jacqueline; Auguste, Priscilla; Lapuerta, Pablo

2016-04-01

Telotristat etiprate, a tryptophan hydroxylase inhibitor, was previously evaluated in a Phase II randomized, placebo-controlled clinical trial in patients with carcinoid syndrome (CS) and diarrhea not adequately controlled by octreotide. The objective of the current study was to characterize the symptom experiences of patients participating in that trial. Consenting patients participated in one-on-one, qualitative interviews focused on eliciting symptoms they had experienced in association with their CS diagnosis and recollection of symptom changes they experienced while participating in the Phase II trial. Among the 23 patients who participated in the previous 4-week dose-escalation study, 16 were eligible for interviews and 11 participated in the present study. The median time from study completion to the interview was 31 months; 4 of 11 patients were receiving telotristat etiprate in a follow-up, open-label trial at the time of interview. All of the patients (100%) described diarrhea as a symptom of CS, with effects on the emotional, social, and physical aspects of their lives. Improvement in diarrhea during the study was described by 82% of participants, and was very impactful in several patients. Results led to the design and implementation of a larger interview program in Phase III and helped to establish a definition of clinically meaningful change for the clinical development program. The diarrhea associated with CS can have a large impact on daily lives, and patient interviews can characterize and capture clinically meaningful improvements with treatment. ClinicalTrials.gov Identifier: NCT00853047. Copyright © 2016 The Authors. Published by Elsevier Inc. All rights reserved.

Complementary medicine for cancer patients in general practice: qualitative interviews with german general practitioners.

PubMed

Dahlhaus, Anne; Siebenhofer, Andrea; Guethlin, Corina

2015-01-01

The aim of this study was to investigate how general practitioners react when their cancer patients show interest in complementary medicine, and how their reaction is related to their knowledge in the field. We conducted semi-structured interviews with 10 German general practitioners. Interviewees came from 5 different federal states and varied in terms of urban/rural setting, single/joint practice, additional certifications, gender and length of professional experience. Interviews were electronically recorded, transcribed and then analysed using qualitative content analysis according to Mayring. General practitioners feel largely responsible for providing information on complementary medicine to their cancer patients. However, uncertainty and a lack of knowledge concerning CAM lead mainly to reactive responses to patients' needs, and the general practitioners base their recommendations on personal experiences and attitudes. They wish to support their cancer patients and thus, in order to keep their patients' hopes up and maintain a trusting relationship, sometimes support complementary medicine, regardless of their own convictions. Although general practitioners see themselves as an important source of information on complementary medicine for their cancer patients, they also speak of their uncertainties and lack of knowledge. General practitioners would profit from training in complementary medicine enabling them to discuss this topic with their cancer patients in a proactive, open and honest manner. © 2015 S. Karger GmbH, Freiburg

Cardiology Patient Page: Electronic Cigarettes

MedlinePlus

... of the American Heart Association Cardiology Patient Page Electronic Cigarettes Rachel A. Grana , Pamela M. Ling , Neal ... Footnotes References Figures & Tables Info & Metrics eLetters Introduction Electronic cigarettes (E-cigarettes) are devices that deliver nicotine ...

First French experience of ADR reporting by patients after a mass immunization campaign with Influenza A (H1N1) pandemic vaccines: a comparison of reports submitted by patients and healthcare professionals.

PubMed

Durrieu, Geneviève; Palmaro, Aurore; Pourcel, Laure; Caillet, Céline; Faucher, Angeline; Jacquet, Alexis; Ouaret, Shéhérazade; Perault-Pochat, Marie Christine; Kreft-Jais, Carmen; Castot, Anne; Lapeyre-Mestre, Maryse; Montastruc, Jean-Louis

2012-10-01

Available data concerning the contribution of patient adverse drug reaction (ADR) reporting in practice are scarce. Few studies have compared patients' reports with reports from healthcare professionals (HCPs). During the 2009-10 mass immunization campaign with A (H1N1)v2009 pandemic influenza vaccines, a reinforced pharmacovigilance plan was introduced in France according to European Medicines Agency recommendations. For the first time, patients were offered the opportunity to report suspected ADRs to pandemic vaccines directly to regional pharmacovigilance centres. The aim of the study was to compare the characteristics of patient and HCP ADR reports in order to assess the qualitative and quantitative contribution of patient reporting to the French Pharmacovigilance System. All spontaneous ADRs registered into the French Pharmacovigilance Database from 21 October 2009 to 15 June 2010, in which either one of the most frequently administered pandemic vaccines (i.e. Panenza® or Pandemrix®) was involved, were analysed. ADRs were classified as 'serious', 'medically serious' and 'non-serious'. This study focused on 'serious' and 'medically serious' ADRs. An ADR was ranked as 'medically serious' when it required medical intervention or hospitalization within less than 24 hours. In each level of seriousness, frequency of 'unlabelled' ADRs, ADRs of 'special interest', imputability scores and category of ADRs according to Medical Dictionary for Regulatory Activitives (MedDRA®) primary System Organ Class were compared between patient and professional reports. Among the 4746 reports received during the study period, 1006 (21.2%) originated from patients. HCPs reported significantly more 'medically serious' or 'serious' ADRs than patients (15.1% [565/3740] vs 8.4% [85/1006], respectively; p < 0.001). No difference was found in 'unlabelled, serious' ADRs between patients and HCPs (56.5% [n = 13] vs 56.7% [n = 136], respectively). In this first French experience

Use of tablet personal computers for sensitive patient-reported information.

PubMed

Dupont, Alexandra; Wheeler, Jane; Herndon, James E; Coan, April; Zafar, S Yousuf; Hood, Linda; Patwardhan, Meenal; Shaw, Heather S; Lyerly, H Kim; Abernethy, Amy P

2009-01-01

Notebook-style computers (e/Tablets) are increasingly replacing paper methods for collecting patient-reported information. Discrepancies in data between these methods have been found in oncology for sexuality-related questions. A study was performed to formulate hypotheses regarding causes for discrepant responses and to analyze whether electronic data collection adds value over paper-based methods when collecting data on sensitive topics. A total of 56 breast cancer patients visiting Duke Breast Clinic (North Carolina) participated by responding to 12 subscales of 5 survey instruments in electronic (e/Tablet) format and to a paper version of 1 of these surveys, at each visit. Twenty-one participants (38%) provided dissimilar responses on paper and electronic surveys to one item of the Functional Assessment of Cancer Therapy-General (FACT-G) Social Well-Being scale that asked patients to rate their satisfaction with their current sex life. Among these 21 patients were 8 patients who answered the question in the electronic environment, and 13 patients who answered both paper and electronic versions but with different responses. Eleven patients (29%) did not respond to the item on either e/Tablet or paper; 45 patients (80%) answered it on e/Tablet; and 37 patients (66%) responded on the paper version. The e/Tablet electronic system may provide a "safer" environment than paper questionnaires for cancer patients to answer private or highly personal questions on sensitive topics such as sexuality.

Unmet Needs of Patients Feeling Severely Affected by Multiple Sclerosis in Germany: A Qualitative Study

PubMed Central

Golla, Heidrun; Strupp, Julia; Karbach, Ute; Kaiser, Claudia; Ernstmann, Nicole; Pfaff, Holger; Ostgathe, Christoph; Voltz, Raymond

2014-01-01

Abstract Background: The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general. Objective: The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS. Methods: The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients self-reporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis. Results: Unmet needs were identified in the main categories “support of family and friends,” “health care services,” “managing everyday life,” and “maintaining biographical continuity.” Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated. Conclusions: To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professional-patient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support. PMID:24527993

Capturing the experiences of patients across multiple complex interventions: a meta-qualitative approach.

PubMed

Webster, Fiona; Christian, Jennifer; Mansfield, Elizabeth; Bhattacharyya, Onil; Hawker, Gillian; Levinson, Wendy; Naglie, Gary; Pham, Thuy-Nga; Rose, Louise; Schull, Michael; Sinha, Samir; Stergiopoulos, Vicky; Upshur, Ross; Wilson, Lynn

2015-09-08

The perspectives, needs and preferences of individuals with complex health and social needs can be overlooked in the design of healthcare interventions. This study was designed to provide new insights on patient perspectives drawing from the qualitative evaluation of 5 complex healthcare interventions. Patients and their caregivers were recruited from 5 interventions based in primary, hospital and community care in Ontario, Canada. We included 62 interviews from 44 patients and 18 non-clinical caregivers. Our team analysed the transcripts from 5 distinct projects. This approach to qualitative meta-evaluation identifies common issues described by a diverse group of patients, therefore providing potential insights into systems issues. This study is a secondary analysis of qualitative data; therefore, no outcome measures were identified. We identified 5 broad themes that capture the patients' experience and highlight issues that might not be adequately addressed in complex interventions. In our study, we found that: (1) the emergency department is the unavoidable point of care; (2) patients and caregivers are part of complex and variable family systems; (3) non-medical issues mediate patients' experiences of health and healthcare delivery; (4) the unanticipated consequences of complex healthcare interventions are often the most valuable; and (5) patient experiences are shaped by the healthcare discourses on medically complex patients. Our findings suggest that key assumptions about patients that inform intervention design need to be made explicit in order to build capacity to better understand and support patients with multiple chronic diseases. Across many health systems internationally, multiple models are being implemented simultaneously that may have shared features and target similar patients, and a qualitative meta-evaluation approach, thus offers an opportunity for cumulative learning at a system level in addition to informing intervention design and

The experience of emotional wellbeing for patients with physical injury: A qualitative follow-up study.

PubMed

Wiseman, Taneal; Foster, Kim; Curtis, Kate

2016-09-01

Traumatic physical injury is abrupt, painful, debilitating, costly and life-altering. The experience of emotional wellbeing following traumatic physical injury has not been well investigated, and the role of health services and how services can support the emotional recovery of injured patients has not been well understood. This has impacted on care provision and contributed to a lack of evidence-informed guidance for clinicians to support patients' emotional wellbeing. To explore the patient experience of emotional wellbeing following injury and to understand how injured patients manage their emotional wellbeing. The study comprises the follow-up qualitative phase of a mixed-methods explanatory sequential study. Semi-structured interviews were conducted with a purposive sample of 14 participants admitted to hospital following physical injury. Participants were purposely selected where they had reported high levels of depression, anxiety and stress on the DASS-21 at 3 and 6-months after injury. The qualitative data were analysed using thematic analysis. Three main themes were identified: experiencing the many impacts of injury; facing the emotional journey following injury; and being supported and managing the impacts of injury. Key findings were the extreme negative emotional responses experienced many months after the injury; a strong physical link between the emotional and physical aspects of health; participant reluctance to seek emotional support; a lack of emotional support provision by the health service and a subsequent need for individual and group support in order to develop resilience in the injured person. Finally, male participants who reported extreme emotional responses after injury, including suicidality, were less likely to seek help for their symptoms. Injured patients can experience substantial negative emotional responses following injury. The lack of support provided by health services to injured patients identified highlights the importance of

Commentary: Writing and evaluating qualitative research reports

USDA-ARS?s Scientific Manuscript database

An overview of qualitative methods is provided, 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 ...

Patients' experiences when accessing their on-line electronic patient records in primary care.

PubMed Central

Pyper, Cecilia; Amery, Justin; Watson, Marion; Crook, Claire

2004-01-01

BACKGROUND: Patient access to on-line primary care electronic patient records is being developed nationally. Knowledge of what happens when patients access their electronic records is poor. AIM: To enable 100 patients to access their electronic records for the first time to elicit patients' views and to understand their requirements. DESIGN OF STUDY: In-depth interviews using semi-structured questionnaires as patients accessed their electronic records, plus a series of focus groups. SETTING: Secure facilities for patients to view their primary care records privately. METHOD: One hundred patients from a randomised group viewed their on-line electronic records for the first time. The questionnaire and focus groups addressed patients' views on the following topics: ease of use; confidentiality and security; consent to access; accuracy; printing records; expectations regarding content; exploitation of electronic records; receiving new information and bad news. RESULTS: Most patients found the computer technology used acceptable. The majority found viewing their record useful and understood most of the content, although medical terms and abbreviations required explanation. Patients were concerned about security and confidentiality, including potential exploitation of records. They wanted the facility to give informed consent regarding access and use of data. Many found errors, although most were not medically significant. Many expected more detail and more information. Patients wanted to add personal information. CONCLUSION: Patients have strong views on what they find acceptable regarding access to electronic records. Working in partnership with patients to develop systems is essential to their success. Further work is required to address legal and ethical issues of electronic records and to evaluate their impact on patients, health professionals and service provision. PMID:14965405

Qualitative Research in Palliative Care: Applications to Clinical Trials Work.

PubMed

Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R

2017-08-01

While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.

Patients Know Best: Qualitative Study on How Families Use Patient-Controlled Personal Health Records

PubMed Central

Schneider, Hanna; Hill, Susan

2016-01-01

Background Self-management technologies, such as patient-controlled electronic health records (PCEHRs), have the potential to help people manage and cope with disease. Objective This study set out to investigate patient families’ lived experiences of working with a PCEHR. Methods We conducted a semistructured qualitative field study with patient families and clinicians at a children’s hospital in the UK that uses a PCEHR (Patients Know Best). All families were managing the health of a child with a serious chronic condition, who was typically under the care of multiple clinicians. As data gathering and analysis progressed, it became clear that while much of the literature assumes that patients are willing and waiting to take more responsibility for and control over their health management (eg, with PCEHRs), only a minority of participants in our study responded in this way. Their experiences with the PCEHR were diverse and strongly shaped by their coping styles. Theory on coping identifies a continuum of coping styles, from approach to avoidance oriented, and proposes that patients’ information needs depend on their style. Results We identified 3 groups of patient families and an outlier, distinguished by their coping style and their PCEHR use. We refer to the outlier as controlling (approach oriented, highly motivated to use PCEHR), and the 3 groups as collaborating (approach oriented, motivated to use PCEHR), cooperating (avoidance oriented, less motivated to use PCEHR), and avoiding (very avoidance oriented, not motivated to use PCEHR). Conclusions The PCEHR met the needs of controller and collaborators better than the needs of cooperators and avoiders. We draw on the Self-Determination Theory to propose ways in which a PCEHR design might better meet the needs of avoidance-oriented users. Further, we highlight the need for families to also relinquish control at times, and propose ways in which PCEHR design might support a better distribution of control

Patient preferences toward an interactive e-consent application for research using electronic health records.

PubMed

Harle, Christopher A; Golembiewski, Elizabeth H; Rahmanian, Kiarash P; Krieger, Janice L; Hagmajer, Dorothy; Mainous, Arch G; Moseley, Ray E

2017-12-19

The purpose of this study was to assess patient perceptions of using an interactive electronic consent (e-consent) application when deciding whether or not to grant broad consent for research use of their identifiable electronic health record (EHR) information. For this qualitative study, we conducted a series of 42 think-aloud interviews with 32 adults. Interview transcripts were coded and analyzed using a modified grounded theory approach. We identified themes related to patient preferences, reservations, and mixed attitudes toward consenting electronically; low- and high-information-seeking behavior; and an emphasis on reassuring information, such as data protections and prohibitions against sharing data with pharmaceutical companies. Participants expressed interest in the types of information contained in their EHRs, safeguards protecting EHR data, and specifics on studies that might use their EHR data. This study supports the potential value of interactive e-consent applications that allow patients to customize their consent experience. This study also highlights that some people have concerns about e-consent platforms and desire more detailed information about administrative processes and safeguards that protect EHR data used in research. This study contributes new insights on how e-consent applications could be designed to ensure that patients' information needs are met when seeking consent for research use of health record information. Also, this study offers a potential electronic approach to meeting the new Common Rule requirement that consent documents contain a "concise and focused" presentation of key information followed by more details. © The Author(s) 2017. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com

Meanings of Health for Iranian Diabetic Patients: A qualitative study

PubMed Central

Moridi, Golrokh; Valiee, Sina; Nasrabadi, Alireza Nikbakht; Nasab, Golnaz Esmaeil; Khaledi, Shahnaz

2016-01-01

Introduction Health is an exclusive and subjective phenomenon, and one of the most important situations with regard to perception of health, arises when patients suffer from a chronic disease. This study was conducted within the qualitative research framework and aimed to explore the meanings of health as perceived by a group of Iranian diabetic patients. Methods A descriptive qualitative analysis design was used. Data were collected through semi-structured interviews with 20 participants among diabetic patients, who were admitted to the diabetes care centre of Tohid Hospital of the Kurdistan University of Medical Sciences, Sanandaj, Iran during a ten-month period in 2014. Interviews were transcribed and analysed through conventional content analysis. Results Based on the findings of the study, three major health-related themes emerged: 1) the syndrome of the healthy body and the happy heart (physical well-being vivacity, satisfaction, and calmness of the mind), 2) life without compulsory limitations (lack of dietary limitations, No activity limitations, lack of social limitations), and 3) exalted spirituality (satisfying self and others, trusting God, remembering God). Conclusion Health care providers should consider the meaning of health in special groups, chiefly in patients with chronic diseases. It facilitates the development of appropriate programmes to improve desirable health levels among diabetic patients. PMID:27790342

Patient Drug Safety Reporting: Diabetes Patients' Perceptions of Drug Safety and How to Improve Reporting of Adverse Events and Product Complaints.

PubMed

Patel, Puja; Spears, David; Eriksen, Betina Østergaard; Lollike, Karsten; Sacco, Michael

2018-03-01

Global health care manufacturer Novo Nordisk commissioned research regarding awareness of drug safety department activities and potential to increase patient feedback. Objectives were to examine patients' knowledge of pharmaceutical manufacturers' responsibilities and efforts regarding drug safety, their perceptions and experiences related to these efforts, and how these factors influence their thoughts and behaviors. Data were collected before and after respondents read a description of a drug safety department and its practices. We conducted quantitative survey research across 608 health care consumers receiving treatment for diabetes in the United States, Germany, United Kingdom, and Italy. This research validated initial, exploratory qualitative research (across 40 comparable consumers from the same countries) which served to guide design of the larger study. Before reading a drug safety department description, 55% of respondents were unaware these departments collect safety information on products and patients. After reading the description, 34% reported the department does more than they expected to ensure drug safety, and 56% reported "more confidence" in the industry as a whole. Further, 66% reported themselves more likely to report an adverse event or product complaint, and 60% reported that they were more likely to contact a drug safety department with questions. The most preferred communication methods were websites/online forums (39%), email (27%), and telephone (25%). Learning about drug safety departments elevates consumers' confidence in manufacturers' safety efforts and establishes potential for patients to engage in increased self-monitoring and reporting. Study results reveal potentially actionable insights for the industry across patient and physician programs and communications.

Patient satisfaction and self-reported outcomes after complete brachial plexus avulsion injury.

PubMed

Franzblau, Lauren E; Shauver, Melissa J; Chung, Kevin C

2014-05-01

Reconstructive surgery for complete brachial plexus avulsion injuries only partially restores function, and many patients are dissatisfied with results that surgeons consider good. Preoperative expectations have been shown to influence postoperative satisfaction but are poorly understood in patients with complete brachial plexus avulsion injuries. Qualitative methodology can elucidate patient beliefs and attitudes, which are difficult to quantify. The purpose of this study was to examine patient-reported outcomes, including satisfaction, and to understand the patient perspective. We used qualitative interviews and questionnaires to assess patient-reported outcomes. Two members of the research team analyzed interview data using Grounded Theory methodology. Data from participants who had and did not have reconstructive surgery were compared. Twelve patients participated in this study. Of the 7 participants who had reconstructive surgery, 4 felt their expectations had been met and 5 were satisfied with their outcomes. Reconstruction did not produce statistically significant improvements in upper extremity function, pain, or work ability. All patients reported dissatisfaction with upper extremity ability, and 9 expressed hope for innovative treatments (e.g., stem cell therapy, nerve reinsertion) that could potentially provide better outcomes than existing procedures and enable return to work. Satisfaction with surgical outcomes after complete avulsion brachial plexus injury depends heavily on whether preoperative expectations are met, but patients are unfamiliar with nerve avulsion and do not always know what to expect. Low satisfaction with upper extremity ability and the lack of statistically significant differences produced by reconstruction suggest that current treatments may not be meeting patients' needs. Physicians must provide robust preoperative education to encourage realistic expectations and direct patients toward resources for pain management to facilitate

A qualitative exploration of Malaysian cancer patients' perceptions of cancer screening.

PubMed

Farooqui, Maryam; Hassali, Mohamed Azmi; Knight, Aishah; Shafie, Asrul Akmal; Farooqui, Muhammad Aslam; Saleem, Fahad; Haq, Noman-ul; Aljadhey, Hisham

2013-01-18

Despite the existence of different screening methods, the response to cancer screening is poor among Malaysians. The current study aims to examine cancer patients' perceptions of cancer screening and early diagnosis. A qualitative methodology was used to collect in-depth information from cancer patients. After obtaining institutional ethical approval, patients with different types and stages of cancer from the three major ethnic groups (Malay, Chinese and Indian) were approached. Twenty semi-structured interviews were conducted. All interviews were audiotaped, transcribed verbatim, and translated into English for thematic content analysis. Thematic content analysis yielded four major themes: awareness of cancer screening, perceived benefits of cancer screening, perceived barriers to cancer screening, and cues to action. The majority of respondents had never heard of cancer screening before their diagnosis. Some participants reported hearing about mammogram and Pap smear tests but did not undergo screening due to a lack of belief in personal susceptibility. Those who had negative results from screening prior to diagnosis perceived such tests as untrustworthy. Lack of knowledge and financial constraints were reported as barriers to cancer screening. Finally, numerous suggestions were given to improve screening behaviour among healthy individuals, including the role of mass media in disseminating the message 'prevention is better than cure'. Patients' narratives revealed some significant issues that were in line with the Health Belief Model which could explain negative health behaviour. The description of the personal experiences of people with cancer could provide many cues to action for those who have never encountered this potentially deadly disease, if incorporated into health promotion activities.

Knowledge, barriers and facilitators of exercise in dialysis patients: a qualitative study of patients, staff and nephrologists.

PubMed

Jhamb, Manisha; McNulty, Mary L; Ingalsbe, Gerald; Childers, Julie W; Schell, Jane; Conroy, Molly B; Forman, Daniel E; Hergenroeder, Andrea; Dew, Mary Amanda

2016-11-24

Despite growing evidence on benefits of increased physical activity in hemodialysis (HD) patients and safety of intra-dialytic exercise, it is not part of standard clinical care, resulting in a missed opportunity to improve clinical outcomes in these patients. To develop a successful exercise program for HD patients, it is critical to understand patients', staff and nephrologists' knowledge, barriers, motivators and preferences for patient exercise. In-depth interviews were conducted with a purposive sample of HD patients, staff and nephrologists from 4 dialysis units. The data collection, analysis and interpretation followed Criteria for Reporting Qualitative Research guidelines. Using grounded theory, emergent themes were identified, discussed and organized into major themes and subthemes. We interviewed 16 in-center HD patients (mean age 60 years, 50% females, 63% blacks), 14 dialysis staff members (6 nurses, 3 technicians, 2 dietitians, 1 social worker, 2 unit administrators) and 6 nephrologists (50% females, 50% in private practice). Although majority of the participants viewed exercise as beneficial for overall health, most patients failed to recognize potential mental health benefits. Most commonly reported barriers to exercise were dialysis-related fatigue, comorbid health conditions and lack of motivation. Specifically for intra-dialytic exercise, participants expressed concern over safety and type of exercise, impact on staff workload and resistance to changing dialysis routine. One of the most important motivators identified was support from friends, family and health care providers. Specific recommendations for an intra-dialytic exercise program included building a culture of exercise in the dialysis unit, and providing an individualized engaging program that incorporates education and incentives for exercising. Patients, staff and nephrologists perceive a number of barriers to exercise, some of which may be modifiable. Participants desired an

Communication difficulties experienced by deaf male patients during their in-hospital stay: findings from a qualitative descriptive study.

PubMed

Sirch, Linda; Salvador, Linda; Palese, Alvisa

2017-06-01

Studies available have described several specific issues affecting healthcare accessibility by deaf people, but to date, no research has reported the experience of deaf patients with in-hospital communication. The aim of the study was to explore the communication experience of deaf patients with regard to their in-hospital stay. A purposeful sample of participants was selected. The data collection process was based on a focus group. The focus groups were conducted in Italian sign language and videorecorded; subsequently, the entire conversation was faithfully transcribed. A qualitative content analysis of the transcription was performed and the findings are reported using the Consolidated Criteria for Reporting Qualitative Research approach. Four themes have emerged: (a) experiencing a common vulnerability: the need for reciprocal understanding and sensitivity, (b) being outside the comfort zone: feeling discriminated against once again, (c) perceiving a lack of consonance between care and needs and (d) developing a sense of progressively disempowerment. The experience of deaf individuals during their in-hospital stay may be critical: they are exposed to protracted communication and interaction with healthcare providers and an environment that is not prepared and designed for these vulnerable patients. Two levels of strategies should be identified, implemented and developed to increase the quality of communication with deaf people during hospitalisation, both at the hospital/health system level and at the healthcare professional/clinical level. © 2016 Nordic College of Caring Science.

Cardiac patients' perception of patient-centred care: a qualitative study.

PubMed

Esmaeili, Maryam; Cheraghi, Mohammad A; Salsali, Mahvash

2016-03-01

The aim of this study was to explore cardiac patients' perception of patient-centred care. Despite patient's importance in the process of care, less attention has been paid to experiences and expectations of patients in definitions of patient-centred care. As patients are an important element in process of patient-centred care, organizing care programs according to their perceptions and expectations will lead to enhanced quality of care and greater patient satisfaction. This study is a descriptive qualitative study. Content analysis approach was performed for data analysis. Participants were 18 cardiac patients (10 women and 8 men) hospitalized in coronary care units of teaching hospitals affiliated to Tehran University of Medical Sciences. We collected the study data through conducting personal face-to-face semi-structured interviews. The participants' perceptions of patient-centred care fell into three main themes including managing patients uncertainty, providing care with more flexibility and establishing a therapeutic communication. The second theme consisted of two sub-themes: empathizing with patients and having the right to make independent decisions. Receiving patient-centred care is essential for cardiac patients. Attention to priorities and preferences of cardiac patients and making decisions accordingly is among effective strategies for achieving patient-centred care. Cardiac care unit nurses ought to be aware that in spite of technological developments and advances, it is still important to pay attention to patients' needs and expectations in order to achieve patient satisfaction. In planning care programs, they should consider accountability towards patients' needs, flexibility in process of care and establishing medical interactions as an effective strategy for improving quality of care. © 2014 British Association of Critical Care Nurses.

Synthesis of qualitative linguistic research--a pilot review integrating and generalizing findings on doctor-patient interaction.

PubMed

Nowak, Peter

2011-03-01

There is a broad range qualitative linguistic research (sequential analysis) on doctor-patient interaction that had only a marginal impact on clinical research and practice. At least in parts this is due to the lack of qualitative research synthesis in the field. Available research summaries are not systematic in their methodology. This paper proposes a synthesis methodology for qualitative, sequential analytic research on doctor-patient interaction. The presented methodology is not new but specifies standard methodology of qualitative research synthesis for sequential analytic research. This pilot review synthesizes twelve studies on German-speaking doctor-patient interactions, identifies 45 verbal actions of doctors and structures them in a systematics of eight interaction components. Three interaction components ("Listening", "Asking for information", and "Giving information") seem to be central and cover two thirds of the identified action types. This pilot review demonstrates that sequential analytic research can be synthesized in a consistent and meaningful way, thus providing a more comprehensive and unbiased integration of research. Future synthesis of qualitative research in the area of health communication research is very much needed. Qualitative research synthesis can support the development of quantitative research and of educational materials in medical training and patient training. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

Electronic Health in Perspective of Healthcare Managers: A Qualitative Study in South of Iran

PubMed Central

BASTANI, Peivand; ABOLHASANI, Nazanin; SHAARBAFCHIZADEH, Nasrin

2014-01-01

Abstract Background The important role of electronic health as well as importance of health care systems awareness and readiness may lead to develop the essential infrastructures for electronic health especially in developing countries. This study aims to investigate goals, gains, applications, challenges and other important issues related to success performance of electronic health. Method This research proposed a grounded theory in a qualitative design and a purposive sampling was used to select participants which consisted of 28 hospital managers and staff field managers working in deputy of health and curative affairs of Medical Science Universities in south of Iran. Semi structured interviews were conducted using a topic guide and intended themes derived from the results using Max QDA software during five steps. Results Nine themes through interviewees” viewpoints were made up as followed: Electronic health definition, necessity and importance of electronic health, electronic health advantages, relationship between electronic health and internet, physicians” opposition to electronic health, prerequisites for electronic health, solutions for applying electronic health plan, factors affecting electronic health acceptance in society and electronic health system challenges. Conclusion It seems that there are good circumstances in the south medical universities about settlement and implementations of electronic health and their managers are aware of its advantages, importance and necessities. The present findings implicate that these organizations should consider the user friendly and probable resistances of the present clients, in this regard it is suggested that the used technology must be accepted by users, having standard base, inexpensive and simple enough while less vulnerable in response to changes. PMID:26110152

Electronic Health in Perspective of Healthcare Managers: A Qualitative Study in South of Iran.

PubMed

Bastani, Peivand; Abolhasani, Nazanin; Shaarbafchizadeh, Nasrin

2014-06-01

The important role of electronic health as well as importance of health care systems awareness and readiness may lead to develop the essential infrastructures for electronic health especially in developing countries. This study aims to investigate goals, gains, applications, challenges and other important issues related to success performance of electronic health. This research proposed a grounded theory in a qualitative design and a purposive sampling was used to select participants which consisted of 28 hospital managers and staff field managers working in deputy of health and curative affairs of Medical Science Universities in south of Iran. Semi structured interviews were conducted using a topic guide and intended themes derived from the results using Max QDA software during five steps. Nine themes through interviewees" viewpoints were made up as followed: Electronic health definition, necessity and importance of electronic health, electronic health advantages, relationship between electronic health and internet, physicians" opposition to electronic health, prerequisites for electronic health, solutions for applying electronic health plan, factors affecting electronic health acceptance in society and electronic health system challenges. It seems that there are good circumstances in the south medical universities about settlement and implementations of electronic health and their managers are aware of its advantages, importance and necessities. The present findings implicate that these organizations should consider the user friendly and probable resistances of the present clients, in this regard it is suggested that the used technology must be accepted by users, having standard base, inexpensive and simple enough while less vulnerable in response to changes.

The Computer-based Health Evaluation Software (CHES): a software for electronic patient-reported outcome monitoring.

PubMed

Holzner, Bernhard; Giesinger, Johannes M; Pinggera, Jakob; Zugal, Stefan; Schöpf, Felix; Oberguggenberger, Anne S; Gamper, Eva M; Zabernigg, August; Weber, Barbara; Rumpold, Gerhard

2012-11-09

Patient-reported Outcomes (PROs) capturing e.g., quality of life, fatigue, depression, medication side-effects or disease symptoms, have become important outcome parameters in medical research and daily clinical practice. Electronic PRO data capture (ePRO) with software packages to administer questionnaires, storing data, and presenting results has facilitated PRO assessment in hospital settings. Compared to conventional paper-pencil versions of PRO instruments, ePRO is more economical with regard to staff resources and time, and allows immediate presentation of results to the medical staff.The objective of our project was to develop software (CHES - Computer-based Health Evaluation System) for ePRO in hospital settings and at home with a special focus on the presentation of individual patient's results. Following the Extreme Programming development approach architecture was not fixed up-front, but was done in close, continuous collaboration with software end users (medical staff, researchers and patients) to meet their specific demands. Developed features include sophisticated, longitudinal charts linking patients' PRO data to clinical characteristics and to PRO scores from reference populations, a web-interface for questionnaire administration, and a tool for convenient creating and editing of questionnaires. By 2012 CHES has been implemented at various institutions in Austria, Germany, Switzerland, and the UK and about 5000 patients participated in ePRO (with around 15000 assessments in total). Data entry is done by the patients themselves via tablet PCs with a study nurse or an intern approaching patients and supervising questionnaire completion. During the last decade several software packages for ePRO have emerged for different purposes. Whereas commercial products are available primarily for ePRO in clinical trials, academic projects have focused on data collection and presentation in daily clinical practice and on extending cancer registries with PRO data

Validation study of an electronic method of condensed outcomes tools reporting in orthopaedics.

PubMed

Farr, Jack; Verma, Nikhil; Cole, Brian J

2013-12-01

Patient-reported outcomes (PRO) instruments are a vital source of data for evaluating the efficacy of medical treatments. Historically, outcomes instruments have been designed, validated, and implemented as paper-based questionnaires. The collection of paper-based outcomes information may result in patients becoming fatigued as they respond to redundant questions. This problem is exacerbated when multiple PRO measures are provided to a single patient. In addition, the management and analysis of data collected in paper format involves labor-intensive processes to score and render the data analyzable. Computer-based outcomes systems have the potential to mitigate these problems by reformatting multiple outcomes tools into a single, user-friendly tool.The study aimed to determine whether the electronic outcomes system presented produces results comparable with the test-retest correlations reported for the corresponding orthopedic paper-based outcomes instruments.The study is designed as a crossover study based on consecutive orthopaedic patients arriving at one of two designated orthopedic knee clinics.Patients were assigned to complete either a paper or a computer-administered questionnaire based on a similar set of questions (Knee injury and Osteoarthritis Outcome Score, International Knee Documentation Committee form, 36-Item Short Form survey, version 1, Lysholm Knee Scoring Scale). Each patient completed the same surveys using the other instrument, so that all patients had completed both paper and electronic versions. Correlations between the results from the two modes were studied and compared with test-retest data from the original validation studies.The original validation studies established test-retest reliability by computing correlation coefficients for two administrations of the paper instrument. Those correlation coefficients were all in the range of 0.7 to 0.9, which was deemed satisfactory. The present study computed correlation coefficients between

Facilitators and Threats to the Patient Dignity in Hospitalized Patients with Heart Diseases: A Qualitative Study

PubMed Central

Borhani, Fariba; Abbaszadeh, Abbas; Rabori, Roghayeh Mehdipour

2016-01-01

Background: Patient’s dignity is an important issue which is highlighted in nursing It is an issue that is highly dependent on context and culture. Heart disease is the most common disease in Iran and the world. Identification of facilitator and threatening patient dignity in heart patients is vital. This study aimed to explore facilitator and threatening patient dignity in hospitalized patients with heart disease. Methods: This qualitative content analysis study was performed in 2014 in Kerman, Iran. 20 patients admitted to coronary care units and 5 personnel were selected using purposeful sampling in semi-structured and in depth interviews. Researchers also used documentation and field notes until data saturation. Qualitative data analysis was done constantly and simultaneously with data collection Results: Three central themes emerged: a) Care context which includes human environment and physical environment, b) Holistic safe care including meeting the needs of patients both in the hospital and after discharge, c) Creating a sense of security and an effective relationship between patient and nurse, including a respectful relationship and account the family in health team. Conclusion: The results of this study showed that care context is important for patient dignity as well as physical environment and safe holistic care. PMID:26793729

Contextual factors affecting autonomy for patients in Iranian hospitals: A qualitative study

PubMed Central

Ebrahimi, Hossein; Sadeghian, Efat; Seyedfatemi, Naeimeh; Mohammadi, Eesa; Crowley, Maureen

2016-01-01

Background: Consideration of patient autonomy is an essential element in individualized, patient-centered, ethical care. Internal and external factors associated with patient autonomy are related to culture and it is not clear what they are in Iran. The aim of this study was to explore contextual factors affecting the autonomy of patients in Iranian hospitals. Materials and Methods: This was a qualitative study using conventional content analysis methods. Thirty-four participants (23 patients, 9 nurses, and 2 doctors) from three Iranian teaching hospitals, selected using purposive sampling, participated in semi-structured interviews. Unstructured observation and filed notes were other methods for data collection. The data were subjected to qualitative content analysis and analyzed using the MAXQDA-10 software. Results: Five categories and sixteen subcategories were identified. The five main categories related to patient autonomy were: Intrapersonal factors, physical health status, supportive family and friends, communication style, and organizational constraints. Conclusions: In summary, this study uncovered contextual factors that the care team, managers, and planners in the health field should target in order to improve patient autonomy in Iranian hospitals. PMID:27186203

Contextual factors affecting autonomy for patients in Iranian hospitals: A qualitative study.

PubMed

Ebrahimi, Hossein; Sadeghian, Efat; Seyedfatemi, Naeimeh; Mohammadi, Eesa; Crowley, Maureen

2016-01-01

Consideration of patient autonomy is an essential element in individualized, patient-centered, ethical care. Internal and external factors associated with patient autonomy are related to culture and it is not clear what they are in Iran. The aim of this study was to explore contextual factors affecting the autonomy of patients in Iranian hospitals. This was a qualitative study using conventional content analysis methods. Thirty-four participants (23 patients, 9 nurses, and 2 doctors) from three Iranian teaching hospitals, selected using purposive sampling, participated in semi-structured interviews. Unstructured observation and filed notes were other methods for data collection. The data were subjected to qualitative content analysis and analyzed using the MAXQDA-10 software. Five categories and sixteen subcategories were identified. The five main categories related to patient autonomy were: Intrapersonal factors, physical health status, supportive family and friends, communication style, and organizational constraints. In summary, this study uncovered contextual factors that the care team, managers, and planners in the health field should target in order to improve patient autonomy in Iranian hospitals.

A qualitative study of Canada’s experience with the implementation of electronic health information technology

PubMed Central

Rozenblum, Ronen; Jang, Yeona; Zimlichman, Eyal; Salzberg, Claudia; Tamblyn, Melissa; Buckeridge, David; Forster, Alan; Bates, David W.; Tamblyn, Robyn

2011-01-01

Background In 2001, Canada Health Infoway unveiled a plan to implement a national system of interoperable electronic health records. This government-funded corporation introduced a novel model for interprovincial/territorial collaboration to establish core aspects of a national framework. Despite this $1.6 billion initiative, Canada continues to lag behind other Western countries in adopting electronic health records. We conducted a study to identify the success of different aspects of the Canadian plan and ways to improve the adoption of electronic health records. Methods We used a case study approach to assess the 10-year history of Canada’s e-health plan. National reports and documents were reviewed, and structured interviews were conducted with 29 key stakeholders representing national and provincial organizations responsible for establishing policy and strategic direction for health information technology. Using grounded theory, we analyzed transcripts of the interviews to identify themes and their relationships. Results Key stakeholders identified funding, national standards, patient registries and digital imaging as important achievements of the e-health plan. Lack of an e-health policy, inadequate involvement of clinicians, failure to establish a business case for using electronic health records, a focus on national rather than regional interoperability, and inflexibility in approach were seen as barriers to adoption of the plan. Interpretation To accelerate adoption of electronic health records and timely return on investment, an e-health policy needs to be tightly aligned with the major strategic directions of health care reform. Adoption needs to be actively fostered through a bottom-up, clinical-needs-first approach, a national policy for investment in electronic health records, and financial incentives based on patient outcomes that can be achieved with electronic health records. PMID:21343262

Adherence to Warfarin Assessed by Electronic Pill Caps, Clinician Assessment, and Patient Reports: Results from the IN-RANGE Study

PubMed Central

Parker, Catherine S.; Chen, Zhen; Price, Maureen; Gross, Robert; Metlay, Joshua P.; Christie, Jason D.; Brensinger, Colleen M.; Newcomb, Craig W.; Samaha, Frederick F.

2007-01-01

Background Patient adherence to warfarin may influence anticoagulation control; yet, adherence among warfarin users has not been rigorously studied. Objective Our goal was to quantify warfarin adherence over time and to compare electronic medication event monitoring systems (MEMS) cap measurements with both self-report and clinician assessment of patient adherence. Design We performed a prospective cohort study of warfarin users at 3 Pennsylvania-based anticoagulation clinics and assessed pill-taking behaviors using MEMS caps, patient reports, and clinician assessments. Results Among 145 participants, the mean percent of days of nonadherence by MEMS was 21.8% (standard deviation±21.1%). Participants were about 6 times more likely to take too few pills than to take extra pills (18.8 vs. 3.3%). Adherence changed over time, initially worsening over the first 6 months of monitoring, which was followed by improvement beyond 6 months. Although clinicians were statistically better than chance at correctly labeling a participant’s adherence (odds ratio = 2.05, p = 0.015), their estimates often did not correlate with MEMS-cap data; clinicians judged participants to be “adherent” at 82.8% of visits that were categorized as moderately nonadherent using MEMS-cap data (≥20% nonadherence days). Similarly, at visits when participants were moderately nonadherent by MEMS, they self-reported perfect adherence 77.9% of the time. Conclusions These results suggest that patients may benefit from adherence counseling even when they claim to be taking their warfarin or the clinician feels they are doing so, particularly several months into their course of therapy. PMID:17587092

Oncology nurses’ communication challenges with patients and families: A qualitative study

PubMed Central

Banerjee, Smita C.; Manna, Ruth; Coyle, Nessa; Shen, Megan Johnson; Pehrson, Cassandra; Zaider, Talia; Hammonds, Stacey; Krueger, Carol A.; Parker, Patricia A.; Bylund, Carma L.

2016-01-01

The benefits of effective communication in an oncology setting are multifold and include the overall well-being of patients and health professionals, adherence to treatment regimens, psychological functioning, and improvements in quality of life. Nevertheless, there are substantial barriers and communication challenges reported by oncology nurses. This study was conducted to present a summary of communication challenges faced by oncology nurses. From November 2012 to March 2014, 121 inpatient nurses working in the oncology setting participated in an online pre-training qualitative survey that asked nurses to describe common communication challenges in communicating empathy and discussing death, dying, and end-of-life (EOL) goals of care. The results revealed six themes that describe the challenges in communicating empathically: dialectic tensions, burden of carrying bad news, lack of skills for providing empathy, perceived institutional barriers, challenging situations, and perceived dissimilarities between the nurse and the patient. The results for challenges in discussing death, dying and EOL goals of care revealed five themes: dialectic tensions, discussing specific topics related to EOL, lack of skills for providing empathy, patient/family characteristics, and perceived institutional barriers. This study emphasizes the need for institutions to provide communication skills training to their oncology nurses for navigating through challenging patient interactions. PMID:26278636

Oncology nurses' communication challenges with patients and families: A qualitative study.

PubMed

Banerjee, Smita C; Manna, Ruth; Coyle, Nessa; Shen, Megan Johnson; Pehrson, Cassandra; Zaider, Talia; Hammonds, Stacey; Krueger, Carol A; Parker, Patricia A; Bylund, Carma L

2016-01-01

The benefits of effective communication in an oncology setting are multifold and include the overall well-being of patients and health professionals, adherence to treatment regimens, psychological functioning, and improvements in quality of life. Nevertheless, there are substantial barriers and communication challenges reported by oncology nurses. This study was conducted to present a summary of communication challenges faced by oncology nurses. From November 2012 to March 2014, 121 inpatient nurses working in the oncology setting participated in an online pre-training qualitative survey that asked nurses to describe common communication challenges in communicating empathy and discussing death, dying, and end-of-life (EOL) goals of care. The results revealed six themes that describe the challenges in communicating empathically: dialectic tensions, burden of carrying bad news, lack of skills for providing empathy, perceived institutional barriers, challenging situations, and perceived dissimilarities between the nurse and the patient. The results for challenges in discussing death, dying and EOL goals of care revealed five themes: dialectic tensions, discussing specific topics related to EOL, lack of skills for providing empathy, patient/family characteristics, and perceived institutional barriers. This study emphasizes the need for institutions to provide communication skills training to their oncology nurses for navigating through challenging patient interactions. Copyright © 2015 Elsevier Ltd. All rights reserved.

Privacy vs Usability: A Qualitative Exploration of Patients' Experiences With Secure Internet Communication With Their General Practitioner

PubMed Central

Tran, Trung; Faxvaag, Arild

2005-01-01

Background Direct electronic communication between patients and physicians has the potential to empower patients and improve health care services. Communication by regular email is, however, considered a security threat in many countries and is not recommended. Systems which offer secure communication have now emerged. Unlike regular email, secure systems require that users authenticate themselves. However, the authentication steps per se may become barriers that reduce use. Objectives The objective was to study the experiences of patients who were using a secure electronic communication system. The focus of the study was the users' privacy versus the usability of the system. Methods Qualitative interviews were conducted with 15 patients who used a secure communication system (MedAxess) to exchange personal health information with their primary care physician. Results Six main themes were identified from the interviews: (1) supporting simple questions, (2) security issues, (3) aspects of written communication, (4) trust in the physician, (5) simplicity of MedAxess, and (6) trouble using the system. By using the system, about half of the patients (8/15) experienced easier access to their physician, with whom they tended to solve minor health problems and elaborate on more complex illness experiences. Two thirds of the respondents (10/15) found that their physician quickly responded to their MedAxess requests. As a result of the security barriers, the users felt that the system was secure. However, due to the same barriers, the patients considered the log-in procedure cumbersome, which had considerable negative impact on the actual use of the system. Conclusions Despite a perceived need for secure electronic patient-physician communication systems, security barriers may diminish their overall usefulness. A dual approach is necessary to improve this situation: patients need to be better informed about security issues, and, at the same time, their experiences of using

[Hypnosis as a resource in palliative care. A qualitative study of the contribution of hypnosis to the care of oncology patients].

PubMed

Teike Luethi, Fabienne; Currat, Thierry; Spencer, Brenda; Jayet, Nicolas; Cantin, Boris

2012-09-01

Hypnosis is recognised in medicine as an effective complementary therapy. However, few qualitative data are available concerning the benefits it may bring. This qualitative exploratory study aimed to examine the contribution of hypnosis to the care of advanced cancer patients. Results demonstrate that hypnosis is an effective and efficient means of developing the resources of people suffering from serious illness. After an average of four hypnotherapy sessions, patients said they were able to locate previously unexploited resources within themselves and were able to become autonomous in the use of self-hypnosis. The major benefit reported concerned a reduction in anxiety. For patients experiencing anxiety about death, hypnosis allowed them, within a therapeutic environment perceived as safe, to explore different facets of their fears and to develop adaptive strategies. Aside from slight fatigue experienced during the sessions, no adverse side-effects were reported. In conclusion, this study exploring the effects of hypnosis allowed us to identify important benefits for patients suffering from advanced cancer. Consequently, replication on a larger scale is recommended in order to ascertain the extent to which it is possible to generalise from these results and in order better to define the characteristics of patients most likely to benefit from this therapy.

Building a Patient-Reported Outcome Metric Database: One Hospital's Experience.

PubMed

Rana, Adam J

2016-06-01

A number of provisions exist within the Patient Protection and Affordable Care Act that focus on improving the delivery of health care in the United States, including quality of care. From a total joint arthroplasty perspective, the issue of quality increasingly refers to quantifying patient-reported outcome metrics (PROMs). This article describes one hospital's experience in building and maintaining an electronic PROM database for a practice of 6 board-certified orthopedic surgeons. The surgeons advocated to and worked with the hospital to contract with a joint registry database company and hire a research assistant. They implemented a standardized process for all surgical patients to fill out patient-reported outcome questionnaires at designated intervals. To date, the group has collected patient-reported outcome metric data for >4500 cases. The data are frequently used in different venues at the hospital including orthopedic quality metric and research meetings. In addition, the results were used to develop an annual outcome report. The annual report is given to patients and primary care providers, and portions of it are being used in discussions with insurance carriers. Building an electronic database to collect PROMs is a group undertaking and requires a physician champion. A considerable amount of work needs to be done up front to make its introduction a success. Once established, a PROM database can provide a significant amount of information and data that can be effectively used in multiple capacities. Copyright © 2016 Elsevier Inc. All rights reserved.

How the internet affects patients' experience of cancer: a qualitative study

PubMed Central

Ziebland, Sue; Chapple, Alison; Dumelow, Carol; Evans, Julie; Prinjha, Suman; Rozmovits, Linda

2004-01-01

Objective To explore how men and women with cancer talk about using the internet. Design Qualitative study using semistructured interviews collected by maximum variation sampling. Setting Respondents recruited throughout the United Kingdom during 2001-2. Participants 175 men and women aged 19-83 years, with one of five cancers (prostate, testicular, breast, cervical, or bowel) diagnosed since 1992 and selected to include different stages of treatment and follow up. Results Internet use, either directly or via friend or family, was widespread and reported by patients at all stages of cancer care, from early investigations to follow up after treatment. Patients used the internet to find second opinions, seek support and experiential information from other patients, interpret symptoms, seek information about tests and treatments, help interpret consultations, identify questions for doctors, make anonymous private inquiries, and raise awareness of the cancer. Patients also used it to check their doctors' advice covertly and to develop an expertise in their cancer. This expertise, reflecting familiarity with computer technology and medical terms, enabled patients to present a new type of “social fitness.” Conclusion Cancer patients used the internet for a wide range of information and support needs, many of which are unlikely to be met through conventional health care. Serious illness often undermines people's self image as a competent member of society. Cancer patients may use the internet to acquire expertise to display competence in the face of serious illness. PMID:15001506

Commentary: Writing and Evaluating Qualitative Research Reports

PubMed Central

Thompson, Deborah; Aroian, Karen J.; McQuaid, Elizabeth L.; Deatrick, Janet A.

2016-01-01

Objective To provide an overview of qualitative methods, particularly for reviewers and authors who may be less familiar with qualitative research. Methods A question and answer format is used to address considerations for writing and evaluating qualitative research. Results and Conclusions 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. PMID:27118271

Automated Reporting of Trainee Metrics Using Electronic Clinical Systems.

PubMed

Levin, Jonathan C; Hron, Jonathan

2017-06-01

The Accreditation Council for Graduate Medical Education has called for increased emphasis on reporting objective performance measures to trainees and programs. However, reporting of objective measures, including clinical volume, is largely omitted from training programs. To use automated electronic medical systems at a tertiary pediatric care hospital to create a dashboard that reports objective trainee and program metrics, including clinical volume and diagnoses in a pediatrics residency. We queried an enterprise data warehouse that aggregates data daily from multiple hospital systems to identify patient encounters during which senior pediatrics residents at Boston Children's Hospital had entered documentation over a 9-month period. From this query, we created a filterable dashboard to display clinical volume and diagnosis data by individual resident and in aggregate. A total of 44 of 45 senior residents (98%) in the program were included in analysis. We identified 12 198 patient encounters during which a senior pediatrics resident had entered documentation; these included a median of 332 inpatient encounters per resident, 122 emergency department encounters, and 84 outpatient encounters. The most common diagnoses stratified by clinical site were: inpatient - dehydration (median = 61); emergency department - long-term/current drug therapy (median = 16); and outpatient - encounter for immunization (median = 48). We used electronic health record systems to generate performance dashboards for trainees in a pediatrics residency across different sites of care with reported volume by diagnosis. Our dashboards provide feedback to program leadership regarding individual and aggregate trainee experience and allow individual trainees to compare their clinical exposure to peers.

Patient activation and use of an electronic patient portal.

PubMed

Ancker, Jessica S; Osorio, Snezana N; Cheriff, Adam; Cole, Curtis L; Silver, Michael; Kaushal, Rainu

2015-01-01

Electronic patient portals give patients access to personal medical data, potentially creating opportunities to improve knowledge, self-efficacy, and engagement in healthcare. The combination of knowledge, self-efficacy, and engagement has been termed activation. Our objective was to assess the relationship between patient activation and outpatient use of a patient portal. Survey. A telephone survey was conducted with 180 patients who had been given access to a portal, 113 of whom used it and 67 of whom did not. The validated patient activation measure (PAM) was administered along with questions about demographics and behaviors. Portal users were no different from nonusers in patient activation. Portal users did have higher education level and more frequent Internet use, and were more likely to have precisely 2 prescription medications than to have more or fewer. Patients who chose to use an electronic patient portal were not more highly activated than nonusers, although they were more educated and more likely to be Internet users.

Experiences from consumer reports on psychiatric adverse drug reactions with antidepressant medication: a qualitative study of reports to a consumer association.

PubMed

Vilhelmsson, Andreas; Svensson, Tommy; Meeuwisse, Anna; Carlsten, Anders

2012-12-23

The new European pharmacovigilance legislation has been suggested as marking the beginning of a new chapter in drug safety, making patients an important part of pharmacovigilance. In Sweden since 2008 it has been possible for consumers to report adverse drug reactions (ADRs) to the Medical Products Agency (MPA), and these reports are now understood as an increasingly valuable contribution in the monitoring of safety aspects in medicines. Already in 2002 it was possible to report experiences with medicines to the non-profit and independent organization Consumer Association for Medicines and Health (KILEN) through a web-based report form with an opportunity to describe ADR experiences in free text comments. The aim of this study was to qualitatively analyze the free text comments appended to consumer reports on antidepressant medication. All reports of suspected adverse reactions regarding antidepressant medications submitted from January 2002 to April 2009 to KILEN's Internet-based reporting system in Sweden were analyzed according to reported narrative experience(s). Content analysis was used to interpret the content of 181 reports with free text comments. Three main categories emerged from the analyzed data material: (1) Experiences of drug treatment with subcategories (a) Severe psychiatric adverse reactions, and (b) Discontinuation symptoms; (2) Lack of communication and (3) Trust and distrust. A majority of the reports to KILEN were from patients experiencing symptoms of mental disturbances (sometimes severe) affecting them in many different ways, especially during discontinuation. Several report included narratives of patients not receiving information of potential ADRs from their doctor, but also that there were no follow-ups of the treatment. Trust was highlighted as especially important and some patients reported losing confidence in their doctor when they were not believed about the suspected ADRs they experienced, making them attempt to discontinue their

Effective patient-provider communication about sexual concerns in breast cancer: a qualitative study.

PubMed

Reese, Jennifer Barsky; Beach, Mary Catherine; Smith, Katherine Clegg; Bantug, Elissa T; Casale, Kristen E; Porter, Laura S; Bober, Sharon L; Tulsky, James A; Daly, Mary B; Lepore, Stephen J

2017-10-01

Breast cancer patients commonly experience sexual concerns, yet rarely discuss them with clinicians. The study examined patient and provider experiences and preferences related to communication about breast cancer-related sexual concerns with the goal of informing intervention development. Patient data (n = 28) were derived from focus groups and interviews with partnered and unpartnered women treated for breast cancer reporting sexual concerns. Provider data (n = 11) came from interviews with breast cancer oncologists and nurse practitioners. Patient and provider data were analyzed separately using the framework method of qualitative analysis. Findings revealed individual and institutional barriers to effective communication about sexual concerns and highlighted key communication facilitators (e.g., a positive patient-provider relationship, patient communication as a driver of provider communication, and vice versa). Patients expressed preferences for open, collaborative communication; providers expressed preferences for focused intervention targets (identifying concerns, offering resources/referrals) and convenient format. A model of effective communication of sexual concerns was developed to inform communication interventions. Findings suggest that to improve patient-provider communication about sexual concerns, knowledge and skills-based interventions that activate patients and that equip providers for effective discussions about sexual concerns are needed, as are institutional changes that could incentivize such discussions.

Patient-reported physical activity questionnaires: A systematic review of content and format

PubMed Central

2012-01-01

Background Many patients with chronic illness are limited in their physical activities. This systematic review evaluates the content and format of patient-reported outcome (PRO) questionnaires that measure physical activity in elderly and chronically ill populations. Methods Questionnaires were identified by a systematic literature search of electronic databases (Medline, Embase, PsychINFO & CINAHL), hand searches (reference sections and PROQOLID database) and expert input. A qualitative analysis was conducted to assess the content and format of the questionnaires and a Venn diagram was produced to illustrate this. Each stage of the review process was conducted by at least two independent reviewers. Results 104 questionnaires fulfilled our criteria. From these, 182 physical activity domains and 1965 items were extracted. Initial qualitative analysis of the domains found 11 categories. Further synthesis of the domains found 4 broad categories: 'physical activity related to general activities and mobility', 'physical activity related to activities of daily living', 'physical activity related to work, social or leisure time activities', and '(disease-specific) symptoms related to physical activity'. The Venn diagram showed that no questionnaires covered all 4 categories and that the '(disease-specific) symptoms related to physical activity' category was often not combined with the other categories. Conclusions A large number of questionnaires with a broad range of physical activity content were identified. Although the content could be broadly organised, there was no consensus on the content and format of physical activity PRO questionnaires in elderly and chronically ill populations. Nevertheless, this systematic review will help investigators to select a physical activity PRO questionnaire that best serves their research question and context. PMID:22414164

Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients’ experience

PubMed Central

2014-01-01

Patient-reported outcome (PRO) measures must provide evidence that their development followed a rigorous process for ensuring their content validity. To this end, the collection of data is performed through qualitative interviews that allow for the elicitation of in-depth spontaneous reports of the patients’ experiences with their condition and/or its treatment. This paper provides a review of qualitative research applied to PRO measure development. A clear definition of what is a qualitative research interview is given as well as information about the form and content of qualitative interviews required for developing PRO measures. Particular attention is paid to the description of interviewing approaches (e.g., semi-structured and in-depth interviews, individual vs. focus group interviews). Information about how to get prepared for a qualitative interview is provided with the description of how to develop discussion guides for exploratory or cognitive interviews. Interviewing patients to obtain knowledge regarding their illness experience requires interpersonal and communication skills to facilitate patients’ expression. Those skills are described in details, as well as the skills needed to facilitate focus groups and to interview children, adolescents and the elderly. Special attention is also given to quality assurance and interview training. The paper ends on ethical considerations since interviewing for the development of PROs is performed in a context of illness and vulnerability. Therefore, it is all the more important that, in addition to soliciting informed consent, respectful interactions be ensured throughout the interview process. PMID:24499454

Psychosocial presentation of revisional LAGB patients: a qualitative study.

PubMed

Janse Van Vuuren, M; Strodl, E; White, K M; Lockie, P

2015-10-01

This qualitative study offers insight into the experiences, expectations, perceptions and beliefs that may lead to laparoscopic adjustable gastric band patients' failure to achieve expected weight loss and seek revisional bariatric surgery. The 23 participants from two sites were interviewed and data were analysed from a grounded theory methodology in order to build a causal model. Analysis of participants' reports identified 'unrealistic expectations of the LAGB' as the core category. Additionally, the restriction of the band had a negative impact on participants' social interactions, leading to feelings of deprivation and, thus, to a desire for reward from food choices and consequently an increase of consumption of high-calorie-dense foods. These foods were chosen because of their specific texture or ability to provide reward. The resulting increase in weight or failure to achieve excess weight loss, led to feelings of shame and loneliness and emotional eating resulting in increased the consumption of rewarding foods. Thus, identifying unrealistic expectations of laparoscopic adjustable gastric band (LAGB) and emotional eating behaviours are important in those who are present initially for primary bariatric and revisional bariatric surgery, as they may contribute specifically to these patients' weight regain and consequent failure to achieve excess weight loss. © 2015 World Obesity.

Electronic monitoring of patient adherence to oral antihypertensive medical treatment: a systematic review.

PubMed

Christensen, Arne; Osterberg, Lars G; Hansen, Ebba Holme

2009-08-01

Poor patient adherence is often the reason for suboptimal blood pressure control. Electronic monitoring is one method of assessing adherence. The aim was to systematically review the literature on electronic monitoring of patient adherence to self-administered oral antihypertensive medications. We searched the Pubmed, Embase, Cinahl and Psychinfo databases and websites of suppliers of electronic monitoring devices. The quality of the studies was assessed according to the quality criteria proposed by Haynes et al. Sixty-two articles were included; three met the criteria proposed by Haynes et al. and nine reported the use of electronic adherence monitoring for feedback interventions. Adherence rates were generally high, whereas average study quality was low with a recent tendency towards improved quality. One study detected investigator fraud based on electronic monitoring data. Use of electronic monitoring of patient adherence according to the quality criteria proposed by Haynes et al. has been rather limited during the past two decades. Electronic monitoring has mainly been used as a measurement tool, but it seems to have the potential to significantly improve blood pressure control as well and should be used more widely.

Electronics Lab Instructors' Approaches to Troubleshooting Instruction

ERIC Educational Resources Information Center

Dounas-Frazer, Dimitri R.; Lewandowski, H. J.

2017-01-01

In this exploratory qualitative study, we describe instructors' self-reported practices for teaching and assessing students' ability to troubleshoot in electronics lab courses. We collected audio data from interviews with 20 electronics instructors from 18 institutions that varied by size, selectivity, and other factors. In addition to describing…

[Qualitative evaluation of blood products records in a hospital].

PubMed

Lartigue, B; Catillon, E

2012-02-01

This study aimed at evaluating the qualitative performance of blood products traceability from paper and electronic medical records in a hospital. Quality of date/time documentation was assessed by detection, for 20minutes or more, of chronological errors and inter-source inconsistencies, in a random sample of 168 blood products transfused during 2009. A receipt date/time was confirmed in 52% of paper records; a data entry error was attested in 25% of paper records, and 21% of electronic records. A transfusion date/time was notified in 93% of paper records, with a data entry error in 26% of paper records and 25% of electronic records. The patient medical record held at least one date/time error in 18% and 17%, for receipt and transfusion respectively. Environmental factors (clinical setting, urgency, blood product category) did not contributed to data error rates. Although blood products traceability has good quantitative results, the recorded documentation is not qualitative. In our study, data entry errors are similar in electronic or paper records, but the global failure rate is lesser in electronic records because omissions are controlled. Copyright © 2011 Elsevier Masson SAS. All rights reserved.

An Economic Assessment of Electronic Text. Report Number Six of the Electronic Text Report Series.

ERIC Educational Resources Information Center

Carey, John

This report outlines economic components that will eventually contribute to large models of electronic text services in institutions of higher education, and provides a simple and practical assessment of economic issues associated with electronic text for college administrators, faculty, and planners. This assessment constitutes a layman's guide…

Barriers to patient portal access among veterans receiving home-based primary care: a qualitative study.

PubMed

Mishuris, Rebecca G; Stewart, Max; Fix, Gemmae M; Marcello, Thomas; McInnes, D Keith; Hogan, Timothy P; Boardman, Judith B; Simon, Steven R

2015-12-01

Electronic, or web-based, patient portals can improve patient satisfaction, engagement and health outcomes and are becoming more prevalent with the advent of meaningful use incentives. However, adoption rates are low, particularly among vulnerable patient populations, such as those patients who are home-bound with multiple comorbidities. Little is known about how these patients view patient portals or their barriers to using them. To identify barriers to and facilitators of using My HealtheVet (MHV), the United States Department of Veterans Affairs (VA) patient portal, among Veterans using home-based primary care services. Qualitative study using in-depth semi-structured interviews. We conducted a content analysis informed by grounded theory. Fourteen Veterans receiving home-based primary care, surrogates of two of these Veterans, and three home-based primary care (HBPC) staff members. We identified five themes related to the use of MHV: limited knowledge; satisfaction with current HBPC care; limited computer and Internet access; desire to learn more about MHV and its potential use; and value of surrogates acting as intermediaries between Veterans and MHV. Despite their limited knowledge of MHV and computer access, home-bound Veterans are interested in accessing MHV and using it as an additional point of care. Surrogates are also potential users of MHV on behalf of these Veterans and may have different barriers to and benefits from use. © 2014 John Wiley & Sons Ltd.

Access, interest, and attitudes toward electronic communication for health care among patients in the medical safety net.

PubMed

Schickedanz, Adam; Huang, David; Lopez, Andrea; Cheung, Edna; Lyles, C R; Bodenheimer, Tom; Sarkar, Urmimala

2013-07-01

Electronic and internet-based tools for patient-provider communication are becoming the standard of care, but disparities exist in their adoption among patients. The reasons for these disparities are unclear, and few studies have looked at the potential communication technologies have to benefit vulnerable patient populations. To characterize access to, interest in, and attitudes toward internet-based communication in an ethnically, economically, and linguistically diverse group of patients from a large urban safety net clinic network. Observational, cross-sectional study Adult patients (≥ 18 years) in six resource-limited community clinics in the San Francisco Department of Public Health (SFDPH) MAIN MEASURES: Current email use, interest in communicating electronically with health care professionals, barriers to and facilitators of electronic health-related communication, and demographic data-all self-reported via survey. Sixty percent of patients used email, 71 % were interested in using electronic communication with health care providers, and 19 % reported currently using email informally with these providers for health care. Those already using any email were more likely to express interest in using it for health matters. Most patients agreed electronic communication would improve clinic efficiency and overall communication with clinicians. A significant majority of safety net patients currently use email, text messaging, and the internet, and they expressed an interest in using these tools for electronic communication with their medical providers. This interest is currently unmet within safety net clinics that do not offer a patient portal or secure messaging. Tools such as email encounters and electronic patient portals should be implemented and supported to a greater extent in resource-poor settings, but this will require tailoring these tools to patients' language, literacy level, and experience with communication technology.

Architectural Choices and Challenges of Integrating Electronic Patient Questionnaires into the Electronic Medical Record to Support Patient-Centered Care

PubMed Central

Moore, Barbara J; Gaehde, Stephan; Curtis, Clayton

2008-01-01

Strategies to deliver guideline-concordant, patient-centered care during office visits sometimes impose conflicting demands on clinicians. One way to help relieve time-constrained visits and to improve the patient-centeredness of care may be through patients electronically self-reporting data that flow automatically into an EMR note for clinician confirmation or editing, relieving physicians of some data entry and rote history-gathering tasks, thus freeing up time to allow clinicians to focus on significant issues and patient concerns while also increasing the likelihood that necessary data are gathered and available for decision-making. We developed a prototype to enable such data gathering and integration into the EMR. The lack of consistent provision of interfaces by vendors for sending data into EMRs and the idiosyncrasies of any particular EMR in the context of a particular organization’s IT infrastructure and policies pose architectural choices and challenges that healthcare organizations embarking on such IT projects may need to consider. PMID:18999024

Standardizing patient-reported outcomes assessment in cancer clinical trials: a patient-reported outcomes measurement information system initiative.

PubMed

Garcia, Sofia F; Cella, David; Clauser, Steven B; Flynn, Kathryn E; Lad, Thomas; Lai, Jin-Shei; Reeve, Bryce B; Smith, Ashley Wilder; Stone, Arthur A; Weinfurt, Kevin

2007-11-10

Patient-reported outcomes (PROs), such as symptom scales or more broad-based health-related quality-of-life measures, play an important role in oncology clinical trials. They frequently are used to help evaluate cancer treatments, as well as for supportive and palliative oncology care. To be most beneficial, these PROs must be relevant to patients and clinicians, valid, and easily understood and interpreted. The Patient-Reported Outcomes Measurement Information System (PROMIS) Network, part of the National Institutes of Health Roadmap Initiative, aims to improve appreciably how PROs are selected and assessed in clinical research, including clinical trials. PROMIS is establishing a publicly available resource of standardized, accurate, and efficient PRO measures of major self-reported health domains (eg, pain, fatigue, emotional distress, physical function, social function) that are relevant across chronic illnesses including cancer. PROMIS is also developing measures of self-reported health domains specifically targeted to cancer, such as sleep/wake function, sexual function, cognitive function, and the psychosocial impacts of the illness experience (ie, stress response and coping; shifts in self-concept, social interactions, and spirituality). We outline the qualitative and quantitative methods by which PROMIS measures are being developed and adapted for use in clinical oncology research. At the core of this activity is the formation and application of item banks using item response theory modeling. We also present our work in the fatigue domain, including a short-form measure, as a sample of PROMIS methodology and work to date. Plans for future validation and application of PROMIS measures are discussed.

Patients' expectations of medicines--a review and qualitative synthesis.

PubMed

Dohnhammar, Ulrica; Reeve, Joanne; Walley, Tom

2016-04-01

An increasing part of prescribing of medicines is done for the purpose of managing risk for disease and is motivated by clinical and economic benefit on a long-term, population level. This makes benefit from medicines less tangible for individuals. Sociology of pharmaceuticals includes personal and social perspectives in the study of how medicines are used. We use two characterizations of patients' expectations of medicines to start forming a description of how individuals conceptualize benefits from risk management medicines. We reviewed the literature on patients' expectations with a focus on the influences on expectations regarding medicines prescribed for long-term conditions. Searches in Medline and Scopus identified 20 studies for inclusion, describing qualitative aspects of beliefs, views, thoughts and expectations regarding medicines. A qualitative synthesis using a constant comparative thematic analysis identified four themes describing influences on expectations: a need to achieve a specific outcome; the development of experiences and evaluation over time; negative values such as dependency and social stigma; and personalized meaning of the necessity and usefulness of medicines. The findings in this synthesis resonate with previous research into expectations of medicines for prevention and treatment of different conditions. However, a gap in the knowledge regarding patients' conceptualization of future benefits with medicines is identified. The study highlights suggestions for further empirical work to develop a deeper understanding of the role of patients' expectations in prescribing for long-term risk management. © 2015 John Wiley & Sons Ltd.

A scoping review of qualitative research in peer-reviewed dental publications.

PubMed

Gussy, M; Dickson-Swift, V; Adams, J

2013-08-01

Qualitative research designs are being used increasingly in dental research. This paper describes the extent and range of dental research in which qualitative methods have been employed as well as the techniques of data collection and analysis preferred by dental researchers. A scoping review was conducted to locate studies published in dental journals, which reported the use of qualitative methods. Data concerning the focus of the research and the reported qualitative techniques were extracted. Studies included in the review totalled 197. The majority of qualitative research captured in this scoping study focussed on three main areas: dental education, professional dental and dental educators' activities and experiences and the patient/public perceptions. Interviews and focus group discussions were the most commonly selected techniques for data collection. The majority of the studies included in the scoping review had a focus on education of dental professionals the activities of dental professionals or the reported perceptions of or experiences with dental services by patients or members of the public. Little research was located, which explored peoples' personal experience of dental conditions. Research reported in dental publications has a heavy bias towards the use of focus groups and interview data collection techniques. © 2012 John Wiley & Sons A/S.

Using Discursis to enhance the qualitative analysis of hospital pharmacist-patient interactions.

PubMed

Chevalier, Bernadette A M; Watson, Bernadette M; Barras, Michael A; Cottrell, William N; Angus, Daniel J

2018-01-01

Pharmacist-patient communication during medication counselling has been successfully investigated using Communication Accommodation Theory (CAT). Communication researchers in other healthcare professions have utilised Discursis software as an adjunct to their manual qualitative analysis processes. Discursis provides a visual, chronological representation of communication exchanges and identifies patterns of interactant engagement. The aim of this study was to describe how Discursis software was used to enhance previously conducted qualitative analysis of pharmacist-patient interactions (by visualising pharmacist-patient speech patterns, episodes of engagement, and identifying CAT strategies employed by pharmacists within these episodes). Visual plots from 48 transcribed audio recordings of pharmacist-patient exchanges were generated by Discursis. Representative plots were selected to show moderate-high and low- level speaker engagement. Details of engagement were investigated for pharmacist application of CAT strategies (approximation, interpretability, discourse management, emotional expression, and interpersonal control). Discursis plots allowed for identification of distinct patterns occurring within pharmacist-patient exchanges. Moderate-high pharmacist-patient engagement was characterised by multiple off-diagonal squares while alternating single coloured squares depicted low engagement. Engagement episodes were associated with multiple CAT strategies such as discourse management (open-ended questions). Patterns reflecting pharmacist or patient speaker dominance were dependant on clinical setting. Discursis analysis of pharmacist-patient interactions, a novel application of the technology in health communication, was found to be an effective visualisation tool to pin-point episodes for CAT analysis. Discursis has numerous practical and theoretical applications for future health communication research and training. Researchers can use the software to support

Using Discursis to enhance the qualitative analysis of hospital pharmacist-patient interactions

PubMed Central

Barras, Michael A.; Angus, Daniel J.

2018-01-01

Introduction Pharmacist-patient communication during medication counselling has been successfully investigated using Communication Accommodation Theory (CAT). Communication researchers in other healthcare professions have utilised Discursis software as an adjunct to their manual qualitative analysis processes. Discursis provides a visual, chronological representation of communication exchanges and identifies patterns of interactant engagement. Aim The aim of this study was to describe how Discursis software was used to enhance previously conducted qualitative analysis of pharmacist-patient interactions (by visualising pharmacist-patient speech patterns, episodes of engagement, and identifying CAT strategies employed by pharmacists within these episodes). Methods Visual plots from 48 transcribed audio recordings of pharmacist-patient exchanges were generated by Discursis. Representative plots were selected to show moderate-high and low- level speaker engagement. Details of engagement were investigated for pharmacist application of CAT strategies (approximation, interpretability, discourse management, emotional expression, and interpersonal control). Results Discursis plots allowed for identification of distinct patterns occurring within pharmacist-patient exchanges. Moderate-high pharmacist-patient engagement was characterised by multiple off-diagonal squares while alternating single coloured squares depicted low engagement. Engagement episodes were associated with multiple CAT strategies such as discourse management (open-ended questions). Patterns reflecting pharmacist or patient speaker dominance were dependant on clinical setting. Discussion and conclusions Discursis analysis of pharmacist-patient interactions, a novel application of the technology in health communication, was found to be an effective visualisation tool to pin-point episodes for CAT analysis. Discursis has numerous practical and theoretical applications for future health communication research

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.

Surgeon's experiences of receiving peer benchmarked feedback using patient-reported outcome measures: a qualitative study.

PubMed

Boyce, Maria B; Browne, John P; Greenhalgh, Joanne

2014-06-27

The use of patient-reported outcome measures (PROMs) to provide healthcare professionals with peer benchmarked feedback is growing. However, there is little evidence on the opinions of professionals on the value of this information in practice. The purpose of this research is to explore surgeon's experiences of receiving peer benchmarked PROMs feedback and to examine whether this information led to changes in their practice. This qualitative research employed a Framework approach. Semi-structured interviews were undertaken with surgeons who received peer benchmarked PROMs feedback. The participants included eleven consultant orthopaedic surgeons in the Republic of Ireland. Five themes were identified: conceptual, methodological, practical, attitudinal, and impact. A typology was developed based on the attitudinal and impact themes from which three distinct groups emerged. 'Advocates' had positive attitudes towards PROMs and confirmed that the information promoted a self-reflective process. 'Converts' were uncertain about the value of PROMs, which reduced their inclination to use the data. 'Sceptics' had negative attitudes towards PROMs and claimed that the information had no impact on their behaviour. The conceptual, methodological and practical factors were linked to the typology. Surgeons had mixed opinions on the value of peer benchmarked PROMs data. Many appreciated the feedback as it reassured them that their practice was similar to their peers. However, PROMs information alone was considered insufficient to help identify opportunities for quality improvements. The reasons for the observed reluctance of participants to embrace PROMs can be categorised into conceptual, methodological, and practical factors. Policy makers and researchers need to increase professionals' awareness of the numerous purposes and benefits of using PROMs, challenge the current methods to measure performance using PROMs, and reduce the burden of data collection and information

Physician Interaction with Electronic Medical Records: A Qualitative Study

ERIC Educational Resources Information Center

Noteboom, Cherie Bakker

2010-01-01

The integration of EHR (Electronic Health Records) in IT infrastructures supporting organizations enable improved access to and recording of patient data, enhanced ability to make better and more-timely decisions, and improved quality and reduced errors. Despite these benefits, there are mixed results as to the use of EHR. The literature suggests…

Self-reported stressors among patients with Exhaustion Disorder: an exploratory study of patient records

PubMed Central

2014-01-01

Background Several researchers imply that both work-related and non-work-related stress exposure are likely to contribute to stress-related mental illness. Yet empirical studies investigating both domains seem to be limited, particularly in a clinical population. The purpose of this study was to a) explore which stressors (non-work and work-related) are reported as important for the onset of illness by patients seeking medical care for stress-related exhaustion and b) explore the prevalence of each stressor and examine whether the pattern differs between men and women. Methods This is an exploratory mixed method study, comprising patients at a specialist outpatient stress clinic. Information from medical records of 20 patients was initially used in a first qualitative step to construct the instrument, using a combination of a conventional content analysis and a directed content analysis. In the second phase patient records from 50 men and 50 women were selected and coded in accordance with the coding instrument. Frequency statistics were calculated for all stressors. Results A total of 24 categories of stressors (11 related to work and 13 related to private life) were identified in the first qualitative step. A median of four stressors, usually both work and non-work-related was reported by the patients. The most common stressors were 1) quantitative demands at work, 2) private relational conflicts and 3) emotional demands at work. Conclusions Work demands are, by far, the most prevalent stressor, followed by relational problems in private life. The pattern was similar for women and men, with a slight difference in the distribution between work and non-work stressors. Men and women also show similar patterns when comparing the occurrence of each stressor. Slight differences were seen, in particular with regard to managerial responsibility that was reported by 6% of the women compared to 36% of the men. One important practical implication of this study is that

Direct and Indirect Benefits Reported by Users of Transcutaneous Electrical Nerve Stimulation for Chronic Musculoskeletal Pain: Qualitative Exploration Using Patient Interviews.

PubMed

Gladwell, Peter William; Badlan, Kathryn; Cramp, Fiona; Palmer, Shea

2015-11-01

There is no consensus regarding the effectiveness of transcutaneous electrical nerve stimulation (TENS) for management of chronic musculoskeletal pain or chronic low back pain. A recent review of previous trial methodology identified significant problems with low treatment fidelity. There is little information available to guide selection of patient-reported outcome measures appropriate for TENS evaluation. The purpose of this study was to explore the experiences of patients at a secondary care pain clinic who successfully used TENS to help manage chronic musculoskeletal pain. These key informants were selected because they had the potential to generate knowledge that could inform research design and clinical practice. A qualitative method using individual semistructured interviews with open questions was selected for its capacity to generate rich data. A mini focus group informed the development of a discussion guide for semistructured interviews with 9 patients (6 women, 3 men). Thematic analysis was used as the primary data analysis method, and this analysis was enhanced by a case-level analysis of the context and processes of TENS use of each individual. Data analysis indicated that distraction from pain and a reduction in the sensations associated with muscle tension or spasm should be considered as separate outcomes from pain relief. These direct benefits led to a wide range of indirect benefits dependent on patient decision making, including medication reduction, enhanced function, psychological benefits, and enhanced ability to rest. The findings indicate that evaluating TENS using a unidimensional pain scale is likely to overlook potential benefits. The complex pattern of TENS usage, as well as multiple direct and indirect outcomes, indicates that TENS could be considered as a complex intervention. © 2015 American Physical Therapy Association.

Personality Disorder Patients' Perspectives on the Introduction of Imagery within Schema Therapy: A Qualitative Study of Patients' Experiences

ERIC Educational Resources Information Center

ten Napel-Schutz, Marieke C.; Abma, Tineke A.; Bamelis, Lotte; Arntz, Arnoud

2011-01-01

A qualitative study was done on patients' perspectives on the first phases of imagery work in the context of schema therapy (ST) for personality disorders. Patients participated in a multi-center randomized controlled study of the effectiveness of ST. Patients' experiences and opinions were collected with semistructured in-depth interviews at the…

Profiling Lung Cancer Patients Using Electronic Health Records.

PubMed

Menasalvas Ruiz, Ernestina; Tuñas, Juan Manuel; Bermejo, Guzmán; Gonzalo Martín, Consuelo; Rodríguez-González, Alejandro; Zanin, Massimiliano; González de Pedro, Cristina; Méndez, Marta; Zaretskaia, Olga; Rey, Jesús; Parejo, Consuelo; Cruz Bermudez, Juan Luis; Provencio, Mariano

2018-05-31

If Electronic Health Records contain a large amount of information about the patient's condition and response to treatment, which can potentially revolutionize the clinical practice, such information is seldom considered due to the complexity of its extraction and analysis. We here report on a first integration of an NLP framework for the analysis of clinical records of lung cancer patients making use of a telephone assistance service of a major Spanish hospital. We specifically show how some relevant data, about patient demographics and health condition, can be extracted; and how some relevant analyses can be performed, aimed at improving the usefulness of the service. We thus demonstrate that the use of EHR texts, and their integration inside a data analysis framework, is technically feasible and worth of further study.

Learn about the Cross-Media Electronic Reporting Rule

EPA Pesticide Factsheets

The Cross-Media Electronic Reporting Regulation (CROMERR) provides the legal framework for electronic reporting (ER) under all of the Environmental Protection Agency's (EPA) environmental regulations.

[Electronic patient record as the tool for better patient safety].

PubMed

Schneider, Henning

2015-01-01

Recent studies indicate again that there is a deficit in the use of electronic health records (EHR) in German hospitals. Despite good arguments in favour of their use, such as the rapid availability of data, German hospitals shy away from a wider implementation. The reason is the high cost of installing and maintaining the EHRs, for the benefit is difficult to evaluate in monetary terms for the hospital. Even if a benefit can be shown it is not necessarily evident within the hospital, but manifests itself only in the health system outside. Many hospitals only manage to partly implement EHR resulting in increased documentation requirements which reverse their positive effect.In the United States, electronic medical records are also viewed in light of their positive impact on patient safety. In particular, electronic medication systems prove the benefits they can provide in the context of patient safety. As a result, financing systems have been created to promote the digitalisation of hospitals in the United States. This has led to a large increase in the use of IT systems in the United States in recent years. The Universitätsklinikum Eppendorf (UKE) introduced electronic patient records in 2009. The benefits, in particular as regards patient safety, are numerous and there are many examples to illustrate this position. These positive results are intended to demonstrate the important role EHR play in hospitals. A financing system of the ailing IT landscape based on the American model is urgently needed to benefit-especially in terms of patient safety-from electronic medical records in the hospital.

Qualitative and quantitative evaluation of EHR-integrated mobile patient questionnaires regarding usability and cost-efficiency.

PubMed

Fritz, Fleur; Balhorn, Sebastian; Riek, Markus; Breil, Bernhard; Dugas, Martin

2012-05-01

The objective of this evaluation study is to assess a web-based application, currently available on iPad, to document questionnaires regarding patient reported outcomes such as quality of life. Based on the single source approach, the results of these questionnaires are available in the electronic health record to be used for treatment and research purposes. The assessment focuses on the usability and efficiency of the system. The system usability scale questionnaire with seven additional items was used to rate the usability by the patients. It was formally validated by a Cronbach Alpha test. In addition, semi-structured interviews were conducted with patients and medical staff. Time and cost measures, based on official tables of costs, were taken through workflow observations. This study was conducted in the department of dermatology at the University Hospital of Münster, Germany from April to June 2011. Using the web-based application questionnaire, results about patient reported outcomes like quality of life are immediately available in the electronic health record and can be used for treatment or research purposes. 118 patients and four staff members participated in the study. The usability score reached 80 from 100 points and patients as well as medical staff stated in the interviews that the usability of the web-based system was high, and they preferred it to the previously used paper-based questionnaires. In the setting of our pilot department the mobile devices amortized their costs after 6.7 months. In general, depending on the professional group who are going to post process the paper-based forms, the earliest break-even point to use mobile questionnaires is at 1737 paper sheets per year. The mobile patient questionnaires, integrated into the electronic health record, were well accepted in our pilot setting with high usability scores from patients and medical staff alike. The system has also proved to be cost-efficient compared to the paper

Effect of introduction of electronic patient reporting on the duration of ambulance calls.

PubMed

Kuisma, Markku; Väyrynen, Taneli; Hiltunen, Tuomas; Porthan, Kari; Aaltonen, Janne

2009-10-01

We examined the effect of the change from paper records to the electronic patient records (EPRs) on ambulance call duration. We retrieved call duration times 6 months before (group 1) and 6 months after (group 2) the introduction of EPR. Subgroup analysis of group 2 was fulfilled depending whether the calls were made during the first or last 3 months after EPR introduction. We analyzed 37 599 ambulance calls (17 950 were in group 1 and 19 649 were in group 2). The median call duration in group 1 was 48 minutes and in group 2 was 49 minutes (P = .008). In group 2, call duration was longer during the first 3 months after EPR introduction. In multiple linear regression analysis, urgency category (P < .0001), unit level (P < .0001), and transportation decision (P < .0001) influenced the call duration. The documentation method was not a significant factor. Electronic patient record system can be implemented in an urban ambulance service in such a way that documentation method does not become a significant factor in determining call duration in the long run. Temporary performance drop during the first 3 months after introduction was noticed, reflecting adaptation process to a new way of working.

Holistic Care for Patients During Weaning from Mechanical Ventilation: A Qualitative Study.

PubMed

Khalafi, Ali; Elahi, Nasrin; Ahmadi, Fazlollah

2016-11-01

Weaning patients from mechanical ventilation is a complex and highly challenging process. It requires continuity of care, the overall assessment of patients, and a focus on all aspects of patients' needs by critical care nurses. The aim of the present study was to explore holistic care while patients are being weaned from mechanical ventilation from the perspective of the critical care nurses. The study was carried out in the intensive care units (ICUs) of six hospitals in Ahvaz, Iran, from 2014 to 2015. In this qualitative study, 25 ICU staff including nurses, nurse managers, and nurse educators were selected by means of purposive sampling. Semi-structured interviews were used for data collection. The interview transcripts were then analyzed using qualitative content analysis. The four main themes that emerged to explain nurses' experiences of holistic care when weaning patients from mechanical ventilation include continuous care, a holistic overview of the patient, promoting human dignity, and the overall development of well-being. It was found that avoiding routine pivotal expertise, increasing consciousness of the nonphysical aspects of patients while providing treatment and presenting exclusive care, utilizing experienced ICU nurses, and placing more emphasis on effective communication with patients in order to honor them as human beings can all enhance the holistic quality of care.

Perspectives of patients and physicians about neuroendocrine tumors. A qualitative study

PubMed Central

Manolios, Emilie; Rebours, Vinciane; Revah-Levy, Anne; Ruszniewski, Philippe

2018-01-01

Purpose Gastrointestinal neuroendocrine tumors (NETs) are rare, complex to manage, and often have a chronic course. Qualitative methods are a tool of choice for focusing on patients' and physicians’ points of view especially when dealing with a complex and rare disease. Nonetheless, they remain undeveloped in research related to NETs. This study aimed to explore the experience of NETs among both patients and their physicians and to cross their perspectives for the purpose of finding pathways to improving care. Results Our analysis found two themes: (1) the questions raised by this disease, and (2) the complex experience of this singular disease. Our findings underlined the experience of confusion found among patients regarding the patient's unusual somatic experience and around the question of vocabulary, i.e. the naming of the disease and the semantic field of severity in the medical discourse. Conclusion Means for reducing the confusion that patients experience in this disease are needed. The explanations that the physician offers to the patient must clarify the issues related to NETs. We therefore propose a statement that all physicians can use to support patients diagnosed with neuroendocrine tumors to clear up potential confusion. Methods We conducted a qualitative study, based on 40 semi-structured interviews, in a specialized department of gastro-pancreatology. Participants, purposively selected until data saturation, came from two different sub-samples: (i) patients with a metastatic NETs (N = 20) and (ii) their referring physicians (N = 10). The data were examined by thematic analysis. PMID:29581833

How Accurate is Information that Patients Contribute to their Electronic Health Record?

PubMed Central

Wuerdeman, Lisa; Volk, Lynn; Pizziferri, Lisa; Tsurikova, Ruslana; Harris, Cathyann; Feygin, Raisa; Epstein, Marianna; Meyers, Kimberly; Wald, Jonathan S.; Lansky, David; Bates, David W.

2005-01-01

Increased patient interaction with medical records and the advent of personal health records (PHRs) may increase patients’ ability to contribute valid information to their Electronic Health Record (EHR) medical record. Patient input through a secure connection, whether it is a patient portal or PHR, will integrate many aspects of a patient’s health and may help lessen the information gap between patients and providers. Patient reported data should be considered a viable method of enhancing documentation but will not likely be as complete and accurate as more comprehensive data-exchange between providers. PMID:16779157

Medical narratives and patient analogs: the ethical implications of electronic patient records.

PubMed

Kluge, E H

1999-12-01

An electronic patient record consists of electronically stored data about a specific patient. It therefore constitutes a data-space. The data may be combined into a patient profile which is relative to a particular specialty as well as phenomenologically unique to the specific professional who constructs the profile. Further, a diagnosis may be interpreted as a path taken by a health care professional with a certain specialty through the data-space relative to the patient profile constructed by that professional. This way of looking at electronic patient records entails certain ethical implications about privacy and accessibility. However, it also permits the construction of artificial intelligence and competence algorithms for health care professionals relative to their specialties.

Validation of electronic systems to collect patient-reported outcome (PRO) data-recommendations for clinical trial teams: report of the ISPOR ePRO systems validation good research practices task force.

PubMed

Zbrozek, Arthur; Hebert, Joy; Gogates, Gregory; Thorell, Rod; Dell, Christopher; Molsen, Elizabeth; Craig, Gretchen; Grice, Kenneth; Kern, Scottie; Hines, Sheldon

2013-06-01

Outcomes research literature has many examples of high-quality, reliable patient-reported outcome (PRO) data entered directly by electronic means, ePRO, compared to data entered from original results on paper. Clinical trial managers are increasingly using ePRO data collection for PRO-based end points. Regulatory review dictates the rules to follow with ePRO data collection for medical label claims. A critical component for regulatory compliance is evidence of the validation of these electronic data collection systems. Validation of electronic systems is a process versus a focused activity that finishes at a single point in time. Eight steps need to be described and undertaken to qualify the validation of the data collection software in its target environment: requirements definition, design, coding, testing, tracing, user acceptance testing, installation and configuration, and decommissioning. These elements are consistent with recent regulatory guidance for systems validation. This report was written to explain how the validation process works for sponsors, trial teams, and other users of electronic data collection devices responsible for verifying the quality of the data entered into relational databases from such devices. It is a guide on the requirements and documentation needed from a data collection systems provider to demonstrate systems validation. It is a practical source of information for study teams to ensure that ePRO providers are using system validation and implementation processes that will ensure the systems and services: operate reliably when in practical use; produce accurate and complete data and data files; support management control and comply with any existing regulations. Furthermore, this short report will increase user understanding of the requirements for a technology review leading to more informed and balanced recommendations or decisions on electronic data collection methods. Copyright © 2013 International Society for

Electronic Health Records: An Enhanced Security Paradigm to Preserve Patient's Privacy

NASA Astrophysics Data System (ADS)

Slamanig, Daniel; Stingl, Christian

In recent years, demographic change and increasing treatment costs demand the adoption of more cost efficient, highly qualitative and integrated health care processes. The rapid growth and availability of the Internet facilitate the development of eHealth services and especially of electronic health records (EHRs) which are promising solutions to meet the aforementioned requirements. Considering actual web-based EHR systems, patient-centric and patient moderated approaches are widely deployed. Besides, there is an emerging market of so called personal health record platforms, e.g. Google Health. Both concepts provide a central and web-based access to highly sensitive medical data. Additionally, the fact that these systems may be hosted by not fully trustworthy providers necessitates to thoroughly consider privacy issues. In this paper we define security and privacy objectives that play an important role in context of web-based EHRs. Furthermore, we discuss deployed solutions as well as concepts proposed in the literature with respect to this objectives and point out several weaknesses. Finally, we introduce a system which overcomes the drawbacks of existing solutions by considering an holistic approach to preserve patient's privacy and discuss the applied methods.

Urban Alabama Physicians and the Electronic Medical Record: A Qualitative Study

ERIC Educational Resources Information Center

Tiggle, Michele

2012-01-01

The electronic medical record (EMR) is an information technology tool supporting the examination, treatment, and care of a patient. The EMR allows physicians to view a patient's record showing current medications, a history of visits from health care providers with notes from those visits, a problem list, a functional status assessment, a schedule…

Harmonized patient-reported data elements in the electronic health record: supporting meaningful use by primary care action on health behaviors and key psychosocial factors

PubMed Central

Boyle, Maureen; Emmons, Karen M; Glasgow, Russell E; Hesse, Bradford W; Kaplan, Robert M; Krist, Alexander H; Moser, Richard P; Taylor, Martina V

2012-01-01

Background Electronic health records (EHR) have the potential to improve patient care through efficient access to complete patient health information. This potential may not be reached because many of the most important determinants of health outcome are rarely included. Successful health promotion and disease prevention requires patient-reported data reflecting health behaviors and psychosocial issues. Furthermore, there is a need to harmonize this information across different EHR systems. Methods To fill this gap a three-phased process was used to conceptualize, identify and recommend patient-reported data elements on health behaviors and psychosocial factors for the EHR. Expert panels (n=13) identified candidate measures (phase 1) that were reviewed and rated by a wide range of health professionals (n=93) using the grid-enabled measures wiki social media platform (phase 2). Recommendations were finalized through a town hall meeting with key stakeholders including patients, providers, researchers, policy makers, and representatives from healthcare settings (phase 3). Results Nine key elements from three areas emerged as the initial critical patient-reported elements to incorporate systematically into EHR—health behaviors (eg, exercise), psychosocial issues (eg, distress), and patient-centered factors (eg, demographics). Recommendations were also made regarding the frequency of collection ranging from a single assessment (eg, demographic characteristics), to annual assessment (eg, health behaviors), or more frequent (eg, patient goals). Conclusions There was strong stakeholder support for this initiative reflecting the perceived value of incorporating patient-reported elements into EHR. The next steps will include testing the feasibility of incorporating these elements into the EHR across diverse primary care settings. PMID:22511015

An examination of safety reports involving electronic flight bags and portable electronic devices

DOT National Transportation Integrated Search

2014-06-01

The purpose of this research was to develop a better understanding of safety considerations with the use of Electronic Flight Bags (EFBs) and Portable Electronic Devices (PEDs) by examining safety reports from Aviation Safety Reporting System (ASRS),...

Decisions about weight management: a synthesis of qualitative studies of obesity.

PubMed

Brown, I; Gould, J

2011-04-01

There is a high non-attendance and dropout attrition from weight management interventions for adults with obesity. Patient dissatisfaction with consultations involving decisions about interventions may be a factor. A systematic review was undertaken of qualitative studies reporting perceptions, experiences, contexts and influences for adults facing, or reflecting on, weight management. The aim was to synthesize a generic model of influences on decision-making about weight management for adult patients. Electronic database and hand searches identified 29 qualitative studies involving 1387 participants (mean age 45.3 years; mean BMI 37.1 kg m(-2) ; 79.9% women). Seven overarching themes were inductively derived from extracted data spanning: cultural identity; social structures such as gender; responses to obesity stigma; previous weight loss experiences; personal motivators and barriers; social support; and practical resources. A model is presented in the paper. Improving decisions about weight management requires attention to how diffuse cultural and psycho-social factors, such as obesity stigma, influence patient choices. Reflection on experiences of previous attempts at weight loss is also essential, as are practical resource factors - particularly for less affluent groups. Considering these factors along with more established theories of individual psychological motivations and barriers may help to improve initial participation and retention within interventions. © 2011 The Authors. Clinical Obesity © 2011 International Association for the Study of Obesity.

Cardiac implantable electronic device infection due to Mycobacterium species: a case report and review of the literature.

PubMed

Al-Ghamdi, Bandar; Widaa, Hassan El; Shahid, Maie Al; Aladmawi, Mohammed; Alotaibi, Jawaher; Sanei, Aly Al; Halim, Magid

2016-08-24

Infection of cardiac implantable electronic devices is a serious cardiovascular disease and it is associated with a high mortality. Mycobacterium species may rarely cause cardiac implantable electronic devices infection. We are reporting a case of miliary tuberculosis in an Arab patient with dilated cardiomyopathy and a cardiac resynchronization therapy-defibrillator device that was complicated with infection of his cardiac resynchronization therapy-defibrillator device. To our knowledge, this is the third case in the literature with such a presentation and all patients died during the course of treatment. This underscores the importance of early diagnosis and management. We also performed a literature review of reported cases of cardiac implantable electronic devices infection related to Mycobacterium species. Cardiac implantable electronic devices infection due to Mycobacterium species is an uncommon but a well-known entity. Early diagnosis and prompt management may result in a better outcome.

78 FR 46005 - NPDES Electronic Reporting Rule

Federal Register 2010, 2011, 2012, 2013, 2014

2013-07-30

... reports, and enforcement responses is provided (i.e., electronic rather than paper-based), it does not... is proposing a regulation that would require electronic reporting for current paper-based NPDES....regulations.gov Web site is an ``anonymous access'' system, which means EPA will not know your identity or...

Life impact of ankle fractures: qualitative analysis of patient and clinician experiences.

PubMed

McPhail, Steven M; Dunstan, Joel; Canning, Julie; Haines, Terry P

2012-11-21

Ankle fractures are one of the more commonly occurring forms of trauma managed by orthopaedic teams worldwide. The impacts of these injuries are not restricted to pain and disability caused at the time of the incident, but may also result in long term physical, psychological, and social consequences. There are currently no ankle fracture specific patient-reported outcome measures with a robust content foundation. This investigation aimed to develop a thematic conceptual framework of life impacts following ankle fracture from the experiences of people who have suffered ankle fractures as well as the health professionals who treat them. A qualitative investigation was undertaken using in-depth semi-structured interviews with people (n=12) who had previously sustained an ankle fracture (patients) and health professionals (n=6) that treat people with ankle fractures. Interviews were audio-recorded and transcribed. Each phrase was individually coded and grouped in categories and aligned under emerging themes by two independent researchers. Saturation occurred after 10 in-depth patient interviews. Time since injury for patients ranged from 6 weeks to more than 2 years. Experience of health professionals ranged from 1 year to 16 years working with people with ankle fractures. Health professionals included an Orthopaedic surgeon (1), physiotherapists (3), a podiatrist (1) and an occupational therapist (1). The emerging framework derived from patient data included eight themes (Physical, Psychological, Daily Living, Social, Occupational and Domestic, Financial, Aesthetic and Medication Taking). Health professional responses did not reveal any additional themes, but tended to focus on physical and occupational themes. The nature of life impact following ankle fractures can extend beyond short term pain and discomfort into many areas of life. The findings from this research have provided an empirically derived framework from which a condition-specific patient-reported outcome

Using secondary analysis of qualitative data of patient experiences of health care to inform health services research and policy.

PubMed

Ziebland, Sue; Hunt, Kate

2014-07-01

Qualitative research is recognized as an important method for including patients' voices and experiences in health services research and policy-making, yet the considerable potential to analyse existing qualitative data to inform health policy and practice has been little realized. This failure may partly be explained by: a lack of awareness amongst health policy makers of the increasing wealth of qualitative data available; and around 15 years of internal debates among qualitative researchers on the strengths, limitations and validity of re-use of qualitative data. Whilst acknowledging the challenges of qualitative secondary data analysis, we argue that there is a growing imperative to be pragmatic and to undertake analysis of existing qualitative data collections where they have the potential to contribute to health policy formulation. Time pressures are inherent in the policy-making process and in many circumstances it is not possible to seek funding, conduct and analyse new qualitative studies of patients' experiences in time to inform a specific policy. The danger then is that the patient voice, and the experiences of relatives and carers, is either excluded or included in a way that is easily dismissed as 'unrepresentative'. We argue that secondary analysis of qualitative data collections may sometimes be an effective means to enable patient experiences to inform policy decision-making. © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.