ENRICH: A promising oncology nurse training program to implement ASCO clinical practice guidelines on fertility for AYA cancer patients.

PubMed

Vadaparampil, Susan T; Gwede, Clement K; Meade, Cathy; Kelvin, Joanne; Reich, Richard R; Reinecke, Joyce; Bowman, Meghan; Sehovic, Ivana; Quinn, Gwendolyn P

2016-11-01

We describe the impact of ENRICH (Educating Nurses about Reproductive Issues in Cancer Healthcare), a web-based communication-skill-building curriculum for oncology nurses regarding AYA fertility and other reproductive health issues. Participants completed an 8-week course that incorporated didactic content, case studies, and interactive learning. Each learner completed a pre- and post-test assessing knowledge and a 6-month follow-up survey assessing learner behaviors and institutional changes. Out of 77 participants, the majority (72%) scored higher on the post-test. Fifty-four participants completed the follow-up survey: 41% reviewed current institutional practices, 20% formed a committee, and 37% gathered patient materials or financial resources (22%). Participants also reported new policies (30%), in-service education (37%), new patient education materials (26%), a patient navigator role (28%), and workplace collaborations with reproductive specialists (46%). ENRICH improved nurses' knowledge and involvement in activities addressing fertility needs of oncology patients. Our study provides a readily accessible model to prepare oncology nurses to integrate American Society of Clinical Oncology guidelines and improve Quality Oncology Practice Initiative measures related to fertility. Nurses will be better prepared to discuss important survivorship issues related to fertility and reproductive health, leading to improved quality of life outcomes for AYAs. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Overcoming psychosocial and developmental barriers to blood and marrow transplantation (BMT) in an adolescent/young adult (AYA) transgender patient with chronic myelogenous leukemia.

PubMed

Khazal, Sajad; Abdel-Azim, Hisham; Kapoor, Neena; Mahadeo, Kris M

2014-11-01

Adolescents/young adults (AYAs) afflicted with cancer face unique barriers to potentially standard curative therapies, such as blood and marrow transplantation (BMT). Transgender AYAs face additional barriers and there is a dearth of published literature regarding their oncology-related experience. We present the case of an AYA male-to-female (MTF) transgender patient on cross-sex hormone therapy, with a history of Chronic Myelogenous Leukemia (CML) and significant psychosocial barriers, which initially served as a barrier to BMT at two different centers; we modified our standard consent and education process and was able to successfully proceed with BMT and subsequently cure her CML. Despite unique challenges, AYA and transgender patients with significant psychosocial barriers may achieve successful outcomes with BMT. Research is needed regarding guidelines for cross-sex hormone therapy administration for patients undergoing BMT and other issues, which may be unique to the transgender experience.

[Cancer and Career? - A Qualitative Study of Job Status of Young Adult Cancer Survivors].

PubMed

Mentschke, Lisa; Leuteritz, Katja; Daneck, Lisa; Breuer, Nora; Sender, Annekathrin; Friedrich, Michael; Nowe, Erik; Stöbel-Richter, Yve; Geue, Kristina

2017-02-01

Purpose: To examine the impact of cancer on work and education for AYA. Collect information about AYA's return to work/return to study. Methods: 18 AYA (10 female) aged 18 to 39 (m=27 years) at time of diagnosis completed a semi-structured interview. Qualitative content analysis was used to generate results. Results: 11 of 18 AYA had already returned to work/study. Flexible structures and emotional support of colleagues and managers were reported being helpful. 10 AYA planed or had already reduced job tasks, hours of work or further education. This was mostly compelled by physical disabilities due to cancer or treatment. Most AYA asked for more support within the social insurance system. Conclusions: Cancer often leads to changes in work or education. More social and vocational counseling to support AYA's rehabilitation process seems to be necessary. © Georg Thieme Verlag KG Stuttgart · New York.

"Cancer sucks," and other ponderings by adolescent and young adult cancer survivors.

PubMed

Zebrack, Brad; Kent, Erin E; Keegan, Theresa H M; Kato, Ikuko; Smith, Ashley Wilder

2014-01-01

As part of the National Cancer Institute's AYA HOPE study, 296 adolescent and young adults (AYAs) completed an open-ended survey item asking them to describe their medical care or experience with cancer. Patient, provider, and system-level characteristics all appear to influence AYAs' perceptions of their medical care. Participants attributed levels of satisfaction with care to the availability and communication of information, the management of side-effects, and the expediency and flexibility of treatments. Struggles with health insurance and finances were evident. Findings contribute to a better understanding of AYAs' cancer treatment experiences and will inform improvements to oncology care for this population.

Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers?

PubMed Central

Keegan, Theresa H.M.; Tao, Li; DeRouen, Mindy C.; Wu, Xiao-Cheng; Prasad, Pinki; Lynch, Charles F.; Shnorhavorian, Margarett; Zebrack, Brad J.; Chu, Roland; Harlan, Linda C.; Smith, Ashley W.; Parsons, Helen M.

2014-01-01

Purpose Adolescent and young adult (AYA) cancer survivors experience barriers to utilizing healthcare, but the determinants of cancer-related medical care of AYAs has not been fully explored. Methods We studied factors associated with medical care utilization among 465 AYA cancer survivors in the AYA Health Outcomes and Patient Experience Study (AYA HOPE), a cohort of 15 to 39 year-olds recently diagnosed with germ cell cancer, lymphoma, sarcoma, or acute lymphocytic leukemia. Descriptive statistics and multivariate logistic regression methods were used. Results Most AYA cancer survivors (95%), who were 15–35 months post diagnosis, received medical care in the past 12 months and 17% were undergoing cancer treatment. In multivariate analyses, compared with AYAs with no cancer-related medical visits in the previous year, AYAs receiving cancer-related care were more likely to currently have health insurance (odds ratio (OR) = 4.9; 95% confidence interval (CI): 1.7–13.8) or have had health insurance in the past year (OR= 4.0; 95% CI: 0.99–16.3). Cancer recurrence, lacking employment and negative changes in self-reported general health were associated with ongoing cancer treatment versus other cancer-related medical care. 11% of all AYAs and 25% of AYAs who did not receive medical care in the past 12-months lost health insurance between the initial and follow-up surveys. Conclusion AYA cancer survivors with health insurance were much more likely to receive cancer-related medical care than those without insurance. Implications for Cancer Survivors Despite the need for post-treatment medical care, lacking health insurance is a barrier to receiving any medical care among AYAs. PMID:24408440

Health Status of Adolescent and Young Adult Cancer Survivors

PubMed Central

Tai, Eric; Buchanan, Natasha; Townsend, Julie; Fairley, Temeika; Moore, Angela; Richardson, Lisa C.

2017-01-01

BACKGROUND Adolescents and young adults (AYA) ages 15 to 29 years who are diagnosed with cancer are at risk for long-term morbidity and mortality associated with treatment of their cancer and the cancer itself. In this article, the authors describe the self-reported health status of AYA cancer survivors. METHODS The authors examined 2009 data from the Behavioral Risk Factor Surveillance System, including demographic characteristics, risk behaviors, chronic conditions, health status, and health care access, among AYA cancer survivors compared with respondents who had no history of cancer. RESULTS The authors identified 4054 AYA cancer survivors and 345,592 respondents who had no history of cancer. AYA cancer survivors, compared with respondents who had no history of cancer, reported a significantly higher prevalence of current smoking (26% vs 18%); obesity (31% vs 27%); chronic conditions, including cardiovascular disease (14% vs 7%), hypertension (35% vs 29%), asthma (15% vs 8%), disability (36% vs 18%), and poor mental health (20% vs 10%) and physical health (24% vs 10%); and not receiving medical care because of cost (24% vs 15%). CONCLUSIONS AYA cancer survivors commonly reported adverse behavioral, medical, and health care access characteristics that may lead to poor long-term medical and psychosocial outcomes. Increased adherence to established follow-up guidelines may lead to improved health among AYA cancer survivors.* PMID:22688896

Identifying and Addressing the Needs of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine Workshop

PubMed Central

Beaupin, Lynda K.; Demark-Wahnefried, Wendy; Fasciano, Karen; Ganz, Patricia A.; Hayes-Lattin, Brandon; Hudson, Melissa M.; Nevidjon, Brenda; Oeffinger, Kevin C.; Rechis, Ruth; Richardson, Lisa C.; Seibel, Nita L.; Smith, Ashley W.

2015-01-01

Cancer is the leading disease-related cause of death in adolescents and young adults (AYAs). This population faces many short- and long-term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research. PMID:25568146

Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers?

PubMed

Keegan, Theresa H M; Tao, Li; DeRouen, Mindy C; Wu, Xiao-Cheng; Prasad, Pinki; Lynch, Charles F; Shnorhavorian, Margarett; Zebrack, Brad J; Chu, Roland; Harlan, Linda C; Smith, Ashley W; Parsons, Helen M

2014-06-01

Adolescent and young adult (AYA) cancer survivors experience barriers to utilizing healthcare, but the determinants of cancer-related medical care of AYAs has not been fully explored. We studied factors associated with medical care utilization among 465 AYA cancer survivors in the AYA Health Outcomes and Patient Experience Study, a cohort of 15 to 39 year olds recently diagnosed with germ cell cancer, lymphoma, sarcoma, or acute lymphocytic leukemia. Descriptive statistics and multivariate logistic regression methods were used. Most AYA cancer survivors (95%), who were 15-35 months post diagnosis, received medical care in the past 12 months and 17% were undergoing cancer treatment. In multivariate analyses, compared with AYAs with no cancer-related medical visits in the previous year, AYAs receiving cancer-related care were more likely to currently have health insurance (odds ratio (OR) = 4.9; 95% confidence interval (CI) = 1.7-13.8) or have had health insurance in the past year (OR = 4.0; 95% CI = 0.99-16.3). Cancer recurrence, lacking employment, and negative changes in self-reported general health were associated with ongoing cancer treatment versus other cancer-related medical care. Eleven percent of all AYAs and 25% of AYAs who did not receive medical care in the past 12 months lost health insurance between the initial and follow-up surveys. AYA cancer survivors with health insurance were much more likely to receive cancer-related medical care than those without insurance. Despite the need for post-treatment medical care, lacking health insurance is a barrier to receiving any medical care among AYAs.

Emergency Department Visits by Adolescent and Young Adult Cancer Patients Compared with Pediatric Cancer Patients in the United States.

PubMed

Kaul, Sapna; Russell, Heidi; Livingston, John A; Kirchhoff, Anne C; Jupiter, Daniel

2018-06-20

Limited information exists on emergency department (ED) visits for adolescent and young adult (AYA) patients with cancer. We examined the clinical reasons for ED visits, and outcomes, for AYAs with cancer compared to pediatric cancer patients. The 2013 Nationwide Emergency Department Sample data were used to identify 53,274 AYA (ages 15-39) and 6952 pediatric (ages 0-14) cancer ED visits. We evaluated patient (i.e., demographic and diagnosis) and hospital characteristics, and the ED event outcome (admitted to the same hospital or treated/released). Clinical reasons for visits were identified as procedures, infections, or noninfectious toxicities. Variables were compared between groups using chi-squared tests. Logistic regressions identified characteristics associated with the outcome between and within groups. AYA cancer visits were more likely to be self-paid (15.8% vs. 1.9%, p < 0.001), and be from low-income households and nonmetro counties than pediatric visits. Toxicity was the most prevalent reason for AYA visits (46.0%) and infections for pediatrics (47.3%, p < 0.001). AYA cancer visits were less likely to be admitted (OR = 0.84, 95% CI = 0.71-0.98; p = 0.03) than pediatric cancer. Among AYAs, self-paid visits were less likely to be admitted compared with privately insured visits (OR = 0.58, 95% CI: 0.52-0.66, p < 0.001). Self-pay did not affect the outcome for pediatric visits. In the United States, compared with pediatric cancer patients, AYAs with cancer visit EDs more often for toxicity-related problems, and are more often self-paid and from poorer households. These distinctive features impacting health service use should be incorporated into care plans aimed at delineating effective care for these patients.

Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study.

PubMed

Keegan, Theresa H M; Lichtensztajn, Daphne Y; Kato, Ikuko; Kent, Erin E; Wu, Xiao-Cheng; West, Michelle M; Hamilton, Ann S; Zebrack, Brad; Bellizzi, Keith M; Smith, Ashley W

2012-09-01

We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. We studied 523 AYAs recruited from seven population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin's lymphoma, non-Hodgkin's lymphoma, germ cell cancer, or sarcoma in 2007-2008. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29 % for in-home nursing to 75 % for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-white race/ethnicity, and participants who reported less than excellent general health or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥3 physical treatment-related symptoms. Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.

Unmet adolescent and young adult cancer survivors information and service needs: A population-based cancer registry study

PubMed Central

Keegan, Theresa H.M.; Lichtensztajn, Daphne Y.; Kato, Ikuko; Kent, Erin E.; Wu, Xiao-Cheng; West, Michelle M.; Hamilton, Ann S.; Zebrack, Brad; Bellizzi, Keith M.; Smith, Ashley W.

2012-01-01

Purpose We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15-39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs. Methods We studied 523 AYAs recruited from 7 population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, germ cell cancer or sarcoma in 2007-08. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors. Results More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29% for in-home nursing to 75% for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-White race/ethnicity, and participants who reported less than excellent general health, or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥ 3 physical treatment-related symptoms. Conclusions Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors. Implications for Cancer Survivors We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals. PMID:22457219

Increased risk of second malignant neoplasms in adolescents and young adults with cancer.

PubMed

Lee, Jean S; DuBois, Steven G; Coccia, Peter F; Bleyer, Archie; Olin, Rebecca L; Goldsby, Robert E

2016-01-01

The authors describe the incidence and characteristics of secondary malignant neoplasms (SMNs) in adolescent and young adult (AYA) cancer survivors compared with those in younger and older cancer survivors. Children aged ≤ 14 years, AYAs aged 15 to 39, and older adults aged ≥ 40 years at the time of primary diagnosis who were reported as cancer survivors in the Surveillance, Epidemiology, and End Results (SEER) program between 1973 and 2011 were compared in this population-based analysis. The primary analysis was the risk that an SMN would occur ≥ 5 years after the original diagnosis for patients who had the more common AYA cancers (leukemia, lymphoma, testicular malignancy, ovarian malignancy, melanoma, and cancers of the thyroid, breast, soft tissue, or bone). The standardized incidence ratio (SIR), absolute excess risk (AER), and cumulative incidence of SMN for the selected cancers were assessed. The risk of SMN for the entire cohort also was analyzed. Of the 148,558 AYA survivors who were diagnosed with a selected cancer, 7384 developed an SMN 5 years after their original diagnosis. The SIRs (95% confidence intervals [CIs]) were 1.58 (95% CI, 1.55-1.62) for AYAs, 4.26 (95% CI, 3.77-4.80) for children, and 1.10 (95% CI, 1.09-1.11) for older adults, and the AERs were 22.9, 16.6, and 14.7, respectively. The cumulative incidence of SMN at 30 years was 13.9% for the AYA group. The most common SMNs in AYAs were breast cancer, gastrointestinal cancer, genital cancers, and melanoma. AYAs who had received radiation therapy had a higher cumulative incidence of SMN. AYAs who survive cancer for more than 5 years have a higher relative risk of SMN compared with the general population and have a higher absolute risk of SMN compared with younger or older cancer survivors. © 2015 American Cancer Society.

Measuring Development of Adolescent and Young Adult Cancer Patients: An Integrative Review of Available Instruments.

PubMed

Bell, Cynthia J; Bell, Ryan A; Zebrack, Brad; Kato, Ikuko; Morse, Alyssa; Borinstein, Scott C

2018-06-01

Adolescents and young adults (AYAs) 15-39 years old face unique challenges during cancer treatment as developmental and social needs are often disrupted to achieve cure. Developmentally appropriate supportive care for AYAs across the cancer trajectory is needed. The purpose of this review is to identify and describe instruments that measure AYA development across physical, psychological, and social domains, commenting on the instruments' psychometric properties and usefulness in clinical practice and research. A computerized literature search published in English from 1950 to January of 2017 was conducted utilizing the following databases: Mental Measurements Yearbook (MMY), Health and Psychosocial Instruments, PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, and Google Scholar. The following instruments were identified and described: the Child Health and Illness Profile-Adolescent Edition (CHIP-AE); the Course of Life Questionnaire; the Developmental Task Questionnaire (DTQ); the Impact of Cancer scale for childhood survivors and AYAs (IOC-CS and IOC-AYA); the McCleery Scale of Adolescent Development (MSAD); and the Minneapolis-Manchester Quality of Life Adolescent and Young Adult Form (MMQL-AF and MMQL-YA). Among currently available instruments, the IOC-AYA and MMQL-AF were relevant to AYAs undergoing or completing cancer therapy. However, validation for the IOC-AYA occurred in cancer survivors off treatment so further psychometric evaluation is needed in AYAs currently undergoing cancer treatment. Furthermore, the MMQL-AF has been validated for use during active cancer treatment, but is limited to adolescents 13-20 years. Further research may be needed to create or refine instruments measuring the developmental impact in AYAs, particularly emerging adults undergoing active cancer treatment.

Unique Characteristics of Adolescent and Young Adult Acute Lymphoblastic Leukemia, Breast Cancer, and Colon Cancer

PubMed Central

Seibel, Nita L.; Blair, Donald G.; Albritton, Karen; Hayes-Lattin, Brandon

2011-01-01

Each year in the United States, nearly 70 000 individuals between the ages of 15 and 40 years are diagnosed with cancer. Although overall cancer survival rates among pediatric and older adult patients have increased in recent decades, there has been little improvement in survival of adolescent and young adult (AYA) cancer patients since 1975 when collected data became adequate to evaluate this issue. In 2006, the AYA Oncology Progress Review Group made recommendations for addressing the needs of this population that were later implemented by the LIVESTRONG Young Adult Alliance. One of their overriding questions was whether the cancers seen in AYA patients were biologically different than the same cancers in adult and/or pediatric patients. On June 9–10, 2009, the National Cancer Institute (NCI) and the Lance Armstrong Foundation (LAF) convened a workshop in Bethesda, MD, entitled “Unique Characteristics of AYA Cancers: Focus on Acute Lymphocytic Leukemia (ALL), Breast Cancer and Colon Cancer” that aimed to examine the current state of basic and translational research on these cancers and to discuss the next steps to improve their prognosis and treatment. PMID:21436065

Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review

PubMed Central

Wakefield, Claire E.

2013-01-01

Adolescents and young adults (AYAs) with cancer must simultaneously navigate the challenges associated with their cancer experience, whilst striving to achieve a number of important developmental milestones at the cusp of adulthood. The disruption caused by their cancer experience at this critical life-stage is assumed to be responsible for significant distress among AYAs living with cancer. The quality and severity of psychological outcomes among AYAs remain poorly documented, however. This review examined the existing literature on psychological outcomes among AYAs living with cancer. All psychological outcomes (both distress and positive adjustment) were included, and AYAs were included across the cancer trajectory, ranging from newly-diagnosed patients, to long-term cancer survivors. Four key research questions were addressed. Section 1 answered the question, “What is the nature and prevalence of distress (and other psychological outcomes) among AYAs living with cancer?” and documented rates of clinical distress, as well as evidence for the trajectory of this distress over time. Section 2 examined the individual, cancer/treatment-related and socio-demographic factors that have been identified as predictors of these outcomes in this existing literature. Section 3 examined current theoretical models relevant to explaining psychological outcomes among AYAs, including developmental models, socio-cognitive and family-systems models, stress-coping frameworks, and cognitive appraisal models (including trauma and meaning making models). The mechanisms implicated in each model were discussed, as was the existing evidence for each model. Converging evidence implicating the potential role of autobiographical memory and future thinking systems in how AYAs process and integrate their cancer experience into their current sense of self and future goals are highlighted. Finally, Section 4 addressed the future of psycho-oncology in understanding and conceptualizing

Psychosocial Interventions for Adolescents and Young Adults with Cancer.

PubMed

Phillips, Celeste R; Davis, Lorie L

2015-08-01

To summarize and evaluate the studies published since 2007 on psychosocial interventions designed for adolescents and young adults (AYA) with cancer. PubMed, Ovid, and PsycINFO. Our review confirms that the development and evaluation of psychosocial interventions for AYA is still in its infancy. Only five studies were identified and these generally had small samples and limited results. It is important for nurses to assess the needs of AYA. Incorporating creative ways for AYA to express their needs and self-reflect seems to be critically important and may help AYA cope positively with the cancer experience. Copyright © 2015 Elsevier Inc. All rights reserved.

The care of adolescents and young adults with cancer: results of the ESMO/SIOPE survey.

PubMed

Saloustros, Emmanouil; Stark, Daniel P; Michailidou, Kyriaki; Mountzios, Giannis; Brugieres, Laurence; Peccatori, Fedro Alessandro; Jezdic, Svetlana; Essiaf, Samira; Douillard, Jean-Yves; Bielack, Stefan

2017-01-01

Adolescents and young adults (AYA) with cancer require dedicated clinical management and care. Little is known about the training and practice of European healthcare providers in regard to AYA and the availability of specialised services. A link to an online survey was sent to members of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE). The link was also sent to ESMO National Representatives and circulated to other European oncology groups. Questions covered the demographics and clinical training of respondents, their definition of AYA, education about AYA cancer, access to specialised clinical and supportive care, research and further education. Data from Europe were analysed by region. Three hundred tweenty two questionnaires were submitted and we focused on data from the 266 European healthcare professionals. Responses revealed considerable variation both within and between countries in the definition of AYA. Over two-thirds of respondents did not have access to specialised centres for AYA (67%), were not aware of research initiatives focusing on AYA with cancer (69%) and had no access to specialist services for managing the late effects of treatment (67%). The majority of the respondents were able to refer AYA patients to professional psychological support and specialised social workers. However, more than half had no access to an age-specialised nurse or specialised AYA education. Overall, 38% of respondents reported that their AYA patients did not have access to fertility specialists. This figure was 76% in Eastern Europe. Lack of specialised AYA care was particularly evident in Eastern and South-Eastern Europe. There is important underprovision and inequity of AYA cancer care across Europe. Improving education and research focused on AYA cancer care should be a priority.

Sociodemographic disparities in survival for adolescents and young adults with cancer differ by health insurance status.

PubMed

DeRouen, Mindy C; Parsons, Helen M; Kent, Erin E; Pollock, Brad H; Keegan, Theresa H M

2017-08-01

To investigate associations of sociodemographic factors-race/ethnicity, neighborhood socioeconomic status (SES), and health insurance-with survival for adolescents and young adults (AYAs) with invasive cancer. Data on 80,855 AYAs with invasive cancer diagnosed in California 2001-2011 were obtained from the California Cancer Registry. We used multivariable Cox proportional hazards regression to estimate overall survival. Associations of public or no insurance with greater risk of death were observed for 11 of 12 AYA cancers examined. Compared to Whites, Blacks experienced greater risk of death, regardless of age or insurance, while greater risk of death among Hispanics and Asians was more apparent for younger AYAs and for those with private/military insurance. More pronounced neighborhood SES disparities in survival were observed among AYAs with private/military insurance, especially among younger AYAs. Lacking or having public insurance was consistently associated with shorter survival, while disparities according to race/ethnicity and neighborhood SES were greater among AYAs with private/military insurance. While health insurance coverage associates with survival, remaining racial/ethnic and socioeconomic disparities among AYAs with cancer suggest additional social factors also need consideration in intervention and policy development.

Impact of breast cancer subtypes on 3-year survival among adolescent and young adult women

PubMed Central

2013-01-01

Introduction Young women have poorer survival after breast cancer than do older women. It is unclear whether this survival difference relates to the unique distribution of hormone receptor (HR) and human epidermal growth factor receptor 2 (HER2)-defined molecular breast cancer subtypes among adolescent and young adult (AYA) women aged 15 to 39 years. The purpose of our study was to examine associations between breast cancer subtypes and short-term survival in AYA women, as well as to determine whether the distinct molecular subtype distribution among AYA women explains the unfavorable overall breast cancer survival statistics reported for AYA women compared with older women. Methods Data for 5,331 AYA breast cancers diagnosed between 2005 and 2009 were obtained from the California Cancer Registry. Survival by subtype (triple-negative; HR+/HER2-; HR+/HER2+; HR-/HER2+) and age-group (AYA versus 40- to 64-year-olds) was analyzed with Cox proportional hazards regression with follow-up through 2010. Results With up to 6 years of follow-up and a mean survival time of 3.1 years (SD = 1.5 years), AYA women diagnosed with HR-/HER + and triple-negative breast cancer experienced a 1.6-fold and 2.7-fold increased risk of death, respectively, from all causes (HR-/HER + hazard ratio: 1.55; 95% confidence interval (CI): 1.10 to 2.18; triple-negative HR: 2.75; 95% CI, 2.06 to 3.66) and breast cancer (HR-/HER + hazard ratio: 1.63; 95% CI, 1.12 to 2.36; triple-negative hazard ratio: 2.71; 95% CI, 1.98 to 3.71) than AYA women with HR+/HER2- breast cancer. AYA women who resided in lower socioeconomic status neighborhoods, had public health insurance, and were of Black, compared with White, race/ethnicity experienced worse survival. This race/ethnicity association was attenuated somewhat after adjusting for breast cancer subtypes (hazard ratio, 1.33; 95% CI, 0.98 to 1.82). AYA women had similar all-cause and breast cancer-specific short-term survival as older women

Recruitment of representative samples for low incidence cancer populations: Do registries deliver?

PubMed Central

2011-01-01

Background Recruiting large and representative samples of adolescent and young adult (AYA) cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. Methods Adolescents and young adults aged 14 to19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. Results The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56%) received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8%) refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32) completed the questionnaire. Conclusions Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered. PMID:21235819

Birth Outcomes Among Adolescent and Young Adult Cancer Survivors.

PubMed

Anderson, Chelsea; Engel, Stephanie M; Mersereau, Jennifer E; Black, Kristin Z; Wood, William A; Anders, Carey K; Nichols, Hazel B

2017-08-01

Cancer diagnosis and treatment may adversely affect reproductive outcomes among female cancer survivors. To compare the birth outcomes of adolescent and young adult cancer survivors (AYA [diagnosed at ages 15-39 years]) with those of women without a cancer diagnosis. The North Carolina Central Cancer Registry (CCR) was used to identify female AYA cancer survivors diagnosed from January 2000 to December 2013; CCR records were linked to statewide birth certificate files from January 2000 to December 2014 to identify postdiagnosis live births to AYA survivors (n = 2598). A comparison cohort of births to women without a recorded cancer diagnosis was randomly selected from birth certificate files (n = 12 990) with frequency matching on maternal age and year of delivery. Prevalence of preterm birth, low birth weight, small-for-gestational-age births, cesarean delivery, and low Apgar score. Overall, 2598 births to AYA cancer survivors (mean [SD] maternal age, 31 [5] years) were included. Births to AYA cancer survivors had a significantly increased prevalence of preterm birth (prevalence ratio [PR], 1.52; 95% CI, 1.34-1.71), low birth weight (PR, 1.59; 95% CI, 1.38-1.83), and cesarean delivery (PR, 1.08; 95% CI, 1.01-1.14) relative to the comparison cohort of 1299. The higher prevalence of these outcomes was most concentrated among births to women diagnosed during pregnancy. Other factors associated with preterm birth and low birth weight included treatment with chemotherapy and a diagnosis of breast cancer, non-Hodgkin lymphoma, or gynecologic cancers. The prevalence of small-for-gestational-age births and low Apgar score (<7) did not differ significantly between groups. Live births to AYA cancer survivors may have an increased risk of preterm birth and low birth weight, suggesting that additional surveillance of pregnancies in this population is warranted. Our findings may inform the reproductive counseling of female AYA cancer survivors.

DCIS-Specific MicroRNA in Cancer Stem Cell

DTIC Science & Technology

2011-09-01

Gairani, Misako Watabe, Fei Xing, Aya Kobayashi, Wen Liu, Koji Fukuda, , Sudha Pai and Kounosuke Watabe. Roles of lipogenesis and microRNA in cancer...Pai, Wen Liu, Aya Kobayashi, Fei Xing, Koji Fukuda , Shigeru Hirota, Tamotsu Sugai, Go Wakabayashi, Keisuke Koeda, Masahiro Kashiwaba, Kazuyuki...Aya Kobayashi, Wen Liu, Koji Fukuda, , Sudha Pai and Kounosuke Watabe Roles of lipogenesis and microRNA in cancer stem- like cells in ductal carcinoma

Occurrence of breast cancer subtypes in adolescent and young adult women

PubMed Central

2012-01-01

Introduction Breast cancers are increasingly recognized as heterogeneous based on expression of receptors for estrogen (ER), progesterone (PR), and human epidermal growth factor receptor 2 (HER2). Triple-negative tumors (ER-/PR-/HER2-) have been reported to be more common among younger women, but occurrence of the spectrum of breast cancer subtypes in adolescent and young adult (AYA) women aged between 15 and 39 years is otherwise poorly understood. Methods Data regarding all 5,605 AYA breast cancers diagnosed in California during the period 2005 to 2009, including ER and PR status (referred to jointly as hormone receptor (HR) status) and HER2 status, was obtained from the population-based California Cancer Registry. Incidence rates were calculated by subtype (triple-negative; HR+/HER2-; HR+/HER2+; HR-/HER2+), and logistic regression was used to evaluate differences in subtype characteristics by age group. Results AYAs had higher proportions of HR+/HER2+, triple-negative and HR-/HER2+ breast cancer subtypes and higher proportions of patients of non-White race/ethnicity than did older women. AYAs also were more likely to be diagnosed with stage III/IV disease and high-grade tumors than were older women. Rates of HR+/HER2- and triple-negative subtypes in AYAs varied substantially by race/ethnicity. Conclusions The distribution of breast cancer subtypes among AYAs varies from that observed in older women, and varies further by race/ethnicity. Observed subtype distributions may explain the poorer breast cancer survival previously observed among AYAs. PMID:22452927

Providing developmentally appropriate psychosocial care to adolescent and young adult cancer survivors.

PubMed

D'Agostino, Norma M; Penney, Annette; Zebrack, Brad

2011-05-15

To deliver developmentally appropriate psychosocial care, the key developmental tasks facing adolescents and young adults (AYA) need to be taken into consideration. These include establishing autonomy from parents; a personal set of values and identity; strong peer relationships, including intimate and sexual relationships; and obtaining adequate preparation to join the workforce. To minimize the amount of disruption caused by the cancer experience and to maximize the health-related quality of life of AYA patients, young individuals with cancer need opportunities to participate as much as possible in typical AYA activities and to master the developmental tasks of this life stage. Promoting a sense of normalcy is essential. To achieve this, the health care environment must be flexible and recognize the important role of peers. Informational and practical supports also are necessary for AYA to stay on track developmentally in the context of coping with cancer. Critical elements of effective AYA psychosocial services should include access to AYA-specific information and support resources, fertility and sexuality counseling, programs to maximize academic and vocational functioning, and financial support. © 2011 American Cancer Society

Sociodemographic Disparities in Differentiated Thyroid Cancer Survival Among Adolescents and Young Adults in California

PubMed Central

Grogan, Raymon H.; Parsons, Helen M.; Tao, Li; White, Michael G.; Onel, Kenan; Horn-Ross, Pamela L.

2015-01-01

Background: Few studies have focused on prognostic factors among adolescents and young adults (AYAs) 15 to 39 years of age when diagnosed with differentiated thyroid cancer (DTC). Our study expands upon prior work by including an evaluation of survival among AYA men and by neighborhood socioeconomic status, health insurance, and clinical factors to identify subgroups of young DTC patients at higher risk of mortality. Methods: Data for 16,827 AYA DTC patients diagnosed between 1988 and 2010 were obtained from the California Cancer Registry. Survival, through 2010, by sociodemographic and clinical factors was analyzed using Cox proportional hazards regression. Results: Of the 2.1% of AYAs who died, 16.7% died from thyroid cancer and 21.4% died from a subsequent cancer. In multivariate analyses, older AYAs 35 to 39 year of age (versus 15- to 29-year-olds), men (hazard ratio [HR] 2.77, 95% confidence interval [CI] 1.62–4.72), and AYAs of African American or Hispanic race/ethnicity (versus non-Hispanic whites) had worse thyroid cancer specific survival. In addition, residing in low socioeconomic status neighborhoods (HR 3.11 [CI 1.28–7.56]) and nonmetropolitan areas (HR 5.53 [CI 2.07–14.78]) was associated with worse thyroid cancer–specific survival among AYA men, but not AYA women. Conclusions: Despite the generally good prognosis among AYAs with DTC, we identified subgroups of AYA patients at risk for poor outcomes. Further study of the factors underlying these associations, including possible barriers to receiving high-quality treatment and follow-up care, as well as lifestyle factors, are critical to reducing these disparities. PMID:25778795

Information needs of adolescent and young adult cancer patients and their parent-carers.

PubMed

McCarthy, Maria C; McNeil, Robyn; Drew, Sarah; Orme, Lisa; Sawyer, Susan M

2018-05-01

This study aimed to explore health-related information needs of adolescent and young adults (AYAs) and their parent-carers and to examine demographic and clinical variables associated with unmet information needs, including patient activation. In a national cross-sectional study, 196 Australian AYAs diagnosed with cancer between 15 and 25 years and within 24 months of diagnosis and 204 parent-carers reported on total and unmet needs for cancer and health-related information. Fifty-one percent of AYAs were male, 81% had completed treatment and 86% were treated in adult hospitals. AYAs and parents reported high levels of total need for information. The mean number of unmet needs was 5.63 and 6.82 for AYAs and parents, respectively. AYAs reported the highest unmet needs in relation to their cancer (e.g. late effects and cancer recurrence, and having children in the future). The highest unmet parent information needs were related to medical information about their child as well as information on financial issues for their children and themselves. Unmet information need was associated with psychological distress (posttraumatic stress symptoms) for AYAs and parents. Patient activation was negatively associated with unmet information needs for AYAs. Demographic and treatment variables were not significantly associated with information needs. These findings indicate the importance of information needs for AYAs and their carers. The association between patient activation and information needs suggests that promoting young people's engagement with healthcare is a key opportunity within AYA care. Parent information needs and associated emotional distress additionally highlight the importance of family-centered care.

What are the needs of adolescents and young adults after a cancer treatment? A Delphi study.

PubMed

Galán, S; de la Vega, R; Tomé Pires, C; Racine, M; Solé, E; Jensen, M P; Miró, J

2017-03-01

Advances in the early detection of cancer and the development of more effective treatments have resulted in a larger number of adolescents and young adults (AYAs), becoming cancer survivors. However, knowledge regarding their needs and if those needs are adequately addressed remains limited. The aims of this study were to: (1) better understand the needs of AYAs after cancer treatment; (2) analyse the importance of those needs; (3) determine which needs are not adequately addressed; and (4) test the hypothesis that AYA cancer survivors have different needs than adult survivors. Twenty-nine health oncology professionals, 17 AYA survivors and 12 relatives of AYA survivors participated in the Delphi study. The needs identified could be classified into six categories, and all were rated as highly important by all participants. The category perceived as least adequately addressed across the three groups was 'Counselling and psychological support.' The findings provide important new information regarding the needs of AYA cancer survivors that can inform the development of interventions to improve the quality of life of these individuals. © 2016 John Wiley & Sons Ltd.

Narrative Review of the Educational, Vocational, and Financial Needs of Adolescents and Young Adults with Cancer: Recommendations for Support and Research.

PubMed

Fardell, Joanna E; Wakefield, Claire E; Patterson, Pandora; Lum, Alistair; Cohn, Richard J; Pini, Simon A; Sansom-Daly, Ursula M

2018-04-01

Adolescents and young adults (AYAs) with cancer have unique needs around education and vocation during and after treatment. This narrative review series aims at documenting the unique needs of AYAs from the current literature and at providing recommendations to inform an update of the Australian National Service Delivery Framework for AYAs with Cancer. AYAs with cancer may experience impairments to cognitive, physical, and psychological functioning and health, which can adversely affect their academic grades, peer relationships, and likelihood of entering the workforce. Treatment expenses and time off work can stifle AYAs' financial independence from their parents. The combined effect of disrupted education, vocation, and financial dependence can reduce AYAs' sense of identity. Although support is available in some countries, support efficacy is yet to be clearly established. Continued research is required to deliver successful education and work reintegration programs that build the confidence of AYAs with cancer to achieve their best. Educational and vocational support, as well as financial advice, may improve AYAs' financial security and quality of life during survivorship.

Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation

PubMed Central

Fair, Kayla; Hong, Yan Alicia; Kellstedt, Debra; Ory, Marcia G

2017-01-01

Background This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. Objective The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of “How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?” Methods The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. Results The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1

Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation.

PubMed

Vollmer Dahlke, Deborah; Fair, Kayla; Hong, Yan Alicia; Kellstedt, Debra; Ory, Marcia G

2017-02-10

This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of "How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?" The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1) were .893 for first cycle coding and .784

Quality of life in adolescent and young adult cancer patients: a systematic review of the literature

PubMed Central

Quinn, Gwendolyn P; Gonçalves, Vânia; Sehovic, Ivana; Bowman, Meghan L; Reed, Damon R

2015-01-01

Introduction Adolescent and young adult (AYA) cancer survivors experience many unique challenges and quality of life (QoL) effects that persist beyond cancer diagnosis and treatment. Due to continuous improvements in technology and cancer treatments resulting in improved survival rates, the identification of late effects, survivorship issues, and QoL is moving to the forefront of cancer research. The goal of this systematic review was to identify key psychosocial factors impacting QoL in AYA oncology populations. Methods A systematic review of the literature was conducted using combinations of these phrases or keywords: “adolescent and young adult or AYA” AND “health outcomes OR quality of life OR psychology” AND “neoplasm OR cancer OR oncology”. A total of 35 articles were included in this review. Studies were classified into two categories: AYA perceptions and stakeholder perceptions. Results AYA cancer survivors were more likely to have “worse” or impaired QoL compared with the general population, regardless of other demographic factors. AYAs described both positive and negatives experiences with their medical care, the educational information received, and the supportive care services. Although health care professionals were likely to underestimate or misjudge the health preferences and support needs of AYAs, these perceptions varied across disciplines and levels of experience. Conclusion The literature is lacking in sufficient evidence-based interventions to improve QoL in AYA cancer populations. Further, the tools to adequately measure QoL in this population are also unsatisfactory. The literature, however, consistently shows agreement regarding the unique needs of this population, indicating a trend toward health care standardization within age ranges or life stages. We suggest the need for AYA-specific programs in health care institutions that comprise a multidisciplinary team that addresses all the unique medical and QoL needs of AYAs. PMID

A Population-Based Observational Study of First-Course Treatment and Survival for Adolescent and Young Adult Females with Breast Cancer

PubMed Central

DeRouen, Mindy C.; Gomez, Scarlett L.; Press, David J.; Tao, Li; Kurian, Allison W.

2013-01-01

Purpose Young age at breast cancer diagnosis is associated with poor survival. However, little is known about factors associated with first-course treatment receipt or survival among adolescent and young adult (AYA) females aged 15–39 years. Methods Data regarding 19,906 eligible AYA breast cancers diagnosed in California during 1992–2009 were obtained from the population-based California Cancer Registry. Multivariable logistic regression was used to evaluate clinical and sociodemographic differences in treatment receipt. Multivariable Cox proportional hazards regression was used to examine differences in survival by initial treatment, and by patient and tumor characteristics. Results Black and Hispanic AYAs diagnosed with in situ or stages I–III breast cancer were more likely than White AYAs to receive breast-conserving surgery (BCS) without radiation; Asian and Hispanic AYAs were more likely than Whites to receive mastectomy. Women in lower socioeconomic status (SES) neighborhoods were more likely to omit radiation after BCS, more likely to receive mastectomy, and less likely to receive chemotherapy, compared to those in higher SES neighborhoods. Among patients with invasive disease, survival improved an average of 5% per year during 1992–2009. AYAs who received BCS with radiation experienced better survival than other surgery/radiation options. Black AYAs had poorer survival than Whites. AYAs who resided in higher SES neighborhoods had better survival. Conclusions Treatment receipt among AYAs with breast cancer varied by race/ethnicity and neighborhood SES. Poor survival for Black AYAs and AYAs living in low SES neighborhoods in models adjusted for treatment receipt suggests that factors other than treatment may also be important to disease outcome. PMID:24066271

Adolescent and Young Adult Cancer Survivors' Perspectives on Their Internet Use for Seeking Information on Healthy Eating and Exercise.

PubMed

Mooney, Ryan; Samhouri, Mahasen; Holton, Avery; Devine, Katie A; Kirchhoff, Anne C; Wright, Jennifer; Wu, Yelena P

2017-06-01

To explore adolescent and young adult (AYA) cancer survivors' internet use in seeking healthy lifestyle behavior (HLB) information on diet and exercise. Twenty-five AYA cancer survivors participated in focus groups or interviews. Data were analyzed using qualitative content analysis. Most survivors (92%) sought HLB information from internet sources. Key issues included the following: (1) too much information available, (2) information not meeting survivors' unique needs, and (3) concerns about trustworthiness of information. Although AYA cancer survivors use the internet to seek HLB information, internet resources could be modified to better meet the needs of AYA cancer survivors.

Palliative care for adolescents and young adults with cancer

PubMed Central

Rosenberg, Abby R; Wolfe, Joanne

2017-01-01

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities. PMID:21523753

Applying Social Network Analysis to Identify the Social Support Needs of Adolescent and Young Adult Cancer Patients and Survivors.

PubMed

Koltai, Kolina; Walsh, Casey; Jones, Barbara; Berkelaar, Brenda L

2018-04-01

This article examines how theoretical and clinical applications of social network analysis (SNA) can inform opportunities for innovation and advancement of social support programming for adolescent and young adult (AYA) cancer patients and survivors. SNA can help address potential barriers and challenges to initiating and sustaining AYA peer support by helping to identify the diverse psychosocial needs among individuals in the AYA age range; find strategic ways to support and connect AYAs at different phases of the cancer trajectory with resources and services; and increase awareness of psychosocial resources and referrals from healthcare providers. Network perspectives on homophily, proximity, and evolution provide a foundational basis to explore the utility of SNA in AYA clinical care and research initiatives. The uniqueness of the AYA oncology community can also provide insight into extending and developing current SNA theories. Using SNA in AYA psychosocial cancer research has the potential to create new ideas and pathways for supporting AYAs across the continuum of care, while also extending theories of SNA. SNA may also prove to be a useful tool for examining social support resources for AYAs with various chronic health conditions and other like groups.

Disparities in Adolescent and Young Adult Survival After Testicular Cancer Vary by Histologic Subtype: A Population-Based Study in California 1988-2010.

PubMed

DeRouen, Mindy C; Mujahid, Mahasin; Srinivas, Sandy; Keegan, Theresa H M

2016-03-01

Testicular cancer is the most common cancer among adolescent and young adult (AYA) men 15-39 years of age. This study aims to determine whether race/ethnicity and/or neighborhood socioeconomic status (SES) contribute independently to survival of AYAs with testicular cancer. Data on 14,249 eligible AYAs with testicular cancer diagnosed in California between 1988 and 2010 were obtained from the population-based California Cancer Registry. Multivariable Cox proportional hazards regression was used to examine overall and testicular cancer-specific survival and survival for the seminoma and nonseminoma histologic subtypes according to race/ethnicity, census-tract level neighborhood SES, and other patient and clinical characteristics. Compared with White AYAs, Hispanic AYAs had worse overall and testicular cancer-specific survival (hazard ratio [HR], 1.21; 95% confidence interval [CI], 1.07-1.37) and Black AYAs had worse overall survival (HR, 1.41; 95% CI, 1.01-1.97), independent of neighborhood SES and other demographic and clinical factors. Racial/ethnic disparities in survival were more pronounced for nonseminoma than for seminoma. AYAs residing in middle and low SES neighborhoods experienced worse survival across both histologic subtypes independent of race/ethnicity and other factors, while improvements in survival over time were more pronounced for seminoma. Longer time to treatment was also associated with worse survival, particularly for AYAs with nonseminoma. Among AYAs, race/ethnicity, and neighborhood SES are independently associated with survival after testicular cancer. Variation in disparities by histologic type according to demographic factors, year of diagnosis, and time to treatment may reflect differences in prognosis and extent of treatment for the two histologies.

Disparities in Adolescent and Young Adult Survival After Testicular Cancer Vary by Histologic Subtype: A Population-Based Study in California 1988–2010

PubMed Central

Mujahid, Mahasin; Srinivas, Sandy; Keegan, Theresa H.M.

2016-01-01

Purpose: Testicular cancer is the most common cancer among adolescent and young adult (AYA) men 15–39 years of age. This study aims to determine whether race/ethnicity and/or neighborhood socioeconomic status (SES) contribute independently to survival of AYAs with testicular cancer. Methods: Data on 14,249 eligible AYAs with testicular cancer diagnosed in California between 1988 and 2010 were obtained from the population-based California Cancer Registry. Multivariable Cox proportional hazards regression was used to examine overall and testicular cancer-specific survival and survival for the seminoma and nonseminoma histologic subtypes according to race/ethnicity, census-tract level neighborhood SES, and other patient and clinical characteristics. Results: Compared with White AYAs, Hispanic AYAs had worse overall and testicular cancer-specific survival (hazard ratio [HR], 1.21; 95% confidence interval [CI], 1.07–1.37) and Black AYAs had worse overall survival (HR, 1.41; 95% CI, 1.01–1.97), independent of neighborhood SES and other demographic and clinical factors. Racial/ethnic disparities in survival were more pronounced for nonseminoma than for seminoma. AYAs residing in middle and low SES neighborhoods experienced worse survival across both histologic subtypes independent of race/ethnicity and other factors, while improvements in survival over time were more pronounced for seminoma. Longer time to treatment was also associated with worse survival, particularly for AYAs with nonseminoma. Conclusion: Among AYAs, race/ethnicity, and neighborhood SES are independently associated with survival after testicular cancer. Variation in disparities by histologic type according to demographic factors, year of diagnosis, and time to treatment may reflect differences in prognosis and extent of treatment for the two histologies. PMID:26812451

Adolescent and Young Adult Cancer Survivors' Perspectives on Their Internet Use for Seeking Information on Healthy Eating and Exercise

PubMed Central

Mooney, Ryan; Samhouri, Mahasen; Holton, Avery; Devine, Katie A.; Kirchhoff, Anne C.; Wright, Jennifer

2017-01-01

Purpose: To explore adolescent and young adult (AYA) cancer survivors' internet use in seeking healthy lifestyle behavior (HLB) information on diet and exercise. Methods: Twenty-five AYA cancer survivors participated in focus groups or interviews. Data were analyzed using qualitative content analysis. Results: Most survivors (92%) sought HLB information from internet sources. Key issues included the following: (1) too much information available, (2) information not meeting survivors' unique needs, and (3) concerns about trustworthiness of information. Conclusion: Although AYA cancer survivors use the internet to seek HLB information, internet resources could be modified to better meet the needs of AYA cancer survivors. PMID:27845844

Clinical research participation among adolescent and young adults at an NCI-designated Comprehensive Cancer Center and affiliated pediatric hospital.

PubMed

Sanford, Stacy D; Beaumont, Jennifer L; Snyder, Mallory A; Reichek, Jennifer; Salsman, John M

2017-05-01

Minimal clinical trial participation among adolescents and young adults (AYAs) with cancer limits scientific progress and ultimately their clinical care and outcomes. These analyses examine the current state of AYA clinical research participation at a Midwestern comprehensive cancer center and affiliated pediatric hospital to advise program development and increase availability of trials and AYA participation. Enrollment is examined across all diagnoses, the entire AYA age spectrum (15-39), and both cancer therapeutic and supportive care protocols. his study was a retrospective review of electronic medical records via existing databases and registries for all AYAs. Data were collected for AYAs seen by an oncologist at the adult outpatient cancer center or at the pediatric hospital between the years 2010 and 2014. Descriptive statistics and logistic regression analyses were conducted to characterize this sample. In the pediatric setting, 42.3% of AYAs were enrolled in a study compared to 11.2% in the adult setting. Regression analyses in the pediatric setting revealed that AYAs with private insurance or Caucasian race were more likely to participate. Within the adult setting, ethnicity, race, insurance, and diagnosis were associated with study participation; 54.8% of study enrollments were for cancer therapeutic and 43.4% for supportive care studies. These results are comparable to previously published data and support the need for new local and national AYA initiatives to increase the availability of and enrollment in therapeutic clinical trials. The same is true for supportive care studies which play a crucial role in improving quality of life.

Educational Needs of Health Professionals Caring for Adolescents and Young Adults with Cancer.

PubMed

Bradford, Natalie K; Greenslade, Rebecca; Edwards, Rachel M; Orford, Rebekah; Roach, Jane; Henney, Roslyn

2018-01-16

Young people with cancer have distinct clinical and psychosocial needs during and after cancer treatment. However, as adolescent and young adult (AYA) cancer is rare, and only recently recognized as specialty, health professionals may not have the skills, competence, and confidence to meet the needs of the young patient with cancer. The aim of this study was to identify the learning needs of health professionals providing cancer care to adolescents and young adults before and following the introduction of a state-wide AYA cancer education program. A survey of educational needs of health professionals was undertaken in 2013 at the commencement of the Queensland Youth Cancer Service. The survey was used to develop the education program of the service. The education program was delivered across the state in a variety of formats, covering a range of topics throughout 2013-2016. The second survey was completed in 2017. Results were compared to identify if educational needs or the self-rated confidence of health professionals in regard to AYA cancer care had changed over time. One hundred twenty-two participants completed the first survey and 73 completed the second. The most prominent educational needs in 2013 were palliative care and biomedical topics such as understanding AYA growth and development as well as specific AYA cancers and treatment. The second survey identified that palliative care education remained important; however, there was a shift toward health professionals request for more psychosocial and practical education on topics including fertility, sexuality, and managing late effects. To provide high-quality healthcare to AYAs with cancer, health professionals require ongoing opportunities for education and training.

Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

PubMed Central

Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M

2015-01-01

Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears. PMID:25750863

Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer.

PubMed

DeRouen, Mindy C; Smith, Ashley Wilder; Tao, Li; Bellizzi, Keith M; Lynch, Charles F; Parsons, Helen M; Kent, Erin E; Keegan, Theresa H M

2015-09-01

Adolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL). We examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007-2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12). Two-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales except general health perceptions (all p <0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction >0.1). Adolescent and young adult patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population. Copyright © 2015 John Wiley & Sons, Ltd.

Age-Specific Patient Navigation Preferences Among Adolescents and Young Adults with Cancer.

PubMed

Pannier, Samantha T; Warner, Echo L; Fowler, Brynn; Fair, Douglas; Salmon, Sara K; Kirchhoff, Anne C

2017-11-23

Patient navigation is increasingly being directed at adolescent and young adult (AYA) patients. This study provides a novel description of differences in AYA cancer patients' preferences for navigation services by developmental age at diagnosis. Eligible patients were diagnosed with cancer between ages 15 and 39 and had completed at least 1 month of treatment. Between October 2015 and January 2016, patients completed semi-structured interviews about navigation preferences. Summary statistics of demographic and cancer characteristics were generated. Differences in patient navigation preferences were examined through qualitative analyses by developmental age at diagnosis. AYAs were interviewed (adolescents 15-18 years N = 8; emerging adults 19-25 years N = 8; young adults 26-39 years N = 23). On average, participants were 4.5 years from diagnosis. All age groups were interested in face-to-face connection with a navigator and using multiple communication platforms (phone, text, email) to follow-up. Three of the most frequently cited needs were insurance, finances, and information. AYAs differed in support, healthcare, and resource preferences by developmental age; only adolescents preferred educational support. While all groups preferred financial and family support, the specific type of assistance (medical versus living expenses, partner/spouse, child, or parental assistance) varied by age group. AYAs with cancer have different preferences for patient navigation by developmental age at diagnosis. AYAs are not a one-size-fits-all population, and navigation programs can better assist AYAs when services are targeted to appropriate developmental ages. Future research should examine fertility and navigation preferences by time since diagnosis. While some navigation needs to span the AYA age range, other needs are specific to developmental age.

Cancer-related information needs and cancer’s impact on control over life influence health-related quality of life among adolescents and young adults with cancer

PubMed Central

DeRouen, Mindy C.; Smith, Ashley Wilder; Tao, Li; Bellizzi, Keith M.; Lynch, Charles F.; Parsons, Helen M.; Kent, Erin E.; Keegan, Theresa H. M.

2015-01-01

Objective Adolescents and young adults (AYAs) diagnosed with cancer between 15 and 39 years of age often report need for greater amounts of cancer-related information and perceive that cancer has had a negative impact on control over their life. We examined whether unmet information need and perceived control over life are associated with health-related quality of life (HRQOL). Methods We examined data from 484 AYA cancer survivors recruited from population-based cancer registries in 2007–2008. Participants completed surveys a median of 11 months after diagnosis. Multivariable linear regression analyses estimated associations of unmet cancer-related information needs and impact of cancer on control over life on HRQOL (SF-12). Results Two-thirds of AYAs reported an intermediate or high level of unmet information need, and half (47%) reported a negative impact of cancer on control. Greater unmet information need was associated with lower overall mental and physical HRQOL and lower levels of all HRQOL subscales except vitality. A negative impact on control over life was associated with lower overall mental HRQOL as well as lower HRQOL across all subscales (all p <0.05). In multivariable analyses, perceived control and unmet information need were independently associated with HRQOL (p-values for interaction >0.1). Conclusions AYA patients with cancer have high levels of unmet cancer-related information needs and perceived negative impact of cancer on control over life; both were independently associated with lower HRQOL. Addressing unmet information needs among AYA cancer survivors and finding ways to increase their sense of control may help improve HRQOL in this understudied population. PMID:25611943

Assessing the psychosocial needs and program preferences of adolescents and young adults with cancer.

PubMed

Barakat, Lamia P; Galtieri, Liana R; Szalda, Dava; Schwartz, Lisa A

2016-02-01

Adolescents and young adults (AYA) are a developmentally distinct cancer group, vulnerable to psychosocial late effects and with a range of unmet psychosocial needs. We sought to better understand psychosocial care needs and program preferences to inform development of more easily accessible and effective AYA psychosocial programs. AYA on and off treatment for cancer (n = 111, ages 12-25 years) were approached during an outpatient clinic visit and completed a survey as part of a quality improvement initiative. The survey comprised an open-ended question on challenges related to cancer and treatment and closed-ended questions on access to and preference for various services and programs. Qualitative analyses were used to summarize themes for most significant challenges, and descriptive statistics were used for closed-ended questions. Most common themes for challenges included treatments and associated physical changes, barriers to pursuit of academic/vocational goals, and social isolation. For preferred program focus, AYA ranked highest increasing strength and endurance/reintegration into sports and dealing with physical changes resulting from treatment. AYA's preferred modalities for program delivery were one-on-one/in person and message boards/Facebook. Most of the sample indicated that lack of awareness prevented their accessing available programs. New information was identified that can be used to address access barriers and to offer AYA psychosocial programs in formats that might improve interest and accessibility. Ongoing evaluation of AYA psychosocial programs is recommended to determine acceptability, feasibility, and effectiveness to meet the evolving needs of AYA patients with cancer.

Social Well-Being Among Adolescents and Young Adults With Cancer: A Systematic Review

PubMed Central

Warner, Echo L.; Kent, Erin E.; Trevino, Kelly M.; Parsons, Helen M.; Zebrack, Brad J.; Kirchhoff, Anne C.

2016-01-01

BACKGROUND A cancer diagnosis during adolescence or young adulthood may negatively influence social well-being. The existing literature concerning the social well-being of adolescents and young adults (AYAs) with cancer was reviewed to identify gaps in current research and highlight priority areas for future research. METHODS A systematic review of the scientific literature published in English from 2000 through 2014 was performed. Eligible studies included patients and survivors diagnosed between the ages of 15 to 39 years that reported on social well-being domains in the City of Hope Cancer Survivor Quality of Life Model. Each article was reviewed for relevance using a standardized template. A total of 253 potential articles were identified. After exclusions, a final sample of 26 articles identified domains of social well-being that are believed to be understudied among AYAs with cancer: 1) educational attainment, employment, and financial burden; 2) social relationships; and 3) supportive care. Articles were read in their entirety, single coded, and summarized according to domain. RESULTS AYAs with cancer report difficulties related to employment, educational attainment, and financial stability. They also report problems with the maintenance and development of peer and family relationships, intimate and marital relationships, and peer support. Supportive services are desired among AYAs. Few studies have reported results in reference to comparison samples or by cancer subtypes. CONCLUSIONS Future research studies on AYAs with cancer should prioritize the inclusion of underserved AYA populations, more heterogeneous cancer samples, and comparison groups to inform the development of supportive services. Priority areas for potential intervention include education and employment reintegration, and social support networks. PMID:26848713

Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers.

PubMed

Sawyer, Susan M; McNeil, Robyn; McCarthy, Maria; Orme, Lisa; Thompson, Kate; Drew, Sarah; Dunt, David

2017-07-01

Cancer in adolescents in and young adults (AYA) has the potential to disrupt health, well-being and developmental trajectories. This study aimed to describe the healthcare support service needs of AYAs with cancer and parent carers and to explore the association of unmet need and emotional distress. As part of a national Australian survey of 15-25 year olds with cancer and a nominated parent carer, 196 AYAs reported total and unmet need for 10 clinical services and 204 parents reported on their child's and their own healthcare service needs. Proportions of total and unmet need for specific clinical services are reported. The association of unmet service needs and distress (measured using the Posttraumatic Stress Disorder Checklist) was also examined. AYAs and parent carers expressed high total need for clinical services during treatment. Leading AYA unmet needs were for an exercise therapist (37%), genetic counsellor (30%), dietitian (26%), peer support group (26%) and educational and vocational advisor (24%). After treatment, AYAs and parents had fewer total needs. However, 60% of AYA and 38% of parents had two or more unmet needs, similar to during treatment. Female gender and receiving treatment in an adult setting were significantly associated with unmet need for clinical services. After treatment, higher distress levels in AYAs and parents were associated with two or more unmet service needs. AYAs and parents had high levels of total and unmet service need, which were associated with greater emotional distress. These results highlight opportunities to re-orientate services to better meet AYA and parent needs.

Perceptions and attitudes toward clinical trials in adolescent and young adults with cancer: a systematic review.

PubMed

Forcina, Victoria; Vakeesan, Branavan; Paulo, Chelsea; Mitchell, Laura; Bell, Jennifer Ah; Tam, Seline; Wang, Kate; Gupta, Abha A; Lewin, Jeremy

2018-01-01

Although cancer clinical trials (CT) offer opportunities for novel treatments that may lead to improved outcomes, adolescents and young adults (AYA) are less likely to participate in these trials as compared to younger children and older adults. We aimed to identify the perceptions and attitudes toward CT in AYA that influence trial participation. A systematic review of cancer literature was conducted that assessed perceptions and attitudes toward CT enrollment limited to AYA patients (defined as age 15-39). We estimated the frequency of identified themes by pooling identified studies. In total, six original research articles were identified that specifically addressed perceptions or attitudes that influenced CT participation in AYA patients. Three studies were conducted at pediatric centers - one at an AYA unit, one at an adult cancer hospital, and one was registry based. Major themes identified for CT acceptability included: hope for positive clinical affect, altruism, and having autonomy. Potential deterrents included: prolonged hospitalization, worry of side effects, and discomfort with experimentation. Limited information is available with regard to the perceptions and attitudes toward CT acceptability among AYA patients, especially those treated at adult cancer centers, which prevents generalization of data and themes. Future research assessing strategies for understanding and supporting CT decision-making processes among AYA represents a key focus for future funding to improve CT enrollment.

Medication adherence decision-making among adolescents and young adults with cancer.

PubMed

McGrady, Meghan E; Brown, Gabriella A; Pai, Ahna L H

2016-02-01

Nearly half of all adolescents and young adults (AYAs) with cancer struggle to adhere to oral chemotherapy or antibiotic prophylactic medication included in treatment protocols. The mechanisms that drive non-adherence remain unknown, leaving health care providers with few strategies to improve adherence among their patients. The purpose of this study was to use qualitative methods to investigate the mechanisms that drive the daily adherence decision-making process among AYAs with cancer. Twelve AYAs (ages 15-31) with cancer who had a current medication regimen that included oral chemotherapy or antibiotic prophylactic medication participated in this study. Adolescents and young adults completed a semi-structured interview and a card sorting task to elucidate the themes that impact adherence decision-making. Interviews were transcribed verbatim and coded twice by two independent raters to identify key themes and develop an overarching theoretical framework. Adolescents and young adults with cancer described adherence decision-making as a complex, multi-dimensional process influenced by personal goals and values, knowledge, skills, and environmental and social factors. Themes were generally consistent across medication regimens but differed with age, with older AYAs discussing long-term impacts and receiving physical support from their caregivers more than younger AYAs. The mechanisms that drive daily adherence decision-making among AYAs with cancer are consistent with those described in empirically-supported models of adherence among adults with other chronic medical conditions. These mechanisms offer several modifiable targets for health care providers striving to improve adherence among this vulnerable population. Copyright © 2015 Elsevier Ltd. All rights reserved.

Medication Adherence Decision-Making Among Adolescents and Young Adults with Cancer

PubMed Central

McGrady, Meghan E.; Brown, Gabriella A.; Pai, Ahna L. H.

2015-01-01

Purpose Nearly half of all adolescents and young adults (AYAs) with cancer struggle to adhere to oral chemotherapy or antibiotic prophylactic medication included in treatment protocols. The mechanisms that drive non-adherence remain unknown, leaving health care providers with few strategies to improve adherence among their patients. The purpose of this study was to use qualitative methods to investigate the mechanisms that drive the daily adherence decision-making process among AYAs with cancer. Methods Twelve AYAs (ages 15–31) with cancer who had a current medication regimen that included oral chemotherapy or antibiotic prophylactic medication participated in this study. Adolescents and young adults completed a semi-structured interview and a card sorting task to elucidate the themes that impact adherence decision-making. Interviews were transcribed verbatim and coded twice by two independent raters to identify key themes and develop an overarching theoretical framework. Results Adolescents and young adults with cancer described adherence decision-making as a complex, multi-dimensional process influenced by personal goals and values, knowledge, skills, and environmental and social factors. Themes were generally consistent across medication regimens but differed with age, with older AYAs discussing long-term impacts and receiving physical support from their caregivers more than younger AYAs. Conclusions The mechanisms that drive daily adherence decision-making among AYAs with cancer are consistent with those described in empirically-supported models of adherence among adults with other chronic medical conditions. These mechanisms offer several modifiable targets for health care providers striving to improve adherence among this vulnerable population. PMID:26372619

Prevalence and impact of severe fatigue in adolescent and young adult cancer patients in comparison with population-based controls.

PubMed

Poort, Hanneke; Kaal, Suzanne E J; Knoop, Hans; Jansen, Rosemarie; Prins, Judith B; Manten-Horst, Eveliene; Servaes, Petra; Husson, Olga; van der Graaf, Winette T A

2017-09-01

The current study determined the prevalence of severe fatigue in adolescent and young adult (AYA) cancer patients (aged 18-35 years at diagnosis) consulting a multidisciplinary AYA team in comparison with gender- and age-matched population-based controls. In addition, impact of severe fatigue on quality of life and correlates of fatigue severity were examined. AYAs with cancer (n = 83) completed questionnaires including the Checklist Individual Strength (CIS-fatigue), Quality of Life (QoL)-Cancer Survivor, Hospital Anxiety and Depression Scale (reflecting psychological distress), and the Cancer Worry Scale (reflecting fear of cancer recurrence or progression). The vast majority of participants had been treated with chemotherapy (87%) and had no active treatment at the time of participation (73.5%). Prevalence of severe fatigue (CIS-fatigue score ≥35) in AYAs with cancer (48%, n = 40/83) was significantly higher in comparison with matched population-based controls (20%, n = 49/249; p < .001). Severely fatigued AYAs with cancer reported lower QoL compared to non-severely fatigued AYAs with cancer (p < .05). Female gender, being unemployed, higher disease stage (III-IV) at diagnosis, receiving active treatment at the time of study participation, being treated with palliative intent, having had radiotherapy, higher fear of recurrence or progression, and higher psychological distress were significantly correlated with fatigue severity (p < .05). Severe fatigue based on a validated cut-off score was highly prevalent in this group of AYAs with cancer. QoL is significantly affected by severe fatigue, stressing the importance of detection and management of this symptom in those patients affected by a life-changing diagnosis of cancer in late adolescence or young adulthood.

Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer.

PubMed

Carey, Mariko L; Clinton-McHarg, Tara; Sanson-Fisher, Robert William; Shakeshaft, Anthony

2012-05-01

In order to improve the service delivery for the parents and carers of adolescents and young adults (AYAs) with cancer, it is important to develop measures which assess the specific issues and concerns faced by this group. The aims of this study were to describe the development and acceptability of a measure of unmet needs of parents and carers of AYA cancer survivors and to assess the prevalence of unmet needs among the respondents. A literature search and focus groups with consumers and health professionals were used to inform item development. AYA cancer survivors and their parents and carers were identified from seven hospitals in Australia. Parents and carers who consented for their contact details to be released to the research team were sent a paper-and-pencil questionnaire. One mailed reminder and one phone call reminder were made to non-responders. The unmet needs survey consisted of eight domains and 150 items: (1) cancer treatment staff, (2) cancer treatment centre, (3) study, (4) work, (5) information, (6) feelings, (7) relationships and (8) daily life. Eighty-three parents and carers completed the survey. The mean number of high or very high unmet needs reported was 24, with information needs among the most prevalent high/very high unmet needs. The questionnaire developed has demonstrable face and content validity and acceptability. Unmet needs are prevalent among parents and carers of AYA cancer survivors, suggesting the need for further psychometric testing of the measure.

Psychometric Evaluation of an Adolescent and Young Adult Module of the Impact of Cancer Instrument.

PubMed

Husson, Olga; Zebrack, Bradley J

2017-03-01

To develop and evaluate a new instrument that measures unique aspects of long-term survivorship for people diagnosed with cancer as Adolescent and Young Adult (AYA), not measured by existing tools. A new candidate instrument-the Impact of Cancer for Adolescent and Young Adult (IOC-AYA) cancer survivors-was developed and administered to AYA cancer survivors aged 18-35 years who were 15-29 years old when diagnosed with cancer. Psychometric properties of newly derived scales were assessed. Factor analyses of items derived seven new and specific subscales: Social Life; Uncertainties, Worries and Wonders; Cognitive Function; Sense of Purpose/Life Goals; Identity; Health Behaviors; and Health Literacy. Two separate and conditional subscales were formed: Relationship Concerns (partnered/unpartnered) and Having Children (at least one child/no children). Internal consistency measurements for these subscales ranged from 0.70 to 0.90. Expected associations within and among IOC-AYA subscales and standardized measures of quality of life were observed. Psychometric analyses indicated that this initial version of the IOC-AYA measures distinct and relevant constructs for survivors diagnosed with cancer in adolescence and young adulthood. Future work is needed to confirm the responsiveness to change and further validate the instrument in multiple and representative samples. Use of the IOC-AYA instrument in research and clinical practice will inform the development of psychosocial and supportive care interventions that not only minimize or prevent long-term deleterious effects of cancer but also promote positive adaptation, resilience, and the achievement of age-specific developmental tasks.

Small Numbers, Big Challenges: Adolescent and Young Adult Cancer Incidence and Survival in New Zealand.

PubMed

Ballantine, Kirsten R; Watson, Heidi; Macfarlane, Scott; Winstanley, Mark; Corbett, Robin P; Spearing, Ruth; Stevanovic, Vladimir; Yi, Ma; Sullivan, Michael J

2017-06-01

This study was undertaken to determine cancer survival and describe the unique spectrum of cancers diagnosed among New Zealand's adolescents and young adult (AYA) population. Registrations for 1606 15-24 year olds diagnosed with a new primary malignant tumor between 2000 and 2009 were obtained from the New Zealand Cancer Registry and classified according to AYA diagnostic group and subgroup, age, sex, and prioritized ethnicity. Age-standardized incidence rates (IRs) per million person years and 5-year relative survival ratios were calculated. Cancer incidence was 228.6 per million for adolescents aged 15-19 years and 325.7 per million for young adults aged 20-24 years. Overall IRs were consistent across all ethnic groups but there were unique ethnic differences by tumor group including a higher incidence of bone tumors, carcinoma of the gastrointestinal tract, and gonadal germ cell tumors among Maori, a higher incidence of leukemia among Pacific peoples, and a higher incidence of melanoma among non-Maori/non-Pacific peoples. Five-year relative survival for adolescents (75.1%) and AYA overall (80.6%) appeared poorer than had been achieved in other high-income countries. Maori (69.5%) and Pacific (71.3%) AYA had lower 5-year survival compared to non-Maori/non-Pacific peoples (84.2%). The survival disparities observed require further investigation to identify and address the causes of these inferior outcomes. The newly established AYA Cancer Network Aotearoa has been tasked with improving cancer survival and care and ensuring equality of access for New Zealand AYAs with cancer.

Emerging issues among adolescent and young adult cancer survivors.

PubMed

Patterson, Pandora; McDonald, Fiona E J; Zebrack, Brad; Medlow, Sharon

2015-02-01

To review the characteristics of cancer in the adolescence and young adult age group; the medical, psychosocial and behavioral late effects; survivorship care planning and transition; current research priorities; and practice implications. Published articles, research studies and position statements. Survivors of cancers that occurred during adolescence and young adulthood (AYA) are confronted with the dual demands of managing their transition to independent adulthood, concurrently with their transition from cancer patient to cancer survivors, with an associated reduction in support from medical services. AYA survivors also face complex medical, psychosocial and behavioral late effects, including fertility and mental health issues. An understanding of the impact of cancer diagnoses among this age group, including survivors' abilities to reintegrate into 'normal' life and potential long term consequences, is necessary to provide the best support. This care and support can be enhanced through multidisciplinary teams who work together to address the medical and psychosocial needs of AYAs diagnosed with cancer. Copyright © 2015 Elsevier Inc. All rights reserved.

Health Literacy in Adolescents and Young Adults: Perspectives from Australian Cancer Survivors.

PubMed

Lin, Merry; Sansom-Daly, Ursula M; Wakefield, Claire E; McGill, Brittany C; Cohn, Richard J

2017-03-01

Health literacy is a critical determinant of health and an emerging public health concern. Little is known about the health literacy of adolescents and young adults (AYAs) or about the ability of young patients to communicate health needs and critically evaluate information. We used qualitative methods to investigate the three aspects of health literacy (functional, communicative, and critical) in Australian AYA cancer survivors. Forty Australian AYA cancer survivors, aged 15-29 either at diagnosis or recruitment, participated in semistructured interviews. Participants were asked about sources of information and ability to understand information, communicate questions, and critically evaluate the validity, reliability, and relevancy of information to their situation. Self-reported adherence levels and advice for AYA-specific care was also obtained. Interviews were coded and analyzed for emergent themes using QSR NVivo 10. Almost all AYAs named their doctor as the primary source of information. Most AYAs reported no difficulties with understanding, communicating, or assessing relevancy of information. Conversely, few AYAs reported confidence in assessment of validity and reliability of information. The doctor-patient relationship appeared to be an influential factor in all aspects of health literacy. AYAs frequently reported having a good understanding and communication around health information; however, few AYAs described engaging in critical evaluations of this information. The potential impact of the doctor-patient relationship across several domains of health literacy suggests that more focus could be placed on promoting health literacy at physician, community, and societal levels, in addition to promoting individual skills.

Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients.

PubMed

Zebrack, Brad J; Block, Rebecca; Hayes-Lattin, Brandon; Embry, Leanne; Aguilar, Christine; Meeske, Kathleen A; Li, Yun; Butler, Melissa; Cole, Steven

2013-01-01

Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs. Copyright © 2012 American Cancer Society.

Predictors of unmet needs and psychological distress in adolescent and young adult siblings of people diagnosed with cancer.

PubMed

McDonald, F E J; Patterson, P; White, K J; Butow, P; Bell, M L

2015-03-01

Predictors of psychological distress and unmet needs amongst adolescents and young adults (AYAs) who have a brother or sister diagnosed with cancer were examined. There were 106 AYAs (12-24 years old) who completed questionnaires covering demographics, psychological distress (Kessler 10), unmet needs (Sibling Cancer Needs Instrument) and family relationships (Family Relationship Index; Adult Sibling Relationship Questionnaire; Sibling Perception Questionnaire (SPQ)). Three models were analysed (demographic variables, cancer-specific variables and family functioning variables) using multiple linear regression to determine the role of the variables in predicting psychological distress and unmet needs. Unmet needs were higher for AYA siblings when treatment was current or a relapse had occurred. Higher scores on the SPQ-Interpersonal subscale indicating a perceived decrease in the quality of relationships with parents and others were associated with higher levels of distress and unmet needs. The age and gender of the AYA sibling, whether it was their brother or sister who was diagnosed with cancer, the age difference between them, the number of parents living with the AYA sibling, parental birth country, time since diagnosis, Family Relationship Index, Adult Sibling Relationship Questionnaire and the SPQ-Communication subscale did not significantly impact outcome variables. These results highlight the variables that can assist in identifying AYA siblings of cancer patients who are at risk and have a greater need for psychosocial assistance. Variables that may be associated with increased distress and unmet needs are reported to assist with future research. The results are also useful in informing the development of targeted psychosocial support for AYA siblings of cancer patients. Copyright © 2014 John Wiley & Sons, Ltd.

Determining research priorities for adolescent and young adult cancer in Australia.

PubMed

Medlow, S; Patterson, P

2015-07-01

The Australian Youth Cancer Service (YCS) is part of a growing international movement to provide advocacy and better targeted health-care services for adolescents and young adults (AYAs) with cancer. One of the key initiatives of the YCS is to determine and implement priorities within Australian AYA cancer research. The YCS used the value-weighting online survey technique of allocating 100 hypothetical units of funding across pre-determined topics of research in order to determine Australian consumers' and health professionals' AYA cancer research priorities. A total of 101 participants (26 consumers and 75 health professionals) took part in the online survey. Biomedical and Clinical Medicine Research was allocated the greatest proportion of available funding. A number of priority populations were also identified, although these were distributed across pre-treatment and post-treatment stages. The preferences of consumers and health professionals to invest available AYA cancer research funds in Biomedical and Clinical Medicine Research will be an important consideration in guiding the Australian YCS decision-making process in the immediate future. 'Prevention, screening and early detection' was also an important research funding target, along with survivorship populations. © 2015 John Wiley & Sons Ltd.

The burden of cancer in 25-29 year olds in New Zealand: a case for a wider adolescent and young adult age range?

PubMed

Ballantine, Kirsten R; Utley, Victoria; Watson, Heidi; Sullivan, Michael J; Spearing, Ruth

2018-01-19

New Zealand currently defines the adolescent and young adult (AYA) group for cancer services as young people 12-24 years of age, while other countries favour a designation of 15-29 years. This study was undertaken to compare cancer incidence and survival among 25-29 year olds to New Zealand's younger AYA population and to assess survival for our 15-29 year population against international benchmarks. Diagnostic and demographic information for cancer registrations between 2000 and 2009 for 25-29 year olds was obtained from the New Zealand Cancer Registry. Incidence rates (IR) and five-year relative survival estimates were calculated according to AYA diagnostic group/sub-group, sex and prioritised ethnicity. 1,541 new primary malignant cancers were diagnosed (IR: 588 per million). Five-year relative survival was 85%, but was significantly lower for Māori and Pacific peoples (both 77%) compared to non-Māori/non-Pacific peoples (88%). In the overall 15-29 year AYA cohort, disease-specific outcomes for bone tumours (46%) and breast cancer (64%) were inferior to international standards. New Zealand 25 to 29 year olds are at twice the risk of developing cancer as those 15-24 years. Given that the survival disparities identified were remarkably consistent with those for younger AYA, consideration should be given widening New Zealand's AYA age range.

Introduction to Adolescent and Young Adult Cancers

Cancer.gov

Cancer researchers, advocates, and a cancer survivor introduce the topic of adolescent and young adult (AYA) cancers, covering distinct aspects of cancer in these patients and research questions to answer.

Decision-making by adolescents and parents of children with cancer regarding health research participation.

PubMed

Read, Kate; Fernandez, Conrad Vincent; Gao, Jun; Strahlendorf, Caron; Moghrabi, Albert; Pentz, Rebecca Davis; Barfield, Raymond Carlton; Baker, Justin Nathaniel; Santor, Darcy; Weijer, Charles; Kodish, Eric

2009-09-01

Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials.

Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors.

PubMed

Casillas, Jacqueline; Kahn, Katherine L; Doose, Michelle; Landier, Wendy; Bhatia, Smita; Hernandez, Joanna; Zeltzer, Lonnie K

2010-09-01

To determine Latino adolescent and young adults (AYA) cancer survivors' perceived barriers or facilitators to transition from pediatric to adult-centered survivorship care and to also assess the parents' perspective of care. Partnering with a community-based organization that serves Latino survivors, we conducted a qualitative, constant comparative analytic approach exploring in-depth themes that have salience for Latino pediatric cancer survivors seeking care in the adult healthcare setting. Twenty-seven Latino AYA survivors (>or=15 years of age) completed key informant interviews and 21 Latino parents participated in focus groups. Both AYA survivors and parents identified two major facilitative factors for survivorship care: Involvement of the nuclear family in the AYA's survivorship care in the adult healthcare setting and including symptom communication in late effects discussions. Barriers to care included: perceived stigma of a cancer history and continued emotional trauma related to discussions about the childhood cancer experience. Barriers to survivorship care include cancer stigma for both patient and nuclear family, which can impact on seeking survivorship care due to constraints placed on discussions because it remains difficult to discuss 'cancer' years later. Future research can evaluate if these findings are unique to Latino childhood cancer survivors or are found in other populations of AYA cancer survivors transitioning to adult-centered healthcare. This community-based participatory research collaboration also highlights the opportunity to learn about the needs of childhood cancer survivors from the lens of community leaders serving culturally diverse populations. (c) 2010 John Wiley & Sons, Ltd.

Educational and vocational goal disruption in adolescent and young adult cancer survivors.

PubMed

Vetsch, Janine; Wakefield, Claire E; McGill, Brittany C; Cohn, Richard J; Ellis, Sarah J; Stefanic, Natalie; Sawyer, Susan M; Zebrack, Brad; Sansom-Daly, Ursula M

2018-02-01

Cancer in adolescents and young adults (AYAs) can interrupt important developmental milestones. Absence from school and time lost from work, together with the physical impacts of treatment on energy and cognition, can disrupt educational and vocational goals. The purpose of this paper is to report on AYA cancer survivors' experiences of reintegration into school and/or work and to describe perceived changes in their educational and vocational goals. Adolescents and young adults recruited from 7 hospitals in Australia, aged 15 to 26 years and ≤24 months posttreatment, were interviewed using the psychosocial adjustment to illness scale. Responses were analysed to determine the extent of, and explanations for, cancer's effect on school/work. Forty-two AYA cancer survivors (50% female) participated. Compared with their previous vocational functioning, 12 (28.6%) were scored as experiencing mild impairment, 14 (33.3%) moderate impairment, and 3 (7.1%) marked impairment. Adolescents and young adults described difficulties reintegrating to school/work as a result of cognitive impacts such as concentration problems and physical impacts of their treatment, including fatigue. Despite these reported difficulties, the majority indicated that their vocation goals were of equal or greater importance than before diagnosis (26/42; 62%), and most AYAs did not see their performance as compromised (23/42; 55%). Many survivors described a positive shift in life goals and priorities. The theme of goal conflict emerged where AYAs reported compromised abilities to achieve their goals. The physical and cognitive impacts of treatment can make returning to school/work challenging for AYA cancer survivors. Adolescents and young adults experiencing difficulties may benefit from additional supports to facilitate meaningful engagement with their chosen educational/vocational goals. Copyright © 2017 John Wiley & Sons, Ltd.

Depression in adolescents and young adults with cancer

PubMed Central

Park, Eliza M.; Rosenstein, Donald L.

2015-01-01

Adolescents and young adults (AYAs) with cancer are at risk for depression due to disruptions in their developmental trajectory, greater physical symptom burden, and increased likelihood of developing aggressive disease. Rates of depression and other psychological disorders are substantially higher in AYAs with cancer when compared with older adults. Psychiatrists caring for these patients must consider the age-appropriate developmental context of these patients along with familial and medical factors that may influence the presentation and treatment of depression. Previous research suggests that psychosocial interventions specifically designed for AYA patients are promising, but studies of psychopharmacology treatments for depression are lacking. There is a pressing need for prospective studies and controlled clinical trials that evaluate the optimal strategies for treating depression in this patient group. PMID:26246791

Oral Administration of Lactobacillus plantarum Strain AYA Enhances IgA Secretion and Provides Survival Protection against Influenza Virus Infection in Mice

PubMed Central

Kikuchi, Yosuke; Kunitoh-Asari, Ayami; Hayakawa, Katsuyuki; Imai, Shinjiro; Kasuya, Kenji; Abe, Kimio; Adachi, Yu; Fukudome, Shin-ichi; Takahashi, Yoshimasa; Hachimura, Satoshi

2014-01-01

The mucosal immune system provides the first line of defense against inhaled and ingested pathogenic microbacteria and viruses. This defense system, to a large extent, is mediated by the actions of secretory IgA. In this study, we screened 140 strains of lactic acid bacteria for induction of IgA production by murine Peyer’s patch cells. We selected one strain and named it Lactobacillus plantarum AYA. We found that L. plantarum AYA-induced production of IL-6 in Peyer’s patch dendritic cells, with this production promoting IgA+ B cells to differentiate into IgA-secreting plasma cells. We also observed that oral administration of L. plantarum AYA in mice caused an increase in IgA production in the small intestine and lung. This production of IgA correlated strongly with protective ability, with the treated mice surviving longer than the control mice after lethal influenza virus infection. Our data therefore reveals a novel immunoregulatory role of the L. plantarum AYA strain which enhances mucosal IgA production and provides protection against respiratory influenza virus infection. PMID:24466081

Oral administration of Lactobacillus plantarum strain AYA enhances IgA secretion and provides survival protection against influenza virus infection in mice.

PubMed

Kikuchi, Yosuke; Kunitoh-Asari, Ayami; Hayakawa, Katsuyuki; Imai, Shinjiro; Kasuya, Kenji; Abe, Kimio; Adachi, Yu; Fukudome, Shin-Ichi; Takahashi, Yoshimasa; Hachimura, Satoshi

2014-01-01

The mucosal immune system provides the first line of defense against inhaled and ingested pathogenic microbacteria and viruses. This defense system, to a large extent, is mediated by the actions of secretory IgA. In this study, we screened 140 strains of lactic acid bacteria for induction of IgA production by murine Peyer's patch cells. We selected one strain and named it Lactobacillus plantarum AYA. We found that L. plantarum AYA-induced production of IL-6 in Peyer's patch dendritic cells, with this production promoting IgA(+) B cells to differentiate into IgA-secreting plasma cells. We also observed that oral administration of L. plantarum AYA in mice caused an increase in IgA production in the small intestine and lung. This production of IgA correlated strongly with protective ability, with the treated mice surviving longer than the control mice after lethal influenza virus infection. Our data therefore reveals a novel immunoregulatory role of the L. plantarum AYA strain which enhances mucosal IgA production and provides protection against respiratory influenza virus infection.

Second Primary Malignant Neoplasms and Survival in Adolescent and Young Adult Cancer Survivors.

PubMed

Keegan, Theresa H M; Bleyer, Archie; Rosenberg, Aaron S; Li, Qian; Goldfarb, Melanie

2017-11-01

Although the increased incidence of second primary malignant neoplasms (SPMs) is a well-known late effect after cancer, few studies have compared survival after an SPM to survival of the same cancer occurring as first primary malignant neoplasm (PM) by age. To assess the survival impact of SPMs in adolescents and young adults (AYAs) (15-39 years) compared with that of pediatric (<15 years) and older adult (≥40 years) patients with the same SPMs. This was a population-based, retrospective cohort study of patients with cancer in 13 Surveillance, Epidemiology and End Results regions in the United States diagnosed from 1992 to 2008 and followed through 2013. Data analysis was performed between June 2016 and January 2017. Five-year relative survival was calculated overall and for each cancer occurring as a PM or SPM by age at diagnosis. The impact of SPM status on cancer-specific death was examined using multivariable Cox proportional hazards regression. A total of 15 954 pediatric, 125 750 AYAs, and 878 370 older adult patients diagnosed as having 14 cancers occurring as a PM or SPM were included. Overall, 5-year survival after an SPM was 33.1% lower for children, 20.2% lower for AYAs, and 8.3% lower for older adults compared with a PM at the same age. For the most common SPMs in AYAs, the absolute difference in 5-year survival was 42% lower for secondary non-Hodgkin lymphoma, 19% for secondary breast carcinoma, 15% for secondary thyroid carcinoma, and 13% for secondary soft-tissue sarcoma. Survival by SPM status was significantly worse in younger vs older patients for thyroid, Hodgkin lymphoma, non-Hodgkin lymphoma, acute myeloid leukemia, soft-tissue sarcoma, and central nervous system cancer. Adolescents and young adults with secondary Hodgkin lymphoma (hazard ratio [95% CI], 3.5 [1.7-7.1]); soft-tissue sarcoma (2.8 [2.1-3.9]); breast carcinoma (2.1 [1.8-2.4]); acute myeloid leukemia (1.9 [1.5-2.4]); and central nervous system cancer (1.8 [1

Perceived impact of cancer among adolescents and young adults: Relationship with health-related quality of life and distress.

PubMed

Husson, O; Zebrack, B J

2017-09-01

To examine whether perceptions of the impact of cancer are related to health-related quality of life (HRQoL) and psychological distress among survivors of cancer in adolescence and young adulthood (AYA). One hundred seventy-three AYA cancer survivors (aged 18-35 and 15-29 years at time of diagnosis) completed a mailed survey assessing impact of cancer (IOC-AYA), HRQoL (SF-36), and distress (BSI-18). Hierarchical linear regression models analyzed the independent effects of perceived impacts of cancer on HRQoL and distress after controlling for clinical and sociodemographic characteristics. Multivariate analyses also examined the extent to which positive and negative perceptions attenuated the effects of control variables on HRQoL and distress. Being unemployed or not in school, and self-reported health problems were significantly associated with worse physical HRQoL. Mental HRQoL and psychological distress appeared as a function of reporting both positive and negative impacts of cancer; mental health outcomes were better in AYAs reporting more positive and less negative impact of cancer in their lives. Perceived impact of cancer, in both positive and negative ways, attenuated the effects of sociodemographic and clinical factors on mental HRQoL and psychological distress. Results suggest that mental HRQoL and psychological distress, but not physical HRQoL, are a function of survivors' perceptions of how cancer has affected them and continues to affect them in both positive and negative ways. Findings suggest that opportunities for AYA cancer survivors to reframe or better understand the context of cancer in their lives may result in improved mental health outcomes. Copyright © 2016 John Wiley & Sons, Ltd.

Spending on Hospital Care and Pediatric Psychology Service Use Among Adolescents and Young Adults With Cancer.

PubMed

McGrady, Meghan E; Peugh, James L; Brown, Gabriella A; Pai, Ahna L H

2017-10-01

To examine the relationship between need-based pediatric psychology service use and spending on hospital care among adolescents and young adults (AYAs) with cancer. Billing data were obtained from 48 AYAs with cancer receiving need-based pediatric psychology services and a comparison cohort of 48 AYAs with cancer not receiving services. A factorial analysis of covariance examined group differences in spending for hospital care. Pending significant findings, a multivariate analysis of covariance was planned to examine the relationship between need-based pediatric psychology service use and spending for inpatient admissions, emergency department (ED) visits, and outpatient visits. Spending for hospital care was higher among AYAs receiving need-based pediatric psychology services than in the comparison cohort (p < .001, ωPartial2 = .11). Group differences were driven by significantly higher spending for inpatient admissions and ED visits among AYAs receiving need-based pediatric psychology services. The behavioral and psychosocial difficulties warranting need-based pediatric psychology services may predict higher health care spending. © The Author 2017. 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

Weight-Related Correlates of Psychological Dysregulation in Adolescent and Young Adult (AYA) Females with Severe Obesity

PubMed Central

Gowey, Marissa A.; Reiter-Purtill, Jennifer; Becnel, Jennifer; Peugh, James; Mitchell, James E.; Zeller, Meg H.

2016-01-01

Objective Severe obesity is the fastest growing pediatric subgroup of excess weight levels. Psychological dysregulation (i.e., impairments in regulating cognitive, emotional, and/or behavioral processes) has been associated with obesity and poorer weight loss outcomes. The present study explored associations of dysregulation with weight-related variables among adolescent and young adult (AYA) females with severe obesity. Methods Fifty-four AYA females with severe obesity (MBMI=48.71 kg/m2; Mage=18.29, R=15–21 years; 59.3% White) completed self-report measures of psychological dysregulation and weight-related constructs including meal patterns, problematic eating behaviors, and body and weight dissatisfaction, as non-surgical comparison participants in a multi-site study of adolescent bariatric surgery outcomes. Pearson and bivariate correlations were conducted and stratified by age group to analyze associations between dysregulation subscales (affective, behavioral, cognitive) and weight-related variables. Results Breakfast was the most frequently skipped meal (consumed 3–4 times/week). Eating out was common (4–5 times/week) and mostly occurred at fast-food restaurants. Evening hyperphagia (61.11%) and eating in the absence of hunger (37.04%) were commonly endorsed, while unplanned eating (29.63%), a sense of loss of control over eating (22.22%), eating beyond satiety (22.22%), night eating (12.96%), and binge eating (11.11%) were less common. Almost half of the sample endorsed extreme weight dissatisfaction. Dysregulation was associated with most weight-related attitudes and behaviors of interest in young adults but select patterns emerged for adolescents. Conclusions Higher levels of psychological dysregulation are associated with greater BMI, problematic eating patterns and behaviors, and body dissatisfaction in AYA females with severe obesity. These findings have implications for developing novel intervention strategies for severe obesity in AYAs that may

Adolescents and young adults with cancer: aspects of adherence - a questionnaire study.

PubMed

Kleinke, Anne Marie; Classen, Carl Friedrich

2018-01-01

For adolescents and young adults (AYAs), a cancer diagnosis represents an extraordinary strike in a vulnerable phase of life. They have special needs that the medical system has to take into consideration, and they exhibit a lower degree of therapy adherence than both older and younger patients. The purpose of this study was first to analyze the adherence of AYAs with cancer compared to a group of older patients and, second, to determine correlated parameters, with focus on the psychosocial interaction between physicians and patients. In 2012, a complete 1 year cohort of patients reported, by use of a questionnaire, to the Rostock clinical cancer registry, and a group of older patients were invited to answer a multi-item set of questionnaires on a volunteer basis, leading to a population-based cross-sectional analysis. This included a bias due to non-answering which is unavoidable in such a setting. The questionnaire consisted of well-established standard questionnaires, a questionnaire on adherence that has just recently been published, and a self-written questionnaire focusing on patient-physician relationship. The responses were analyzed for our current study. Gender, religion, education, age, anxiety, family atmosphere, or physician-patient relationship were not significantly correlated to adherence in AYAs. However, markedly more AYAs, as compared to the older patients group, considered breaking off therapy and reported suboptimal communication with the physicians. Only the perceived physical illness could be identified as a factor related to adherence among the AYA group. Our findings confirm the need for more focused approaches to serve the special needs of AYAs, with particular attention on specific items that showed up discriminating AYAs from older patients, that is, Internet use and communication with physicians. Here, further research is needed to examine adherence to specific treatment protocols.

Factors influencing the documentation of fertility-related discussions for adolescents and young adults with cancer.

PubMed

Skaczkowski, G; White, V; Thompson, K; Bibby, H; Coory, M; Pinkerton, R; Nicholls, W; Orme, L M; Conyers, R; Phillips, M B; Osborn, M; Harrup, R; Anazodo, A

2018-06-01

A cancer diagnosis and treatment may have significant implications for a young patient's future fertility. Documentation of fertility-related discussions and actions is crucial to providing the best follow-up care, which may occur for many years post-treatment. This study examined the rate of medical record documentation of fertility-related discussions and fertility preservation (FP) procedures for adolescents and young adults (AYAs) with cancer in Australia. A retrospective review of medical records for 941 patients in all six Australian states. Patients were identified through population-based cancer registries (four states) and hospital admission lists (two states). Trained data collectors extracted information from medical records using a comprehensive data collection survey. Records were reviewed for AYA patients (aged 15-24 years at diagnosis), diagnosed with acute myeloid leukaemia, acute lymphoblastic leukaemia, central nervous system (CNS) tumours, soft tissue sarcomas (STS), primary bone cancer or Ewing's family tumours between 2007 and 2012. 47.2% of patients had a documented fertility discussion and 35.9% had a documented FP procedure. Fertility-related documentation was less likely for female patients, those with a CNS or STS diagnosis and those receiving high-risk treatments. In multivariable models, adult hospitals with an AYA focus were more likely to document fertility discussions (odds ratio[OR] = 1.60; 95%CI = 1.08-2.37) and FP procedures (OR = 1.74; 95%CI = 1.17-2.57) than adult hospitals with no AYA services. These data provide the first national, population-based estimates of fertility documentation for AYA cancer patients in Australia. Documentation of fertility-related discussions was poor, with higher rates observed in hospitals with greater experience of treating AYA patients. Copyright © 2018 Elsevier Ltd. All rights reserved.

Recent developments in supporting adolescent and young adult siblings of cancer patients.

PubMed

Patterson, Pandora; Medlow, Sharon; McDonald, Fiona E J

2015-07-01

The psychosocial needs of adolescent and young adult (AYA) siblings of cancer patients are easily overlooked. Accordingly, the evidence base informing short and long-term outcomes for these young people is sparse. This review provides an overview of recent research highlighting the experiences, unmet needs and psychosocial issues of AYA siblings, together with recent interventions. The reviewed studies bring focus to the range of informational and supportive care needs that typically remain unmet in AYA siblings. The limited number of interventions designed specifically for this group not only appear to have positive results but also underscore the need for effective risk stratification preintervention and tailoring of interventions to the specific needs of participants. AYA siblings of cancer patients display a range of psychosocial symptoms that can be ameliorated with age-appropriate information and targeted intervention programs. Limited research suggests that the majority of unmet needs for AYA siblings seem to occur during the acute phases of the brother or sister's initial diagnosis, treatment and relapse. Further research is required on siblings' long-term psychosocial assessment and management, bereavement, family systems, the impact of the cancer experience on siblings' personality and identity, and the development and evaluation of tailored psychosocial interventions. Policy research is also required to identify opportunities for expanding established healthcare systems to include sibling support.

The importance of assessing priorities of reproductive health concerns among adolescent and young adult patients with cancer.

PubMed

Murphy, Devin; Klosky, James L; Reed, Damon R; Termuhlen, Amanda M; Shannon, Susan V; Quinn, Gwendolyn P

2015-08-01

Visions for the future are a normal developmental process for adolescents and young adults (AYAs) with and without cancer, and these visions often include expectations of sexual and romantic relationships. AYA cancer survivors indicate reproductive health is an issue of great importance and more attention is needed in the health care setting throughout the cancer experience, beginning at diagnosis. Various practice guidelines are predominately focused on fertility; are intended to influence survivorship care plans; and do not encompass the broad scope of reproductive health that includes romantic partnering, friendships, body image, sexuality, sexual identity, fertility, contraception, and more. Although interventions to reduce reproductive health-related sequelae from treatment are best approached as an evolving process, practitioners are not certain of the priorities of these various reproductive health content areas. Strategies incongruent with the reproductive health priorities of AYAs will likely thwart adequate follow-up care and foster feelings of isolation from the treatment team. Research is needed to identify these priorities and ensure discussions of diverse content areas. This review explored various domains of reproductive health and emphasized how understanding the priorities of the AYA cancer cohort will guide future models of care. © 2015 American Cancer Society.

Use of appropriate initial treatment among adolescents and young adults with cancer.

PubMed

Potosky, Arnold L; Harlan, Linda C; Albritton, Karen; Cress, Rosemary D; Friedman, Debra L; Hamilton, Ann S; Kato, Ikuko; Keegan, Theresa H M; Keel, Gretchen; Schwartz, Stephen M; Seibel, Nita L; Shnorhavorian, Margarett; West, Michele M; Wu, Xiao-Cheng

2014-11-01

There has been little improvement in the survival of adolescent and young adult (AYA) cancer patients aged 15 to 39 years relative to other age groups, raising the question of whether such patients receive appropriate initial treatment. We examined receipt of initial cancer treatment for a population-based sample of 504 AYAs diagnosed in 2007-2008 with acute lymphoblastic leukemia (ALL), Hodgkin's or non-Hodgkin's lymphoma, germ cell cancer, or sarcoma. Registry data, patient surveys, and detailed medical record reviews were used to evaluate the association of patient demographic, socioeconomic, and health care setting characteristics with receipt of appropriate initial treatment, which was defined by clinical specialists in AYA oncology based on adult guidelines and published literature available before 2009 and analyzed with multivariable logistic regression. All statistical tests were two-sided. Approximately 75% of AYA cancer patients in our sample received appropriate treatment, 68% after excluding stage I male germ cell patients who all received appropriate treatment. After this exclusion, appropriate treatment ranged from 79% of sarcoma patients to 56% of ALL patients. Cancer type (P < .01) and clinical trial participation (P = .04) were statistically significantly associated with appropriate treatment in multivariable analyses. Patients enrolled in clinical trials were more likely to receive appropriate therapy relative to those not enrolled (78% vs 67%, adjusted odds ratio = 2.6, 95% confidence interval = 1.1 to 6.4). Except for those with early stage male germ cell tumors, approximately 30% (or 3 in 10) AYA cancer patients did not receive appropriate therapy. Further investigation is required to understand the reasons for this potential shortfall in care delivery. © The Author 2014. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oup.com.

Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP).

PubMed

Clinton-McHarg, Tara; Carey, Mariko; Sanson-Fisher, Rob; D'Este, Catherine; Shakeshaft, Anthony

2012-01-30

Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability. The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60. The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory factor analysis. Future studies with a

Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP)

PubMed Central

2012-01-01

Background Adolescents and young adult (AYA) cancer survivors may have unique physical, psychological and social needs due to their cancer occurring at a critical phase of development. The aim of this study was to develop a psychometrically rigorous measure of unmet need to capture the specific needs of this group. Methods Items were developed following a comprehensive literature review, focus groups with AYAs, and feedback from health care providers, researchers and other professionals. The measure was pilot tested with 32 AYA cancer survivors recruited through a state-based cancer registry to establish face and content validity. A main sample of 139 AYA cancer patients and survivors were recruited through seven treatment centres and invited to complete the questionnaire. To establish test-retest reliability, a sub-sample of 34 participants completed the measure a second time. Exploratory factor analysis was performed and the measure was assessed for internal consistency, discriminative validity, potential responsiveness and acceptability. Results The Cancer Needs Questionnaire - Young People (CNQ-YP) has established face and content validity, and acceptability. The final measure has 70 items and six factors: Treatment Environment and Care (33 items); Feelings and Relationships (14 items); Daily Life (12 items); Information and Activities (5 items); Education (3 items); and Work (3 items). All domains achieved Cronbach's alpha values greater than 0.80. Item-to-item test-retest reliability was also high, with all but four items reaching weighted kappa values above 0.60. Conclusions The CNQ-YP is the first multi-dimensional measure of unmet need which has been developed specifically for AYA cancer patients and survivors. The measure displays a strong factor structure, and excellent internal consistency and test-retest reliability. However, the small sample size has implications for the reliability of the statistical analyses undertaken, particularly the exploratory

Online group-based cognitive-behavioural therapy for adolescents and young adults after cancer treatment: a multicenter randomised controlled trial of Recapture Life-AYA.

PubMed

Sansom-Daly, Ursula M; Wakefield, Claire E; Bryant, Richard A; Butow, Phyllis; Sawyer, Susan; Patterson, Pandora; Anazodo, Antoinette; Thompson, Kate; Cohn, Richard J

2012-08-03

peer and caregiver support in enhancing the effectiveness of this skills-based intervention is also discussed. The innovative videoconferencing delivery method Recapture Life uses has the potential to address the geographic and psychological isolation of adolescents and young adults as they move toward cancer survivorship. It is expected that teaching AYAs coping skills as they resume their normal lives after cancer may have long-term implications for their quality of life. ACTRN12610000717055.

Spirituality in Adolescents and Young Adults With Cancer: A Review of Literature.

PubMed

McNeil, Sharon B

2016-01-01

Spirituality and religion have been found to have a positive impact on adults with cancer, but these concepts have not been well examined in adolescents and young adults (AYA) with cancer. AYA often question and struggle with their religious and spiritual beliefs, so it is not clear if spirituality and religion have the same positive impact on this age group. The purpose of this review of literature was to examine the research that has been conducted in spirituality in AYA with cancer. The review covered the years from 1980 to present. The terms cancer, adolescents, and young adults as well as the phrases spirit* and relig* were used to capture the different variations of words. Nine articles were found that explored spirituality and religiosity in AYA with cancer. This review highlighted the need for clarifying the terms used in describing the concept. This lack of continuity in terms makes it difficult to compare the studies. The methods used to measure spirituality are varied. Pediatric oncology nurses need to be sensitive to the spiritual needs of their patients. This can be accomplished by keeping an open line of communication and ensuring uninterrupted time to pray or read scriptures. Because of the variety of ways to express spirituality, the important first step is to ask what spirituality means to them. © 2015 by Association of Pediatric Hematology/Oncology Nurses.

Improved nutrition in adolescents and young adults after childhood cancer - INAYA study.

PubMed

Quidde, J; von Grundherr, J; Koch, B; Bokemeyer, C; Escherich, G; Valentini, L; Buchholz, D; Schilling, G; Stein, A

2016-11-08

Multimodality treatment improves the chance of survival but increases the risk for long-term side effects in young cancer survivors, so-called" Adolescents and Young Adults"(AYAs). Compared to the general population AYAs have a 5 to 15-fold increased risk of cardiovascular morbidity. Thus, improving modifiable lifestyle risk factors is of particular importance. The INAYA trial included AYAs between 18 and 39 years receiving an intensified individual nutrition counseling at four time points in a 3-month period based on a 3-day dietary record. At week 0 and 12 AYAs got a face-to-face counseling, at week 2 and 6 by telephone. Primary endpoint was change in nutritional behavior measured by Healthy Eating Index - European Prospective Investigation into Cancer and Nutrition (HEI-EPIC). Twenty-three AYAs (11 female, 12 male, median age 20 years (range 19-23 years), median BMI: 21.4 kg/m 2 (range: 19.7-23.9 kg/m 2 ) after completion of cancer treatment for sarcoma (n = 2), carcinoma (n = 2), blastoma (n = 1), hodgkin lymphoma (n = 12), or leukemia (n = 6) were included (median time between diagnosis and study inclusion was 44 month). The primary endpoint was met, with an improvement of 20 points in HEI-EPIC score in 52.2 % (n = 12) of AYAs. At baseline, median HEI-EPIC score was 47.0 points (range from 40.0 to 55.0 points) and a good, moderate and bad nutritional intake was seen in 4.3, 73.9 and 21.7 % of AYAs. At week 12, median HEI-EPIC improved significantly to 65.0 points (range from 55.0 to 76.0 points) (p ≤ 0.001) and a good, moderate and bad nutritional intake was seen in 47.8, 52.2 and 0 % of AYAs. No change was seen in quality of life, waist-hip ratio and blood pressure. Intensified nutrition counseling is feasible and seem to improve nutritional behavior of AYAs. Further studies will be required to demonstrate long-term sustainability and confirm the results in a randomized design in larger cohorts. Clinical trial identifier

The Experience of Adolescents and Young Adults Treated for Cancer in an Adult Setting: A Review of the Literature.

PubMed

Marshall, Steve; Grinyer, Anne; Limmer, Mark

2018-02-13

The purpose of this review is to explore the literature on the experience of adolescents and young adults (AYAs) having cancer treatment in an adult setting, rather than on a specialist adolescent cancer unit. The integrative review method was used to explore the current literature. Primary research on the topic was located systematically and then synthesized into a thematic narrative. The experience of AYAs undergoing treatment in an adult setting was generally negative. This can be attributed to three themes: feeling isolated in the adult setting; the lack of empathy from staff working in the adult setting; and the inappropriateness of the adult environment for this age group. As many AYAs with cancer will continue to have treatment in adult settings, staff working in this environment should be aware of the negative experience of this cohort and the impact this can have on a vulnerable group of patients. Staff could consider simple ways of improving the AYA experience, such as connecting AYA patients with their peers to reduce isolation; adapting their approach to take account of the unique emotional needs of this age group; and considering ways of making the environment more welcoming and age-appropriate.

Cancer-Related Fatigue in Adolescents and Young Adults After Cancer Treatment: Persistent and Poorly Managed.

PubMed

Spathis, Anna; Hatcher, Helen; Booth, Sara; Gibson, Faith; Stone, Paddy; Abbas, Laura; Barclay, Matt; Brimicombe, James; Thiemann, Pia; McCabe, Martin G; Campsey, Rachel; Hooker, Louise; Moss, Wendy; Robson, Jane; Barclay, Stephen

2017-09-01

Cancer-related fatigue is the most prevalent and distressing symptom experienced by adolescents and young adults (AYAs). An electronic survey was undertaken to ascertain current fatigue management and perceptions of its effectiveness. Eighty-five percent of responders (68/80) experienced fatigue, and it was worse more than 1 year after cancer treatment ended, compared to <1 year (p = 0.007). Forty-one percent received no fatigue management. Although advice to exercise was the most frequent intervention, the greatest impact of fatigue was on the ability to exercise and most did not find exercise advice helpful. Early intervention is warranted, supporting AYAs to persevere with increasing activity.

Creating a standardized process to offer the standard of care: continuous process improvement methodology is associated with increased rates of sperm cryopreservation among adolescent and young adult males with cancer.

PubMed

Shnorhavorian, Margarett; Kroon, Leah; Jeffries, Howard; Johnson, Rebecca

2012-11-01

There is limited literature on strategies to overcome the barriers to sperm banking among adolescent and young adult (AYA) males with cancer. By standardizing our process for offering sperm banking to AYA males before cancer treatment, we aimed to improve rates of sperm banking at our institution. Continuous process improvement is a technique that has recently been applied to improve health care delivery. We used continuous process improvement methodologies to create a standard process for fertility preservation for AYA males with cancer at our institution. We compared rates of sperm banking before and after standardization. In the 12-month period after implementation of a standardized process, 90% of patients were offered sperm banking. We demonstrated an 8-fold increase in the proportion of AYA males' sperm banking, and a 5-fold increase in the rate of sperm banking at our institution. Implementation of a standardized process for sperm banking for AYA males with cancer was associated with increased rates of sperm banking at our institution. This study supports the role of standardized health care in decreasing barriers to sperm banking.

Clinical Trial Participation and Time to Treatment Among Adolescents and Young Adults With Cancer: Does Age at Diagnosis or Insurance Make a Difference?

PubMed Central

Parsons, Helen M.; Harlan, Linda C.; Seibel, Nita L.; Stevens, Jennifer L.; Keegan, Theresa H.M.

2011-01-01

Purpose Because adolescent and young adult (AYA) patients with cancer have experienced variable improvement in survival over the past two decades, enhancing the quality and timeliness of cancer care in this population has emerged as a priority area. To identify current trends in AYA care, we examined patterns of clinical trial participation, time to treatment, and provider characteristics in a population-based sample of AYA patients with cancer. Methods Using the National Cancer Institute Patterns of Care Study, we used multivariate logistic regression to evaluate demographic and provider characteristics associated with clinical trial enrollment and time to treatment among 1,358 AYA patients with cancer (age 15 to 39 years) identified through the Surveillance, Epidemiology, and End Results Program. Results In our study, 14% of patients age 15 to 39 years had enrolled onto a clinical trial; participation varied by type of cancer, with the highest participation in those diagnosed with acute lymphoblastic leukemia (37%) and sarcoma (32%). Multivariate analyses demonstrated that uninsured, older patients and those treated by nonpediatric oncologists were less likely to enroll onto clinical trials. Median time from pathologic confirmation to first treatment was 3 days, but this varied by race/ethnicity and cancer site. In multivariate analyses, advanced cancer stage and outpatient treatment alone were associated with longer time from pathologic confirmation to treatment. Conclusion Our study identified factors associated with low clinical trial participation in AYA patients with cancer. These findings support the continued need to improve access to clinical trials and innovative treatments for this population, which may ultimately translate into improved survival. PMID:21931022

The association of metacognitive beliefs with emotional distress and trauma symptoms in adolescent and young adult survivors of cancer.

PubMed

Fisher, Peter L; McNicol, Kirsten; Cherry, Mary Gemma; Young, Bridget; Smith, Ed; Abbey, Gareth; Salmon, Peter

2018-04-03

Adolescent and young adults who have survived cancer are at an increased risk of psychological distress. This study investigated whether metacognitive beliefs are associated with emotional distress and trauma symptoms in adolescent and young adult (AYA) survivors of cancer independent of known covariates, including current physical health difficulties. Cross-sectional survey using multiple self-report measures. Eighty-seven AYA survivors of cancer were recruited from follow-up appointments at an oncology unit and completed self-report questionnaires measuring emotional distress, posttraumatic stress symptoms, metacognitive beliefs, demographic information, and current physical health difficulties. Data were analysed using correlational and hierarchical multiple regression analyses. Metacognitive beliefs explained an additional 50% and 41% of the variance in emotional distress and posttraumatic stress symptoms, respectively, after controlling for known covariate effects, including current physical health difficulties. Conclusions/Implications for Psychosocial Providers or Policy: The metacognitive model of psychopathology is potentially applicable to AYA survivors of cancer who present with elevated general distress and/or posttraumatic stress symptoms. Prospective studies are required to determine whether metacognitive beliefs and processes have a causal role in distress in AYA survivors of cancer.

Tailoring the delivery of cancer diagnosis to adolescent and young adult patients displaying strong emotions: An observational study of two cases

PubMed Central

Korsvold, Live; Lie, Hanne Cathrine; Mellblom, Anneli Viktoria; Ruud, Ellen; Loge, Jon Håvard; Finset, Arnstein

2016-01-01

Delivering the bad news of a cancer diagnosis to adolescent and young adult (AYA) patients who display strong emotions is particularly challenging not the least because AYAs are at a vulnerable developmental stage. Due to the lack of research on how to personalize the delivery of bad news to AYA patients’ emotions we report a case study of the communicative behavior of oncologists in two such consultations to describe the complexity of the phenomena at study. We audio-recorded and transcribed consultations where oncologists delivered cancer diagnoses to nine AYAs aged 12–25 years. Two of these patients displayed particularly strong emotional behavior (anger, fear, and sadness) and were chosen as cases. An interpretative analysis in three steps was applied to investigate the oncologists’ communicative behavior when delivering bad news. The focus was on how the oncologists responded to the strong but different emotional behaviors of the AYAs. We also related the oncologists’ communicative behavior to elements from a widely used protocol for delivering bad news. We found that the oncologists applied five communication strategies: elicit patient perspective, provide information, respond to patient's expression of emotion (acknowledging and containing emotions), encourage commitment to treatment, and provide hope. The findings illustrate how oncologists’ communicative behavior may be tailored to individual expressions of emotions in AYA cancer patients. PMID:27125477

[Pain experiences and life satisfaction of young adult cancer patients].

PubMed

Geue, K; Schmidt, R; Sender, A; Friedrich, M

2017-02-01

After having completed medical treatment cancer patients often suffer from pain that can impair the quality of life. While young adolescents and adults (AYA) with cancer have become the focus of research during recent years, literature on the prevalence, quality and relief of pain in AYA patients is lacking. This study investigated psychosocial data on pain experienced by AYA patients (e.g. prevalence, type, distress, anxiety and need for support) and the association with the quality of life. Standardized and validated questionnaires were used for assessing pain and quality of life in AYA patients defined as the patient group between 18 and 39 years. Calculated regression models were summarized in a pathway model. Out of 117 AYA patients (66 % women) 45 (39 %) suffered from pain and of these 73 % felt impaired due to the pain, 58 (50 %) had a fear of pain and 21 (20 %) reported a need for support. The severity of pain had a negative influence on physical functioning (β = -0.335) and health-related satisfaction (β = -0.415). Regarding the quality of life, 105 patients (90 %) were overall satisfied with their life. Dissatisfaction was reported in the areas of occupation (39.34 %), ability to relax (36.31 %), physical performance (34.29 %), income (32.27 %) and partnership/sexuality (29.25 %). This study provides evidence that pain plays a relevant role for AYA patients after the end of medical treatment. A substantial proportion of AYA patients reported the need for support so that the question arises whether medical pain management is sufficient, particularly as pain was associated with impairment and strongly negatively associated with health-related satisfaction.

Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT.

PubMed

Curtin, Katherine B; Watson, Anne E; Wang, Jichuan; Okonkwo, Obianuju C; Lyon, Maureen E

2017-11-01

Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like caregivers of adult patients, struggle to initiate this conversation. Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer is a longitudinal, randomized, controlled, single-blinded clinical trial aimed at evaluating the efficacy of FAmily CEntered disease-specific advance care planning (ACP) for teens with cancer (FACE-TC). A total of 130 dyads (260 subjects) composed of AYAs 14-20years old with cancer and their family decision maker (≥18years old) will be recruited from pediatric oncology programs at Akron Children's Hospital and St. Jude Children's Research Hospital. Dyads will be randomized to either the FACE-TC intervention or Treatment as Usual (TAU) control. FACE-TC intervention dyads will complete three 60-minute ACP sessions held at weekly intervals. Follow-up data will be collected at 3, 6, 12, and 18months post-intervention by a blinded research assistant (RA). The effects of FACE-TC on patient-family congruence in treatment preferences, quality of life (QOL), and advance directive completion will be analyzed. FACE-TC is an evidenced-based and patient-centered intervention that considers QOL and EOL care according to the AYA's representation of illness. The family is involved in the ACP process to facilitate shared decision making, increase understanding of the AYA's preferences, and make a commitment to honor the AYA's wishes. Copyright © 2017 Elsevier Inc. All rights reserved.

A review of Canadian health care and cancer care systems.

PubMed

Sutcliffe, Simon B

2011-05-15

Canada is a westernized, market-economy nation with a publicly funded health care and cancer control system and has health indices reflective of a high-resource economy. Provision of health services is in accord with the Canada Health Act and is implemented through federal, provincial, and territorial relations wherein federal funding partly provides support for the provincial/territorial delivery of health services. Cancer services are provided within the acute health care system with dedicated entities existing in parallel in most provinces to provide services specific to the diagnosis, treatment, and support of cancer patients. Interprovincial and territorial collaboration to enhance and facilitate optimal cancer system performance is enabled through the Canadian Partnership Against Cancer (the Canadian national cancer control initiative). Adolescent and young adult (AYA) cancer patients use both the pediatric and adult cancer systems. There is recognition, however, that although AYA patients are numerically a small portion of all cancer patients, the negative personal, societal, and socioeconomic impacts of potential years of life lost are substantial and can be lessened through attention to awareness, education, redesign of care and care pathways, quality of life, developmental aspects related to adolescent-teen-adult transitions, continuity of care, and surveillance across pediatric and adult settings. Appropriate solutions need to be established within the framework of the Canadian Health Service by innovative rethinking and realignment of system capacity and performance to the special needs of AYA cancer patients. © 2011 American Cancer Society

Online group-based cognitive-behavioural therapy for adolescents and young adults after cancer treatment: A multicenter randomised controlled trial of Recapture Life-AYA

PubMed Central

2012-01-01

modality are highlighted, and the role of both peer and caregiver support in enhancing the effectiveness of this skills-based intervention is also discussed. The innovative videoconferencing delivery method Recapture Life uses has the potential to address the geographic and psychological isolation of adolescents and young adults as they move toward cancer survivorship. It is expected that teaching AYAs coping skills as they resume their normal lives after cancer may have long-term implications for their quality of life. Trial Registration ACTRN12610000717055 PMID:22862906

Identifying and Understanding the Gaps in Care Experienced by Adolescent and Young Adult Cancer Patients at the University of Iowa Hospitals and Clinics.

PubMed

Mobley, Erin M; Foster, Kristin J; Terry, William W

2018-06-20

In an effort to counteract the differences in improvement in survival rates of adolescents and young adults (AYA), compared to other age groups with cancer, the University of Iowa Hospitals and Clinics established an AYA cancer program. This study was conducted to gather feedback from AYAs in an effort to generate actionable data for program development. The target population included patients aged 13-31 treated for malignancy in one of the following disease sites: central nervous system, leukemia, lymphoma, neuroendocrine, sarcoma, and thyroid. A series of four focus groups was held to identify and describe gaps in care and provide suggestions for program development. A convergent parallel mixed-methods design was used. Qualitative data were derived from focus group discussion and free-response survey questions, while quantitative data were derived from objective survey questions and electronic medical record data. Across the four focus groups, 24 different AYAs participated, ranging from 8 to 19 individuals per session. Topics discussed included the following: communication, treatment experience, and overall AYA program; finances, work and school, and late effects; relationships, emotions, and spirituality; and body image, infertility, sexuality, risky behavior, and suicide. The results of the analyses corroborated what makes AYAs different from other age groups. The primary theme identified was the unique relationships of AYAs, which can be thought of along a continuum. Information obtained from these analyses has been used to inform specific projects within the development of the AYA program to address patient-identified gaps. For AYAs, the importance of relationships along a continuum should be considered when developing an AYA program, in addition to potential policy or health service research utilization in the future.

Sociodemographic Disparities in Quality of Life for Survivors of Adolescent and Young Adult Cancers in the Behavioral Risk Factor Surveillance System

PubMed Central

Spraker-Perlman, Holly L.; McFadden, Molly; Warner, Echo L.; Oeffinger, Kevin C.; Wright, Jennifer; Kinney, Anita Y.

2014-01-01

Purpose: Survivors of cancer diagnosed during adolescence and young adulthood (AYA; aged 15–39) may experience quality of life (QOL) limitations; however, little is known about QOL for AYA survivors who are now middle-aged or among racial/ethnic minority survivors. We evaluated QOL outcomes for AYA cancer survivors relative to a non-cancer comparison group by gender, race/ethnicity, and current age. Methods: Using the 2009 Behavioral Risk Factor Surveillance System (BRFSS) data, we identified 8375 individuals diagnosed with cancer while aged 15–39 years old and 334,759 controls. Participants were currently ≥20 years of age. QOL was measured using four items from the Center for Disease Control's Healthy Days Measure (general health, number of days of poor physical and mental health, and activity limitation days). Multivariable regressions compared these measures for survivors and controls by gender, race/ethnicity, and age, and among survivors to determine cancer-related factors associated with poor QOL. Results: Survivors were more likely to report fair/poor general health than controls (relative risk=1.92; 95% confidence interval: 1.77–2.10; p<0.001). QOL limitations existed by gender and race/ethnicity for survivors. Approximately 30% of survivors currently in their 40s, 50s, and early 60s were in poor health, compared to less than 20% of same-aged controls (both p<0.001). Of survivors with two or more cancers, 41.0% reported poor health, compared to 26.2% with one cancer (p<0.001). Conclusion: AYA cancer survivors have worse QOL compared to the general population and these limitations persist across gender, race/ethnicity, and age. Targeted interventions are essential for improving AYA cancer survivors' health status. PMID:24940530

A reflection on the work of Gianni Bonadonna from the viewpoint of the global challenge of adolescents and young adults with cancer.

PubMed

Barr, Ronald D; Bleyer, W Archie

2017-11-23

Adolescents and young adults (AYAs - ages 15 to 39) constitute approximately 40% of the world's population and contribute an estimated one million new cases of cancer annually, the great majority in low- and middle-income countries (LMICs). In high-income countries (HICs) cancer is the commonest cause of disease-related death in AYAs, though overall 5-year survival rates now exceed 80%. A very different circumstance likely holds in LMICs, but accurate assessments are not readily available.Breast cancer accounts for 40% of tumours in female AYAs and this age group includes the peak incidence of Hodgkin lymphoma. The late Professor Gianni Bonadonna contributed importantly to improved survival in patients with these two diseases. Accordingly, he would be justifiably proud of the advances in AYA oncology that are being made in Italy, especially the impact of his colleagues at the Istituto Nazionale dei Tumori (INT). The initiatives of the Associazione Italiana Ematologia Pediatrica and the Società Italiana Adolescenti con Malattie Onco-ematologiche are particularly noteworthy, with the accomplishment of productive collaboration between paediatric and adult cancer care providers serving as a model for other countries to emulate.Exporting these advances can be successful through the vehicle of "twinning": establishing sustainable cooperation between institutions in HICs and partners in LMICs. Colleagues in Monza and at INT have been leaders in such programmes for decades. Cancer in AYAs remains a global challenge to which Gianni Bonadonna surely would have risen with enthusiasm and leadership while securing measurable achievements.

Queensland Youth Cancer Service: A Partnership Model to Facilitate Access to Quality Care for Young People Diagnosed with Cancer.

PubMed

Bradford, Natalie K; Henney, Roslyn; Walker, Rick; Walpole, Euan; Kennedy, Glen; Nicholls, Wayne; Pinkerton, Ross

2018-06-01

Global recognition of the need to improve outcomes for adolescents and young adults (AYA) with cancer has led to the development of specific oncology programs and services. In Australia, Youth Cancer Services (YCS) are now established across the country. While each service has been shaped by nationally agreed principles, program development has been influenced by local policy and geographic differences. Queensland is a vast state with a widely dispersed population; coordination of cancer services for young people across this landscape presents unique challenges. The Queensland YCS (QYCS) work in a consultative partnership model with primary treating teams, across both pediatric and adult tertiary cancer services. Understanding how cancer services approach challenges and service development can provide guidance for other developing services. In this article, we describe the goals and development of QYCS and review the outcomes achieved in the service to date. We reviewed referral data and retrieved statewide clinical activity from the web-based data system. We compared these data with cancer registry data to identify disparities and areas for service development. While the service has achieved notable outcomes, challenges remain. These include recruitment of appropriately skilled and trained health professionals for this newly developing area of oncology. In addition, there is an ongoing need to advocate for this relatively small patient group, and to promote awareness and understanding of the need for AYA-specific services. With the dispersed population and concentration of services in metropolitan Brisbane, identifying and testing new innovative models, including telehealth, to reach all AYA diagnosed with cancer regardless of location of care are priorities.

Diagnostic timeliness in adolescents and young adults with cancer: a cross-sectional analysis of the BRIGHTLIGHT cohort.

PubMed

Herbert, Annie; Lyratzopoulos, Georgios; Whelan, Jeremy; Taylor, Rachel M; Barber, Julie; Gibson, Faith; Fern, Lorna A

2018-03-01

Adolescents and young adults (AYAs) are thought to experience prolonged intervals to cancer diagnosis, but evidence quantifying this hypothesis and identifying high-risk patient subgroups is insufficient. We aimed to investigate diagnostic timeliness in a cohort of AYAs with incident cancers and to identify factors associated with variation in timeliness. We did a cross-sectional analysis of the BRIGHTLIGHT cohort, which included AYAs aged 12-24 years recruited within an average of 6 months from new primary cancer diagnosis from 96 National Health Service hospitals across England between July 1, 2012, and April 30, 2015. Participants completed structured, face-to-face interviews to provide information on their diagnostic experience (eg, month and year of symptom onset, number of consultations before referral to specialist care); demographic information was extracted from case report forms and date of diagnosis and cancer type from the national cancer registry. We analysed these data to assess patient interval (time from symptom onset to first presentation to a general practitioner [GP] or emergency department), the number of prereferral GP consultations, and the symptom onset-to-diagnosis interval (time from symptom onset to diagnosis) by patient characteristic and cancer site, and examined associations using multivariable regression models. Of 1114 participants recruited to the BRIGHTLIGHT cohort, 830 completed a face-to-face interview. Among participants with available information, 204 (27%) of 748 had a patient interval of more than a month and 242 (35%) of 701 consulting a general practitioner had three or more prereferral consultations. The median symptom onset-to-diagnosis interval was 62 days (IQR 29-153). Compared with male AYAs, female AYAs were more likely to have three or more consultations (adjusted odds ratio [OR] 1·6 [95% CI 1·1-2·3], p=0·0093) and longer median symptom onset-to-diagnosis intervals (adjusted median interval longer by 24 days [95

Cancer in adolescents and young adults in countries with limited resources.

PubMed

Magrath, Ian; Epelman, Sidnei

2013-08-01

Cancer in adolescents and young adults (AYA) represents a higher fraction of all cancer in countries that are still undergoing a demographic transition. Such countries tend to have much younger populations, and therefore unless they have a particularly low incidence of cancer in this age group, will have a higher burden of cancer (absolute number of cases with cancer) in AYA. Cancers in AYA are comprised of the tail end of the incidence curve of cancers that have their peak incidence, or occur almost exclusively in childhood, the beginning of the incidence curve of cancers that primarily affect the elderly, and a third set of cancers that have their peak incidence (or are at least common) in the AYA age group (e.g., testicular cancer, sarcomas, melanoma, thyroid cancer). Many, but not all, of these cancers require radiation or cancer surgery, but the poorest countries do not have a sufficient number of radiation therapy units and surgical oncologists, or indeed medical and pediatric oncologists, to deal with the burden of cancer they face. The AYA age group is particularly important, both with regard to their contribution to the economy now and in the future (the majority are in the "working" age-group defined as 15-64 years), as well as their important role in caring for their families. Moreover, some of these cancers are eminently curable with chemotherapy alone, and more could be cured by simply improving the efficiency of existing health services and providing education and training to both the public as well as oncologists and other specialists required for the care of AYA (although such individuals will not necessarily be exclusively concerned with this age group). Of particular importance is the detection and diagnosis of cancer patients at the earliest possible time in the course of their disease. Avoiding delays in initiating therapy, which are partly due to the poverty and lack of education of the public as well as to a failure on the part of primary

Empowerment in adolescents and young adults with cancer: Relationship with health-related quality of life.

PubMed

Kaal, Suzanne E J; Husson, Olga; van Duivenboden, Saskia; Jansen, Rosemarie; Manten-Horst, Eveliene; Servaes, Petra; Prins, Judith B; van den Berg, Sanne W; van der Graaf, Winette T A

2017-10-15

The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health-related quality of life (HRQOL) among AYA patients with cancer. Patients aged 18 to 35 years at time of cancer diagnosis and who were seen by 1 of the members of the specialized multidisciplinary AYA team of the Radboud University Medical Center were invited to complete questionnaires regarding empowerment; HRQOL; and sociodemographic, clinical, and psychological characteristics (autonomy, coping, unmet social support needs, and psychological distress). A total of 83 AYA patients completed the questionnaires. The mean age of the participants at the time of diagnosis was 27.5 years. The vast majority had been treated with chemotherapy (86%), had a more advanced stage of disease, and had completed treatment at the time of participation (74%). The mean empowerment level was 154.1 (standard deviation, 17.8) with a range of 114 to 200. Multivariate analysis demonstrated that the autonomy subscales of self-awareness (β = .35), capacity for managing new situations (β = .19), and social support (β = .35) were found to be positively associated with empowerment. Coping difficulties (β = -.19) were found to be negatively associated with empowerment. Empowerment was independently associated with physical (β = .31), psychological (β = .50), social (β = .39), religious (β = .33), and total HRQOL (β = .52; all P<.01). Low levels of empowerment were associated with low levels of autonomy and social support, female sex, and coping difficulties among AYA patients with cancer. Recognizing these patients as candidates for empowerment interventions ultimately could help to improve HRQOL in late adolescence and young adulthood. Cancer 2017

Initial evaluation of an electronic symptom diary for adolescents with cancer.

PubMed

Baggott, Christina; Gibson, Faith; Coll, Beatriz; Kletter, Richard; Zeltzer, Paul; Miaskowski, Christine

2012-12-11

The delivery of optimal care depends on accurate communication between patients and clinicians regarding untoward symptoms. Documentation of patients' symptoms necessitates reliance on memory, which is often imprecise. We developed an electronic diary (eDiary) for adolescents and young adults (AYAs) with cancer to record symptoms. The purpose of this paper is to describe the utility of an eDiary designed for AYAs with cancer, including dependability of the mobile application, the reasons for any missing recorded data, patients' adherence rates to daily symptom queries, and patients' perceptions of the usefulness and acceptability of symptom data collection via mobile phones. Our team developed an electronic symptom diary based on interviews conducted with AYAs with cancer and their clinicians. This diary included daily severity ratings of pain, nausea, vomiting, fatigue, and sleep. The occurrence of other selected physical sequelae was assessed daily. Additionally, patients selected descriptors of their mood. A 3-week trial of the eDiary was conducted with 10 AYA cancer patients. Mobile phones with service plans were loaned to patients who were instructed to report their symptoms daily. Patients completed a brief questionnaire and were interviewed to elicit their perceptions of the eDiary and any technical difficulties encountered. Overall adherence to daily symptom reports exceeded 90%. Young people experienced few technical difficulties and reported benefit from daily symptom reports. Symptom occurrence rates were high and considerable inter- and intra-patient variability was noted in symptom and mood reports. We demonstrated the utility of an eDiary that may contribute insight into patients' symptom patterns to promote effective symptom management.

Impact of Cancer on Work and Education Among Adolescent and Young Adult Cancer Survivors

PubMed Central

Parsons, Helen M.; Harlan, Linda C.; Lynch, Charles F.; Hamilton, Ann S.; Wu, Xiao-Cheng; Kato, Ikuko; Schwartz, Stephen M.; Smith, Ashley W.; Keel, Gretchen; Keegan, Theresa H.M.

2012-01-01

Purpose To examine the impact of cancer on work and education in a sample of adolescent and young adult (AYA) patients with cancer. Patients and Methods By using the Adolescent and Young Adult Health Outcomes and Patient Experience Study (AYA HOPE)—a cohort of 463 recently diagnosed patients age 15 to 39 years with germ cell cancer, Hodgkin's lymphoma, non-Hodgkin's lymphoma, sarcoma, and acute lymphocytic leukemia from participating Surveillance, Epidemiology, and End Results (SEER) cancer registries—we evaluated factors associated with return to work/school after cancer diagnosis, a belief that cancer had a negative impact on plans for work/school, and reported problems with work/school after diagnosis by using descriptive statistics, χ2 tests, and multivariate logistic regression. Results More than 72% (282 of 388) of patients working or in school full-time before diagnosis had returned to full-time work or school 15 to 35 months postdiagnosis compared with 34% (14 of 41) of previously part-time workers/students, 7% (one of 14) of homemakers, and 25% (five of 20) of unemployed/disabled patients (P < .001). Among full-time workers/students before diagnosis, patients who were uninsured (odds ratio [OR], 0.21; 95% CI, 0.07 to 0.67; no insurance v employer-/school-sponsored insurance) or quit working directly after diagnosis (OR, 0.15; 95% CI, 0.06 to 0.37; quit v no change) were least likely to return. Very intensive cancer treatment and quitting work/school were associated with a belief that cancer negatively influenced plans for work/school. Finally, more than 50% of full-time workers/students reported problems with work/studies after diagnosis. Conclusion Although most AYA patients with cancer return to work after cancer, treatment intensity, not having insurance, and quitting work/school directly after diagnosis can influence work/educational outcomes. Future research should investigate underlying causes for these differences and best practices for

Nursing young people with cancer: What is "different" about it?

PubMed

Morgan, Sue; Soanes, Louise

2016-12-01

Nursing Adolescents and Young Adults (AYA) with cancer is a relatively new specialty, with much work having been undertaken across Europe. As this evolving specialty develops, nurses are required to develop networks, learn from each other and help to shape services across countries. Describing the cancer journey, this paper looks at the literature and, merging it with over 20years of experience, describes 'what is different' about looking after this group of young people. Looking at the specific issues about caring for AYA, including those issues that are pertinent in this age range: i.e. education/employment, fertility, body image, peers, family relationships, it discusses the development of specific services for this cohort of patients; one that is centred around the young person and their friends and families. Taking into account the need to develop multidisciplinary teams, it also highlights the needs of nurses who work in these teams, the education, skills and attributes needed to develop gold standard services for these challenging young people. The further development of nursing networks internationally is urged in order to share practice and expertise, nurture teams and bring the AYA with cancer into sharp focus. Copyright © 2016 Société Française du Cancer. All rights reserved.

A review of mobile applications to help adolescent and young adult cancer patients

PubMed Central

Wesley, Kimberly M; Fizur, Philip J

2015-01-01

Objective To review research articles utilizing mobile applications with adolescent and young adult (AYA) cancer patients. Materials and methods We identified articles via online searches and reference lists (eg, PsycInfo, PubMed). Articles were reviewed by two study team members for target population, stated purpose, technological utilization, sample size, demographic characteristics, and outcome data. Strengths and weaknesses of each study were described. Results Of 19 identified manuscripts, six met full inclusion criteria for this review (four smartphone applications and two tablet applications). One additional article that included an application not specific to oncology but included AYA patients with cancer within the target sample was also reviewed. Uses of these applications included symptom tracking, pain management, monitoring of eating habits following bone marrow transplant, monitoring of mucositis, and improving medication management. Utility results from pilot studies are presented. Conclusion Mobile applications are growing in number and increasingly available to AYAs with and without chronic illness. These applications may prove useful in helping to support AYAs throughout their cancer treatment and beyond. However, few applications provide empirical data supporting their utility. Numerous strengths and benefits of these applications include increased accessibility to educational resources and self-management strategies, more frequent physical and emotional symptom tracking, and increased access to peer support. Despite these strengths, numerous limitations are identified, highlighting the need for future research in this area. PMID:26316835

Symptoms and Symptom Clusters Identified by Adolescents and Young Adults With Cancer Using a Symptom Heuristics App.

PubMed

Ameringer, Suzanne; Erickson, Jeanne M; Macpherson, Catherine Fiona; Stegenga, Kristin; Linder, Lauri A

2015-12-01

Adolescents and young adults (AYAs) with cancer experience multiple distressing symptoms during treatment. Because the typical approach to symptom assessment does not easily reflect the symptom experience of individuals, alternative approaches to enhancing communication between the patient and provider are needed. We developed an iPad-based application that uses a heuristic approach to explore AYAs' cancer symptom experiences. In this mixed-methods descriptive study, 72 AYAs (13-29 years old) with cancer receiving myelosuppressive chemotherapy used the Computerized Symptom Capture Tool (C-SCAT) to create images of the symptoms and symptom clusters they experienced from a list of 30 symptoms. They answered open-ended questions within the C-SCAT about the causes of their symptoms and symptom clusters. The images generated through the C-SCAT and accompanying free-text data were analyzed using descriptive, content, and visual analyses. Most participants (n = 70) reported multiple symptoms (M = 8.14). The most frequently reported symptoms were nausea (65.3%), feeling drowsy (55.6%), lack of appetite (55.6%), and lack of energy (55.6%). Forty-six grouped their symptoms into one or more clusters. The most common symptom cluster was nausea/eating problems/appetite problems. Nausea was most frequently named as the priority symptom in a cluster and as a cause of other symptoms. Although common threads were present in the symptoms experienced by AYAs, the graphic images revealed unique perspectives and a range of complexity of symptom relationships, clusters, and causes. Results highlight the need for a tailored approach to symptom management based on how the AYA with cancer perceives his or her symptom experience. © 2015 Wiley Periodicals, Inc.

Patient Navigation Preferences for Adolescent and Young Adult Cancer Services by Distance to Treatment Location.

PubMed

Warner, Echo L; Fowler, Brynn; Pannier, Samantha T; Salmon, Sara K; Fair, Douglas; Spraker-Perlman, Holly; Yancey, Jeffrey; Randall, R Lor; Kirchhoff, Anne C

2018-05-03

To describe how distance to treatment location influences patient navigation preferences for adolescent and young adult (AYA) cancer patients and survivors. This study is part of a statewide needs assessment to inform the development of an AYA cancer patient and survivor navigation program. Participants were recruited from outpatient oncology clinics in Utah. Eligible participants had been diagnosed with cancer between ages 15-39 and had completed at least 1 month of treatment. Participants completed a semi-structured interview on preferences for patient navigation. Summary statistics of demographic and cancer characteristics were generated. Thematic content analysis was used to describe navigation preferences among participants classified as distance (≥20 miles) and local (<20 miles), to explain differences in their needs based on distance from their treatment center. The top three patient navigation needs were general information, financial, and emotional support. More local patients were interested in patient navigation services (95.2%) compared to distance participants (77.8%). Fewer local (38.1%) than distance participants (61.1%) reported challenges getting to appointments, and distance patients needed specific financial support to support their travel (e.g., fuel, lodging). Both local and distance patients desired to connect with a navigator in person before using another form of communication and wanted to connect with a patient navigator at the time of initial diagnosis. Distance from treatment center is an important patient navigation consideration for AYA cancer patients and survivors. After initially connecting with AYAs in person, patient navigators can provide resources remotely to help reduce travel burden.

A Diversified Recruitment Approach Incorporating Social Media Leads to Research Participation Among Young Adult-Aged Female Cancer Survivors.

PubMed

Gorman, Jessica R; Roberts, Samantha C; Dominick, Sally A; Malcarne, Vanessa L; Dietz, Andrew C; Su, H Irene

2014-06-01

Purpose: Cancer survivors in their adolescent and young adult (AYA) years are an understudied population, possibly in part because of the high effort required to recruit them into research studies. The aim of this paper is to describe the specific recruitment strategies used in four studies recruiting AYA-aged female cancer survivors and to identify the highest yielding approaches. We also discuss challenges and recommendations. Methods: We recruited AYA-aged female cancer survivors for two studies conducted locally and two conducted nationally. Recruitment strategies included outreach and referral via: healthcare providers and clinics; social media and the internet; community and word of mouth; and a national fertility information hotline. We calculated the yield of each recruitment approach for the local and national studies by comparing the number that participated to the number of potential participants. Results: We recruited a total of 534 participants into four research studies. Seventy-one percent were diagnosed as young adults and 61% were within 3 years of their cancer diagnosis. The highest-yielding local recruitment strategy was healthcare provider and clinic referral. Nationally, social media and internet outreach yielded the highest rate of participation. Overall, internet-based recruitment resulted in the highest number and yield of participants. Conclusion: Our results suggest that outreach through social media and the internet are effective approaches to recruiting AYA-aged female cancer survivors. Forging collaborative relationships with survivor advocacy groups' members and healthcare providers also proved beneficial.

A Diversified Recruitment Approach Incorporating Social Media Leads to Research Participation Among Young Adult-Aged Female Cancer Survivors

PubMed Central

Gorman, Jessica R.; Roberts, Samantha C.; Dominick, Sally A.; Malcarne, Vanessa L.; Dietz, Andrew C.

2014-01-01

Purpose: Cancer survivors in their adolescent and young adult (AYA) years are an understudied population, possibly in part because of the high effort required to recruit them into research studies. The aim of this paper is to describe the specific recruitment strategies used in four studies recruiting AYA-aged female cancer survivors and to identify the highest yielding approaches. We also discuss challenges and recommendations. Methods: We recruited AYA-aged female cancer survivors for two studies conducted locally and two conducted nationally. Recruitment strategies included outreach and referral via: healthcare providers and clinics; social media and the internet; community and word of mouth; and a national fertility information hotline. We calculated the yield of each recruitment approach for the local and national studies by comparing the number that participated to the number of potential participants. Results: We recruited a total of 534 participants into four research studies. Seventy-one percent were diagnosed as young adults and 61% were within 3 years of their cancer diagnosis. The highest-yielding local recruitment strategy was healthcare provider and clinic referral. Nationally, social media and internet outreach yielded the highest rate of participation. Overall, internet-based recruitment resulted in the highest number and yield of participants. Conclusion: Our results suggest that outreach through social media and the internet are effective approaches to recruiting AYA-aged female cancer survivors. Forging collaborative relationships with survivor advocacy groups' members and healthcare providers also proved beneficial. PMID:24940529

The Benefits and Burdens of Cancer: A Prospective Longitudinal Cohort Study of Adolescents and Young Adults.

PubMed

Straehla, Joelle P; Barton, Krysta S; Yi-Frazier, Joyce P; Wharton, Claire; Baker, Kevin Scott; Bona, Kira; Wolfe, Joanne; Rosenberg, Abby R

2017-05-01

Adolescents and early young adults (AYAs) with cancer are at high risk for poor outcomes. Positive psychological responses such as benefit-finding may buffer the negative impacts of cancer but are poorly understood in this population. We aimed to prospectively describe the content and trajectory of benefit- and burden-finding among AYAs to develop potential targets for future intervention. One-on-one semistructured interviews were conducted with English-speaking AYA patients (aged 14-25 years) within 60 days of diagnosis of a noncentral nervous system malignancy requiring chemotherapy, 6-12 and 12-18 months later. Interviews were coded using directed content analyses with a priori schema defined by existing theoretical frameworks, including changed sense of self, relationships, philosophy of life, and physical well-being. We compared the content, raw counts, and ratios of benefit-to-burden by patient and by time point. Seventeen participants at one tertiary academic medical center (mean age 17.1 years, SD = 2.7) with sarcoma (n = 8), acute leukemia (n = 6), and lymphoma (n = 3) completed 44 interviews with >100 hours of transcript-data. Average benefit counts were higher than average burden counts at each time point; 68% of interviews had a benefit-to-burden ratio >1. Positive changed sense-of-self was the most common benefit across all time points (44% of all reported benefits); reports of physical distress were the most common burden (32%). Longitudinal analyses suggested perceptions evolved; participants tended to focus less on physical manifestations and more on personal strengths and life purpose. AYAs with cancer identify more benefits than burdens throughout cancer treatment and demonstrate rapid maturation of perspectives. These findings not only inform communication practices with AYAs but also suggest opportunities for interventions to potentially improve outcomes.

Empowerment in adolescents and young adults with cancer: Relationship with health‐related quality of life

PubMed Central

Kaal, Suzanne E.J.; Husson, Olga; van Duivenboden, Saskia; Jansen, Rosemarie; Manten‐Horst, Eveliene; Servaes, Petra; Prins, Judith B.; van den Berg, Sanne W.

2017-01-01

BACKGROUND The difficulties adolescents and young adults (AYAs) encounter during a cancer experience may result in a reduction in or absence of empowerment. The aims of the current study were to assess levels of empowerment and associated (demographic, clinical, or psychological) factors and examine the association between empowerment and health‐related quality of life (HRQOL) among AYA patients with cancer. METHODS Patients aged 18 to 35 years at time of cancer diagnosis and who were seen by 1 of the members of the specialized multidisciplinary AYA team of the Radboud University Medical Center were invited to complete questionnaires regarding empowerment; HRQOL; and sociodemographic, clinical, and psychological characteristics (autonomy, coping, unmet social support needs, and psychological distress). RESULTS A total of 83 AYA patients completed the questionnaires. The mean age of the participants at the time of diagnosis was 27.5 years. The vast majority had been treated with chemotherapy (86%), had a more advanced stage of disease, and had completed treatment at the time of participation (74%). The mean empowerment level was 154.1 (standard deviation, 17.8) with a range of 114 to 200. Multivariate analysis demonstrated that the autonomy subscales of self‐awareness (β = .35), capacity for managing new situations (β = .19), and social support (β = .35) were found to be positively associated with empowerment. Coping difficulties (β = ‐.19) were found to be negatively associated with empowerment. Empowerment was independently associated with physical (β = .31), psychological (β = .50), social (β = .39), religious (β = .33), and total HRQOL (β = .52; all P<.01). CONCLUSIONS Low levels of empowerment were associated with low levels of autonomy and social support, female sex, and coping difficulties among AYA patients with cancer. Recognizing these patients as candidates for empowerment interventions ultimately could help to improve HRQOL in late

Post-Traumatic Growth and Resilience in Adolescent and Young Adult Cancer Patients: An Overview.

PubMed

Greup, Suzanne R; Kaal, Suzanne E J; Jansen, Rosemarie; Manten-Horst, Eveliene; Thong, Melissa S Y; van der Graaf, Winette T A; Prins, Judith B; Husson, Olga

2018-02-01

The aim of this study was to provide an overview of the literature on post-traumatic growth (PTG) and resilience among adolescent and young adult (AYA) cancer patients. A literature search in Embase, PsychInfo, PubMed, Web of Science, Cochrane Library, and Cinahl was carried out. Thirteen articles met the pre-defined inclusion criteria. Qualitative interview studies showed that AYA cancer patients report PTG and resilience: PTG is described by AYA cancer patients in terms of benefit finding, including changing view of life and feeling stronger and more confident, whereas resilience is described as a balance of several factors, including stress and coping, goals, optimism, finding meaning, connection, and belonging. Quantitative studies showed that sociodemographic and clinical characteristics were not associated with PTG. Enduring stress was negatively, and social support positively, associated with PTG. Symptom distress and defensive coping were negatively and adaptive cognitive coping was positively associated with resilience. Both PTG and resilience were positively associated with satisfaction with life and health-related quality of life (HRQoL). Resilience was found to be a mediator in the relationship between symptom distress and HRQoL. Two interventions aiming to promote resilience, a stress management and a therapeutic music video-intervention, were not successful in significantly increasing overall resilience. Most AYA cancer patients report at least some PTG or resilience. Correlates of PTG and resilience, including symptom distress, stress, coping, social support, and physical activity, provide further insight to improve the effectiveness of interventions aimed at promoting these positive outcomes and potentially buffer negative outcomes.

Psychological morbidities in adolescent and young adult blood cancer patients during curative-intent therapy and early survivorship.

PubMed

Muffly, Lori S; Hlubocky, Fay J; Khan, Niloufer; Wroblewski, Kristen; Breitenbach, Katherine; Gomez, Joseline; McNeer, Jennifer L; Stock, Wendy; Daugherty, Christopher K

2016-03-15

Adolescents and young adults (AYAs) with cancer face unique psychosocial challenges. This pilot study was aimed at describing the prevalence of psychological morbidities among AYAs with hematologic malignancies during curative-intent therapy and early survivorship and at examining provider perceptions of psychological morbidities in their AYA patients. Patients aged 15 to 39 years with acute leukemia, non-Hodgkin lymphoma, or Hodgkin lymphoma who were undergoing curative-intent therapy (on-treatment group) or were in remission within 2 years of therapy completion (early survivors) underwent a semistructured interview that incorporated measures of anxiety, depression, and posttraumatic stress (PTS). A subset of providers (n = 15) concomitantly completed a survey for each of the first 30 patients enrolled that evaluated their perception of each subject's anxiety, depression, and PTS. Sixty-one of 77 eligible AYAs participated. The median age at diagnosis was 26 years (range, 15-39 years), 64% were male, and 59% were non-Hispanic white. On-treatment demographics differed significantly from early-survivor demographics only in the median time from diagnosis to interview. Among the 61 evaluable AYAs, 23% met the criteria for anxiety, 28% met the criteria for depression, and 13% met the criteria for PTS; 46% demonstrated PTS symptomatology. Thirty-nine percent were impaired in 1 or more psychological domains. Psychological impairments were as frequent among early survivors as AYAs on treatment. Provider perceptions did not significantly correlate with patient survey results. AYAs with hematologic malignancies experience substantial psychological morbidities while they are undergoing therapy and during early survivorship, with more than one-third of the patients included in this study meeting the criteria for anxiety, depression, or traumatic stress. This psychological burden may not be accurately identified by their oncology providers. © 2016 American Cancer Society.

Facing the Maze: Young Cancer Survivors' Return to Education and Work-A Professional Expert Key Informant Study.

PubMed

Pedersen, Kaspar Jessen; Boisen, Kirsten Arntz; Midtgaard, Julie; Elsbernd, Abbey; Larsen, Hanne Baekgaard

2018-03-13

An insufficient transition to normal life after cancer treatment in adolescent and young adults (AYAs) may lead to decreased occupational and educational opportunities throughout a survivor's lifespan. Key informant interviews were used to access unique knowledge of the healthcare, educational, and social systems. We used key informant interviews with professionals representing disciplines from healthcare, educational, and social systems (n = 15). Informants were recruited through purposive sampling and snowball sampling. Interviews were analyzed thematically using Malterud's Systematic Text Condensation and verified by member checking. We found four major themes: the impact of late effects, navigating the system, social reintegration, and the drive of youth. Although legal frameworks are often in place to assist AYA cancer survivors, navigating the public, educational, and social systems is a complex task and many AYAs do not have the required skill set or energy. Furthermore, AYA survivors often feel different from their peers and misunderstood by their surroundings, which may hinder reintegration into normal social life. In Scandinavia, healthcare and education are free of charge with equal access for all, primarily funded by government taxes. Therefore, insurance status and tuition fees should not constitute barriers for returning to education and work. However, this study finds that the public and educational systems are complex to navigate, and that AYAs face trouble mobilizing the energy to receive needed support.

Validation of a Health Literacy Measure for Adolescents and Young Adults Diagnosed with Cancer.

PubMed

McDonald, Fiona E J; Patterson, Pandora; Costa, Daniel S J; Shepherd, Heather L

2016-03-01

Health literacy can influence long-term health outcomes. This study aimed to validate an adapted version of the Functional, Communicative and Critical Health Literacy measure for adolescent and young adult (AYA) cancer patients and survivors (N = 105; age 12-24 years). Exploratory factor analysis was used to validate the measure, and indicated that a slightly modified item structure better fit the results. Furthermore, item response theory analysis highlighted location and discrimination parameter differences among items. Acceptability of the measure was high. This is the first validation of a health literacy measure among AYAs with an illness such as cancer.

Perceptions of and decision making about clinical trials in adolescent and young adults with Cancer: a qualitative analysis.

PubMed

Bell, Jennifer A H; Forcina, Victoria; Mitchell, Laura; Tam, Seline; Wang, Kate; Gupta, Abha A; Lewin, Jeremy

2018-06-04

Adolescent and young adults (AYA) enrolment rates into cancer clinical trials (CCT) are the lowest of any age group globally. As AYA have distinct biological, psychosocial and relational needs, we aimed to explore any unique factors influencing their CCT decision-making process, including AYA-specific perceptions or attitudes towards CCT. Qualitative interpretive descriptive methodology was used to explore AYA perceptions and decision-making related to CCT. An analytic approach conducive to inductive imagining and exploratory questioning was used in order to generate insights and interpret data. A total of 21 AYA were interviewed (median age: 31 (18-39)). Twelve (57%) participants had previously been approached to participate in CCT. Major themes influencing trial enrolment decisions were: 1) severity of illness/urgency for new treatment 2) side effect profile of investigational drug in the short and long term (e.g., impact on future quality of life) 3) who approached patient for trial participation (oncologist vs. other) 4) additional information found on-line about the trial and investigators, and 5) family, friends and peer group opinion regarding the CCT. Several psychosocial and relational factors were identified as influencing AYA CCT decisions, some of which are unique to this demographic. Specific strategies to address barriers to CCT and enable supportive decision-making include: 1) involving family in decision-making and 2) helping AYA appreciate short- and long-term implications of trial participation. Finally, exploring social networking and general education about CCT that AYA can independently access may increase participation.

Development of the functional social network index for adolescent and young adult cancer survivors.

PubMed

Huang, I-Chan; Jones, Conor M; Brinkman, Tara M; Hudson, Melissa M; Srivastava, D Kumar; Li, Yuelin; Robison, Leslie L; Krull, Kevin R

2018-05-15

To the authors' knowledge, social network status in adolescent and young adult (AYA) cancer survivors has not been adequately studied to date. The authors developed and validated a functional social network index (FSNI) for AYA survivors, and compared its performance with that of 2 traditional indices (density and betweenness centrality). A total of 102 AYA survivors and 102 noncancer controls who were matched for age, sex, and race were recruited from an Internet panel. Each participant reported relationships with up to 25 close friends and/or relatives. The authors developed a FSNI with reported marital status, contact frequency with friends/relatives, available resources for emotional and tangible support, and available resources for physical activity and weight management advice. Linear regression was used to analyze associations between the FSNI and cancer diagnoses, treatments, and coping skills. Based on the FSNI, survivors were found to have more available resources for emotional support (beta [b] = 3.02; P = .003), tangible support (b = 4.17; P<.001), physical activity advice (b = 3.94; P<.001), and weight management advice (b = 4.10; P<.001) compared with noncancer controls. Survivors of lymphoma had the largest FSNI, whereas survivors of central nervous system malignancies had the smallest (b = 2.77; P = .02). A higher FSNI was associated with better coping skills: less denial (b = 0.10; P = .01), using emotional support (b = 0.08; P = .04), using instrumental support (b = 0.12; P<.001), less behavioral disengagement (b = 0.08; P = .04), venting of emotions (b = 0.10; P = .004), positive reframing (b = 0.12; P = .003), planning for the future (b = 0.08; P = .03), and religious engagement (b = 0.16; P<.001). Density and betweenness centrality indices demonstrated neither significant differences in social networks between cancer survivors and controls (all P values >.05) nor significant associations with coping skills (all P values >.05). The FSNI appears

The relationship between unmet needs and distress amongst young people with cancer.

PubMed

Dyson, Gavin J; Thompson, Kate; Palmer, Susan; Thomas, David M; Schofield, Penelope

2012-01-01

Most psychosocial research in cancer has been restricted to paediatric or older adult populations. This study aimed to explore psychological distress and unmet needs in adolescents and young adults (AYA) with cancer and identify predictors of distress among demographic and illness characteristics and supportive care needs. Fifty-three patients between 16 and 30 years completed a cross-sectional survey, administered shortly after presentation to an AYA oncology service and within 4 months of diagnosis. Measures included the Beck Depression Inventory-Fast Screen (BDI-FS), State-Trait Anxiety Inventory-State Form (STAI-S) and the Supportive Care Needs Survey. Level of distress-related sypmtomatology in this population was based on previous work, whereby a cut-off score of 4 or greater was used for the BDI-FS, and one standard deviation above the sample population mean was used for the STAI-S. Prevalence of distress (25%) was lower than that found previously in AYA with cancer. Physical and daily living needs were the most frequently unmet needs overall, followed by psychological needs, health system and information needs and care and support needs. Lastly, being pre-treatment predicted increased depression and state anxiety, while having treatment post-surgery predicted reduced state anxiety. After controlling for treatment status, however, the main predictors of depression and state anxiety were physical and daily living needs and health system and information needs, respectively. Lower levels of distress and unmet psychological needs were related to the few participants (17%) in this study who were pre-treatment, when distress was most likely. However, physical needs and information needs, which are almost inevitable throughout treatment and beyond, were more important predictors of distress. Further exploration must consider the psychosocial difficulties underlying this association and the needs of AYA at transitions between critical periods in their cancer journey

Romantic and Sexual Relationships, Body Image, and Fertility in Adolescent and Young Adult Testicular Cancer Survivors: A Review of the Literature

PubMed Central

Carpentier, Melissa Y.; Fortenberry, J. Dennis

2010-01-01

This review presents a summary of existing knowledge regarding the impact of testicular cancer along four broad domains, including romantic and sexual relationships, body image, and fertility. A total of 37 studies were reviewed. Of note, most research consists of older adult testicular cancer survivors, with very little research attention afforded to adolescent and young adult (AYA) survivorship. Relationship status (i.e., partnered versus unpartnered) appears to play an important role as it relates to adjustment outcomes in testicular cancer survivors. In addition, sexual function (and thereby fertility) and body image are also frequently compromised. Implications regarding a lack of developmentally focused research on AYA testicular cancer survivorship are discussed, along with recommendations for new research. PMID:20638003

Measuring health-related beliefs of mothers of adolescent and young adult childhood cancer survivors.

PubMed

Doshi, Kinjal; Kazak, Anne E; Derosa, Branlyn Werba; Schwartz, Lisa A; Hobbie, Wendy; Ginsberg, Jill; Ittenbach, Richard F

2011-03-01

Childhood cancer has long-term implications for survivors and their family members. While the impact of cancer on the family continues into adulthood, little research exists on family related issues during this important developmental period. In order to advance our understanding of families of adolescent and young adult (AYA) childhood cancer survivors, a measure of health-related beliefs for parents of AYA cancer survivors was developed. Exploratory factor analysis based on the mothers' data was used to identify four factors among 23 items: Social Competence, Satisfaction with Healthcare, Health Perceptions, and Health Apprehension. The scales are associated with psychological distress, quality of life, and posttraumatic stress symptoms but unrelated to age of the child at diagnosis and cancer treatment intensity. The beliefs identified in this study are consistent with clinical observations of families of young adult survivors and provide indications for the importance of ongoing attention to the families of childhood cancer survivors. (c) 2011 APA, all rights reserved

Preferences for support services among adolescents and young adults with cancer or a blood disorder: a discrete choice experiment.

PubMed

Goodall, Stephen; King, Madeleine; Ewing, Jane; Smith, Narelle; Kenny, Patricia

2012-10-01

Life-threatening illnesses in young people are traumatic for patients and their families. Support services can help patients and families deal with various non-medical impacts of diagnosis, disease and treatment. The aim of this study was to determine which types of support are most valued by adolescents and young adults (AYA) with cancer or blood disorders and their families. A discrete choice experiment (DCE). Separate experiments were conducted with AYA and their carers. Completed surveys were returned by 83 patients and 78 carers. AYA preferred emotional support for themselves (either by counsellors and/or peers), emotional support for their family, financial support and assistance returning to school/work over services relating to cultural and spiritual needs. Covariate analysis indicated female AYA were more likely than males to prefer emotional support, while males were more likely to prefer assistance returning to work/school. Carers preferred emotional support for their AYA and assistance returning to school/work. Like AYA, they were indifferent about services relating to cultural and spiritual needs. Providing the types of support services that people prefer should maximise effectiveness. This study suggests that AYA patients require support services that included financial aid, assistance returning to work/study, emotional support for themselves and for their family. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.

Body Image Discomfort of Adolescent and Young Adult Hematologic Cancer Survivors.

PubMed

Zucchetti, Giulia; Bellini, Simona; Bertolotti, Marina; Bona, Francesca; Biasin, Eleonora; Bertorello, Nicoletta; Tirtei, Elisa; Fagioli, Franca

2017-06-01

This study focuses on body image discomfort (BID) of 50 adolescent and young adult (AYA) hematologic cancer survivors (age range 15-23; 52% males). The study results were obtained through data from a self-report questionnaire: the Body Uneasiness Test. Findings differed according to gender: a greater proportion of females were in the Risk category of impaired body image than males (χ 2  = 5.258, p < 0.05). No significant body image differences were found according to the type of diagnosis or to the length of survival. To manage survivors' BIDs and to improve their quality of life, assessing BID in AYA cancer survivors is important for identifying those who might be in need of additional supportive care or a program.

Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult.

PubMed

Bellizzi, Keith M; Smith, Ashley; Schmidt, Steven; Keegan, Theresa H M; Zebrack, Brad; Lynch, Charles F; Deapen, Dennis; Shnorhavorian, Margarett; Tompkins, Bradley J; Simon, Michael

2012-10-15

The objective of this study was to explore the psychosocial impact of cancer on newly diagnosed adolescent and young adult (AYA) cancer patients. This was a population-based, multicenter study of 523 newly diagnosed AYA survivors (ages 15-39 years) of germ cell cancer (n = 204), non-Hodgkin lymphoma (n = 131), Hodgkin lymphoma (n = 142), acute lymphocytic leukemia (n = 21), or sarcoma (n = 25) from 7 National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) registries. Age at diagnosis was categorized into 3 groups (ages 15-20 years, 21-29 years, and 30-39 years). Respondents (43% response rate), on average (±standard deviation), were aged 29 = 6.7 years, and most patients (80.1%) were not receiving treatment at the time the completed the survey. With modest differences between the age groups, the most prevalent areas of life impacted in a negative way were financial, body image, control over life, work plans, relationship with spouse/significant other, and plans for having children. Endorsement of positive life impact items also was evident across the 3 age groups, particularly with regard to relationships, future plans/goals, and health competence. The current results indicated that there will be future need for interventions targeting financial assistance, body image issues, relationships, and helping AYAs to attain their education objectives. Copyright © 2012 American Cancer Society.

Cancer in adolescents and young adults: Who remains at risk of poor social functioning over time?

PubMed

Husson, Olga; Zebrack, Bradley J; Aguilar, Christine; Hayes-Lattin, Brandon; Cole, Steve

2017-07-15

The objective of the current study was to examine social functioning among adolescents and young adults (AYAs) within the first 2 years after a cancer diagnosis and compare their scores with population norms and identify trajectories of social functioning over time and its correlates. A multicenter, longitudinal study was conducted among 215 AYA patients with cancer aged 14 to 39 years. A total of 141 patients completed a self-report measure of social functioning within the first 4 months of diagnosis and again at 12 months and 24 months later. AYA patients with cancer were found to have significantly worse social functioning scores around the time of diagnosis (52.0 vs 85.1; P<.001), at the 12-month follow-up (73.1 vs 85.1; P<.001), and at the 24-month follow-up (69.2 vs 85.1; P<.001) when compared with population norms. Significant improvements in social functioning from baseline to the 12-month follow-up were observed; however, social functioning levels remained stable thereafter. Among participants, 9% demonstrated consistently high/normal social functioning, 47% demonstrated improved social functioning, 13% were found to have worsening social functioning, and 32% demonstrated consistently low social functioning. AYA patients with cancer who had consistently low social functioning were more often off treatment at the time of follow-up, reported more physical symptoms and higher levels of distress at baseline and follow-up, and perceived less social support at baseline compared with the other 3 groups. Although improved over time, social functioning still was found to be compromised 24 months after the primary diagnosis. Nearly one-third of these patients remain at risk of poor social functioning. Reducing physical symptoms and psychological distress and enhancing social support by interventions during the period after treatment may potentially help these young survivors to better reintegrate into society. Cancer 2017;123:2743-51. © 2017 American Cancer Society

"Perhaps I will die young." Fears and worries regarding disease and death among Danish adolescents and young adults with cancer. A mixed method study.

PubMed

Hølge-Hazelton, Bibi; Timm, Helle U; Graugaard, Christian; Boisen, Kirsten A; Sperling, Cecilie Dyg

2016-11-01

A cross-sectional national study was initiated in order to evaluate healthcare services and survivorship from the perspective of Danish adolescents and young adults (AYAs) with cancer. The purpose of the paper was to examine (Q1) to what extend Danish AYAs experienced fears and worries about dying; (Q2) with whom, if anyone, they had shared those worries; and finally, (Q3) how fears and worries influenced their daily life. The emphasis will be on Q3. A 151-item questionnaire (including two closed- and one open-ended questions about fears of death and dying) was distributed among all 15-29-year-old Danes registered with a cancer diagnosis from 2009 to 2013. A total study population of 822 persons participated. Data was analyzed using a mixed design of descriptive statistics and qualitative content analysis. Q1: Almost 80 % of AYAs with cancer expressed some worries about death; hereof, more than half of them expressed quite a bit or very much. The analysis showed significant gender differences, whereas age and duration of disease did not have any significant impact on such thoughts. Q2: One third had not talked to anybody about his or her worries. Q3: The analysis resulted in three overall categories: fear of disease and death having little or no influence (n = 100), fear influencing in various ways (n = 215), and fear of disease and death having a substantial influence (n = 75). The majority of AYAs had experienced fears and worries about dying, but one third of them had not talked to anybody about those thoughts. It is an important clinical point that young age does not preclude fears and worries about dying in AYAs with cancer.

[Which approach of therapeutic education (TE) for adolescents and young adults with cancer? Experience from the TE working group of "Go-AJA"].

PubMed

Corradini, Nadège; Dagorne, Loïc; Retailleau, Marielle; Rédini, Françoise; Sudour-Bonnange, Hélène; Gofti-Laroche, Leila; Le Rhun, Anne; Gaspar, Nathalie

2016-12-01

Therapeutic education (TE) is a practice developed over 40 years at an international level to give people with chronic illness the skills necessary to help them better manage their disease. The lengthening survival time of cancer patients as well as changes in the patient-caregiver relationship have contributed to the development of TE in oncologic diseases. Every year in France, about 1900 adolescents and young adults (15-25 years old) are diagnosed with cancer which is the second leading cause of death in this age group. The observed survival rates for these patients are lower when compared with children's. Some of the hypotheses put forward to explain this difference include a lack of constancy in care and a non-following treatment, as failure to adhere to therapies is common in this age group. "Go-AJA", an interdisciplinary national organization established in 2012, aims to improve the quality of care and treatment results for AYA living with cancer. Therapeutic education for AYA in oncology is an active working group of "Go-AJA" and intends to draw recommendations and to improve adapted communication on different education topics. Elaboration and preparation of TE programs by skilled multidisciplinary teams engaged in interactive educational actions is the first and most crucial step. The TE "Go-AJA" working group has federated pediatric and adult oncologists, nurses, psychologists, TE professionals, and resource patients, thanks to the commitment of professionals from the 8 national teams supported by the National Cancer Institute. Physical meetings and conference calls were organized from 2012 to 2015 to construct TE tools and programs for AYA with cancer. A competence referential was built and adapted to AYA population with cancer, after focused groups organized in 2 main oncology centers with on-therapy sarcoma patients and members of the multidisciplinary TE working group. Tools were validated and adapted to adolescents or young adults with cancer, to

Parental perspectives on a behavioral health music intervention for adolescent/young adult resilience during cancer treatment: report from the children's oncology group.

PubMed

Docherty, Sharron L; Robb, Sheri L; Phillips-Salimi, Celeste; Cherven, Brooke; Stegenga, Kristin; Hendricks-Ferguson, Verna; Roll, Lona; Donovan Stickler, Molly; Haase, Joan

2013-02-01

This article describes parental perspectives on the helpfulness and meaningfulness of a behavioral health music therapy intervention targeted to adolescents/young adults (AYA) with cancer undergoing stem cell transplantation. We demonstrate how qualitative methods may be used to understand critical aspects of an intervention and mechanisms by which the intervention impacts the target AYA outcomes of resilience and quality of life. A qualitative descriptive design was used to obtain parents' perspectives. A maximum-variation purposive sampling technique was used to sample 16 parents whose AYA had been randomized to the intervention group. A semistructured open-ended interview was conducted between 100 and 160 days after the AYA's transplant. Results were grouped into three categories: (1) helpfulness and meaningfulness of the intervention to AYA adjustment to the transplantation experience; (2) helpfulness and meaningfulness of the intervention for parents; and (3) AYA ability to participate in the intervention during the acute phase of transplant. Parents observed and interacted with their AYA who participated in a targeted behavioral intervention. Thus, parents were able to describe mechanisms through which the intervention was helpful and meaningful for the AYA and indirect personal benefits for themselves. The results suggest the importance of the targeted outcomes identified in the Resilience in Illness Model and mechanisms of action in the Contextual Support Model of Music Therapy, and identify approaches for future study. Copyright © 2013 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Clinical trial enrollment of adolescents and young adults with sarcoma.

PubMed

Davis, Lara E; Janeway, Katherine A; Weiss, Aaron R; Chen, Yen-Lin E; Scharschmidt, Thomas J; Krailo, Mark; Glade Bender, Julia L; Kopp, Lisa M; Patel, Shreyaskumar R; Schwartz, Gary K; Horvath, L Elise; Hawkins, Douglas S; Chuk, Meredith K; Reinke, Denise K; Gorlick, Richard G; Randall, R Lor

2017-09-15

More than half of all sarcomas occur in adolescents and young adults (AYAs) aged 15 to 39 years. After the publication of the AYA series in the April 1, 2016 issue of Cancer, several leaders in the field of sarcoma across disciplines gathered to discuss the status of sarcoma clinical research in AYAs. They determined that a focused effort to include the underrepresented and understudied AYA population in current and future sarcoma clinical trials is overdue. Trial enrichment for AYA-aged sarcoma patients will produce more meaningful results that better represent the disease's biology, epidemiology, and treatment environment. To address the current deficit, this commentary outlines changes believed to be necessary to expediently achieve an increase in the enrollment of AYAs in sarcoma clinical trials. Cancer 2017;123:3434-40. © 2017 American Cancer Society. © 2017 American Cancer Society.

Sexuality and romantic relationships in young adult cancer survivors: satisfaction and supportive care needs.

PubMed

Geue, Kristina; Schmidt, Ricarda; Sender, Annekathrin; Sauter, Siegfried; Friedrich, Michael

2015-11-01

In recent years, psycho-oncology has focused more and more on adolescents and young adults with cancer (AYA). Many studies have concentrated on fertility issues in AYAs, but romantic relationships and sexuality have only been researched to a limited extent. This cross-sectional study examined AYAs' quality of relationships and sexuality satisfaction thereby identifying sex differences. Ninety-nine cancer patients (N = 33 males) diagnosed between 15 and 39 years who were in a romantic relationship at the time of the survey completed questionnaires on their relationship (Partnership Questionnaire), sexuality (Life Satisfaction Questionnaire), and sexuality needs (Supportive Care Needs Survey). Test for mean differences and regression analyses to determine associated variables were performed. Seventy-six percent of AYAs (N = 75) rated their relationship quality as high. About 64% of patients reported having less sexual intercourse since diagnosis, more women than men (72% vs. 45%; p = .011). The need for support was strongest for changes in sexual feelings (N = 38; 38.3%). Duration of relationship (β = -0.224), being on sick leave (β = 0.325), and satisfaction with sexuality (β = 0.409) were associated with satisfaction with relationship (R(2)  = 0.256). Satisfaction with sexuality (R(2)  = 0.344) was regressed on physical function (β = 0.419), satisfaction with relationship (β = 0.428), and male gender (β = -0.175). Sexuality need (R(2)  = 0.436) was associated with fatigue (β = 0.232) and satisfaction with sexuality (β = -0.522). Although they reported high satisfaction with their relationships, AYA patients experienced sexual problems and need support with sexual issues. As a substantial proportion of patients felt stressed because of sexual changes, communication and interventions addressing post-cancer sexuality, particularly in women, are indicated. Copyright © 2015 John Wiley & Sons, Ltd.

Disparities in location of death of adolescents and young adults with cancer: A longitudinal, population study in California.

PubMed

Rajeshuni, Nitya; Johnston, Emily E; Saynina, Olga; Sanders, Lee M; Chamberlain, Lisa J

2017-11-01

Patients with a terminal illness should have access to their chosen location of death. Cancer is the leading cause of non-accidental death among adolescents and young adults (AYAs; those aged 15-39 years). Although surveys have suggested that a majority of these patients prefer a home death, to the authors' knowledge, little is known regarding their barriers to accessing their preferred location of death. As a first step, the authors sought to determine, across a large population, 20-year trends in the location of death among AYA patients with cancer. Using the Vital Statistics Death Certificate Database of the California Office of Statewide Health Planning and Development, the authors performed a retrospective, population-based analysis of California patients with cancer aged 15 to 39 years who died between 1989 and 2011. Sociodemographic and clinical factors associated with hospital death were examined using multivariable logistic regression. Of 30,573 AYA oncology decedents, 57% died in a hospital, 33% died at home, and 10% died in other locations (eg, hospice facility or nursing facility). Between 1989 and 1994, hospital death rates decreased from 68.3% to 53.6% and at-home death rates increased from 16.8% to 35.5%. Between 1995 and 2011, these rates were stable. Those individuals who were more likely to die in a hospital were those aged <30 years, of minority race, of Hispanic ethnicity, who lived ≤10 miles from a specialty center, and who had a diagnosis of leukemia or lymphoma. Overall, the majority of AYA cancer deaths occurred in a hospital, with a 5-year shift to more in-home deaths that abated after 1995. In-hospital deaths were more common among younger patients, patients of minority race/ethnicities, and those with a leukemia or lymphoma diagnosis. Further study is needed to determine whether these rates and disparities are consistent with patient preferences. Cancer 2017;123:4178-4184. © 2017 American Cancer Society. © 2017 American Cancer Society.

Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls.

PubMed

Kazak, Anne E; Derosa, Branlyn Werba; Schwartz, Lisa A; Hobbie, Wendy; Carlson, Claire; Ittenbach, Richard F; Mao, Jun J; Ginsberg, Jill P

2010-04-20

PURPOSE The purpose of this study was to compare adolescent and young adult (AYA) pediatric cancer survivors and peers without a history of serious illness on psychological distress, health-related quality of life (HRQOL), health beliefs; examine age at diagnosis and cancer treatment intensity on these outcomes; and examine relationships between number of health problems and the outcomes. PATIENTS AND METHODS AYA cancer survivors (n = 167) and controls (n = 170), recruited during visits to a cancer survivorship clinic and primary care, completed self-report questionnaires of distress, health problems, and health beliefs. For survivors, providers rated treatment intensity and health problems. Results There were no statistically significant differences between survivors and controls in psychological distress or HRQOL. Cancer survivors had less positive health beliefs. Survivors diagnosed as adolescents had significantly greater psychological distress and fewer positive health beliefs than those diagnosed earlier. Survivors with the highest level of treatment intensity had greater anxiety and fewer positive health beliefs than those with less intense treatments. Provider report of current health problems related to survivors' beliefs and mental HRQOL only, whereas patient report of health problems correlated significantly with most psychosocial outcomes and beliefs. CONCLUSION AYA cancer survivors did not differ from peers in psychological adjustment but did endorse less adaptive health beliefs. Survivors diagnosed during adolescence and who had more intensive cancer treatments evidenced poorer psychosocial outcomes. Beliefs about health may be identified and targeted for intervention to improve quality of life, particularly when patient perceptions of current health problems are considered.

Parental Perspectives on a Behavioral Health Music Intervention for Adolescent/Young Adult Resilience during Cancer Treatment: Report from the Children’s Oncology Group

PubMed Central

Docherty, Sharron L.; Robb, Sheri L.; Phillips-Salimi, Celeste; Cherven, Brooke; Stegenga, Kristin; Hendricks-Ferguson, Verna; Roll, Lona; Stickler, Molly Donovan; Haase, Joan

2012-01-01

Purpose This paper describes parental perspectives on the helpfulness and meaningfulness of a behavioral health music therapy intervention targeted to adolescents/young adults (AYA) with cancer undergoing stem cell transplantation. We demonstrate how qualitative methods may be used to understand critical aspects of an intervention and mechanisms by which the intervention impacts the target AYA outcomes resilience and quality of life. Methods A qualitative descriptive design was used to obtain parents’ perspectives. Maximum variation purposive sampling was used to sample 16 parents whose AYA had been randomized to the intervention group. A semi-structured, open-ended interview was conducted between 100 and 160 days following their AYA’s transplant. Results Results are grouped into three categories: (1) helpfulness and meaningfulness of the intervention to AYA adjustment to the transplantation experience; (2) helpfulness and meaningfulness of the intervention for parents; and (3) AYA ability to participate in the intervention during acute phase of transplantation. Conclusions Parents observed and interacted with their AYA who participated in a targeted, behavioral intervention. Thus parents were able to describe mechanisms through which the intervention was helpful and meaningful for the AYA and indirect personal benefits for themselves. The results suggest the importance of the targeted outcomes identified in the Resilience in Illness Model and mechanisms of action in the Contextual Support Model of Music Therapy and identifies approaches for future study. PMID:23332481

Complete prevalence of malignant primary brain tumors registry data in the United States compared with other common cancers, 2010

PubMed Central

Zhang, Adah S.; Ostrom, Quinn T.; Kruchko, Carol; Rogers, Lisa; Peereboom, David M.

2017-01-01

Abstract Background. Complete prevalence proportions illustrate the burden of disease in a population. This study estimates the 2010 complete prevalence of malignant primary brain tumors overall and by Central Brain Tumor Registry of the United States (CBTRUS) histology groups, and compares the brain tumor prevalence estimates to the complete prevalence of other common cancers as determined by the Surveillance, Epidemiology, and End Results Program (SEER) by age at prevalence (2010): children (0–14 y), adolescent and young adult (AYA) (15–39 y), and adult (40+ y). Methods. Complete prevalence proportions were estimated using a novel regression method extended from the Completeness Index Method, which combines survival and incidence data from multiple sources. In this study, two datasets, CBTRUS and SEER, were used to calculate complete prevalence estimates of interest. Results. Complete prevalence for malignant primary brain tumors was 47.59/100000 population (22.31, 48.49, and 57.75/100000 for child, AYA, and adult populations). The most prevalent cancers by age were childhood leukemia (36.65/100000), AYA melanoma of the skin (66.21/100000), and adult female breast (1949.00/100000). The most prevalent CBTRUS histologies in children and AYA were pilocytic astrocytoma (6.82/100000, 5.92/100000), and glioblastoma (12.76/100000) in adults. Conclusions. The relative impact of malignant primary brain tumors is higher among children than any other age group; it emerges as the second most prevalent cancer among children. Complete prevalence estimates for primary malignant brain tumors fills a gap in overall cancer knowledge, which provides critical information toward public health and health care planning, including treatment, decision making, funding, and advocacy programs. PMID:28039365

Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult–Aged Cancer Patients and Survivors

PubMed Central

Fernandez, Conrad; Fraser, Graeme A.M.; Freeman, Carolyn; Grunfeld, Eva; Gupta, Abha; Mery, Leslie Stephen; De Pauw, Sonja

2011-01-01

Adolescents and young adults (AYA) with cancer and survivors of cancer in childhood, adolescence, and young adulthood are a constituency facing disparities of care affecting quality of life and other outcomes in many parts of the world. In Canada, this situation occurs in a nation with population-based cancer control programs and a government-funded healthcare system. The Canadian Task Force on Adolescents and Young Adults with Cancer was established in 2008 with a mission to ensure that AYA-aged Canadians with cancer and AYA survivors of cancer have prompt, equitable access to the best care, and to establish and support research to identify how their health outcomes and quality of life can be optimized. Following a survey of existing services, and in consultation with survivors, healthcare professionals, and policy makers, the Task Force identified principles of care, priority issues for research and the establishment of outcome metrics, and strategies for implementing change that are designed to improve the outcomes and quality of life of this specific cohort of patients and survivors with unique developmental needs. The six broad recommendations highlight the need for age-appropriate psychosocial, survivorship, palliative, and medical care as well as research to redress inequities in the care provided to this group relative to both younger and older cancer patients. Improved care for this group will enable individuals to reach their full potential as productive, functioning members of society, and will provide economic and other societal benefits. PMID:23610731

Cardiovascular disease incidence in adolescent and young adult cancer survivors: a retrospective cohort study.

PubMed

Keegan, Theresa H M; Kushi, Lawrence H; Li, Qian; Brunson, Ann; Chawla, X; Chew, Helen K; Malogolowkin, Marcio; Wun, Ted

2018-06-01

Few population-based studies have focused on cardiovascular disease (CVD) risk in adolescent and young adult (AYA; 15-39 years) cancer survivors and none have considered whether CVD risk differs by sociodemographic factors. Analyses focused on 79,176 AYA patients diagnosed with 14 first primary cancers in 1996-2012 and surviving > 2 years after diagnosis with follow-up through 2014. Data were obtained from the California Cancer Registry and State hospital discharge data. CVD included coronary artery disease, heart failure, and stroke. The cumulative incidence of developing CVD accounted for the competing risk of death. Multivariable Cox proportional hazards regression evaluated factors associated with CVD and the impact of CVD on mortality. Overall, 2249 (2.8%) patients developed CVD. Survivors of central nervous system cancer (7.3%), acute lymphoid leukemia (6.9%), acute myeloid leukemia (6.8%), and non-Hodgkin lymphoma (4.1%) had the highest 10-year CVD incidence. In multivariable models, African-Americans (hazard ratio (HR) = 1.55, 95% confidence interval (CI) = 1.33-1.81; versus non-Hispanic Whites), those with public/no health insurance (HR = 1.78, 95% CI = 1.61-1.96; versus private) and those who resided in lower socioeconomic status neighborhoods had a higher CVD risk. These sociodemographic differences in CVD incidence were apparent across most cancer sites. The risk of death was increased by eightfold or higher among AYAs who developed CVD. While cancer therapies are known to increase the risk of CVD, this study additionally shows that CVD risk varies by sociodemographic factors. The identification and mitigation of CVD risk factors in these subgroups may improve long-term patient outcomes.

Determining research priorities for young people with haematological cancer: a value-weighting approach.

PubMed

Clinton-McHarg, Tara; Paul, Christine; Sanson-Fisher, Rob; D'Este, Catherine; Williamson, Anna

2010-12-01

Haematological malignancies account for a third of all cancers affecting adolescents and young adults (AYAs). Funding agencies are regularly faced with the dilemma of how to deploy resources in order to provide the greatest possible benefit to this patient group. This study used a value-weighting approach to quantify the stakeholders' perceptions about how resources should be allocated to best improve outcomes for AYA patients and their families. One hundred and fifty seven participants (112 health care providers, researchers and other professionals and 45 patients and carers) were invited to complete a web-based value-weighting questionnaire and indicate how they would allocate 100 units of funding among various research approaches, areas and populations. Eighty participants (51%) completed the questionnaire. Strategic research was allocated a significantly higher proportion of funding than investigator-driven research. For research areas, clinical medicine and psychosocial research were allocated the highest proportion of funding. Within research populations, AYAs who were newly diagnosed, relapsed or finished treatment were allocated the largest proportion of funds. Psychosocial research which focussed on identifying risk and resilience, developing psychosocial measures, translating research into practice and improving the treatment centre was allocated funding slightly above other items, however the difference was not significant. To improve potential congruence between the views of stakeholders and funding agencies, research funding for AYA haematological cancer patients and their families could be targeted towards newly diagnosed patients and those who have relapsed. Research in the areas of clinical medicine and psychosocial care is perceived to be of utmost value. Copyright © 2010 Elsevier Ltd. All rights reserved.

Adolescents and Young Adults with Acute Lymphoblastic Leukemia and Acute Myeloid Leukemia: Impact of Care at Specialized Cancer Centers on Survival Outcome.

PubMed

Wolfson, Julie; Sun, Can-Lan; Wyatt, Laura; Stock, Wendy; Bhatia, Smita

2017-03-01

Background: Adolescents and young adults (AYA; 15-39 years) with acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML) experience inferior survival when compared with children. Impact of care at NCI-designated Comprehensive Cancer Centers (CCC) or Children's Oncology Group sites (COG) on survival disparities remains unstudied. Methods: Using the Los Angeles cancer registry, we identified 1,870 ALL or AML patients between 1 and 39 years at diagnosis. Cox regression analyses assessed risk of mortality; younger age + CCC/COG served as the referent group. Logistic regression was used to determine odds of care at CCC/COG, adjusting for variables above. Results: ALL outcome: AYAs at non-CCC/COG experienced inferior survival (15-21 years: HR = 1.9, P = 0.005; 22-29 years: HR = 2.6, P < 0.001; 30-39 years: HR = 3.0, P < 0.001). Outcome at CCC/COG was comparable between children and young AYAs (15-21 years: HR = 1.3, P = 0.3; 22-29 years: HR = 1.2, P = 0.2) but was inferior for 30- to 39-year-olds (HR = 3.4, P < 0.001). AML outcome: AYAs at non-CCC/COG experienced inferior outcome (15-21 years: HR = 1.8, P = 0.02; 22-39 years: HR = 1.4, P = 0.06). Outcome at CCC/COG was comparable between children and 15- to 21-year-olds (HR = 1.3, P = 0.4) but was inferior for 22- to 39-year-olds (HR = 1.7, P = 0.05). Access: 15- to 21-year-olds were less likely to use CCC/COG than children ( P < 0.001). In 22- to 39-year-olds, public/uninsured (ALL: P = 0.004; AML<0.001), African American/Hispanics (ALL: P = 0.03), and 30- to 39-year-olds (ALL: P = 0.03) were less likely to use CCC/COG. Conclusions: Poor survival in AYAs with ALL and AML is mitigated by care at CCC/COG. Barriers to CCC/COG care include public/uninsured, and African American/Hispanic race/ethnicity. Impact: Care at CCC/COG explains, in part, inferior outcomes in AYAs with ALL and AML. Key sociodemographic factors serve as barriers to care at specialized centers. Cancer Epidemiol Biomarkers Prev; 26(3); 312

[Does consumption of tobacco, alcohol, and cannabis in adolescents and young adults with cancer affect the use of analgesics during hospitalizations?].

PubMed

Bertrand, A; Boyle, H; Moreaux, J; Guillot, L; Chvetzoff, G; Charbonnel, J-F; Marec-Berard, P

2016-04-01

The specificities of adolescents and young adults (AYAs) aged 15-25 years with cancer are now well recognized. Dedicated care was initiated in 2012 in France under the leadership of the INCa (National Cancer Institute). Research on supportive care and particularly pain management are still rare. This study aimed to evaluate the consumption of toxic substances (tobacco, cannabis, alcohol) in AYAs with cancer as well as its progression during the month following the diagnosis and to analyze its influence on opioid analgesic prescriptions during treatment. This is a prospective study including all new patients aged 15-25 years in two centers between January and June 2013. Data on consumption of psychoactive substances were obtained during an individual interview with a questionnaire. National surveys were used to compare this cohort with the general population. Data on opioid treatments were collected from the computerized prescription software and computerized patient record. Thirty-seven AYAs were eligible and 30 were included; 67% of them were male and the median age was 18.7 years. The questionnaire on tobacco, alcohol, and cannabis consumption at diagnosis was well accepted. Consumption profiles were comparable to the general population. Changes in behavior were observed during the 1st month after diagnosis, with a decrease or cessation of consumption, particularly among young people. This study showed differences in the use and requirements for opioid analgesics during hospitalization according to these consumption data. Prevention and support for AYAs who are regular consumers of toxic substances must be organized during initial care in oncology. Copyright © 2016 Elsevier Masson SAS. All rights reserved.

Adoption of pediatric-inspired acute lymphoblastic leukemia regimens by adult oncologists treating adolescents and young adults: A population-based study.

PubMed

Muffly, Lori; Lichtensztajn, Daphne; Shiraz, Parveen; Abrahão, Renata; McNeer, Jennifer; Stock, Wendy; Keegan, Theresa; Gomez, Scarlett Lin

2017-01-01

Studies have demonstrated superior outcomes for adolescent and young adult (AYA) patients with acute lymphoblastic leukemia (ALL) who are treated using pediatric versus adult therapeutic regimens. To the best of our knowledge, whether adult oncologists in the United States have adopted this approach to ALL in AYA patients is currently unknown. The objective of the current study was to provide a population-based description of ALL treatment patterns in AYA individuals over the past decade. Data regarding AYA patients aged 15 to 39 years and diagnosed with ALL between 2004 and 2014 while living in the Greater Bay Area were obtained from the Greater Bay Area Cancer Registry (GBACR). Treating facilities were designated as pediatric or adult centers; induction treatment regimens were abstracted from registry text data fields. Of 304 patients diagnosed in the GBACR catchment region, complete treatment data were available for 229 (75%). The location of care was identified for 296 patients (97%) treated at 31 unique centers. Approximately 70% of AYA patients received induction therapy at an adult treatment center. All AYA patients who were treated at pediatric centers received pediatric ALL regimens. Among AYA patients treated by adult oncologists with complete treatment data, none received a pediatric regimen before 2008. Between 2008 and 2012, while the US Adult Intergroup C10403 pediatric-inspired ALL protocol was open to accrual, 31% of AYA patients treated by adult oncologists received pediatric regimens. This rate fell to 21% from 2013 through 2014. Adult facilities treating ≥ 2 AYA patients with ALL per year captured in the GBACR were more likely to administer pediatric regimens than lower volume centers (P = .03). As of 2014, only a minority of AYA patients with ALL received pediatric ALL regimens at adult cancer centers. Cancer 2017;122-130. © 2016 American Cancer Society. © 2016 American Cancer Society.

Patterns of care and outcomes in adolescent and young adult acute lymphoblastic leukemia: a population-based study.

PubMed

Muffly, Lori; Alvarez, Elysia; Lichtensztajn, Daphne; Abrahão, Renata; Gomez, Scarlett Lin; Keegan, Theresa

2018-04-24

Adolescents and young adults (AYAs, 15-39 years) with acute lymphoblastic leukemia (ALL) represent a heterogeneous population who receive care in pediatric or adult cancer settings. Using the California Cancer Registry, we describe AYA ALL patterns of care and outcomes over the past decade. Sociodemographics, treatment location, and front-line therapies administered to AYAs diagnosed with ALL between 2004 and 2014 were obtained. Cox regression models evaluated associations between ALL setting and regimen and overall survival (OS) and leukemia-specific survival (LSS) for the entire cohort, younger AYA (<25 years), and AYAs treated in the adult cancer setting only. Of 1473 cases, 67.7% were treated in an adult setting; of these, 24.8% received a pediatric ALL regimen and 40.7% were treated at a National Cancer Institute (NCI)-designated center. In multivariable analyses, front-line treatment in a pediatric (vs adult) setting (OS HR = 0.53, 95% confidence interval [CI], 0.37-0.76; LSS HR = 0.51, 95% CI, 0.35-0.74) and at an NCI/Children's Oncology Group (COG) center (OS HR = 0.80, 95% CI, 0.66-0.96; LSS HR = 0.80, 95% CI, 0.65-0.97) were associated with significantly superior survival. Results were similar when analyses were limited to younger AYAs. Outcomes for AYAs treated in an adult setting did not differ following front-line pediatric or adult ALL regimens. Our population-level findings demonstrate that two-thirds of AYAs with newly diagnosed ALL are treated in an adult cancer setting, with the majority receiving care in community settings. Given the potential survival benefits, front-line treatment of AYA ALL at pediatric and/or NCI/COG-designated cancer centers should be considered. © 2018 by The American Society of Hematology.

Dental Care for Survivors of Adolescent and Young Adult Cancer: Special Considerations

PubMed Central

Fair, Douglas; Wright, Jennifer; Kirchhoff, Anne C.

2016-01-01

Purpose: Oral health is important for quality of life, but may be undermanaged for survivors of cancer. We examine dental care use and barriers among long-term survivors of adolescent and young adult (AYA) cancer in comparison to individuals without a history of cancer. Methods: The 2008–2012 Medical Expenditure Panel Survey (MEPS) identified 1216 individuals diagnosed with cancer at AYA ages (15–39 years), who were at least 5 years from diagnosis. A comparison group was matched using age, sex, and other factors. We evaluated self-reported dental visits in the previous 12 months, and inability and delay in receiving necessary dental care among survivors and the comparison group. Furthermore, individual factors associated with dental care use were identified using multivariable logistic regressions. Results: Of survivors, 60.86% reported no dental visits in the previous year compared to 51.96% of the comparison individuals (p < 0.001). Survivors were more likely to report inability (10.71% vs. 6.29%, p = 0.001) and delay (8.12% vs. 4.45%, p = 0.001) in getting necessary dental care than the comparison group. Notably, survivors without dental insurance were more likely to report inability and delay. Female survivors were more likely to use dental care than males (odds ratio = 1.76, 95% confidence interval 1.15–2.71, p = 0.01). Hispanic survivors, those diagnosed at younger ages, and uninsured survivors were less likely to have at least one dental visit. Conclusion: Survivors of AYA cancer need timely surveillance to manage late effects, including dental complications. Yet, these survivors, particularly those who are uninsured, delay dental care more often than individuals from the general population. Survivor-specific interventions are needed to reduce dental care barriers. PMID:27028878

Advance Care Planning Discussions with Adolescent and Young Adult Cancer Patients Admitted to a Community Palliative Care Service: A Retrospective Case-Note Audit.

PubMed

Fletcher, Sophie; Hughes, Rachel; Pickstock, Sarah; Auret, Kirsten

2018-02-01

Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet, there is little Australian research data available to inform best practice for this group. The goal of this work is to inform future models of ACP discussions for AYA. Retrospective medical record audit of AYA patients and an adult comparison group, diagnosed with a malignancy and referred to a community hospice service, in Western Australia, in the period between January 1, 2012 and December 1, 2015. Information was collected regarding end-of-life care discussions, documentation of agreed plan of care, and care received. Twenty-seven AYA and 37 adult medical records were reviewed. Eighteen (66.7%) AYA patients died at home, compared with 19 (51.4%) adults (p = 0.028). Desire to pursue all available oncological therapies, including clinical trials, was documented for 14 (51.9%) AYA patients compared with 9 (24.3%) of the adult group (p = 0.02). Eleven AYA patients (40.7%) received chemotherapy during the last month of life compared with two (5.4%) adults (p = 0.001). The results indicate that end-of-life care preferences for this unique cohort may differ from those of the adult population and need to be captured and understood. An ACP document incorporating a discussion regarding goals of care, preferred location of care, preference for place of death, and consent to future intervention, including cardiopulmonary resuscitation and prompts for review, could assist in pursuing this objective.

Health-Related Quality of Life of Adolescent and Young Adult Patients With Cancer in the United States: The Adolescent and Young Adult Health Outcomes and Patient Experience Study

PubMed Central

Smith, Ashley Wilder; Bellizzi, Keith M.; Keegan, Theresa H.M.; Zebrack, Brad; Chen, Vivien W.; Neale, Anne Victoria; Hamilton, Ann S.; Shnorhavorian, Margarett; Lynch, Charles F.

2013-01-01

Purpose Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. Patients and Methods Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). Results Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. Conclusion Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this

Health-related quality of life of adolescent and young adult patients with cancer in the United States: the Adolescent and Young Adult Health Outcomes and Patient Experience study.

PubMed

Smith, Ashley Wilder; Bellizzi, Keith M; Keegan, Theresa H M; Zebrack, Brad; Chen, Vivien W; Neale, Anne Victoria; Hamilton, Ann S; Shnorhavorian, Margarett; Lynch, Charles F

2013-06-10

Adolescents and young adults (AYAs) diagnosed with cancer face numerous physical, psychosocial, and practical challenges. This article describes the health-related quality of life (HRQOL) and associated demographic and health-related characteristics of this developmentally diverse population. Data are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort of 523 AYA patients with cancer, ages 15 to 39 years at diagnosis from 2007 to 2009. Comparisons are made by age group and with general and healthy populations. Multiple linear regression models evaluated effects of demographic, disease, health care, and symptom variables on multiple domains of HRQOL using the Pediatric Quality of Life Inventory (PedsQL) and the Short-Form Health Survey 12 (SF-12). Overall, respondents reported significantly worse HRQOL across both physical and mental health scales than did general and healthy populations. The greatest deficits were in limitations to physical and emotional roles, physical and social functioning, and fatigue. Teenaged patients (ages 15 to 17 years) reported worse physical and work/school functioning than patients 18 to 25 years old. Regression models showed that HRQOL was worse for those in treatment, with current/recent symptoms, or lacking health insurance at any time since diagnosis. In addition, sarcoma patients, Hispanic patients, and those with high school or lower education reported worse physical health. Unmarried patients reported worse mental health. Results suggest that AYAs with cancer have major decrements in several physical and mental HRQOL domains. Vulnerable subgroups included Hispanic patients, those with less education, and those without health insurance. AYAs also experienced higher levels of fatigue that were influenced by current symptoms and treatment. Future research should explore ways to address poor functioning in this understudied group.

Promoting the Shared-Care Model for Adolescent and Young Adults With Cancer: Optimizing Referrals and Care Coordination With Primary Care Providers.

PubMed

Kinahan, Karen E; Kircher, Sheetal; Altman, Jessica; Rademaker, Alfred; Salsman, John M; Didwania, Aarati; O'Brien, Bridget; Patel, Alpa C; Sanford, Stacy D

2017-01-01

The "shared-care model" for patients with cancer involves care coordination between primary care providers (PCPs) and oncologists, with the goal of optimizing survivorship care. However, a high proportion of adolescent and young adult (AYA) cancer survivors do not have a PCP. Study objectives were to increase the percentage of AYAs with a PCP documented in the electronic medical record (EMR) via the use of a best practice advisory (BPA) or "stopgap" intervention; to increase communication between providers by the number of routed clinic notes; and to assess oncology providers' attitudes/beliefs about the model and intervention. Data were collected for the 6 months before implementation of the BPA to determine the percentage of AYAs with a PCP and the number of notes routed to providers (time point 1 [T1]). The same data were collected at time point 2 (T2) after the BPA had been implemented for 6 months. Oncology providers participated in an education video module and an online survey at T1 and a survey at T2. At T1, 47.1% of 756 AYAs had a documented PCP in the EMR. At T2, the percentage increased to 55.1% (P<.002). The number of routed notes did not change significantly from T1 to T2. Providers that completed the intervention survey agreed/strongly agreed that the shared-care model is a desirable model of care (T1 = 86%; T2 = 93%) and that a BPA is useful for facilitating PCP referrals (T1 = 76%; T2 = 39%). This BPA is feasible for increasing the percentage of AYAs with a PCP documented in the EMR and could potentially lead to increased PCP referral and communication among providers for the benefit of long-term survivorship care. Providers generally agree with the shared-care model; however, the BPA implementation requires modification. Copyright © 2017 by the National Comprehensive Cancer Network.

A Fitbit and Facebook mHealth intervention for promoting physical activity among adolescent and young adult childhood cancer survivors: A pilot study.

PubMed

Mendoza, Jason A; Baker, K Scott; Moreno, Megan A; Whitlock, Kathryn; Abbey-Lambertz, Mark; Waite, Alan; Colburn, Trina; Chow, Eric J

2017-12-01

Physical activity (PA) may be important for preventing chronic diseases for adolescent and young adult (AYA) childhood cancer survivors. Randomized controlled trials (RCTs) of PA interventions for AYA survivors are sparse, but necessary to determine effective programs for increasing PA among this population. Thus, we conducted a pilot RCT, testing the feasibility of a mobile health (mHealth) intervention to promote PA among AYA survivors. We recruited 14- to 18-year-olds who were ≥1-year post cancer therapy from Seattle Children's Hospital. The 10-week intervention consisted of a wearable PA-tracking device (Fitbit Flex) and a peer-based virtual support group (Facebook group). Research staff helped set step goals and awarded badges weekly. Controls received usual care. Baseline assessments occurred before randomization and follow-up assessments occurred during weeks 8-10 of the intervention period. Feasibility criteria are defined below. Qualitative interviews assessed acceptability. Exploratory outcomes included PA, quality of life, and motivation for PA. All feasibility criteria were met: we recruited 60 survivors, intervention participants wore the Fitbit on the majority (71.5%) of intervention days, and ≥90% of all participants completed questionnaires. Qualitative data confirmed intervention acceptability. Exploratory analyses found no significant adjusted group differences for change in moderate-to-vigorous PA (4.4 vs. 5.0 min/day; P = 0.92) or sedentary time (-4.5 vs. 1.0 min/day; P = 0.73), comparing intervention subjects to controls. Some modest differences were found for select subscales of quality of life and motivation for PA. This mHealth PA intervention was feasible and acceptable to AYA childhood cancer survivors and warrants a fully powered RCT. © 2017 Wiley Periodicals, Inc.

Exploring the Feasibility of Establishing a Retrospective Cohort of Survivors of Adolescent and Young Adult Cancer to Study Long-Term Health Outcomes in an Integrated Managed Care Environment

PubMed Central

Chiu, Vicki; Mueller, Lisa A.; Cooper, Robert

2013-01-01

Purpose To determine the feasibility of conducting survivorship research for long-term health outcomes with survivors of cancer diagnosed as an adolescent or young adult (AYA) and enrolled in Kaiser Permanente Southern California (KPSC), an integrated managed care organization. Methods Survivors diagnosed at ages 15–39 during 1990 and 2000 at KPSC were included. A 1:5 age-, gender-, and calendar-year-matched non-cancer KPSC comparison group was also identified. Date of cancer diagnosis was defined as the study baseline. KPSC insurance retention rate was calculated at 5 and 10 years post-baseline among survivors. Multivariable logistic regression was used to examine demographic and cancer characteristics associated with KPSC insurance retention at ≥5 years after baseline. Results A total of 6170 AYA cancer patients were identified: 4745 (77%) and 4471 (72%) survived at 5 and 10 years after diagnosis respectively. Of these survivors, 3654 (77%) and 2817 (63%) remained insured at KPSC at 5 and 10 years post-cancer diagnosis respectively. Those aged 20–29 years when diagnosed and those with stage 4 cancer were less likely to retain KPSC insurance than other survivors. For non-cancer comparison subjects, the KPSC insurance retention rate was lower: 66% at 5 years and 51% at 10 years post-baseline. Younger age, female gender, white race, and later calendar years of study baseline were associated with a lower likelihood of KPSC insurance retention. Conclusion These results demonstrate the feasibility and potential limitations of conducting survivorship research to characterize long-term health outcomes for survivors of AYA cancer in a large, integrated managed care organization. PMID:23781402

Impact of latency time on survival for adolescents and young adults with a second primary malignancy.

PubMed

Goldfarb, Melanie; Rosenberg, Aaron S; Li, Qian; Keegan, Theresa H M

2018-03-15

The adverse impact of second primary malignancies (SPMs) on survival is substantial for adolescents and young adults (AYAs; ie, those 15-39 years old). No studies have evaluated whether the latency time between the first malignancy (the primary malignancy [PM]) and the SPM affects cancer-specific survival (CSS). A multivariate Cox proportional hazards regression with Surveillance, Epidemiology, and End Results data for 13 regions from 1992 to 2008 was used to ascertain whether the latency time (1-5 vs ≥ 6 years) to the development of an SPM affected the CSS and overall survival with respect to either the PM or SPM for AYAs with common SPMs. The majority of 1515 AYAs with an SPM had their PM diagnosed between the ages of 26 and 39 years (74.2%) and an SPM diagnosed within 1 to 5 years (72.9%) of the PM's diagnosis. Overall, AYAs that developed an SPM 1 to 5 years after the diagnosis (vs ≥ 6 years) had an increased risk of death from cancer (hazard ratio [HR], 2.52; 95% confidence interval [CI], 1.92-3.29) as well as any cause (HR, 2.60; 95% CI, 2.04-3.32). Specifically, for AYAs with an SPM that was leukemia or a colorectal, breast, or central nervous system malignancy, a shorter latency time (1-5 years) from their PM diagnosis was associated with an overall significantly increased risk of death (2.6-fold) from either their PM or that particular SPM. However, latency did not appear to affect the CSS with respect to either the PM or SPM for AYA patients with a lymphoma or sarcoma SPM. Most AYAs who develop an SPM do so within 1 to 5 years of their primary cancer diagnosis, and they have an increased risk of death from cancer in comparison with AYAs with an SPM developing after longer survivorship intervals. Cancer 2018;124:1260-8. © 2017 American Cancer Society. © 2017 American Cancer Society.

Health promotion and psychological interventions for adolescent and young adult cancer survivors: A systematic literature review.

PubMed

Bradford, Natalie Katrina; Chan, Raymond Javan

2017-04-01

The effects of cancer and treatment have severe and long lasting negative impacts on quality of life. Adolescents and Young Adults (AYA) have high survival rates but may not reach their full life potential because of these consequences. This review aims to identify, appraise and synthesise the effects of health promotion and psychological interventions for AYA after cancer treatment. The review was undertaken using the preferred reporting items for systematic reviews and meta-analyses guidelines. Included studies were identified though a range of electronic databases through to May 2016. Studies were critically appraised using the Cochrane Risk of Bias tool. Seventeen studies, comprising a total of 2314 participants aged 13-39years were included in this review. Participants in 15 studies were survivors of childhood cancer, with only two studies specifically recruiting survivors of cancer diagnosed during young adulthood. Ten studies were randomised controlled trials (RCTs); the remaining seven were before and after studies. The quality of studies was variable across all appraised domains; risk of bias was evident in regards to recruitment, measures of exposure and outcomes, confounding factors, attrition and lost-to follow-up. Studies evaluated a range of health promotion and psychological interventions to improve health related and process outcomes. Eleven studies reported modest positive outcomes, with psychological and physical activity interventions achieving greater success compared to general health promotion interventions. This review highlights the lack of high-quality studies for optimising the health and well-being of AYA cancer survivors. No conclusive evidence favouring specific interventions were identified, although recommendations for future studies are made. Interventions delivered face-to-face and those that facilitate peer-to-peer support hold promise. Harnessing social media and technology to deliver interventions is likely to increase and these

Personality Traits and Health-Related Quality of Life Among Adolescent and Young Adult Cancer Patients: The Role of Psychological Distress.

PubMed

Husson, Olga; Zebrack, Bradley; Block, Rebecca; Embry, Leanne; Aguilar, Christine; Hayes-Lattin, Brandon; Cole, Steve

2017-06-01

Personality may affect the way adolescents and young adults (AYAs) with cancer report health-related quality of life (HRQoL). Patients aged 15-39 years (n = 165) completed a survey at 12-16 months postdiagnosis. The survey included questions on HRQoL (SF-36), distress Brief Symptom Inventory-18, and personality (NEO-Five-Factor Inventory). Personality traits were not associated with physical HRQoL. The personality trait neuroticism was negatively associated with mental HRQoL (β = -0.37; p < 0.001) and positively with psychological distress (β = 0.47; p < 0.001). Hierarchical regression and mediation analyses indicated that psychological distress fully mediated the association between neuroticism and mental HRQoL. Findings emphasize the importance of psychosocial intervention for distress in AYAs with cancer.

Development of a text messaging system to improve receipt of survivorship care in adolescent and young adult survivors of childhood cancer.

PubMed

Casillas, Jacqueline; Goyal, Anju; Bryman, Jason; Alquaddoomi, Faisal; Ganz, Patricia A; Lidington, Emma; Macadangdang, Joshua; Estrin, Deborah

2017-08-01

This study aimed to develop and examine the acceptability, feasibility, and usability of a text messaging, or Short Message Service (SMS), system for improving the receipt of survivorship care for adolescent and young adult (AYA) survivors of childhood cancer. Researchers developed and refined the text messaging system based on qualitative data from AYA survivors in an iterative three-stage process. In stage 1, a focus group (n = 4) addressed acceptability; in stage 2, key informant interviews (n = 10) following a 6-week trial addressed feasibility; and in stage 3, key informant interviews (n = 23) following a 6-week trial addressed usability. Qualitative data were analyzed using a constant comparative analytic approach exploring in-depth themes. The final system includes programmed reminders to schedule and attend late effect screening appointments, tailored suggestions for community resources for cancer survivors, and messages prompting participant feedback regarding the appointments and resources. Participants found the text messaging system an acceptable form of communication, the screening reminders and feedback prompts feasible for improving the receipt of survivorship care, and the tailored suggestions for community resources usable for connecting survivors to relevant services. Participants suggested supplementing survivorship care visits and forming AYA survivor social networks as future implementations for the text messaging system. The text messaging system may assist AYA survivors by coordinating late effect screening appointments, facilitating a partnership with the survivorship care team, and connecting survivors with relevant community resources. The text messaging system has the potential to improve the receipt of survivorship care.

Evaluating Questionnaires Used to Assess Self-Reported Physical Activity and Psychosocial Outcomes Among Survivors of Adolescent and Young Adult Cancer: A Cognitive Interview Study.

PubMed

Wurz, Amanda; Brunet, Jennifer

2017-09-01

Physical activity is increasingly being studied as a way to improve psychosocial outcomes (e.g., quality of life, self-efficacy, physical self-perceptions, self-esteem, body image, posttraumatic growth) among survivors of adolescent and young adult (AYA) cancer. Assessing levels of and associations between self-reported physical activity and psychosocial outcomes requires clear, appropriate, and relevant questionnaires. To explore how survivors of AYA cancer interpreted and responded to the following eight published questionnaires: Leisure Time Exercise Questionnaire, Exercise Self-Efficacy Scale, Physical Self-Description Questionnaire, Rosenberg Global Self-Esteem Scale, Multidimensional Body-Self Relations Questionnaire, Posttraumatic Growth Inventory, Functional Assessment of Cancer Therapy-General (FACT-G), RAND 36-Item Health Survey 1.0 (RAND-36), cognitive interviews were conducted with three men and four women age 18-36 years who were diagnosed with cancer at age 16-35 years. Initially, the first seven questionnaires listed above were assessed. Summaries of the interviews were prepared and compared across participants. Potential concerns were identified with the FACT-G; thus, a second interview was conducted with participants to explore the clarity, appropriateness, and relevance of the RAND-36. Concerns identified for the FACT-G related mostly to the lack of relevance of items pertaining to cancer-specific aspects of quality of life given that participants were posttreatment. No or few concerns related to comprehension and/or structure/logic were identified for the other questionnaires. In general, the questionnaires assessed were clear, appropriate, and relevant. Participants' feedback suggested they could be used to assess self-reported physical activity and varied psychosocial outcomes in studies with survivors of AYA cancer, either with or without slight modifications.

Adolescents and Young Adults with Acute Lymphoblastic Leukemia and Acute Myeloid Leukemia: Impact of Care at Specialized Cancer Centers on Survival Outcome

PubMed Central

Wolfson, Julie; Sun, Can-Lan; Wyatt, Laura; Stock, Wendy; Bhatia, Smita

2017-01-01

Background Adolescents and young adults (AYA: 15-39y) with acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML) experience inferior survival when compared to children. Impact of care at NCI-designated Comprehensive Cancer Centers (CCC; or Children's Oncology Group sites [COG]) on survival disparities remains unstudied. Methods Using the Los Angeles Cancer registry, we identified 1,870 ALL or AML patients between 1 and 39y at diagnosis. Cox regression analyses assessed risk of mortality; younger age+CCC/COG served as the referent group. Logistic regression was used to determine odds of care at CCC/COG, adjusting for variables above. Results ALL outcome: AYAs at non-CCC/COG experienced inferior survival (15-21y: HR=1.9, p=0.005; 22-29y: HR=2.6, p<0.001; 30-39y: HR=3.0, p<0.001). Outcome at CCC/COG was comparable between children and young AYAs (15-21y: HR=1.3, p=0.3; 22-29y: HR=1.2, p=0.2) but was inferior for 30-39yo (HR=3.4, p<0.001). AML outcome: AYAs at non-CCC/COG experienced inferior outcome (15-21y: HR=1.8, p=0.02; 22-39y: HR=1.4, p=0.06). Outcome at CCC/COG was comparable between children and 15-21yo (HR=1.3, p=0.4) but was inferior for 22-39yo (HR=1.7, p=0.05). Access: 15-21yo were less likely to use CCC/COG than children (p<0.001). In 22-39yo, public/uninsured (ALL: p=0.004; AML<0.001), African-American/Hispanics (ALL: p=0.03), and 30-39yo (ALL: p=0.03) were less likely to use CCC/COG. Conclusions Poor survival in AYAs with ALL and AML is mitigated by care at CCC/COG. Barriers to CCC/COG care include public/uninsured, and African-American/Hispanic race/ethnicity. Impact Care at CCC/COG explains, in part, inferior outcomes in AYAs with ALL and AML. Key sociodemographic factors serve as barriers to care at specialized centers. PMID:28209594

Correlates of self-efficacy for disease management in adolescent/young adult cancer survivors: A systematic review.

PubMed

Herts, Kate L; Khaled, Mona M; Stanton, Annette L

2017-03-01

The primary objective of this review was to summarize the literature regarding factors associated with self-efficacy for disease management (SEDM) in cross-sectional studies and the efficacy/effectiveness of psychosocial interventions that are designed to improve SEDM in adolescent and young adult (AYA) cancer survivors. The secondary aim was to assess the quality of included studies. We conducted a systematic review using PsycINFO and PubMed to identify studies for review. Eligible studies were conducted in AYA cancer survivors ages 15 to 39; included a measure of SEDM assessed as an outcome or in a cross-sectional analysis; and were published in a peer-reviewed, English-language journal. From the 2,910 records screened, 7 cross-sectional studies and 4 intervention studies met criteria for inclusion. Eleven of the 12 SEDM measures in the studies were author-constructed, limiting the ability to draw conclusions across studies. All cross-sectional studies met at least 21 of 26 relevant quality assessment criteria, and intervention studies met between 4 and 11 of 14 criteria. Cross-sectional findings indicate that SEDM is positively associated with health-promoting behaviors and inversely related to physical and mental health problems. The intervention studies demonstrated that behavioral and educational interventions have the potential to increase SEDM. Directions for research include the need for validated measures of SEDM for AYA cancer survivors, as well as interventions that target both the health care team's and the patient's role in promoting SEDM. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Using plain language skills to create an educational brochure about sperm banking for adolescent and young adult males with cancer.

PubMed

Nagel, Kim; Wizowski, Lindsay; Duckworth, JoAnn; Cassano, Jane; Hahn, Shirley Ann; Neal, Michael

2008-01-01

Writing in plain language makes it easier for patients to read, understand, and make informed decisions about sperm banking. Greater attention to the issue and properly designed educational brochures for use by nurses in oncology and reproductive health is of evident importance but of unknown impact. A multidisciplinary clinical team followed an evidence-based, patient-centered approach to develop "plain language" patient education materials about sperm banking for adolescent and young adult (AYA) males with cancer. A patient education booklet was produced and implemented as part of the planned patient education for AYA male oncology patients at McMaster Children's Hospital, Hamilton Health Sciences, in Hamilton, Ontario, Canada. The patient education booklet for use by health professionals as a teaching tool to facilitate discussion with AYA males has been produced with the hope that it will contribute to better informed decision making regarding sperm banking and increased use of this technology for fertility preservation.

Reproductive Health in the Adolescent and Young Adult Cancer Patient: An Innovative Training Program for Oncology Nurses

PubMed Central

Vadaparampil, Susan T.; Hutchins, Nicole M.; Quinn, Gwendolyn P.

2012-01-01

In 2008, approximately 69,200 AYAs were diagnosed with cancer, second only to heart disease for males in this age group. Despite recent guidelines from professional organizations and clinical research that AYA oncology patients want information about reproductive health topics and physician support for nurses to address these issues with patients, existing research finds few oncology nurses discuss this topic with patients due to barriers such as lack of training. This article describes an innovative eLearning training program, entitled Educating Nurses about Reproductive Issues in Cancer Healthcare (ENRICH). The threefold purpose of this article is to: (1) highlight major reproductive health concerns relevant to cancer patients, (2) describe the current status of reproductive health and oncology communication and the target audience for the training, and (3) present a systematic approach to curriculum development, including the content analysis and design stages as well as the utilization of feedback from a panel of experts. The resulting 10-week curriculum contains a broad-based approach to reproductive health communication aimed at creating individual- and practice-level change. PMID:23225072

"I'm Not a Spiritual Person." How Hope Might Facilitate Conversations About Spirituality Among Teens and Young Adults With Cancer.

PubMed

Barton, Krysta S; Tate, Tyler; Lau, Nancy; Taliesin, Karen B; Waldman, Elisha D; Rosenberg, Abby R

2018-06-01

Supporting patients' spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs. To 1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither and 2) identify language to support AYAs' spiritual needs in keeping with their self-identities. In this mixed-methods, prospective, longitudinal cohort study, AYAs (14-25 years old) with newly diagnosed cancer self-reported their "religiousness" and "spirituality." One-on-one, semistructured interviews were conducted at three time points (within 60 days of diagnosis, six to 12 months, and 12-18 months later) and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post hoc directed content analysis informed a framework for approaching religious/spiritual discussions. Seventeen AYAs (mean age 17.1 years, SD = 2.7, 47% male) participated in 44 interviews. Of n = 16 with concurrent survey responses, five (31%) self-identified as both "religious and spiritual," five (31%) as "spiritual, not religious," one (6%) as "religious, not spiritual," and five (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their preexisting beliefs. Regardless of self-identified "religiousness" or "spirituality," most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives. AYA self-identities evolve during the illness experience. When words such as "religion" and "spirituality" do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Pattern of hematological malignancies in adolescents and young adults in Bangladesh.

PubMed

Hasan, Md Mahbub; Raheem, Enayetur; Sultana, Tanvira Afroze; Hossain, Mohammad Sorowar

2017-12-01

The adolescent and young adult (AYA) age group (15-39 years) bears distinct characteristics in terms of cancer biology, long-term health and treatment-related complications and psychosocial aspects. The overall scenario of cancer including hematological malignancies (HMs) is largely unknown in Bangladesh, where a significant proportion of people (44% of total population) belong to AYA age group. This study aims to describe the patterns of HM among AYA in the context of Bangladesh METHODS: Two previously published datasets (on hematological malignancies and childhood and adolescent cancer) were merged to construct a comprehensive dataset focusing exclusively on HMs in AYA age group. Univariate descriptive statistics were calculated and bivariate association were tested using Pearson's Chi-square test. A total of 2144 diagnosed HM related cases over a period of 2007-2014 were analyzed. Acute myeloid leukemia (AML) was the most frequent HM (35.1%) in AYAs, which was followed by acute lymphoblastic leukemia (ALL) and chronic myeloid leukemia (CML) constituting 22.7% and 20.8%, respectively. Among lymphomas, Non-Hodgkin lymphoma (NHL) constituted 13.9% of all HMs while 4.6% was for Hodgkin's lymphoma (HL). This is the first attempt to provide a glimpse on the pattern and distribution of HMs among AYA in Bangladesh. Future studies are essential to get a better insight on the epidemiology, biology, potential risk factors and treatment outcomes for the AYA age group. Copyright © 2017 Elsevier Ltd. All rights reserved.

Towards an Ontology-driven Framework to Enable Development of Personalized mHealth Solutions for Cancer Survivors' Engagement in Healthy Living.

PubMed

Myneni, Sahiti; Amith, Muhammad; Geng, Yimin; Tao, Cui

2015-01-01

Adolescent and Young Adult (AYA) cancer survivors manage an array of health-related issues. Survivorship Care Plans (SCPs) have the potential to empower these young survivors by providing information regarding treatment summary, late-effects of cancer therapies, healthy lifestyle guidance, coping with work-life-health balance, and follow-up care. However, current mHealth infrastructure used to deliver SCPs has been limited in terms of flexibility, engagement, and reusability. The objective of this study is to develop an ontology-driven survivor engagement framework to facilitate rapid development of mobile apps that are targeted, extensible, and engaging. The major components include ontology models, patient engagement features, and behavioral intervention technologies. We apply the proposed framework to characterize individual building blocks ("survivor digilegos"), which form the basis for mHealth tools that address user needs across the cancer care continuum. Results indicate that the framework (a) allows identification of AYA survivorship components, (b) facilitates infusion of engagement elements, and (c) integrates behavior change constructs into the design architecture of survivorship applications. Implications for design of patient-engaging chronic disease management solutions are discussed.

Barriers and Facilitators of Healthy Diet and Exercise Among Adolescent and Young Adult Cancer Survivors: Implications for Behavioral Interventions.

PubMed

Wu, Yelena P; Yi, Jaehee; McClellan, Jessica; Kim, Jonghee; Tian, Tian; Grahmann, Bridget; Kirchhoff, Anne C; Holton, Avery; Wright, Jennifer

2015-12-01

This study uses qualitative methods to identify barriers to and facilitators of exercise and healthy eating among adolescent and young adult (AYA) cancer survivors (survivors currently aged 18-39 years and diagnosed with cancer anytime in their lives), as reported by survivors and their primary supporters. Survivors (M(age) = 27.6 years, SD = 6.6 years) had completed active cancer therapy. Survivors and supporters (i.e., nominated by survivors as someone who was a main source of support) attended separate focus group sessions (five survivor focus groups, five supporter focus groups) and were asked to complete a self-reported questionnaire assessing demographic and cancer history and engagement in exercise and healthy eating. In total, 25 survivors and 19 supporters participated. The three overarching themes identified were barriers to exercise and healthy eating (e.g., lack of resources, negative thoughts and feelings, negative social and environmental influences), facilitators of exercise and healthy eating (e.g., cognitive motivators, tools for health behavior implementation, social relationships), and intervention implications (e.g., informational needs, desire for social support). AYA cancer survivors and their supporters identified barriers to and facilitators of healthy lifestyle behaviors, which should be considered when designing interventions to improve the long-term health of survivors.

Barriers and Facilitators of Healthy Diet and Exercise Among Adolescent and Young Adult Cancer Survivors: Implications for Behavioral Interventions

PubMed Central

Yi, Jaehee; McClellan, Jessica; Kim, Jonghee; Tian, Tian; Grahmann, Bridget; Kirchhoff, Anne C.; Holton, Avery; Wright, Jennifer

2015-01-01

Purpose: This study uses qualitative methods to identify barriers to and facilitators of exercise and healthy eating among adolescent and young adult (AYA) cancer survivors (survivors currently aged 18–39 years and diagnosed with cancer anytime in their lives), as reported by survivors and their primary supporters. Methods: Survivors (Mage = 27.6 years, SD = 6.6 years) had completed active cancer therapy. Survivors and supporters (i.e., nominated by survivors as someone who was a main source of support) attended separate focus group sessions (five survivor focus groups, five supporter focus groups) and were asked to complete a self-reported questionnaire assessing demographic and cancer history and engagement in exercise and healthy eating. Results: In total, 25 survivors and 19 supporters participated. The three overarching themes identified were barriers to exercise and healthy eating (e.g., lack of resources, negative thoughts and feelings, negative social and environmental influences), facilitators of exercise and healthy eating (e.g., cognitive motivators, tools for health behavior implementation, social relationships), and intervention implications (e.g., informational needs, desire for social support). Conclusion: AYA cancer survivors and their supporters identified barriers to and facilitators of healthy lifestyle behaviors, which should be considered when designing interventions to improve the long-term health of survivors. PMID:26697268

The History and Accomplishments of the LIVESTRONG Young Adult Alliance.

PubMed

Mathews-Bradshaw, Beth; Johnson, Rebecca; Kaplan, Stuart; Craddock, Kelli; Hayes-Lattin, Brandon

2011-03-01

This article outlines the history, background, and accomplishments of the LIVESTRONG Young Adult Alliance. The LIVESTRONG Young Adult Alliance, a program of the Lance Armstrong Foundation, was developed as a vehicle for a strategic plan designed to implement the Adolescent and Young Adult Oncology Progress Review Group (AYAO PRG) recommendations. The AYAO PRG was co-sponsored by Lance Armstrong Foundation and the National Cancer Institute (NCI); both LIVESTRONG and NCI provide strategic oversight and guidance to the Alliance. Highlights and accomplishments: The Alliance accomplishments include the publication of disease-specific retrospective analyses, funding of an AYA cohort study and biorepository proposal, publication of two position statements on guidelines for care of AYAs with cancer and training for AYA oncology health professionals, promotion of an international charter of rights for AYA cancer patients, creation and distribution of a survey to college health professionals, creation and implementation of a Cancer Centers Working Group and Institutional Review Board Toolkit, and continued growth and collaboration through an annual meeting. The growth and success of the Alliance has coincided with the growth of AYA oncology as a field. The collaborative environment of the Alliance draws together a diverse group of individuals united in the effort to increase survival rates and improve the quality of life for adolescents and young adults diagnosed with cancer.

The Age Conundrum: A Scoping Review of Younger Age or Adolescent and Young Adult as a Risk Factor for Clinical Distress, Depression, or Anxiety in Cancer

PubMed Central

David, Victoria; Giese-Davis, Janine

2015-01-01

This scoping review was conducted to understand the extent, range, and nature of current research on adolescents and young adults (AYA) with cancer and distress, depression, and anxiety (DDA). This information is necessary to find and aggregate valuable data on the AYA population embedded in generalized studies of DDA. Keyword searches of six relevant electronic databases identified 2156 articles, with 316 selected for abstract review and 40 for full text review. Full-text reviews and data extraction resulted in 34 studies being included, which ranged widely in design, sample size, age-range categorization, analysis methods, DDA measurement tool, overall study rigor, and quality of evidence. Studies very seldom reported using theory to guide their age categorization, with only four studies giving any rationale for their age-group definitions. All 34 studies found a significant association between at least one DDA construct and the younger age group relative to the older age groups at some point along the cancer trajectory. However, age as an independent risk factor for DDA is still unclear, as the relationship could be confounded by other age-related factors. Despite the wide range of definitions and effect sizes in the studies included in this review, one thing is clear: adolescents and young adults, however defined, are a distinct group within the cancer population with an elevated risk of DDA. Widespread adoption of a standard AYA age-range definition will be essential to any future meta-analytical psycho-oncology research in this population. PMID:26697266

The Age Conundrum: A Scoping Review of Younger Age or Adolescent and Young Adult as a Risk Factor for Clinical Distress, Depression, or Anxiety in Cancer.

PubMed

Lang, Michael J; David, Victoria; Giese-Davis, Janine

2015-12-01

This scoping review was conducted to understand the extent, range, and nature of current research on adolescents and young adults (AYA) with cancer and distress, depression, and anxiety (DDA). This information is necessary to find and aggregate valuable data on the AYA population embedded in generalized studies of DDA. Keyword searches of six relevant electronic databases identified 2156 articles, with 316 selected for abstract review and 40 for full text review. Full-text reviews and data extraction resulted in 34 studies being included, which ranged widely in design, sample size, age-range categorization, analysis methods, DDA measurement tool, overall study rigor, and quality of evidence. Studies very seldom reported using theory to guide their age categorization, with only four studies giving any rationale for their age-group definitions. All 34 studies found a significant association between at least one DDA construct and the younger age group relative to the older age groups at some point along the cancer trajectory. However, age as an independent risk factor for DDA is still unclear, as the relationship could be confounded by other age-related factors. Despite the wide range of definitions and effect sizes in the studies included in this review, one thing is clear: adolescents and young adults, however defined, are a distinct group within the cancer population with an elevated risk of DDA. Widespread adoption of a standard AYA age-range definition will be essential to any future meta-analytical psycho-oncology research in this population.

Development and validation of the BRIGHTLIGHT Survey, a patient-reported experience measure for young people with cancer.

PubMed

Taylor, Rachel M; Fern, Lorna A; Solanki, Anita; Hooker, Louise; Carluccio, Anna; Pye, Julia; Jeans, David; Frere-Smith, Tom; Gibson, Faith; Barber, Julie; Raine, Rosalind; Stark, Dan; Feltbower, Richard; Pearce, Susie; Whelan, Jeremy S

2015-07-28

Patient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end-points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13-24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention. A three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14-25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14-24 years. Stage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people's cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments. Collaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young

Clinical Trial Enrollment of Adolescents and Young Adults With Sarcoma

PubMed Central

Davis, Lara E.; Janeway, Katherine A.; Weiss, Aaron R.; Chen, Yen-Lin E.; Scharschmidt, Thomas J.; Krailo, Mark; Glade Bender, Julia L.; Kopp, Lisa M.; Patel, Shreyaskumar R.; Schwartz, Gary K.; Horvath, L. Elise; Hawkins, Douglas S.; Chuk, Meredith K.; Reinke, Denise K.; Gorlick, Richard G.; Randall, R. Lor

2017-01-01

More than half of all sarcomas occur in adolescents and young adults (AYAs) aged 15 to 39 years. After the publication of the AYA series in the April 1, 2016 issue of Cancer, several leaders in the field of sarcoma across disciplines gathered to discuss the status of sarcoma clinical research in AYAs. They determined that a focused effort to include the underrepresented and understudied AYA population in current and future sarcoma clinical trials is overdue. Trial enrichment for AYA-aged sarcoma patients will produce more meaningful results that better represent the disease's biology, epidemiology, and treatment environment. To address the current deficit, this commentary outlines changes believed to be necessary to expediently achieve an increase in the enrollment of AYAs in sarcoma clinical trials. PMID:28493547

Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study.

PubMed

Shnorhavorian, Margarett; Harlan, Linda C; Smith, Ashley Wilder; Keegan, Theresa H M; Lynch, Charles F; Prasad, Pinki K; Cress, Rosemary D; Wu, Xiao-Cheng; Hamilton, Ann S; Parsons, Helen M; Keel, Gretchen; Charlesworth, Sarah E; Schwartz, Stephen M

2015-10-01

The fertility of adolescent and young adult (AYA) patients with cancer can be threatened by treatments, but to the authors' knowledge little is known regarding the extent to which providers discuss this with patients or recommend fertility preservation, or the patient and physician characteristics associated with these interactions. Questionnaires from 459 AYA patients with cancer who were diagnosed between 2007 and 2008 and recruited through 7 US population-based cancer registries were analyzed using sex-specific multivariable models. The authors assessed characteristics associated with not discussing therapy effects on fertility or fertility preservation options, and not making fertility preservation arrangements. Males without a medical oncologist were more likely not to be told that therapy might affect fertility than those with a medical oncologist (male odds ratio [OR], 2.28; 95% confidence interval [95% CI], 1.03-5.00). Individuals without insurance (male OR, 2.91 [95% CI, 1.41-5.91] and female OR, 5.46 [95% CI, 1.59-18.72]); those raising children aged <18 years; and, among males only, those who received treatment posing no or a low fertility risk (OR, 3.39; 95% CI, 1.60-7.16) were more likely not to discuss fertility preservation with providers. Finally, among males, those without a college degree (OR, 1.98; 95% CI, 1.00-3.97), lacking private insurance (OR, 2.97; 95% CI, 1.16-7.63), and raising children aged <18 years (OR, 3.53; 95% CI, 1.63-7.65) were more likely to not make fertility preservation arrangements; too few females had made fertility preservation arrangements for similar analyses to be performed. Discussion and action surrounding fertility preservation for AYA patients with cancer are associated with medical factors, patient socioeconomic data, and child-rearing status. These results highlight the need for insurance coverage for fertility preservation and increased awareness of fertility preservation options. © 2015 American Cancer Society.

Mental distress and health care use among survivors of adolescent and young adult cancer: A cross-sectional analysis of the National Health Interview Survey.

PubMed

Kaul, Sapna; Avila, Jaqueline C; Mutambudzi, Miriam; Russell, Heidi; Kirchhoff, Anne C; Schwartz, Cindy L

2017-03-01

The current study was conducted to examine the prevalence and correlates of mental distress among survivors of adolescent and young adult (AYA) cancer and a comparison group. A total of 875 AYA cancer survivors who were diagnosed between the ages of 15 and 39 years and who were at least 5 years from their initial diagnosis were identified from the 2013 and 2014 National Health Interview Surveys. A comparison group was created. The Kessler nonspecific mental/psychological distress scale was used to examine none/low, moderate, and severe distress. The issues of whether individuals talked to mental health professionals within the previous year and if they could afford mental health care also were examined. Variables (ie, demographics, behavioral [eg, smoking status], comorbidity, and mental health visits) associated with distress among the 2 groups were identified using multinomial logistic regressions. Survivors reported mental distress more often than the comparison group (moderate: 23.2% vs 16.9%; and severe: 8.4% vs 3.0% [P<.001]). Survivors cited not being able to afford mental health care more often (6.4% vs 2.3%; P = .002). Moreover, 74.7% and 52.2% of survivors, respectively, with moderate and severe distress had not talked to a mental health professional. Contrary to the comparison group, survivors who were current smokers reported severe distress more often compared with nonsmokers (relative risk, 3.59; 95% confidence interval, 1.46-8.84 [P = .01]). Having public and no insurance versus private insurance and report of sleep-related trouble within the previous week were found to be associated with greater distress among survivors. AYA cancer survivors are more likely to demonstrate mental distress than individuals without cancer. Nevertheless, few survivors may be receiving professional mental health services. Survivors need greater access to mental health screening and counseling to address the current gaps in care delivery. Cancer 2017;123:869-78. �

Communication About Prognosis With Adolescent and Young Adult Patients With Cancer: Information Needs, Prognostic Awareness, and Outcomes of Disclosure.

PubMed

Mack, Jennifer W; Fasciano, Karen M; Block, Susan D

2018-04-23

Purpose Communication about prognosis affects decisions patients and family members make about cancer care, and most patients say they want to know about their chances of cure. We sought to evaluate experiences with prognosis communication among adolescents and young adults (AYAs) with cancer. Patients and Methods We surveyed 203 AYAs with cancer age 15 to 29 years (response rate, 74%) treated at Dana-Farber Cancer Institute and their oncologists. Patients were approached within 6 weeks of diagnosis and asked to report on their prognosis communication preferences and experiences, their beliefs about likelihood of cure, and psychosocial outcomes of communication, such as trust (using an item from the Trust in Physician Scale), peace of mind (using select items from the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale), and anxiety and depression (using the Hospital Anxiety and Depression Scale). Oncologists were asked to report the patient's likelihood of cure. Results Most patients (83%, 167 of 203 patients) considered prognostic information to be extremely or very important. Patients who reported having received more extensive prognostic disclosure had higher odds of trust in the oncologist (odds ratio [OR], 1.30; 95% CI, 1.01 to 1.67; P = .05), peace of mind (OR, 2.13; 95% CI, 1.29 to 3.51; P = .002), and hope related to physician communication (OR, 1.27; 95% CI, 1.01 to 1.59; P = .04), after adjusting for patient sex, age, race or ethnicity, prognosis, and diagnosis. Disclosure was also associated with lower distress related to knowing about prognosis (OR, 0.65; 95% CI, 0.44 to 0.95; P = .03). However, a majority of patients (62%) reported prognostic estimates that exceeded those reported by physicians (McNemar P < .001). Conclusion Most AYAs with cancer value receiving prognostic information, which is positively associated with aspects of well-being. However, most overestimate chances of cure relative to oncologists, highlighting the

Patient-Reported Measures of Hearing Loss and Tinnitus in Pediatric Cancer and Hematopoietic Stem Cell Transplantation: A Systematic Review

ERIC Educational Resources Information Center

Stark, Daniel; Rosenberg, Abby R.; Johnston, Donna; Knight, Kristin; Caperon, Lizzie; Uleryk, Elizabeth; Frazier, A. Lindsay; Sung, Lillian

2016-01-01

Purpose: We identified studies that described use of any patient-reported outcome scale for hearing loss or tinnitus among children and adolescents and young adults (AYAs) with cancer or hematopoietic stem cell transplantation (HSCT) recipients. Method: In this systematic review, we performed electronic searches of OvidSP MEDLINE, EMBASE, and…

Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study.

PubMed

Rosenberg, Abby R; Bona, Kira; Wharton, Claire M; Bradford, Miranda; Shaffer, Michele L; Wolfe, Joanne; Baker, Kevin Scott

2016-04-01

Conducting patient-reported outcomes research with adolescents and young adults (AYAs) is difficult due to low participation rates and high attrition. Forty-seven AYAs with newly diagnosed cancer at two large hospitals were prospectively surveyed at the time of diagnosis and 3-6 and 12-18 months later. A subset participated in 1:1 semistructured interviews. Attrition prompted early study closure at one site. The majority of patients preferred paper-pencil to online surveys. Interview participants were more likely to complete surveys (e.g., 93% vs. 58% completion of 3-6 month surveys, P = 0.02). Engaging patients through qualitative methodologies and using patient-preferred instruments may optimize future research success. © 2015 Wiley Periodicals, Inc.

Adolescent and Young Adult Cancer Survivors' Valuation of Post-Treatment Recommended Care.

PubMed

Kaul, Sapna; Smits-Seemann, Rochelle R; Zamora, Eduardo R; Spraker-Perlman, Holly; Boyle, Kevin J; Kirchhoff, Anne C

2017-03-01

Examine whether survivors of adolescent and young adult (AYA) cancer value recommended post-treatment care using focus groups and a willingness to pay (WTP) survey. WTP, a measure of value, indicates the dollar amount individuals are willing to pay to use a service. Participants were recruited through the Utah Cancer Registry. N = 28 survivors diagnosed with cancer at ages 15-39 and currently aged ≥18 participated in focus groups, and N = 4 in phone interviews (participation rate = 50%). All participants responded to a demographic survey and WTP questions based on one-time and monthly payments for annual visits. Focus group participants responded to an open-ended question on the value of follow-up care. Interval regressions identified factors associated with WTP. Qualitative analysis summarized themes for the open-ended question. Focus group participants reported valuing follow-up care as it brings peace of mind and helps them manage their health. Yet, 38% reported not having a cancer-related visit in the previous year. Only 27% and 43% of survivors agreed to pay any one-time and monthly payments, respectively. The monthly payment mean WTP was $41 (95% confidence interval [CI]: 31-84), equating to $494 annually, which is greater than the mean WTP for one-time payment ($362, 95% CI: 293-432, p < 0.001), suggesting that survivors may prefer monthly payments. Several factors, including being female and in better health, predicted higher WTP. Many AYA cancer survivors report not visiting their doctors annually for post-treatment care despite verbally valuing care. Models that demonstrate high quality and distribute costs over time should be evaluated to encourage survivors to receive recommended care.

Hacking the hospital environment: young adults designing youth-friendly hospital rooms together with young people with cancer experiences.

PubMed

Boisen, Kirsten A; Boisen, Anne; Thomsen, Stine Legarth; Matthiesen, Simon Meggers; Hjerming, Maiken; Hertz, Pernille Grarup

2015-12-09

There is a need for youth-friendly hospital environments as the ward environment may affect both patient satisfaction and health outcomes. To involve young people in designing youth-friendly ward environment. We arranged a design competition lasting 42 h (Hackathon). Students in architecture, design, engineering, communication and anthropology participated (27 young adults) - forming eight groups. Adolescents and young adults (AYA) with current or former cancer experience participated as sparring partners. We provided workspace and food during the weekend. The groups presented their products to a jury and relevant stakeholders. The groups created eight unique design concepts. The young designers were extremely flexible listening to ideas and experiences from the young patients, which led to common features including individual and flexible design, privacy in two-bed wardrooms and social contact with other hospitalized AYA. The winning project included an integrated concept for both wardrooms and the AYA day room, including logos and names for the rooms and an 'energy wall' in the day room. A hackathon event was an effective mode of youth participation. The design concepts and ideas were in line with current evidence regarding pleasing hospital environment and youth-friendly inpatient facilities and may be applicable to other young patients.

New Promising Strategies in Oncofertility

PubMed Central

Hudson, Janella N.; Stanley, Nathanael B.; Nahata, Leena; Bowman-Curci, Meghan; Quinn, Gwendolyn P.

2017-01-01

Introduction Approximately 70,000 adolescent and young adults (AYA) are diagnosed with cancer each year. While advancements in treatment have led to improved prognosis and survival for patients, these same treatments can adversely affect AYA reproductive capacity. Localized treatments such as surgery and radiation therapy may affect fertility by removing or damaging reproductive organs, and systemic therapies such as chemotherapy can be toxic to gonads, (ovaries and testicles), thus affecting fertility and/or endocrine function. This can be traumatic for AYA with cancer as survivors often express desire to have genetic children and report feelings of regret or depression as a result of infertility caused by cancer treatments. Areas Covered Emerging technologies in the field of assisted reproductive technology offer new promise for preserving the reproductive capacity of AYA cancer patients prior to treatment as well as providing alternatives for survivors. The following review revisits contemporary approaches to fertility preservation as well newly developing technologies. Expert Commentary There are several advances in ART that hold promise for patients and survivors. However there are challenges that inhibit uptake including poor communication between providers and patients about risks and fertility preservation options; high costs; and lack of insurance coverage for fertility preservation services. PMID:28959743

A comparison of heterosexual and LGBTQ cancer survivors' outlooks on relationships, family building, possible infertility, and patient-doctor fertility risk communication.

PubMed

M Russell, Andrea; Galvin, Kathleen M; Harper, Maya M; Clayman, Marla L

2016-10-01

Little research about cancer-related infertility has examined the experiences and needs of lesbian, gay, bisexual, transgender, or queer (LGBTQ) cancer survivors. This research seeks to understand how LGBTQ survivors are similar to or different from heterosexual survivors with respect to cancer treatments' effects on relationships, plans for parenthood, and fertility preservation decision making. Semi-structured telephone interviews conducted with adolescent or young adult (AYA) cancer survivors (n = 56) were coded for themes. Interviews consisted of questions about pre- and post-diagnosis thoughts about relationships, parenthood, possible infertility, and how information about fertility risks was received. While LGBTQ (n = 22) and heterosexual (n = 34) survivors reported similar challenges when dating post-diagnosis, heterosexual survivors were more likely to report fertility concerns as affecting romantic relationships (p < .05). LGBTQ survivors seemed more open to raising non-biological children or not becoming a parent than heterosexual survivors. LGBTQ survivors generally reported being satisfied with or indifferent to the information that they were given regarding fertility loss, despite reporting receiving similar amounts of information as compared to heterosexual patients (p < .10). LGBTQ patients' views on relationships, parenthood, and family building seemed to result in less distress when faced with infertility. However, interventions facilitating information exchange about dating, fertility risks, and family building options may be valuable to LGBTQ and heterosexual cancer survivors. LGBTQ cancer survivors may display more adaptive coping with respect to relationships and fertility loss. Oncology professionals may want to proactively introduce positive coping strategies to reduce distress among AYA cancer survivors at risk for infertility.

The challenging aspects of managing adolescents and young adults with Hodgkin's lymphoma.

PubMed

Jachimowicz, Ron D; Engert, Andreas

2014-01-01

Cancer in the adolescent and young adult (AYA) is the second leading cause of nonaccidental death with hematological malignancies spiking during this period. Treatment of AYAs with hematological malignancies usually follows either pediatric or adult protocols with sufficient information lacking on subgroup analyses regarding course and outcome. In this review we will outline up-to-date treatment possibilities for AYAs diagnosed with Hodgkin's lymphoma. Early and late toxicities will be addressed and future directions of research suggested. © 2014 S. Karger AG, Basel.

Malignant central nervous system tumors among adolescents and young adults (15-39 years old) in 14 Southern-Eastern European registries and the US Surveillance, Epidemiology, and End Results program: Mortality and survival patterns.

PubMed

Georgakis, Marios K; Papathoma, Paraskevi; Ryzhov, Anton; Zivkovic-Perisic, Snezana; Eser, Sultan; Taraszkiewicz, Łukasz; Sekerija, Mario; Žagar, Tina; Antunes, Luis; Zborovskaya, Anna; Bastos, Joana; Florea, Margareta; Coza, Daniela; Demetriou, Anna; Agius, Domenic; Strahinja, Rajko M; Themistocleous, Marios; Tolia, Maria; Tzanis, Spyridon; Alexiou, George A; Papanikolaou, Panagiotis G; Nomikos, Panagiotis; Kantzanou, Maria; Dessypris, Nick; Pourtsidis, Apostolos; Petridou, Eleni T

2017-11-15

Unique features and worse outcomes have been reported for cancers among adolescents and young adults (AYAs; 15-39 years old). The aim of this study was to explore the mortality and survival patterns of malignant central nervous system (CNS) tumors among AYAs in Southern-Eastern Europe (SEE) in comparison with the US Surveillance, Epidemiology, and End Results (SEER) program. Malignant CNS tumors diagnosed in AYAs during the period spanning 1990-2014 were retrieved from 14 population-based cancer registries in the SEE region (n = 11,438). Age-adjusted mortality rates were calculated and survival patterns were evaluated via Kaplan-Meier curves and Cox regression analyses, and they were compared with respective 1990-2012 figures from SEER (n = 13,573). Mortality rates in SEE (range, 11.9-18.5 deaths per million) were higher overall than the SEER rate (9.4 deaths per million), with decreasing trends in both regions. Survival rates increased during a comparable period (2001-2009) in SEE and SEER. The 5-year survival rate was considerably lower in the SEE registries (46%) versus SEER (67%), mainly because of the extremely low rates in Ukraine; this finding was consistent across age groups and diagnostic subtypes. The highest 5-year survival rates were recorded for ependymomas (76% in SEE and 92% in SEER), and the worst were recorded for glioblastomas and anaplastic astrocytomas (28% in SEE and 37% in SEER). Advancing age, male sex, and rural residency at diagnosis adversely affected outcomes in both regions. Despite definite survival gains over the last years, the considerable outcome disparities between the less affluent SEE region and the United States for AYAs with malignant CNS tumors point to health care delivery inequalities. No considerable prognostic deficits for CNS tumors are evident for AYAs versus children. Cancer 2017;123:4458-71. © 2017 American Cancer Society. © 2017 American Cancer Society.

Opening end-of-life discussions: how to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults.

PubMed

Zadeh, Sima; Pao, Maryland; Wiener, Lori

2015-06-01

Each year, more than 11,000 adolescents and young adults (AYAs), aged 15-34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions. We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™. Voicing My CHOiCES™: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers. Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.

Sociodemographic disparities in the occurrence of medical conditions among adolescent and young adult Hodgkin lymphoma survivors.

PubMed

Keegan, Theresa H M; Li, Qian; Steele, Amy; Alvarez, Elysia M; Brunson, Ann; Flowers, Christopher R; Glaser, Sally L; Wun, Ted

2018-06-01

Hodgkin lymphoma (HL) survivors experience high risks of second cancers and cardiovascular disease, but no studies have considered whether the occurrence of these and other medical conditions differ by sociodemographic factors in adolescent and young adult (AYA) survivors. Data for 5,085 patients aged 15-39 when diagnosed with HL during 1996-2012 and surviving ≥ 2 years were obtained from the California Cancer Registry and linked to hospitalization data. We examined the impact of race/ethnicity, neighborhood socioeconomic status (SES), and health insurance on the occurrence of medical conditions (≥ 2 years after diagnosis) and the impact of medical conditions on survival using multivariable Cox proportional hazards regression. Twenty-six percent of AYAs experienced at least one medical condition and 15% had ≥ 2 medical conditions after treatment for HL. In multivariable analyses, Black HL survivors had a higher likelihood (vs. non-Hispanic Whites) of endocrine [hazard ratio (HR) = 1.37, 95% confidence interval (CI) 1.05-1.78] and circulatory system diseases (HR = 1.58, CI 1.17-2.14); Hispanics had a higher likelihood of endocrine diseases [HR = 1.24 (1.04-1.48)]. AYAs with public or no insurance (vs. private/military) had higher likelihood of circulatory system diseases, respiratory system diseases, chronic kidney disease/renal failure, liver disease, and endocrine diseases. AYAs residing in low SES neighborhoods (vs. high) had higher likelihood of respiratory system and endocrine diseases. AYAs with these medical conditions or second cancers had an over twofold increased risk of death. Strategies to improve health care utilization for surveillance and secondary prevention among AYA HL survivors at increased risk of medical conditions may improve outcomes.

Comparison of survival of adolescents and young adults with hematologic malignancies in Osaka, Japan.

PubMed

Nakata-Yamada, Kayo; Inoue, Masami; Ioka, Akiko; Ito, Yuri; Tabuchi, Takahiro; Miyashiro, Isao; Masaie, Hiroaki; Ishikawa, Jun; Hino, Masayuki; Tsukuma, Hideaki

2016-01-01

The survival gap between adolescents and young adults (AYAs) with hematological malignancies persists in many countries. To determine to what extent it does in Japan, we investigated survival and treatment regimens in 211 Japanese AYAs (15-29 years) in the Osaka Cancer Registry diagnosed during 2001-2005 with hematological malignancies, and compared adolescents (15-19 years) with young adults (20-29 years). AYAs with acute lymphoblastic leukemia (ALL) had a poor 5-year survival (44%), particularly young adults (29% vs. 64% in adolescents, p = 0.01). Additional investigation for patients with ALL revealed that only 19% of young adults were treated with pediatric treatment regimens compared with 45% of adolescents (p = 0.05). Our data indicate that we need to focus on young adults with ALL and to consider establishing appropriate cancer care system and guidelines for them in Japan.

Comparison of Survival at Adult versus Pediatric Treatment Centers for Rare Pediatric Tumors in an Adolescent and Young Adult (AYA) Population in the State of Georgia

PubMed Central

Cash, Thomas; Qayed, Muna; Ward, Kevin C.; Mertens, Ann C.; Rapkin, Louis

2014-01-01

Background The type of treatment center where 15-21-year-old adolescent and young adult (AYA) patients with rare pediatric tumors achieve their best clinical outcome is unknown. Procedure We performed a retrospective analysis using the Georgia Cancer Registry (GCR) of 15-21-year-old patients with a malignant, rare pediatric tumor diagnosed during the period from 2000-2009. Patients were identified as being treated at one of five Georgia pediatric cancer centers or at an adult center. Data were analyzed for 10-year overall survival, patient characteristics associated with death, and patient characteristics present at diagnosis associated with choice of treatment center. Results There was a total of 479 patients in our final study population, of which 379 (79.1%) were treated at an adult center and 100 (20.9%) were treated at a pediatric center. Patients treated at an adult center had a 10-year overall survival of 86% compared to 85% for patients treated at a pediatric center (p= 0.31). Race and poverty were not significantly associated with death. Patients with nasopharyngeal carcinoma (OR=7.38; 95% CI=2.30 – 23.75) and ‘other carcinomas’ (OR=2.64; 95% CI=1.25 – 5.60) were more likely to be treated at a pediatric center. Patients with higher-stage disease (OR=4.24; 95% CI=1.71 – 10.52) and higher poverty (OR=2.32; 95% CI=1.23 – 4.37) were also more likely to be treated at a pediatric center. Conclusion Our data suggest that there is no difference in survival for 15-21-year-old patients with rare pediatric tumors when treated at an adult or pediatric center. PMID:25393593

Metabolic and Psychological Impact of a Pragmatic Exercise Intervention Program in Adolescent and Young Adult Survivors of Pediatric Cancer-Related Cerebral Insult.

PubMed

Rath, Shoshana R; Long, Treya M; Bear, Natasha L; Miles, Gordon C P; Bullock, Andrew M; Gottardo, Nicholas G; Cole, Catherine H; Naylor, Louise H; Choong, Catherine S Y

2018-06-01

To assess metabolic function among adolescent and young adult (AYA) survivors of childhood cancer-related brain surgery or cranial irradiation (CRT) and to determine feasibility, safety, and metabolic as well as psychological impact of a 6-month exercise program in this cohort. Twenty AYAs aged 15-23 years were recruited. All had completed cancer treatment by age 15.5 and were more than 1 year after end of treatment. Metabolic function was assessed at baseline (T1), after a 6-month non-intervention period (T2), and after the 6-month intervention (T3). Psychological assessments were performed at T1 and T3. Eight to 12 months after the program (T4), its lasting impact was assessed by questionnaire. The 6-month intervention consisted of small group-based, tailored, supervised exercise sessions combining resistance and aerobic exercise. Sessions were offered up to thrice per week and adherence defined as participation in ≥24 sessions. Flexibility was built into the design with an alternative home-based program offered to those who could not attend the gymnasium. Thirteen of the 20 recruited participants were adherent to the program. There was one fall during exercise, but no injury was sustained. Higher rates of metabolic impairment than would be expected in a healthy cohort were found at baseline both among brain tumor survivors and survivors of total body irradiation. Central adiposity reduced post-intervention (p = 0.014) and improvements in adaptive function were seen. Participants enjoyed the program, but work and study commitments limited attendance. AYA survivors of childhood brain tumors and CRT should be screened for metabolic and psychological well-being. Small group-based exercise is safe, feasible, and enjoyable for this cohort and may benefit them both metabolically and psychologically. ACTRN12614000796684. Retrospectively registered July 28, 2014.

Adolescents and Young Adults With Cancer: Oncology Nurses Report Attitudes and Barriers to Discussing Fertility Preservation.

PubMed

Nobel Murray, Alexandra; Chrisler, Joan C; Robbins, Mark L

2016-08-01

Fertility issues have been found to be an important topic for adolescents and young adults (AYAs) with cancer. Medical technology has made fertility preservation (FP) increasingly effective for postpubertal patients whose treatment course may inhibit their future ability to achieve biologic parenthood. Oncology providers' recommendations have been shown to vary, potentially affecting patients' decision-making processes regarding FP. This study was designed to assess oncology nurses' recommendations for patients to consider FP options and to explore what patient-related factors may influence discussion of FP with AYAs with cancer. 116 oncology nurses participated in this study and were randomized to read one of four vignettes about a patient whose proposed treatment course could affect his or her fertility. Participants' recommendations to partake in FP were analyzed to test for differences by patient age and gender. Open-ended responses to questions about their experiences as oncology nurses were analyzed descriptively. Nurses strongly recommended that all patients explore FP options before the start of treatment. Oncology nurses endorsed stronger opinions that young adult female patients should be given independent decision-making power to delay treatment for FP, compared to male and female adolescent patients and young adult male patients. Participants mentioned barriers to discussions that included concerns about exacerbating negative emotions and the decision-making capacity of young patients.

Predictors of Posttraumatic Stress Symptoms Among Adolescent and Young Adult Survivors of Childhood Cancer: Importance of Monitoring Survivors' Experiences of Family Functioning.

PubMed

Kamibeppu, Kiyoko; Murayama, Shiho; Ozono, Shuichi; Sakamoto, Naoko; Iwai, Tsuyako; Asami, Keiko; Maeda, Naoko; Inada, Hiroko; Kakee, Naoko; Okamura, Jun; Horibe, Keizo; Ishida, Yasushi

2015-11-01

The purpose of this study was to identify factors associated with posttraumatic stress symptoms (PTSS) among Japanese long-term childhood cancer survivors (CCSs). Subjects comprised 185 adolescent and young adult (AYA) CCSs who completed anonymous self-report questionnaires. Attending physicians also completed an anonymous disease/treatment data sheet. Mean age of survivors was approximately 8 years at diagnosis and 23 years at participation. Multiple regression analysis showed that family functioning, satisfaction with social support, being female, and interactions between family functioning and gender and age at the time of diagnosis were associated with PTSS among survivors. This study revealed family functioning as the most predictive factor of PTSS among AYA CCSs in Japan. Even when the survivor may have unchangeable risk factors, family functioning can potentially moderate the effects on PTSS. Thus, it is crucial for health professionals to carefully monitor and attend to survivors' experiences of family functioning to mitigate PTSS. © The Author(s) 2015.

Outcomes of allogeneic hematopoietic cell transplantation for adolescent and young adults compared with children and older adults with acute myeloid leukemia.

PubMed

Majhail, Navneet S; Brazauskas, Ruta; Hassebroek, Anna; Bredeson, Christopher N; Hahn, Theresa; Hale, Gregory A; Horowitz, Mary M; Lazarus, Hillard M; Maziarz, Richard T; Wood, William A; Parsons, Susan K; Joffe, Steven; Rizzo, J Douglas; Lee, Stephanie J; Hayes-Lattin, Brandon M

2012-06-01

Adolescents and young adults (AYAs) with cancer have not experienced improvements in survival to the same extent as children and older adults. We compared outcomes among children (<15 years), AYAs (15-40 years) and older adults (>40 years) receiving allogeneic hematopoietic cell transplant (HCT) for acute myeloid leukemia (AML). Our cohort consisted of 900 children, 2,708 AYA, and 2,728 older adult recipients of HLA-identical sibling or unrelated donor (URD) transplantation using myeloablative or reduced-intensity/nonmyeloablative conditioning. Outcomes were assessed over three time periods (1980-1988, 1989-1997, 1998-2005) for siblings and two time periods (1989-1997, 1998-2005) for URD HCT. Analyses were stratified by donor type. Results showed overall survival for AYAs using either siblings or URD improved over time. Although children had better and older adults had worse survival compared with AYAs, improvements in survival for AYAs did not lag behind those for children and older adults. After sibling donor HCT, 5-year adjusted survival for the three time periods was 40%, 48%, and 53% for children, 35%, 41%, and 42% for AYAs, and 22%, 30%, and 34% for older adults. Among URD HCT recipients, 5-year adjusted survival for the two time periods was 38% and 37% for children, 24% and 28% for AYAs, and 19% and 23% for older adults. Improvements in survival occurred because of a reduction in risk of treatment-related mortality. The risk of relapse did not change over time. Improvements in survival among AYAs undergoing allogeneic HCT for AML have paralleled those among children and older adults. Copyright © 2012 American Society for Blood and Marrow Transplantation. Published by Elsevier Inc. All rights reserved.

Patient-provider communication about the emotional cues and concerns of adolescent and young adult patients and their family members when receiving a diagnosis of cancer.

PubMed

Korsvold, Live; Mellblom, Anneli V; Lie, Hanne C; Ruud, Ellen; Loge, Jon Håvard; Finset, Arnstein

2016-10-01

This study aimed to examine how emotional cues/concerns are expressed and responded to in medical consultations with adolescent and young adults (AYA), an understudied patient group, at the time of cancer diagnosis. Nine consultations in which AYA patients aged 12-25 years were informed about their cancer diagnosis and treatment plans were audio recorded. Expressions of emotional cues/concerns and physicians' responses were identified and coded using The Verona Coding Definitions of Emotional Sequences (VR-CoDES). A total of 135 emotional cues/concerns (range: 2-26, median: 13) were identified. Cues or concerns that were expressed by patients and relatives following questions from physicians were more often explicit than patient-initiated cues/concerns. Questions about medical and practical issues could often be understood as ways of expressing emotional cues. When patients or relatives expressed less explicit verbal cues about underlying concerns, physicians often responded by presenting medical information without commenting on the emotional aspect indicated by the cue. The communication was dominated by information-giving, but the questions from patients and relatives and their responses to the information often had emotional connotations. Patients' requests for information may include an emotional aspect. These preliminary findings should be tested in a larger sample. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Complete prevalence of malignant primary brain tumors registry data in the United States compared with other common cancers, 2010

DOE Office of Scientific and Technical Information (OSTI.GOV)

Zhang, Adah S.; Ostrom, Quinn T.; Kruchko, Carol

Complete prevalence proportions illustrate the burden of disease in a population. Here, this study estimates the 2010 complete prevalence of malignant primary brain tumors overall and by Central Brain Tumor Registry of the United States (CBTRUS) histology groups, and compares the brain tumor prevalence estimates to the complete prevalence of other common cancers as determined by the Surveillance, Epidemiology, and End Results Program (SEER) by age at prevalence (2010): children (0–14 y), adolescent and young adult (AYA) (15–39 y), and adult (40+ y).

Complete prevalence of malignant primary brain tumors registry data in the United States compared with other common cancers, 2010

DOE PAGES

Zhang, Adah S.; Ostrom, Quinn T.; Kruchko, Carol; ...

2016-12-29

Complete prevalence proportions illustrate the burden of disease in a population. Here, this study estimates the 2010 complete prevalence of malignant primary brain tumors overall and by Central Brain Tumor Registry of the United States (CBTRUS) histology groups, and compares the brain tumor prevalence estimates to the complete prevalence of other common cancers as determined by the Surveillance, Epidemiology, and End Results Program (SEER) by age at prevalence (2010): children (0–14 y), adolescent and young adult (AYA) (15–39 y), and adult (40+ y).

Detection of lymph node metastases in pediatric and adolescent/young adult sarcoma: Sentinel lymph node biopsy versus fludeoxyglucose positron emission tomography imaging-A prospective trial.

PubMed

Wagner, Lars M; Kremer, Nathalie; Gelfand, Michael J; Sharp, Susan E; Turpin, Brian K; Nagarajan, Rajaram; Tiao, Gregory M; Pressey, Joseph G; Yin, Julie; Dasgupta, Roshni

2017-01-01

Lymph node metastases are an important cause of treatment failure for pediatric and adolescent/young adult (AYA) sarcoma patients. Nodal sampling is recommended for certain sarcoma subtypes that have a predilection for lymphatic spread. Sentinel lymph node biopsy (SLNB) may improve the diagnostic yield of nodal sampling, particularly when single-photon emission computed tomography/computed tomography (SPECT-CT) is used to facilitate anatomic localization. Functional imaging with positron emission tomography/computed tomography (PET-CT) is increasingly used for sarcoma staging and is a less invasive alternative to SLNB. To assess the utility of these 2 staging methods, this study prospectively compared SLNB plus SPECT-CT with PET-CT for the identification of nodal metastases in pediatric and AYA patients. Twenty-eight pediatric and AYA sarcoma patients underwent SLNB with SPECT-CT. The histological findings of the excised lymph nodes were then correlated with preoperative PET-CT imaging. A median of 2.4 sentinel nodes were sampled per patient. No wound infections or chronic lymphedema occurred. SLNB identified tumors in 7 of the 28 patients (25%), including 3 patients who had normal PET-CT imaging of the nodal basin. In contrast, PET-CT demonstrated hypermetabolic regional nodes in 14 patients, and this resulted in a positive predictive value of only 29%. The sensitivity and specificity of PET-CT for detecting histologically confirmed nodal metastases were only 57% and 52%, respectively. SLNB can safely guide the rational selection of nodes for biopsy in pediatric and AYA sarcoma patients and can identify therapy-changing nodal disease not appreciated with PET-CT. Cancer 2017;155-160. © 2016 American Cancer Society. © 2016 American Cancer Society.

Impact of treatment and insurance on socioeconomic disparities in survival after adolescent and young adult Hodgkin lymphoma: A population-based study

PubMed Central

Keegan, Theresa H.M.; DeRouen, Mindy C.; Parsons, Helen M.; Clarke, Christina A.; Goldberg, Debbie; Flowers, Christopher R.; Glaser, Sally L.

2015-01-01

Background Previous studies documented racial/ethnic and socioeconomic disparities in survival after Hodgkin lymphoma (HL) among adolescents and young adults (AYAs), but did not consider the influence of combined-modality treatment and health insurance. Methods Data for 9,353 AYA patients aged 15–39 when diagnosed with HL during 1988–2011 were obtained from the California Cancer Registry. Using multivariate Cox proportional hazards regression, we examined the impact of socio-demographic characteristics (race/ethnicity, neighborhood socioeconomic status (SES), and health insurance), initial combined-modality treatment, and subsequent cancers on survival. Results Over the 24-year study period, we observed improvements in HL-specific survival by diagnostic period and differences in survival by race/ethnicity, neighborhood SES and health insurance for a subset of more recently diagnosed patients (2001–2011). In multivariable analyses, HL-specific survival was worse for Blacks than Whites with early-stage (Hazard Ratio (HR): 1.68; 95% Confidence Interval (CI): 1.14, 2.49) and late-stage disease (HR: 1.68; 95% CI: 1.17, 2.41) and for Hispanics than Whites with late-stage disease (HR: 1.58; 95% CI: 1.22, 2.04). AYAs diagnosed with early-stage disease experienced worse survival if they also resided in lower SES neighborhoods (HR: 2.06; 95% CI: 1.59, 2.68). Furthermore, more recently diagnosed AYAs with public health insurance or who were uninsured experienced worse HL-specific survival (HR: 2.08; 95% CI: 1.52, 2.84). Conclusion Our findings identify several subgroups of HL patients at higher risk for HL mortality. Impact Identifying and reducing barriers to recommended treatment and surveillance in these AYAs at much higher risk of mortality is essential to ameliorating these survival disparities. PMID:26826029

Assessing the Quality, Feasibility, and Efficacy of Electronic Patient Platforms Designed to Support Adolescents and Young Adults With Cancer: A Systematic Review Protocol

PubMed Central

McCann, Lisa

2017-01-01

Background A range of innovative websites, mobile technologies, eHealth and mHealth platforms have emerged to support adolescents and young adults (AYAs) with cancer. Previous reviews have identified these various applications and solutions, but no review has summarized the quality, feasibility, and efficacy of existing patient platforms (inclusive of websites, mobile technologies, mHealth and eHealth platforms) developed specifically for young people with cancer. Objective This paper describes the design of a protocol to conduct a review of published studies or reports which describe or report on an existing platform designed specifically for AYAs who have had a cancer diagnosis. Methods A search string was developed using a variety of key words and Medical Subject Heading and applied to bibliographic databases. General data (sample characteristics, patient platform development, design and, if applicable, pilot testing outcomes) will be extracted from reports and studies. Drawing on a previously developed coding schematic, the identified patient platforms will be coded for mode of delivery into (1) automated functions, (2) communicative functions, and (3) use of supplementary modes. An adapted version of the Mobile App Rating Scale (MARS) will be used to assess the of quality of each identified patient platform. The methodological quality of included studies will be assessed using the Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields (QualSyst). Both authors will independently screen eligible studies for final inclusion and will both be responsible for data extraction and appraisal. Data will be synthesized narratively to provide an overview of identified patient platforms. Results The review began in October 2016 and is currently in progress. The review paper will be submitted for peer-review and publication in the summer of 2017. Conclusions This review will be unique in its focus on assessing, where possible, the

A content analysis of emotional concerns expressed at the time of receiving a cancer diagnosis: An observational study of consultations with adolescent and young adult patients and their family members.

PubMed

Korsvold, Live; Mellblom, Anneli Viktoria; Finset, Arnstein; Ruud, Ellen; Lie, Hanne Cathrine

2017-02-01

Little is known about the emotional concerns expressed by adolescent and young adult (AYA) patients in consultations when a diagnosis of cancer is delivered. Here, we investigated the content of such concerns and how health care providers respond to them. We audio-recorded nine consultations with AYA cancer patients (ages: 12-25 years) at the time of diagnosis. We have previously identified and coded 135 emotional concerns and the responses to these in the nine consultations using the Verona Coding Definitions of Emotional Sequences (VR-CoDES) framework. Here, we used qualitative content analysis to study these emotional concerns and categorize them according to overarching themes. We then quantitatively explored associations between the themes of the concerns and whether the responses to them varied according to their themes. We identified four themes for the content of concerns: "Side-effects/late-effects" (39%), "What happens in the near future/practical aspects" (16%), "Fear" (27%) and "Sadness" (17%) (e. g. crying, sighing or other sounds that expressed sadness). Health care providers' responses did not appear to vary according to the different themes of concerns, but typically consisted of providing medical information. The content analysis revealed that patients and family members expressed a wide range of emotional concerns. Health care providers tended to respond to the content-aspect of the concerns, but did rarely explicitly acknowledge the affective-aspect of the concerns. The effect of responses to patients' emotional concerns in the important first consultations about the cancer diagnosis and planned treatment should be investigated in future studies. Copyright © 2016 Elsevier Ltd. All rights reserved.

Stories That Heal: Understanding the Effects of Creating Digital Stories With Pediatric and Adolescent/Young Adult Oncology Patients.

PubMed

Laing, Catherine M; Moules, Nancy J; Estefan, Andrew; Lang, Mike

The purpose of this philosophical hermeneutic study was to determine if, and understand how, digital stories might be effective therapeutic tools to use with children and adolescents/young adults (AYA) with cancer, thus helping mitigate suffering. Sixteen participants made digital stories with the help of a research assistant trained in digital storytelling and were interviewed following the completion of their stories. Findings from this research revealed that digital stories were a way to have others understand their experiences of cancer, allowed for further healing from their sometimes traumatic experiences, had unexpected therapeutic effects, and were a way to reconcile past experiences with current life. Digital stories, we conclude, show great promise with the pediatric and AYA oncology community and we believe are a way in which the psychosocial effects of cancer treatment may be addressed. Recommendations for incorporating digital stories into clinical practice and follow-up programs are offered.

Racial and Ethnic Disparities in the Incidence and Trends of Soft Tissue Sarcoma Among Adolescents and Young Adults in the United States, 1995-2008.

PubMed

Hsieh, Mei-Chin; Wu, Xiao-Cheng; Andrews, Patricia A; Chen, Vivien W

2013-09-01

The aim of this study was to examine racial/ethnic disparities in the incidence rates and trends of soft tissue sarcoma (STS) by gender, age, and histological type among adolescents and young adults (AYAs) aged 15-29 years. The 1995-2008 incidence data from 25 population-based cancer registries, covering 64% of the United States population, were obtained from the North American Association of Central Cancer Registries. The Surveillance, Epidemiology and End Results AYA site recode and International Classification of Diseases for Oncology, 3rd Edition, were adopted to categorize STS histological types and anatomic groups. Age-adjusted incidence rates and average annual percent change (AAPC) were calculated. The incidence of all STSs combined was 34% higher in males than females (95% CI: 1.28, 1.39), 60% higher among blacks than whites (95% CI: 1.52, 1.68), and slightly higher among Hispanics than whites. Compared with whites, blacks had significantly higher incidence of fibromatous neoplasms, and Hispanics had significantly higher incidence of liposarcoma. Whites were more likely to be diagnosed with synovial sarcoma than blacks. Black and Hispanic males had significantly higher Kaposi sarcoma incidence than white males. The AAPC of all STSs combined showed a significant decrease from 1995 to 2008 (AAPC=-2.1%; 95% CI: -3.2%, -1.0%). However, after excluding Kaposi sarcoma, there was no significant trend. The incidence rates of STS histological types in AYAs vary among racial/ethnic groups. The declining trends of STS are due mainly to decreasing incidence of Kaposi sarcoma in all races/ethnicities. Research to identify factors associated with racial/ethnic disparities in AYA STS is necessary.

Parental perspectives of an adolescent/young adult stem cell transplant and a music video intervention.

PubMed

Burns, Debra S; Robb, Sheri L; Phillips-Salimi, Celeste; Haase, Joan E

2010-01-01

Parents experience high levels of distress during their child's stem cell transplant that can decrease the ability to support their child and effectively communicate with healthcare providers. Because parents are a primary source of support, their perspectives are very important when evaluating supportive care interventions for their adolescents/young adults. This study examined parents' perspective of their adolescents or young adults' (AYAs') experience with stem cell transplantation (SCT) and involvement in a therapeutic music video (TMV) intervention. This was a phenomenological study using parents' interviews. The sample included 7 parents of 6 adolescents/young adults ranging in age from 13 to 21 years hospitalized for SCT for an oncology-related condition. Parents' interviews were conducted 100 days after transplantation. Sessions were audio taped, transcribed, and analyzed using Colaizzi's phenomenological analysis. We analyzed more than 350 significant statements from 7 parents. Seven theme categories emerged: (1) humbling, humiliating, horrible: parents' perspectives on the cancer experiences and SCT; (2) gratitude for the benefits of TMV intervention; (3) enhanced communication; (4) connectedness; (5) watching my AYA change and grow; (6) process of parent gaining insight; and (7) and an ironic recognition of both the sad and beautiful: parents' response to the TMV intervention. Parents' narratives suggest that the TMV intervention is a way to buffer the challenges related to SCT, and a larger study is warranted. These preliminary data offer clinicians insight into parent perceptions about the cancer experience, specifically SCT for their AYA child, and can be used to inform and shape clinical care. Findings reinforce the importance of offering AYAs opportunities to experience independence and mastery and engage in meaningful communication during transplant.

Central nervous system tumours among adolescents and young adults (15-39 years) in Southern and Eastern Europe: Registration improvements reveal higher incidence rates compared to the US.

PubMed

Georgakis, Marios K; Panagopoulou, Paraskevi; Papathoma, Paraskevi; Tragiannidis, Athanasios; Ryzhov, Anton; Zivkovic-Perisic, Snezana; Eser, Sultan; Taraszkiewicz, Łukasz; Sekerija, Mario; Žagar, Tina; Antunes, Luis; Zborovskaya, Anna; Bastos, Joana; Florea, Margareta; Coza, Daniela; Demetriou, Anna; Agius, Domenic; Strahinja, Rajko M; Sfakianos, Georgios; Nikas, Ioannis; Kosmidis, Sofia; Razis, Evangelia; Pourtsidis, Apostolos; Kantzanou, Maria; Dessypris, Nick; Petridou, Eleni Th

2017-11-01

To present incidence of central nervous system (CNS) tumours among adolescents and young adults (AYAs; 15-39 years) derived from registries of Southern and Eastern Europe (SEE) in comparison to the Surveillance, Epidemiology and End Results (SEER), US and explore changes due to etiological parameters or registration improvement via evaluating time trends. Diagnoses of 11,438 incident malignant CNS tumours in AYAs (1990-2014) were retrieved from 14 collaborating SEE cancer registries and 13,573 from the publicly available SEER database (1990-2012). Age-adjusted incidence rates (AIRs) were calculated; Poisson and joinpoint regression analyses were performed for temporal trends. The overall AIR of malignant CNS tumours among AYAs was higher in SEE (28.1/million) compared to SEER (24.7/million). Astrocytomas comprised almost half of the cases in both regions, albeit the higher proportion of unspecified cases in SEE registries (30% versus 2.5% in SEER). Similar were the age and gender distributions across SEE and SEER with a male-to-female ratio of 1.3 and an overall increase of incidence by age. Increasing temporal trends in incidence were documented in four SEE registries (Greater Poland, Portugal North, Turkey-Izmir and Ukraine) versus an annual decrease in Croatia (-2.5%) and a rather stable rate in SEER (-0.3%). This first report on descriptive epidemiology of AYAs malignant CNS tumours in the SEE area shows higher incidence rates as compared to the United States of America and variable temporal trends that may be linked to registration improvements. Hence, it emphasises the need for optimisation of cancer registration processes, as to enable the in-depth evaluation of the observed patterns by disease subtype. Copyright © 2017 Elsevier Ltd. All rights reserved.

Head and Neck Squamous Cell Carcinoma in Adolescents and Young Adults: Survivorship Patterns and Disparities.

PubMed

Challapalli, Sai D; Simpson, Matthew C; Adjei Boakye, Eric; Pannu, Jay S; Costa, Dary J; Osazuwa-Peters, Nosayaba

2018-05-10

Adolescent and young adult (AYA) head and neck cancer (HNC) patients require longer term follow-ups as they age; yet, little is known about factors associated with survivorship in this population. We aimed to describe nonclinical factors associated with HNC survivorship among AYAs. In this retrospective cohort study, the Surveillance, Epidemiology and End Results 18 database from 2007 to 2014 was queried. Eligible cases were 15-39-year-old primary HNC patients with known cause of death (n = 1777). Kaplan-Meier survival curves stratified by age group (15-29, 30-34, and 35-39) and by health insurance status tested differences in HNC survival among groups with a log-rank test. Variables, including age, sex, race/ethnicity, county-level poverty, anatomic site, stage, and treatment, were controlled for in a competing risk proportional hazards model. Patients were mostly male (64%), with mean age of 33.4 years. Survival rate was 73% after 8 years of follow-up. There were no significant survival differences based on age at diagnosis. However, AYAs who were on Medicaid (adjusted hazard ratio [aHR] = 1.61, 95% confidence interval [CI] 1.22-2.12) or uninsured (aHR = 1.51, 95% CI 1.03-2.21), had an increased hazard of death from HNC, compared with those with private insurance. Health insurance status is the main nonclinical factor associated with survival among AYAs with HNC, and individuals with Medicaid do not fare better than the uninsured. With a potential longer term follow-up in this AYA population, there is need to optimize survivorship irrespective of health insurance status.

A Review of the Oncology Patient's Challenges for Utilizing Fertility Preservation Services

PubMed Central

Flink, Dina M.; Sheeder, Jeanelle

2017-01-01

Purpose: The American Society of Clinical Oncology issued practice guidelines in 2006 to provide critical information about fertility impact to adolescents and young adults (AYA) at the time of cancer diagnosis. Survivors continue to express concerns about their long-term reproductive health after cancer therapy even as treatment options for fertility preservation evolve. An underutilization of fertility preservation methods by cancer patients continues to persist. A review of the literature cites barriers and challenges that limit fertility information and preservation options for AYA cancer patients. Methods: A review of medical literature was conducted to examine current practice for patients receiving fertility information and the barriers to patients receiving fertility preservation services. Results: A total of 69 publications were included in this review. The review summarizes (1) patient experiences with receiving fertility information and (2) patient desires, barriers, and challenges to utilizing fertility preservation services. Conclusions: Despite advances in fertility preservation, there are challenges for patients to utilizing fertility preservation services. Barriers include the following: urgency to initiate treatment, inadequate information, clinic time constraints, and perceptions around patients' gender, age, cost, parity, race, relationship, and sociodemographic status influence whether patients receive fertility preservation consultation. Patients report a lack of adequate information to make informed fertility decisions. PMID:27529573

Randomized clinical trial of therapeutic music video intervention for resilience outcomes in adolescents/young adults undergoing hematopoietic stem cell transplant: a report from the Children's Oncology Group.

PubMed

Robb, Sheri L; Burns, Debra S; Stegenga, Kristin A; Haut, Paul R; Monahan, Patrick O; Meza, Jane; Stump, Timothy E; Cherven, Brooke O; Docherty, Sharron L; Hendricks-Ferguson, Verna L; Kintner, Eileen K; Haight, Ann E; Wall, Donna A; Haase, Joan E

2014-03-15

To reduce the risk of adjustment problems associated with hematopoietic stem cell transplant (HSCT) for adolescents/young adults (AYAs), we examined efficacy of a therapeutic music video (TMV) intervention delivered during the acute phase of HSCT to: 1) increase protective factors of spiritual perspective, social integration, family environment, courageous coping, and hope-derived meaning; 2) decrease risk factors of illness-related distress and defensive coping; and 3) increase outcomes of self-transcendence and resilience. This was a multisite randomized, controlled trial (COG-ANUR0631) conducted at 8 Children's Oncology Group sites involving 113 AYAs aged 11-24 years undergoing myeloablative HSCT. Participants, randomized to the TMV or low-dose control (audiobooks) group, completed 6 sessions over 3 weeks with a board-certified music therapist. Variables were based on Haase's Resilience in Illness Model (RIM). Participants completed measures related to latent variables of illness-related distress, social integration, spiritual perspective, family environment, coping, hope-derived meaning, and resilience at baseline (T1), postintervention (T2), and 100 days posttransplant (T3). At T2, the TMV group reported significantly better courageous coping (Effect Size [ES], 0.505; P = .030). At T3, the TMV group reported significantly better social integration (ES, 0.543; P = .028) and family environment (ES, 0.663; P = .008), as well as moderate nonsignificant effect sizes for spiritual perspective (ES, 0.450; P = .071) and self-transcendence (ES, 0.424; P = .088). The TMV intervention improves positive health outcomes of courageous coping, social integration, and family environment during a high-risk cancer treatment. We recommend the TMV be examined in a broader population of AYAs with high-risk cancers. © 2013 American Cancer Society.

If you did not document it, it did not happen: rates of documentation of discussion of infertility risk in adolescent and young adult oncology patients' medical records.

PubMed

Quinn, Gwendolyn P; Block, Rebecca G; Clayman, Marla L; Kelvin, Joanne; Arvey, Sarah R; Lee, Ji-Hyun; Reinecke, Joyce; Sehovic, Ivana; Jacobsen, Paul B; Reed, Damon; Gonzalez, Luis; Vadaparampil, Susan T; Laronga, Christine; Lee, M Catherine; Pow-Sang, Julio; Eggly, Susan; Franklin, Anna; Shah, Bijal; Fulp, William J; Hayes-Lattin, Brandon

2015-03-01

The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers. All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist. Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% documented referral to a fertility specialist. Records were less likely to contain evidence of infertility risk and FP option discussions for female patients (P = .030 and .004, respectively) and those with breast cancer (P = .021 and < .001, respectively). Records for Hispanic/Latino patients were less likely to contain evidence of infertility risk discussion (P = .037). Records were less likely to document infertility risk discussion, FP option discussion, and fertility specialist referral for patients age ≥ 40 years (P < .001, < .001, and .002, respectively) and those who already had children (all P < .001). The overall rate of documentation of discussion of FP is low, and results show disparities among specific groups. Although greater numbers of discussions may be occurring, there is a need to create interventions to improve documentation. Copyright © 2014 by American Society of Clinical Oncology.

Illness appraisals and health-related quality of life in adolescents and young adults with allergies and asthma.

PubMed

Hullmann, Stephanie E; Eddington, Angelica R; Molzon, Elizabeth S; Mullins, Larry L

2013-01-01

The current study sought to: 1) assess differences in levels of physical and mental health-related quality of life (HRQOL), illness uncertainty, and intrusiveness in adolescents and young adults (AYAs) with allergies and asthma, as well as 2) examine the effect of illness appraisals on HRQOL. Participants were undergraduate students with self-reported allergies (n=74) and asthma (n=74) who completed the Mishel Uncertainty in Illness Scale (MUIS), the Illness Intrusiveness Scale (IIS), and the SF-36 Health Survey Questionnaire. Paired t-tests indicated that AYAs with allergies reported higher levels of illness uncertainty and poorer mental HRQOL than AYAs with asthma; the groups did not differ on reported levels of illness intrusiveness or physical HRQOL. Hierarchical regressions were conducted to examine the relationship between illness appraisals and HRQOL. Results revealed that poorer mental HRQOL was associated with higher illness uncertainty in AYAs with allergies and higher illness intrusiveness in AYAs with asthma. Poorer physical HRQOL was associated with higher illness uncertainty in AYAs with asthma and higher illness intrusiveness in AYAs with allergies and asthma. The current examination suggests that illness appraisals may be differentially related to HRQOL in AYAs with allergies compared to those with asthma.

Physical and psychosocial aspects of adolescent and young adults after allogeneic hematopoietic stem-cell transplantation: results from a prospective multicenter trial.

PubMed

Pulewka, Kristin; Wolff, Daniel; Herzberg, Philipp Y; Greinix, Hildegard; Heussner, Pia; Mumm, Friederike H A; von Harsdorf, Stephanie; Rieger, Kathrin; Hemmati, Philipp; Hochhaus, Andreas; Hilgendorf, Inken

2017-08-01

Allogeneic hematopoietic stem-cell transplantation (alloHSCT) is physically and psychosocially demanding. Among transplant recipients, adolescent and young adults (AYA) represent a special group, as disease occurs early in life, resulting in the prospect of long survival time and high burden of alloHSCT sequelae. However, data focusing on AYA undergoing alloHSCT are rare. Data resulting from a prospective multicenter trial initially focusing on graft-versus-host disease (GvHD) after alloHSCT were reused to analyse the differences between AYA and elderly patients. In total, data of 205 alloHSCT recipients were evaluated. Patients completed the FACT-BMT, HAP, SF-36, 24-AM, LOT-R, BSSS, HADS, and GvHD questionnaires. Median age of AYA and non-AYA patients was 29 and 52 years. Using 24-AM-Test, evaluating personality traits, non-AYA reported to be more conscientious (p = 0.033). However, AYA described higher quality of life regarding physical role functioning (p = 0.001), physical functioning (p = 0.002), bodily pain (p = 0.023), and emotional role function (p = 0.027) in the SF-36. General health perception, vitality, social role functioning, and mental health were comparable among both groups. On HAP scale, AYA reported higher maximum (p = 0.003) and adjusted activity scores (p = 0.002), but showed similar restrictions regarding activity, self-supply, and self-determination. AYA represent a particular group characterized by higher physical well-being and activity scores, and significantly vary from non-AYA patients in psychosocial aspects. Studies covering distinctive features of AYA undergoing alloHSCT are warranted to improve awareness of the special needs of this group.

Measuring Transition Readiness: A Correlational Study of Perceptions of Parent and Adolescents and Young Adults with Sickle Cell Disease.

PubMed

Speller-Brown, Barbara; Patterson Kelly, Katherine; VanGraafeiland, Brigit; Feetham, Suzanne; Sill, Anne; Darbari, Deepika; Meier, Emily R

2015-01-01

Adolescents and young adults (AYAs) often transfer from pediatric to adult care without adequate preparation, resulting in increased morbidity and mortality. The purpose of this descriptive research study of parent/AYA dyads was to measure perceptions of transition readiness. Factors that were found to be associated with perceptions of increased readiness to transition included AYA age, the amount of responsibility AYAs assume for their healthcare and the degree of parent involvement. More attention should be focused on these aspects of care to improve transition from pediatric to adult care for AYAs with sickle cell disease. Copyright © 2015 Elsevier Inc. All rights reserved.

Building a National Framework for Adolescent and Young Adult Hematology and Oncology and Transition from Pediatric to Adult Care: Report of the Inaugural Meeting of the "AjET" Working Group of the German Society for Pediatric Oncology and Hematology.

PubMed

Escherich, Gabriele; Bielack, Stefan; Maier, Stephan; Braungart, Ralf; Brümmendorf, Tim H; Freund, Mathias; Grosse, Regine; Hoferer, Anette; Kampschulte, Rebecca; Koch, Barbara; Lauten, Melchior; Milani, Valeria; Ross, Henning; Schilling, Freimut; Wöhrle, Dieter; Cario, Holger; Dirksen, Uta

2017-06-01

Adolescents and young adults (AYAs) with hemato-oncological problems constitute a heterogenous group with characteristic particularities, specific needs, and age-related clinical and unique psychosocial features. Strong collaboration between pediatric and adult hemato-oncology settings is essential to address their needs appropriately. This is not only true for patients who first become ill during adolescence or young adulthood, but equally so for people who contract hemato-oncological diseases congenitally or as younger children and who are now becoming old enough to leave the pediatric setting and have to transit into "adult" medical care. Efforts to create environments that meet the specific needs of the AYA population affected by hemato-oncological diseases have been initiated in many countries. Due to international variations between societies in general and healthcare infrastructures in particular, the challenges posed to creating such environments vary considerably from country to country. Aiming at addressing these on a national basis for Germany, a dedicated Working Group on Adolescents, Young Adults, and Transition (Arbeitsgemeinschaft Adoleszenten, junge Erwachsene, Transition, AjET) was established. This meeting report depicts the content and discussions of the first interdisciplinary conference on treatment, transition, and long-term follow-up in AYAs with cancer or chronic/inborn hematological diseases. The AjET group of the German Society for Pediatric Oncology and Hematology (GPOH) intends to increase the national awareness for AYAs; strengthen the collaboration of pediatric and adult care givers; and initiate, promote, and coordinate collaborative activities in the fields of basic and translational research, clinical care, and long-term follow-up aimed at improving the current situation.

Patient characteristics and outcomes in adolescents and young adults with classical Philadelphia chromosome-negative myeloproliferative neoplasms.

PubMed

Boddu, Prajwal; Masarova, Lucia; Verstovsek, Srdan; Strati, Paolo; Kantarjian, Hagop; Cortes, Jorge; Estrov, Zeev; Pierce, Sherry; Pemmaraju, Naveen

2018-01-01

Little is known about the outcomes of Philadelphia-negative myeloproliferative neoplasms (MPNs) in adolescents and young adults (AYA). We reviewed all patients with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF) treated at our institution from 1988 to 2016 who were aged 16 to 39 years (AYA) and described their outcomes in comparison to older MPN population. Of 2206 patients, 185 (8.3%) were identified as AYA: 105 (57%) ET, 43 (23%) PV, and 37 (20%) MF. The median age was 33 years [range, 16-39], and median follow-up time 3 years [range, 0.04-25]. JAK2 allele burdens were significantly lower among AYA JAK2V617F-mutated patients in both PV (p = 0.001) and MF (p = 0.005). Seven percent of MPN AYA patients were diagnosed with a thrombotic event at, or prior to, diagnosis. Over the short median follow-up, 4 thrombotic (PV = 1, MF = 3) and 3 leukemia (ET = 2, MF = 1) events occurred. In multivariate analysis, AYA did not predict for thrombotic or transformational events across three cohorts. In the MF cohort, there was a reduced frequency of negative prognostic variables of anemia (p = 0.011) and leukocytosis (p = 0.048) in AYA when compared with non-AYA. Overall survival was significantly superior in the AYA cohorts in all three MPN groups, namely MF (p < 0.001), PV (p < 0.001), and ET (p = 0.002). Our findings suggest that MPN AYA patients exhibit an indolent clinical phenotype characterized by favorable survival outcomes.

Age Matters: Increased Risk of Inconsistent HIV Care and Viremia Among Adolescents and Young Adults on Antiretroviral Therapy in Nigeria

PubMed Central

Ahonkhai, Aimalohi A.; Banigbe, Bolanle; Adeola, Juliet; Adegoke, Abdulkabir B.; Regan, Susan; Bassett, Ingrid V.; Idigbe, Ifeoma; Losina, Elena; Okonkwo, Prosper; Freedberg, Kenneth A.

2016-01-01

Purpose Interruptions in HIV care are a major cause of morbidity and mortality, particularly in resource-limited settings. We compared engagement in care and virologic outcomes between HIV-infected adolescents and young adults (AYA) and older adults (OA) one year after starting antiretroviral therapy (ART) in Nigeria. Methods We conducted a retrospective cohort study of AYA (15–24 years) and OA (>24 years) who initiated ART from 2009–2011. We used negative binomial regression to model the risk of inconsistent care and viremia (HIV RNA >1,000 copies/mL) among AYA and OA in the first year on ART. Regular care included monthly ART pick-up and 3-monthly clinical visits. Patients with ≤3 months between consecutive visits were considered in care. Those with inconsistent care had >3 months between consecutive visits. Results The cohort included 354 AYA and 2,140 OA. More AYA than OA were female (89% vs. 65%, p<0.001). Median baseline CD4 was 252/µL in AYA and 204/µL in OA (p=0.002). More AYA had inconsistent care than OA (55% vs. 47%, p=0.001). Adjusting for sex, baseline CD4, and education, AYA had a greater risk of inconsistent care than OA (RR 1.11, p=0.033). Among those in care after one year on ART, viremia was more common in AYA than OA (40% vs. 26% p=0.003, RR 1.53, p=0.002). Conclusions In a Nigerian cohort, AYA were at increased risk for inconsistent HIV care. Of patients remaining in care, youth was the only independent predictor of viremia at 1 year. Youth-friendly models of HIV care are needed to optimize health outcomes. PMID:27329680

Disparities in fertility-sparing surgery in adolescent and young women with stage I ovarian dysgerminoma.

PubMed

Stafman, Laura L; Maizlin, Ilan I; Dellinger, Matthew; Gow, Kenneth W; Goldfarb, Melanie; Nuchtern, Jed G; Langer, Monica; Vasudevan, Sanjeev A; Doski, John J; Goldin, Adam B; Raval, Mehul; Beierle, Elizabeth A

2018-04-01

In many cancers, racial and socioeconomic disparities exist regarding the extent of surgery. For ovarian dysgerminoma, fertility-sparing (FS) surgery is recommended whenever possible. The aim of this study was to investigate rates of FS versus non-fertility-sparing (NFS) procedures for stage I ovarian dysgerminoma in adolescents and young adults (AYAs) by ethnicity/race and socioeconomic status. The National Cancer Data Base was queried for patients with ovarian dysgerminoma from 1998 to 2012. After selecting patients aged 15-39 y with stage I disease, a multivariate regression analysis was performed, and rates of FS and NFS procedures were compared, first according to ethnicity/race, and then by socioeconomic surrogate variables. Among the 687 AYAs with stage I ovarian dysgerminoma, there was no significant difference in rates of FS and NFS procedures based on ethnicity/race alone (P = 0.17), but there was a significant difference in procedure type for all three socioeconomic surrogates. The uninsured had higher NFS rates (30%) than those with government (21%) or private (19%) insurance (P = 0.036). Those in the poorest ZIP codes had almost twice the rate of NFS procedures (31%) compared with those in the most affluent ZIP codes (17%). For those in the least-educated regions, 24% underwent NFS procedures compared to 14% in the most-educated areas (P = 0.027). AYAs with stage I ovarian dysgerminoma in lower socioeconomic groups were more likely to undergo NFS procedures than those in higher socioeconomic groups, but there was no difference in rates of FS versus NFS procedures by ethnicity/race. Approaches aimed at reducing socioeconomic disparities require further examination. Copyright © 2017 Elsevier Inc. All rights reserved.

Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemoperfusion in Adolescent and Young Adults with Peritoneal Metastases.

PubMed

Dhir, Mashaal; Ramalingam, Lekshmi; Shuai, Yongli; Pakrafter, Sam; Jones, Heather L; Hogg, Melissa E; Zureikat, Amer H; Holtzman, Matthew P; Ahrendt, Steven A; Bahary, Nathan; Pingpank, James F; Zeh, Herbert J; Bartlett, David L; Choudry, Haroon A

2017-04-01

Several studies suggest that young patients may derive less oncologic benefit from surgical resection of cancers compared with older patients. We hypothesized that young patients may have worse outcomes following cytoreductive surgery with hyperthermic intraperitoneal chemoperfusion (CRS/HIPEC) for peritoneal metastases. Perioperative and oncologic outcomes in adolescent and young adults (AYA), defined as younger than age 40 years (n = 135), undergoing CRS/HIPEC between 2001 and 2015 were reviewed and compared with middle-aged adults, defined as aged 40-65 years (n = 684). The two groups were similar with regards to perioperative characteristics except that AYA were more likely to be symptomatic at presentation (65.2 vs. 50.9%, p = 0.003), had lower Charleson comorbidity index (median 6 vs. 8, p < 0.001), were less likely to receive neoadjuvant chemotherapy (32.8 vs. 42.5%, p = 0.042), and had longer operative times (median 543 vs. 493 min, p = 0.010). Postoperative Clavien-Dindo grade 3-4 morbidity was lower in AYA (17 vs. 26%, p = 0.029), and they required fewer reoperations for complications (3.7 vs. 10.4%, p = 0.014). AYA had longer median overall survival (103.6 vs. 73.2 months, p = 0.053). In a multivariate Cox regression analysis, age was an independent predictor of improved overall survival [hazard ratio 0.705; 0.516-0.963, p = 0.028]. Young patients with peritoneal metastases derive similar benefits from CRS/HIPEC as middle-aged patients. Young age should not be a deterrent to consideration of CRS/HIPEC for peritoneal metastases.

Patterns of family management for adolescent and young adult brain tumor survivors.

PubMed

Deatrick, Janet A; Barakat, Lamia P; Knafl, George J; Hobbie, Wendy; Ogle, Sue; Ginsberg, Jill P; Fisher, Michael J; Hardie, Thomas; Reilly, Maureen; Broden, Elizabeth; Toth, Jennifer; SanGiacomo, Nicole; Knafl, Kathleen A

2018-04-01

Little is known about how families systemically incorporate the work of caring for adolescent and young adult (AYA) survivors of childhood brain tumors who often remain dependent on their families well into adulthood. The primary aim of this study was to develop a typology of family management (FM) patterns for AYA survivors. The secondary aims were to compare them with FM patterns previously described for children with chronic health conditions and to validate the patterns using quantitative and qualitative data. Guided by the Family Management Styles Framework, a sequential, mixed-methods design was used to gather quantitative data from 186 mothers (primary caregivers) and 134 AYA survivors. FM patterns (family focused; somewhat family focused; somewhat condition focused; and condition focused) were identified using cluster analysis of data from the Family Management Measure. FM patterns were found to be similar to those for children with chronic health physical conditions and were significantly related to maternal quality of life, survivor quality of life (health-related quality of life [self- and mother proxy report]), cancer-related variables (treatment intensity, medical late effects), and family functioning in theoretically meaningfully ways. Significant demographic characteristics included private insurance and AYA survivors' engagement in school or employment. Qualitative analysis of data from 45 interviews with mothers from the larger sample provided additional support for and elaborated descriptions of FM patterns. Identification of FM patterns moves the science of family caregiving forward by aggregating data into a conceptually based typology, thereby taking into account the complex intersection of the condition, the family, and condition management. (PsycINFO Database Record (c) 2018 APA, all rights reserved).

Recurrent DUX4 fusions in B cell acute lymphoblastic leukemia of adolescents and young adults.

PubMed

Yasuda, Takahiko; Tsuzuki, Shinobu; Kawazu, Masahito; Hayakawa, Fumihiko; Kojima, Shinya; Ueno, Toshihide; Imoto, Naoto; Kohsaka, Shinji; Kunita, Akiko; Doi, Koichiro; Sakura, Toru; Yujiri, Toshiaki; Kondo, Eisei; Fujimaki, Katsumichi; Ueda, Yasunori; Aoyama, Yasutaka; Ohtake, Shigeki; Takita, Junko; Sai, Eirin; Taniwaki, Masafumi; Kurokawa, Mineo; Morishita, Shinichi; Fukayama, Masashi; Kiyoi, Hitoshi; Miyazaki, Yasushi; Naoe, Tomoki; Mano, Hiroyuki

2016-05-01

The oncogenic mechanisms underlying acute lymphoblastic leukemia (ALL) in adolescents and young adults (AYA; 15-39 years old) remain largely elusive. Here we have searched for new oncogenes in AYA-ALL by performing RNA-seq analysis of Philadelphia chromosome (Ph)-negative AYA-ALL specimens (n = 73) with the use of a next-generation sequencer. Interestingly, insertion of D4Z4 repeats containing the DUX4 gene into the IGH locus was frequently identified in B cell AYA-ALL, leading to a high level of expression of DUX4 protein with an aberrant C terminus. A transplantation assay in mice demonstrated that expression of DUX4-IGH in pro-B cells was capable of generating B cell leukemia in vivo. DUX4 fusions were preferentially detected in the AYA generation. Our data thus show that DUX4 can become an oncogenic driver as a result of somatic chromosomal rearrangements and that AYA-ALL may be a clinical entity distinct from ALL at other ages.

The current state of research on ayahuasca: A systematic review of human studies assessing psychiatric symptoms, neuropsychological functioning, and neuroimaging.

PubMed

Dos Santos, Rafael G; Balthazar, Fermanda M; Bouso, José C; Hallak, Jaime Ec

2016-12-01

In recent decades, the use of ayahuasca (AYA) - a β-carboline- and dimethyltryptamine-rich hallucinogenic botanical preparation traditionally used by Northwestern Amazonian tribes for ritual and therapeutic purposes - has spread from South America to Europe and the USA, raising concerns about its possible toxicity and hopes of its therapeutic potential. Thus, it is important to analyze the acute, subacute, and long-term effects of AYA to assess its safety and toxicity. The purpose of this study was to conduct a systematic review of human studies assessing AYA effects on psychiatric symptoms, neuropsychological functioning, and neuroimaging. Papers published until 16 December 2015 were included from PubMed, LILACS and SciELO databases following a comprehensive search strategy and pre-determined set of criteria for article selection. The review included 28 full-text articles. Acute AYA administration was well tolerated, increased introspection and positive mood, altered visual perceptions, activated frontal and paralimbic regions and decreased default mode network activity. It also improved planning and inhibitory control and impaired working memory, and showed antidepressive and antiaddictive potentials. Long-term AYA use was associated with increased cortical thickness of the anterior cingulate cortex and cortical thinning of the posterior cingulate cortex, which was inversely correlated to age of onset, intensity of prior AYA use, and spirituality. Subacute and long-term AYA use was not associated with increased psychopathology or cognitive deficits, being associated with enhanced mood and cognition, increased spirituality, and reduced impulsivity. Acute, subacute, and long-term AYA use seems to have low toxicity. Preliminary studies about potential therapeutic effects of AYA need replication due to their methodological limitations. © The Author(s) 2016.

Development and evaluation of iManage: A self-management app co-designed by adolescents with sickle cell disease.

PubMed

Crosby, Lori E; Ware, Russell E; Goldstein, Alana; Walton, Ashley; Joffe, Naomi E; Vogel, Craig; Britto, Maria T

2017-01-01

Adolescents and young adults (AYAs) with sickle cell disease (SCD) are a vulnerable population with high risk of morbidity that could be decreased with effective self-management. Previous research suggests that mobile applications (apps) may facilitate AYA engagement in health-promoting behaviors. The objectives of this study were: (i) describe Internet access and use in AYA with SCD; (ii) identify barriers for self-management in this population; (iii) collaborate with AYA to co-design a mobile app that would minimize barriers; and (iv) evaluate the feasibility and acceptability of the app. In phase 1, 46 AYAs with SCD 16-24 years of age completed a survey of Internet access and use. During phase 2, 19 AYAs with SCD (average age 20 ± 2.5 years) and eight healthcare providers participated in interviews to identify barriers and co-design sessions to develop the app. In phase 3, five AYAs with SCD completed app feasibility and usability testing. AYAs with SCD had daily Internet access (69%) using their computers (84%) or mobile phones (70%). Participants went online for health information (71%) and preferred Web sites with interactive/social features (83%). Barriers to self-management included failing to believe that their health would suffer, lack of tailored self-management support, lack of a mechanism to visualize self-management progress, and limited opportunities for peer interaction around self-management. The prototype app (iManage) was rated as highly feasible and beneficial. A mobile app prototype co-designed by AYAs with SCD may be a useful tool for engaging them in self-management strategies designed to improve health. © 2016 Wiley Periodicals, Inc.

How I treat acute lymphoblastic leukemia in older adolescents and young adults

PubMed Central

Curran, Emily

2015-01-01

At the intersection between children and older adults, the care of adolescent and young adult (AYA) patients with acute lymphoblastic leukemia (ALL) poses unique challenges and issues beyond those faced by other age groups. Although the survival of AYA patients is inferior to younger children, growing evidence suggests that AYA patients have improved outcomes, with disease-free survival rates of 60% to 70%, when treated with pediatric-based approaches. A holistic approach, incorporating a multidisciplinary team, is a key component of successful treatment of these AYA patients. With the appropriate support and management of toxicities during and following treatment, these regimens are well tolerated in the AYA population. Even with the significant progress that has been made during the last decade, patients with persistence of minimal residual disease (MRD) during intensive therapy still have a poor prognosis. With new insights into disease pathogenesis in AYA ALL and the availability of disease-specific kinase inhibitors and novel targeted antibodies, future studies will focus on individualized therapy to eradicate MRD and result in further improvements in survival. This case-based review will discuss the biology, pharmacology, and psychosocial aspects of AYA patients with ALL, highlighting our current approach to the management of these unique patients. PMID:25805810

How I treat acute lymphoblastic leukemia in older adolescents and young adults.

PubMed

Curran, Emily; Stock, Wendy

2015-06-11

At the intersection between children and older adults, the care of adolescent and young adult (AYA) patients with acute lymphoblastic leukemia (ALL) poses unique challenges and issues beyond those faced by other age groups. Although the survival of AYA patients is inferior to younger children, growing evidence suggests that AYA patients have improved outcomes, with disease-free survival rates of 60% to 70%, when treated with pediatric-based approaches. A holistic approach, incorporating a multidisciplinary team, is a key component of successful treatment of these AYA patients. With the appropriate support and management of toxicities during and following treatment, these regimens are well tolerated in the AYA population. Even with the significant progress that has been made during the last decade, patients with persistence of minimal residual disease (MRD) during intensive therapy still have a poor prognosis. With new insights into disease pathogenesis in AYA ALL and the availability of disease-specific kinase inhibitors and novel targeted antibodies, future studies will focus on individualized therapy to eradicate MRD and result in further improvements in survival. This case-based review will discuss the biology, pharmacology, and psychosocial aspects of AYA patients with ALL, highlighting our current approach to the management of these unique patients. © 2015 by The American Society of Hematology.

Pediatric-Inspired Treatment Regimens for Adolescents and Young Adults With Philadelphia Chromosome-Negative Acute Lymphoblastic Leukemia: A Review.

PubMed

Siegel, Stuart E; Stock, Wendy; Johnson, Rebecca H; Advani, Anjali; Muffly, Lori; Douer, Dan; Reed, Damon; Lewis, Mark; Freyer, David R; Shah, Bijal; Luger, Selina; Hayes-Lattin, Brandon; Jaboin, Jerry J; Coccia, Peter F; DeAngelo, Daniel J; Seibel, Nita; Bleyer, Archie

2018-05-01

The incidence of acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma (LBL) in adolescent and young adult (AYA) patients (age range, 15-39 years) in the United States is increasing at a greater rate than in younger or older persons. Their optimal treatment has been increasingly debated as pediatric regimens have become more widely used in the age group. This review compares the basic features of pediatric and adult chemotherapy regimens for ALL and LBL, recognizes and describes the challenges of the pediatric regimen, and suggests strategies to facilitate its adoption for AYAs with ALL and LBL. All but 2 of 25 published comparisons of outcomes with pediatric and adult regimens for ALL and LBL in AYAs and 1 meta-analysis favor the pediatric regimen. After more than a half-century of clinical trials of the pediatric regimens, including at least 160 phase 3 trials in the United States, the pediatric regimens have become far more complex than most adult regimens. Asparaginase, a critical component of the pediatric regimens, is more difficult to administer to AYAs (and older patients) but nonetheless has a favorable benefit to toxicity ratio for AYAs. A dramatic reduction in outcome of ALL and LBL during the AYA years (the "survival cliff") is coincident with similar reductions in proportions of AYAs referred to academic centers and enrolled on clinical trials (the "accrual cliff" and "referral cliff"). The accumulating data increasingly support treating AYAs with ALL and LBL with a pediatric-inspired regimen or an approved institutional or national clinical trial tailored for this patient group. A need to develop clinical trials specifically for AYAs and to encourage their participation is paramount, with a goal to improve both the quantity and quality of survival.

Randomized Clinical Trial of Therapeutic Music Video Intervention for Resilience Outcomes in Adolescents/Young Adults Undergoing Hematopoietic Stem Cell Transplant: A Report from the Children’s Oncology Group

PubMed Central

Robb, Sheri L.; Burns, Debra S.; Stegenga, Kristin A.; Haut, Paul R.; Monahan, Patrick O.; Meza, Jane; Stump, Timothy E.; Cherven, Brooke O.; Docherty, Sharron L.; Hendricks-Ferguson, Verna L.; Kintner, Eileen K.; Haight, Ann E.; Wall, Donna A.; Haase, Joan E.

2013-01-01

Background To reduce the risk of adjustment problems associated with Hematopoietic Stem Cell Transplant (HSCT) for adolescents/young adults (AYA), we examined efficacy of a therapeutic music video (TMV) intervention delivered during the acute phase of HSCT to: (a) increase protective factors of spiritual perspective, social integration, family environment, courageous coping, and hope-derived meaning; (b) decrease risk factors of illness-related distress and defensive coping; and (c) increase outcomes of self-transcendence and resilience. Methods A multi-site, randomized controlled trial (COG-ANUR0631) conducted at 8 Children’s Oncology Group sites involving 113 AYA aged 11–24 years undergoing myeloablative HSCT. Participants, randomized to the TMV or low-dose control (audiobooks) group, completed 6 sessions over 3 weeks with a board-certified music therapist. Variables were based on Haase’s Resilience in Illness Model. Participants completed measures related to latent variables of illness-related distress, social integration, spiritual perspective, family environment, coping, hope-derived meaning and resilience at baseline (T1), post-intervention (T2), and 100-days post-transplant (T3). Results At T2, the TMV group reported significantly better courageous coping (ES=0.505; P=0.030). At T3, the TMV group reported significantly better social integration (ES=0.543; P=.028) and family environment (ES=0.663; P=0.008), as well as moderate non-significant effect sizes for spiritual perspective (E=0.450; P=0.071) and self-transcendence (ES=0.424; P=0.088). Conclusion The TMV intervention improves positive health outcomes of courageous coping, social integration, and family environment during a high risk cancer treatment. We recommend the TMV be examined in a broader population of AYA with high risk cancers. PMID:24469862

Antidepressant effects of a single dose of ayahuasca in patients with recurrent depression: a preliminary report.

PubMed

Osório, Flávia de L; Sanches, Rafael F; Macedo, Ligia R; Santos, Rafael G dos; Maia-de-Oliveira, João P; Wichert-Ana, Lauro; Araujo, Draulio B de; Riba, Jordi; Crippa, José A; Hallak, Jaime E

2015-01-01

Ayahuasca (AYA), a natural psychedelic brew prepared from Amazonian plants and rich in dimethyltryptamine (DMT) and harmine, causes effects of subjective well-being and may therefore have antidepressant actions. This study sought to evaluate the effects of a single dose of AYA in six volunteers with a current depressive episode. Open-label trial conducted in an inpatient psychiatric unit. Statistically significant reductions of up to 82% in depressive scores were observed between baseline and 1, 7, and 21 days after AYA administration, as measured on the Hamilton Rating Scale for Depression (HAM-D), the Montgomery-Åsberg Depression Rating Scale (MADRS), and the Anxious-Depression subscale of the Brief Psychiatric Rating Scale (BPRS). AYA administration resulted in nonsignificant changes in Young Mania Rating Scale (YMRS) scores and in the thinking disorder subscale of the BPRS, suggesting that AYA does not induce episodes of mania and/or hypomania in patients with mood disorders and that modifications in thought content, which could indicate psychedelic effects, are not essential for mood improvement. These results suggest that AYA has fast-acting anxiolytic and antidepressant effects in patients with a depressive disorder.

Acute lymphoblastic leukemia in adolescents and young adults.

PubMed

Burke, Patrick W; Douer, Dan

2014-01-01

The cure rate of acute lymphoblastic leukemia (ALL) in children is 80%, compared to less than half in adults. A major proportion of this cure rate drop occurs in adolescents and young adults (AYAs). The age range defining this population varies between studies, biological characteristics are different from both younger children and older adults, and AYAs are treated either by pediatric or adult oncologists, who often apply different treatment approaches to the same ALL patient population. The outcome of AYAs aged 15-21 years treated by more contemporary pediatric protocols is similar to that of younger children but is inferior when using adult regimens. This motivated studying AYA patients, including those above the age of 21 years, with pediatric or 'pediatrics-inspired' regimens that intensified nonmyelosuppressive drugs such as vincristine, steroids and asparaginase, with very promising preliminary results. Discovering new mutations in AYA ALL will help stratify patients into risk subgroups and identify targets for novel agents. This, together with fine-tuning pediatric chemotherapy principles will hopefully finally decrease the cure rate gap between children and AYAs - and even older adults. © 2014 S. Karger AG, Basel.

Outcome differences between children and adolescents and young adults with non-Hodgkin lymphoma following stem cell transplantation.

PubMed

Kobayashi, Ryoji; Mitsui, Tetsuo; Fujita, Naoto; Osumi, Tomoo; Aoki, Tomohiro; Aoki, Kazunari; Suzuki, Ritsuro; Fukuda, Takahiro; Miyamoto, Toshihiro; Kato, Koji; Nakamae, Hirohisa; Goto, Hiroaki; Eto, Tetsuya; Inoue, Masami; Mori, Takehiko; Terui, Kiminori; Onizuka, Masahito; Koh, Katsuyoshi; Koga, Yuhki; Ichinohe, Tatsuo; Sawada, Akihisa; Atsuta, Yoshiko; Suzumiya, Junji

2017-03-01

Several studies of patients with acute lymphoblastic leukemia and acute myeloid leukemia who received stem cell transplantation (SCT) have reported that adolescents and young adults (AYAs) experience higher transplant-related mortality than that in younger children. However, to the best of our knowledge, there have been no reports of a similar comparison of non-Hodgkin lymphoma (NHL) patients who received SCT. We analyzed 918 patients aged 30 years and younger who received their first stem cell transplantation for NHL. Of the allogeneic transplant patients, children and AYAs did not significantly differ in survival rate, event-free survival rate, relapse rate, or transplant-related mortality. However, 5-year transplant-related mortality after autologous transplantation was significantly higher in children than in AYAs (5.1% in children vs. 0.8% in AYAs, P = 0.0043). The cause of transplant-related death in three of four children was interstitial pneumonitis. In NHL patients, transplantation results in AYAs were not inferior than those in children.

Impact of an Individual Mandate and Other Health Reforms on Dependent Coverage for Adolescents and Young Adults.

PubMed

Wisk, Lauren E; Finkelstein, Jonathan A; Toomey, Sara L; Sawicki, Gregory S; Schuster, Mark A; Galbraith, Alison A

2018-06-01

To determine the effect of state-level dependent coverage expansion (DCE) with and without other state health reforms on exit from dependent coverage for adolescents and young adults (AYA). Administrative longitudinal data for 131,542 privately insured AYA in Massachusetts (DCE with other reforms) versus Maine and New Hampshire (DCE without other reforms) across three periods: prereform (1/00-12/06), poststate reform (1/07-9/10), and postfederal reform (10/10-12/12). A difference-in-differences estimator was used to determine the rate of exit from dependent coverage, age at exit from dependent coverage, and re-uptake of dependent coverage among AYA in states with comprehensive reforms versus DCE only. Implementation of DCE with other reforms was significantly associated with a 23 percent reduction in exit from dependent coverage among AYA compared to the reduction observed for DCE alone. Additionally, comprehensive reforms were associated with over two additional years of dependent coverage for the average AYA and a 33 percent increase in the odds of regaining dependent coverage after a prior loss. Findings suggest that an individual mandate and other reforms may enhance the effect of DCE in preventing loss of coverage among AYA. © Health Research and Educational Trust.

Effects of ayahuasca on the development of ethanol-induced behavioral sensitization and on a post-sensitization treatment in mice.

PubMed

Oliveira-Lima, A J; Santos, R; Hollais, A W; Gerardi-Junior, C A; Baldaia, M A; Wuo-Silva, R; Yokoyama, T S; Costa, J L; Malpezzi-Marinho, E L A; Ribeiro-Barbosa, P C; Berro, L F; Frussa-Filho, R; Marinho, E A V

2015-04-01

Hallucinogenic drugs were used to treat alcoholic patients in the past, and recent developments in the study of hallucinogens led to a renewal of interest regarding the application of these drugs in the treatment of addiction. In this scenario, accumulating evidence suggests that the hallucinogenic brew ayahuasca (Aya) may have therapeutic effects on substance abuse problems. We investigated the effects of Aya on spontaneous locomotor activity and ethanol(Eth)-induced hyperlocomotion and subsequent locomotor sensitization by a two-injection protocol. Additionally, we tested the effect of Aya on an 8-day counter-sensitization protocol to modify sensitized responses induced by a repeated treatment with Eth (1.8g/kg) for 8 alternate days. Aya showed high sensitivity in preventing the development of Eth-induced behavioral sensitization, attenuating it at all doses (30, 100, 200, 300 or 500 mg/kg) without modifying spontaneous locomotor activity. At the highest doses (300 and 500 mg/kg), Aya also showed selectivity to both acute and sensitized Eth responses. Finally, a counter-sensitization strategy with 100 or 300 mg/kg of Aya for 8 consecutive days after the establishment of Eth-induced behavioral sensitization was effective in blocking its subsequent expression on an Eth challenge. We demonstrated that Aya not only inhibits early behaviors associated with the initiation and development of Eth addiction, but also showed effectiveness in reversing long-term drug effects expression, inhibiting the reinstatement of Eth-induced behavioral sensitization when administered in the Eth-associated environment. Copyright © 2015 Elsevier Inc. All rights reserved.

Young adult and parent stakeholder perspectives on participation in patient-centered comparative effectiveness research.

PubMed

Saunders, Tully; Mackie, Thomas I; Shah, Supriya; Gooding, Holly; de Ferranti, Sarah D; Leslie, Laurel K

2016-08-01

Explore perspectives of adolescent and young adult (AYA) and parent stakeholders regarding their engagement in comparative effectiveness research (CER) evaluating cholesterol screening and treatment strategies for 17-21 year olds. All nine AYAs and parent stakeholders participating in a 20-member panel of AYAs, parents and professionals (i.e., clinicians, researchers, policy makers, payers), completed a quantitative survey and a semistructured interview at the completion of the core CER study. AYAs and parents stakeholders emphasized the role of power differentials regarding shared knowledge, relationships and trust, and logistics. To mitigate power differentials, stakeholders recommended more materials, clearer definition of roles and in-person meetings. Perceived positive outcomes included diversity of perspectives provided, better understanding their own health and decision-making and improving CER.

The impact of the African Youth Alliance program on the sexual behavior of young people in Uganda.

PubMed

Karim, Ali Mehryar; Williams, Timothy; Patykewich, Leslie; Ali, Disha; Colvin, Charlotte E; Posner, Jessica; Rutaremwa, Gideon

2009-12-01

This study evaluates the impact of the African Youth Alliance (AYA) program on the sexual behavior of young people aged 17-22 in Uganda. Between 2000 and 2005, the comprehensive multicomponent AYA program implemented behavior-change communication and youth-friendly clinical services, and it coordinated policy and advocacy. The program provided institutional capacity building and established coordination mechanisms between agencies that implemented programs for young people. The analysis of findings from both a self-reported exposure design and a static group comparison design indicated that AYA had a positive impact on sexual behavior among young females but not among young males. AYA-exposed girls were at least 13 percentage points more likely to report having used a condom at last sex, at least 10 percentage points more likely to report that they had consistently used condoms with their current partner, at least 10 percentage points more likely to have used contraceptives at last sex, and 13 percentage points more likely to have had fewer sex partners during the past 12 months, compared with girls who were not exposed to the AYA program. Scaling up the AYA program in Uganda could, therefore, be expected to improve significantly the sexual and reproductive health of young women. Effective strategies for promoting safer sexual behaviors among boys and young men must be identified, however.

A genome-wide association study of susceptibility to acute lymphoblastic leukemia in adolescents and young adults.

PubMed

Perez-Andreu, Virginia; Roberts, Kathryn G; Xu, Heng; Smith, Colton; Zhang, Hui; Yang, Wenjian; Harvey, Richard C; Payne-Turner, Debbie; Devidas, Meenakshi; Cheng, I-Ming; Carroll, William L; Heerema, Nyla A; Carroll, Andrew J; Raetz, Elizabeth A; Gastier-Foster, Julie M; Marcucci, Guido; Bloomfield, Clara D; Mrózek, Krzysztof; Kohlschmidt, Jessica; Stock, Wendy; Kornblau, Steven M; Konopleva, Marina; Paietta, Elisabeth; Rowe, Jacob M; Luger, Selina M; Tallman, Martin S; Dean, Michael; Burchard, Esteban G; Torgerson, Dara G; Yue, Feng; Wang, Yanli; Pui, Ching-Hon; Jeha, Sima; Relling, Mary V; Evans, William E; Gerhard, Daniela S; Loh, Mignon L; Willman, Cheryl L; Hunger, Stephen P; Mullighan, Charles G; Yang, Jun J

2015-01-22

Acute lymphoblastic leukemia (ALL) in adolescents and young adults (AYA) is characterized by distinct presenting features and inferior prognosis compared with pediatric ALL. We performed a genome-wide association study (GWAS) to comprehensively identify inherited genetic variants associated with susceptibility to AYA ALL. In the discovery GWAS, we compared genotype frequency at 635 297 single nucleotide polymorphisms (SNPs) in 308 AYA ALL cases and 6,661 non-ALL controls by using a logistic regression model with genetic ancestry as a covariate. SNPs that reached P ≤ 5 × 10(-8) in GWAS were tested in an independent cohort of 162 AYA ALL cases and 5,755 non-ALL controls. We identified a single genome-wide significant susceptibility locus in GATA3: rs3824662, odds ratio (OR), 1.77 (P = 2.8 × 10(-10)) and rs3781093, OR, 1.73 (P = 3.2 × 10(-9)). These findings were validated in the replication cohort. The risk allele at rs3824662 was most frequent in Philadelphia chromosome (Ph)-like ALL but also conferred susceptibility to non-Ph-like ALL in AYAs. In 1,827 non-selected ALL cases, the risk allele frequency at this SNP was positively correlated with age at diagnosis (P = 6.29 × 10(-11)). Our results from this first GWAS of AYA ALL susceptibility point to unique biology underlying leukemogenesis and potentially distinct disease etiology by age group.

Executive Functioning, Barriers to Adherence, and Nonadherence in Adolescent and Young Adult Transplant Recipients.

PubMed

Gutiérrez-Colina, Ana M; Eaton, Cyd K; Lee, Jennifer L; Reed-Knight, Bonney; Loiselle, Kristin; Mee, Laura L; LaMotte, Julia; Liverman, Rochelle; Blount, Ronald L

2016-08-01

OBJECTIVE : To evaluate levels of executive functioning in a sample of adolescent and young adult (AYA) transplant recipients, and to examine executive functioning in association with barriers to adherence and medication nonadherence.  METHOD : In all, 41 caregivers and 39 AYAs were administered self- and proxy-report measures.  RESULTS : AYA transplant recipients have significant impairments in executive functioning abilities. Greater dysfunction in specific domains of executive functioning was significantly associated with more barriers to adherence and greater medication nonadherence.  CONCLUSION : AYA transplant recipients are at increased risk for executive dysfunction. The assessment of executive functioning abilities may guide intervention efforts designed to decrease barriers to adherence and promote developmentally appropriate levels of treatment responsibility. © The Author 2015. Published by Oxford University Press on behalf of the Society of Pediatric Psychology. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Pilot of the Chronic Disease Self-Management Program (CDSMP) for Adolescents and Young Adults with Sickle Cell Disease

PubMed Central

Crosby, Lori E.; Joffe, Naomi E.; Peugh, James; Ware, Russell E.; Britto, Maria T.

2016-01-01

Purpose This study evaluated the feasibility of a group self-management intervention, the well-established Stanford Chronic Disease Self-Management Program (CDSMP), for adolescents and young adults (AYA) with sickle cell disease (SCD). Methods A total of 22 AYA participants with SCD, ages 16 to 24 years, completed self-efficacy and quality of life (HRQOL) measures before the CDSMP, after, and 3 and 6 months later. Results This AYA cohort showed significant improvements in self-efficacy (primary outcome) after the intervention. Analyses of follow-up data revealed a medium effect of the CDSMP on patient activation 3 months post although this was not sustained. Participants were highly satisfied, but only 64% completed the program. Conclusions This study demonstrates that the CDSMP is acceptable, and has the ability to improve self-efficacy. Additional research is needed to determine feasibility and evaluate health outcomes for AYA with SCD. PMID:27793727

Fighting the Russians in Winter: Three Case Studies (Leavenworth Papers, Number 5)

DTIC Science & Technology

1981-12-01

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Pilot of the Chronic Disease Self-Management Program for Adolescents and Young Adults With Sickle Cell Disease.

PubMed

Crosby, Lori E; Joffe, Naomi E; Peugh, James; Ware, Russell E; Britto, Maria T

2017-01-01

This study evaluated the feasibility of a group self-management intervention, the well-established Stanford Chronic Disease Self-Management Program (CDSMP), for adolescents and young adults (AYA) with sickle cell disease (SCD). A total of 22 AYA participants with SCD, ages 16-24 years, completed self-efficacy and quality of life measures before the CDSMP, after, and 3 and 6 months later. This AYA cohort showed significant improvements in self-efficacy (primary outcome) after the intervention. Analyses of follow-up data revealed a medium effect of the CDSMP on patient activation 3 months post although this was not sustained. Participants were highly satisfied, but only 64% completed the program. This study demonstrates that the CDSMP is acceptable and has the ability to improve self-efficacy. Additional research is needed to determine feasibility and evaluate health outcomes for AYA with SCD. Copyright © 2016 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

Continuous quality improvement intervention for adolescent and young adult HIV testing services in Kenya improves HIV knowledge

PubMed Central

Wagner, Anjuli D.; Mugo, Cyrus; Bluemer-Miroite, Shay; Mutiti, Peter M.; Wamalwa, Dalton C.; Bukusi, David; Neary, Jillian; Njuguna, Irene N.; O’Malley, Gabrielle; John-Stewart, Grace C.; Slyker, Jennifer A.; Kohler, Pamela K.

2017-01-01

Objectives: To determine whether continuous quality improvement (CQI) improves quality of HIV testing services for adolescents and young adults (AYA). Design: CQI was introduced at two HIV testing settings: Youth Centre and Voluntary Counseling and Testing (VCT) Center, at a national referral hospital in Nairobi, Kenya. Methods: Primary outcomes were AYA satisfaction with HIV testing services, intent to return, and accurate HIV prevention and transmission knowledge. Healthcare worker (HCW) satisfaction assessed staff morale. T tests and interrupted time series analysis using Prais–Winsten regression and generalized estimating equations accounting for temporal trends and autocorrelation were conducted. Results: There were 172 AYA (Youth Centre = 109, VCT = 63) during 6 baseline weeks and 702 (Youth Centre = 454, VCT = 248) during 24 intervention weeks. CQI was associated with an immediate increase in the proportion of AYA with accurate knowledge of HIV transmission at Youth Centre: 18 vs. 63% [adjusted risk difference (aRD) 0.42,95% confidence interval (CI) 0.21 to 0.63], and a trend at VCT: 38 vs. 72% (aRD 0.30, 95% CI −0.04 to 0.63). CQI was associated with an increase in the proportion of AYA with accurate HIV prevention knowledge in VCT: 46 vs. 61% (aRD 0.39, 95% CI 0.02–0.76), but not Youth Centre (P = 0.759). In VCT, CQI showed a trend towards increased intent to retest (4.0 vs. 4.3; aRD 0.78, 95% CI −0.11 to 1.67), but not at Youth Centre (P = 0.19). CQI was not associated with changes in AYA satisfaction, which was high during baseline and intervention at both clinics (P = 0.384, P = 0.755). HCW satisfaction remained high during intervention and baseline (P = 0.746). Conclusion: CQI improved AYA knowledge and did not negatively impact HCW satisfaction. Quality improvement interventions may be useful to improve adolescent-friendly service delivery. PMID:28665882

Long-term mental wellbeing of adolescents and young adults diagnosed with venous thromboembolism: results from a multistage mixed methods study.

PubMed

Højen, A A; Sørensen, E E; Dreyer, P S; Søgaard, M; Larsen, T B

2017-12-01

Essentials Long-term mental wellbeing of adolescents and young adults with venous thromboembolism is unclear. This multistage mixed methods study was based on Danish nationwide registry data and interviews. Mental wellbeing is negatively impacted in the long-term and uncertainty of recurrence is pivotal. The perceived health threat is more important than disease severity for long-term mental wellbeing. Background Critical and chronic illness in youth can lead to impaired mental wellbeing. Venous thromboembolism (VTE) is a potentially traumatic and life-threatening condition. Nonetheless, the long-term mental wellbeing of adolescents and young adults (AYAS) with VTE is unclear. Objectives To investigate the long-term mental wellbeing of AYAS (aged 13-33 years) diagnosed with VTE. Methods We performed a multistage mixed method study based on data from the Danish nationwide health registries, and semistructured interviews with 12 AYAS diagnosed with VTE. An integrated mixed methods interpretation of the findings was conducted through narrative weaving and joint displays. Results The integrated mixed methods interpretation showed that the mental wellbeing of AYAS with VTE had a chronic perspective, with a persistently higher risk of psychotropic drug purchase among AYAS with a first-time diagnosis of VTE than among sex-matched and age-matched population controls and AYAS with a first-time diagnosis of insulin-dependent diabetes mellitus. Impaired mental wellbeing was largely connected to a fear of recurrence and concomitant uncertainty. Therefore, it was important for the long-term mental wellbeing to navigate uncertainty. The perceived health threat played a more profound role in long-term mental wellbeing than disease severity, as the potential life threat was the pivot which pointed back to the initial VTE and forward to the perception of future health threat and the potential risk of dying of a recurrent event. Conclusion Our findings show that the long

"She Was a Little Social Butterfly": A Qualitative Analysis of Parent Perception of Social Functioning in Adolescent and Young Adult Brain Tumor Survivors.

PubMed

Wilford, Justin; Buchbinder, David; Fortier, Michelle A; Osann, Kathryn; Shen, Violet; Torno, Lilibeth; Sender, Leonard S; Parsons, Susan K; Wenzel, Lari

Psychosocial sequelae of diagnosis and treatment for childhood brain tumor survivors are significant, yet little is known about their impact on adolescent and young adult (AYA) brain tumor survivors. Interviews were conducted with parents of AYA brain tumor survivors with a focus on social functioning. Semistructured interviews were conducted with English- and Spanish-speaking parents of AYA brain tumor survivors ≥10 years of age who were >2 years postdiagnosis, and analyzed using emergent themes theoretically integrated with a social neuroscience model of social competence. Twenty parents representing 19 survivors with a survivor mean age 15.7 ± 3.3 years and 10.1 ± 4.8 years postdiagnosis were interviewed. Several themes relevant to the social neuroscience social competence model emerged. First, parents' perceptions of their children's impaired social functioning corroborated the model, particularly with regard to poor social adjustment, social withdrawal, impaired social information processing, and developmentally inappropriate peer communication. Second, ongoing physical and emotional sequelae of central nervous system insults were seen by parents as adversely affecting social functioning among survivors. Third, a disrupted family environment and ongoing parent psychosocial distress were experienced as salient features of daily life. We document that the aforementioned framework is useful for understanding the social impact of diagnosis and treatment on AYA brain tumor survivorship. Moreover, the framework highlights areas of intervention that may enhance social functioning for AYA brain tumor survivors.

Applicability of the SMART Model of Transition Readiness for Sickle-Cell Disease

PubMed Central

Valenzuela, Jessica M.; Crosby, Lori E.; Diaz Pow Sang, Claudia

2016-01-01

Objectives This study aimed to examine the applicability of the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) model for adolescents and young adults (AYA) with sickle-cell disease (SCD). Methods 14 AYA with SCD (14–24 years old) and 10 clinical experts (6–20 years of experience) completed semi-structured interviews. AYA completed brief questionnaires. Interviews were coded for themes, which were reviewed to determine their fit within the SMART model. Results Overall, most themes were consistent with the model (e.g., sociodemographics/culture, neurocognition/IQ, etc.). Factors related to race/culture, pain management, health-care navigation skills, societal stigma, and lack of awareness about SCD were salient for AYA with SCD. Conclusions Findings suggest the SMART model may be appropriate in SCD with the consideration of disease-related stigma. This study is a step toward developing a disease-specific model of transition readiness for SCD. Future directions include the development of a measure of transition readiness for this population. PMID:26717957

Acute lymphoblastic leukemia in adolescents and young adults.

PubMed

Ribera, Josep-Maria; Oriol, Albert

2009-10-01

Today, long-term survival is achieved in more than 80% of children 1 to 10 years old with acute lymphoblastic leukemia (ALL). However, cure rates for adults and adolescents and young adults (AYA) with ALL remain relatively low, at only 40% to 50%. Age is a continuous prognostic variable in ALL, with no single age at which prognosis deteriorates markedly. Within childhood ALL populations, older children have shown inferior outcomes, whereas younger adults have shown superior outcomes among adult ALL patients. The type of treatment (pediatric-based versus adult-based) for AYA has recently been a matter of debate. In this article the biology and treatment of ALL in AYA is reviewed.

Adolescents and Young Adults' Perceptions of Electronic Cigarettes as a Gateway to Smoking: A Qualitative Study in Switzerland

ERIC Educational Resources Information Center

Akre, Christina; Suris, Joan-Carles

2017-01-01

Electronic cigarettes (ECs) acting as a gateway to smoking traditional cigarettes (TCs) is a growing public health concern of EC use among youths. To gather the opinions and perceptions of adolescents and young adults (AYAs) on whether and how EC can act as a gateway to smoking TC among youths. A qualitative method included 42 AYAs. Participants…

Validation of the German version of the late adolescence and young adulthood survivorship-related quality of life measure (LAYA-SRQL).

PubMed

Richter, Diana; Mehnert, Anja; Schepper, Florian; Leuteritz, Katja; Park, Crystal; Ernst, Jochen

2018-01-04

Cancer has adverse effects on patient's quality of life. As such, measuring quality of life (QoL) has become an integral part of psycho-oncological health care. Because adolescent and young adult patients have different needs in contrast to children and older cancer patients, instruments for adequately measuring QoL of cancer survivors in this age range are essential. As there is not a corresponding instrument in Germany, we aimed to validate the German version of the Late Adolescence and Young Adulthood Survivorship-Related Quality of Life Measure (LAYA-SRQL), a 30-item questionnaire covering 10 dimensions related to QoL. The LAYA-SRQL was translated into German following state-of-the-art criteria. We enrolled 234 adolescent and young adult (AYA) cancer patients with different tumour entities aged between 16 and 39 years old. Factorial structure was tested using confirmatory factor analysis. Internal consistency was determined by Cronbach's α. The Short Form Survey quality of life questionnaire (SF-12v2) was used to examine convergent validity. The 10-factor structure of the LAYA-SRQL was confirmed in the German sample, and the model shows high values of fit indicators: χ 2  = 723.32 (df = 360, p < 0.001), CFI = 0.92, TLI = 0.90, SRMR = 0.074, RMSEA = 0.066). Subscales showed acceptable to excellent internal consistencies with Cronbach's α > 0.70 and total Cronbach's α of 0.93. Convergent validity was demonstrated by high positive correlations between the LAYA-SRQL and the physical (r = 0.45) and mental component (r = 0.65) of the SF-12v2. The German version of the LAYA-SRQL showed good psychometric properties. The instrument proved to be a highly reliable and valid instrument that can be recommended for use in the follow-up care of AYAs and for clinical research.

A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions.

PubMed

Schwartz, L A; Tuchman, L K; Hobbie, W L; Ginsberg, J P

2011-11-01

Policy and research related to transition to adult care for adolescents and young adults (AYAs) has focused primarily on patient age, disease skills and knowledge. In an effort to broaden conceptualization of transition and move beyond isolated patient variables, a new social-ecological model of AYA readiness for transition (SMART) was developed. SMART development was informed by related theories, literature, expert opinion and pilot data collection using a questionnaire developed to assess provider report of SMART components with 100 consecutive patients in a childhood cancer survivorship clinic. The literature, expert opinion and pilot data collection support the relevance of SMART components and a social-ecological conceptualization of transition. Provider report revealed that many components, representing more than age, disease knowledge and skills, related to provider plans for transferring patients. SMART consists of inter-related constructs of patients, parents and providers with emphasis on variables amenable to intervention. Results support SMART's broadened conceptualization of transition readiness and need for assessment of multiple stakeholders' perspectives of patient transition readiness. A companion measure of SMART, which will be able to be completed by patients, parents and providers, will be developed to target areas of intervention to facilitate optimal transition readiness. Similar research programmes to establish evidence-based transition measures and interventions are needed. © 2011 Blackwell Publishing Ltd.

Adolescent and Young Adult Use of Social Media For Health and its Implications

PubMed Central

Hausmann, Jonathan S.; Touloumtzis, Currie; White, Matthew T.; Colbert, James A.; Gooding, Holly

2017-01-01

Purpose To determine how adolescents and young adults (AYAs) use social media to share health information and to assess attitudes towards using social media to obtain health information and communicate with medical providers. Methods A cross-sectional study of AYAs, 12 years or older, attending a primary care adolescent and young adult clinic. Participants completed an anonymous survey about health-related social media use, personal health, and communication with their healthcare team. Results Of 244 patients approached, 204 enrolled (83.6% participation rate). Almost all (98%) had used social media within the prior month, but only 51.5% had shared health information in these networks. These participants shared about mood (76.2%), wellness (57.1%), and acute medical conditions (41.9%). Those with self-reported poor health were more likely to share health information than other groups. Privacy was the most important factor determining which platform to use. Only 25% thought social media could provide them with useful health information. Few AYAs connected with their healthcare team on social media and most did not want to use this method; texting was preferred. Conclusions AYAs maintain their privacy on social media regarding their health. Those with self-perceived poor health are more likely to share health information, potentially biasing online content and impairing the generalizability of social media research. AYAs do not view social media as a useful source of health information, which may limit the utility of public health messages through these platforms, and it may not be adequate for communication between patients and their healthcare team. PMID:28259620

Participation in Daily Activities of Young Adults with High Functioning Autism Spectrum Disorder.

PubMed

McCollum, Mary; LaVesser, Patti; Berg, Christine

2016-03-01

Young adults with an autism spectrum disorder (ASD) struggle to assume adult roles. This research assessed the feasibility of using the Adolescent and Young Adult Activity Card Sort (AYA-ACS) with emerging adults with high functioning ASD. Two phases were utilized during this research: (1) comparing the activity participation reported by emerging adults with an ASD and that reported by their caring adult; (2) examining the barriers to participation reported. Preliminary results demonstrate that the AYA-ACS appears to be a reliable and valid method of identifying emerging adults' participation strengths as well as personal and environmental challenges in a variety of age-appropriate activities. The AYA-ACS could assist service providers by providing an understanding of the challenges to participation faced by this population and aid in developing client centered interventions.

Adolescent and Young Adult Use of Social Media for Health and Its Implications.

PubMed

Hausmann, Jonathan S; Touloumtzis, Currie; White, Matthew T; Colbert, James A; Gooding, Holly C

2017-06-01

To determine how adolescents and young adults (AYAs) use social media to share health information and to assess attitudes toward using social media to obtain health information and communicate with medical providers. A cross-sectional study of AYAs, 12 years or older, attending a primary care adolescent and young adult clinic. Participants completed an anonymous survey about health-related social media use, personal health, and communication with their health care team. Of the 244 patients approached, 204 enrolled (83.6% participation rate). Almost all (98%) had used social media within the prior month, but only 51.5% had shared health information in these networks. These participants shared about mood (76.2%), wellness (57.1%), and acute medical conditions (41.9%). Those with self-reported poor health were more likely to share health information than other groups. Privacy was the most important factor determining which platform to use. Only 25% thought that social media could provide them with useful health information. Few AYAs connected with their health care team on social media and most did not want to use this method; texting was preferred. AYAs maintain their privacy on social media regarding their health. Those with self-perceived poor health are more likely to share health information, potentially biasing online content and impairing the generalizability of social media research. AYAs do not view social media as a useful source of health information, which may limit the utility of public health messages through these platforms, and it may not be adequate for communication between patients and their health care team. Copyright © 2017 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

[STUDY RELATIVE EXPRESSION OF GENES THAT CONTROL GLUCOSE METABOLISM IN THE LIVER IN MICE WITH DEVELOPMENT OF MELANOCORTIN OBESITY].

PubMed

Baklanov, A V; Bazhan, N M

2015-06-01

The relative gene expressions of glucose-6-phosphatase (G6P), phosphoenolpyruvate carbo- xykinase (PEPCK)--markers of gluconeogenesis, glucokinase (GK)--a marker of glycolysis, glucose transporter type 2 (GLUT2)--a marker of input and output of glucose in the liver were measured during the development of melanocortin (MC) obesity in male mice of C57BL/6J strain with mutation yellow in the Agouti locus (Ay/a mice). The mutation decreases MC receptor activity and induces hyperphagia and MC obesity. The males of the same line with mutation nonagouti were used as control. Tissue samples were taken at age 10 (before obesity), 15 (moderate obesity) and 30 (developed obesity) weeks. It has been shown that Ay/a mice had decreased glucose tolerance since 10-week age. There were age-related changes in mRNA levels in the liver of Ay/a mice, unlike a/a mice. In Ay/a mice the mRNA GLUT2 levels at the age of 10 weeks, mRNA GK levels at the age of 15 weeks, and mRNA G6P levels at the age of 3O weeks were higher than those in Ada mice of other ages. InAYfa mice the mRNA GK levels at the age of 15 weeks and mRNA G6F levels at the age of 30 weeks were increased relatively to those in a/a mice. Thus, Ay/a mice before the development of MK obesity had changes in the mRNA levels genes of proteins that regulate hepatic glucose metabolism, which may contribute to the compensation of glucose metabolism disorders caused by a hereditary decrease of MK system activity

The need for control, safety and trust in healthcare: A qualitative study among adolescents and young adults exposed to family violence.

PubMed

van Rosmalen-Nooijens, Karin A W L; Lo Fo Wong, Sylvie H; Prins, Judith B; Lagro-Janssen, Antoine L M

2017-06-01

Adolescents and young adults (AYA) exposed to family violence are in need of professional healthcare. However, only one-third of them seek professional help. This study investigates healthcare needs of twelve AYA exposed to family violence. Semi-structured face-to-face interviews using purposive sampling to reach diversity. Open thematic coding was used to identify the most important themes. Participants experienced emotional problems, distrusted others and felt unsafe as an important consequence of their exposure to family violence. All participants expressed a need for help, but as help involved informing others, they considered it unsafe. Trust, safety and control regarding healthcare interventions emerged as vital needs. The anonymity of the Internet was considered as offering safeguards in seeking and receiving help. Trust, safety and control regarding healthcare interventions emerged as vital needs for AYA exposed to family violence. The great importance of being in control of healthcare interventions has not been reported earlier. A personal bond can lower the need for control. To comply with the three basic needs, healthcare providers should grant AYA as much control as possible while still monitoring patient safety. The Internet can be an important resource for offering low-threshold professional and peer support. Copyright © 2017 Elsevier B.V. All rights reserved.

Games of lives in surviving childhood brain tumors.

PubMed

Chen, Chin-Mi; Chen, Yueh-Chih; Haase, Joan E

2008-06-01

The purpose of this phenomenological study was to describe the commonality of the lived experience of adolescent and young adult survivors (AYAS) of brain tumors in Taiwan from a sociocultural perspective. Seven AYAS aged 13 to 22 years, who had survived 5 to 10 years from the time of diagnosis, participated in this study. In consideration of their emotional duress, each participant was interviewed only once. The data revealed an essential structure: the game of life. The essential structure included six themes as follows: (a) no longer playing well, (b) wandering on the outer edges of social life, (c) helplessly struggling with role obligations, (d) rationally regulating the meaning of surviving, (e) winning a new social face, and (f) mastering the game of life. The findings suggest how nurses might help AYAS to succeed in psychosocial adjustment.

JPRS Report, Soviet Union, International Affairs.

DTIC Science & Technology

1987-09-14

de estudios internationales (CEPEI), Lima, 1986, XXXVI+498 pp] [Text] The latest publication of the Peruvian Center for International Research is...one time a militant Indianist. The founder of APRA Aya de la Torre in his early works also preached the messianic role of the Indians, rejected...explosions in Lima, and dynamite attacks were made on one of the APRA district committees and on the ranch where the founder of the APRA Aya de la Torre had

Self-Management and Transition Readiness Assessment: Development, Reliability, and Factor Structure of the STARx Questionnaire.

PubMed

Ferris, M; Cohen, S; Haberman, C; Javalkar, K; Massengill, S; Mahan, J D; Kim, S; Bickford, K; Cantu, G; Medeiros, M; Phillips, A; Ferris, M T; Hooper, S R

2015-01-01

The Self-Management and Transition to Adulthood with Rx=Treatment (STARx) Questionnaire was developed to collect information on self-management and health care transition (HCT) skills, via self-report, in a broad population of adolescents and young adults (AYAs) with chronic conditions. Over several iterations, the STARx questionnaire was created with AYA, family, and health provider input. The development and pilot testing of the STARx Questionnaire took place with the assistance of 1219 AYAs with different chronic health conditions, in multiple institutions and settings over three phases: item development, pilot testing, reliability and factor structuring. The three development phases resulted in a final version of the STARx Questionnaire. The exploratory factor analysis of the third version of the 18-item STARx identified six factors that accounted for about 65% of the variance: Medication management, Provider communication, Engagement during appointments, Disease knowledge, Adult health responsibilities, and Resource utilization. Reliability estimates revealed good internal consistency and temporal stability, with the alpha coefficient for the overall scale being .80. The STARx was developmentally sensitive, with older patients scoring significantly higher on nearly every factor than younger patients. The STARx Questionnaire is a reliable, self-report tool with adequate internal consistency, temporal stability, and a strong, multidimensional factor structure. It provides another assessment strategy to measure self-management and transition skills in AYAs with chronic conditions. Copyright © 2015 Elsevier Inc. All rights reserved.

Maternal and developmental toxicity of the hallucinogenic plant-based beverage ayahuasca in rats.

PubMed

da Motta, Luciana Gueiros; de Morais, Juliana Alves; Tavares, Ana Carolina A M; Vianna, Leonora Maciel Sousa; Mortari, Marcia Renata; Amorim, Rivadávio Fernandes Batista; Carvalho, Rosângela R; Paumgartten, Francisco José R; Pic-Taylor, Aline; Caldas, Eloisa Dutra

2018-04-01

Rats were treated orally with ayahuasca (AYA) on gestation days (GD) 6-20 at doses corresponding to one-(1X) to eight-fold (8X) the average dose taken by a human adult in a religious ritual, and the pregnancy outcome evaluated on GD21. Rats treated with 4X and 8X doses died during the treatment period (44 and 52%), and those that survived showed kidney injury. Rats surviving the 8X dose showed neuronal loss in hippocampal regions and in the raphe nuclei, and those from the 2X dose neuronal loss in CA1. Delayed intrauterine growth, induced embryo deaths and increased occurrence of foetal anomalies were observed at the 8X dose. At non-lethal doses, AYA enhanced embryolethality and the incidence of foetal soft-tissue and skeleton anomalies. This study suggested that AYA is developmentally toxic and that its daily use by pregnant women may pose risks for the conceptus. Copyright © 2018 Elsevier Inc. All rights reserved.

Parenting Among Adolescents and Young Adults with Human Immunodeficiency Virus Infection in the United States: Challenges, Unmet Needs, and Opportunities

PubMed Central

Brown, Jennifer L.; Haddad, Lisa B.; Chakraborty, Rana; Kourtis, Athena P.

2016-01-01

Abstract Given the realistic expectations of HIV-infected adolescents and young adults (AYA) to have children and start families, steps must be taken to ensure that youth are prepared to deal with the challenges associated with their HIV and parenting. Literature reviews were conducted to identify published research and practice guidelines addressing parenting or becoming parents among HIV-infected AYA in the United States. Research articles or practice guidelines on this topic were not identified. Given the paucity of information available on this topic, this article provides a framework for the development of appropriate interventions and guidelines for use in clinical and community-based settings. First, the social, economic, and sexual and reproductive health challenges facing HIV-infected AYA in the United States are summarized. Next, family planning considerations, including age-appropriate disclosure of HIV status to those who are perinatally infected, and contraceptive and preconception counseling are described. The impact of early childbearing on young parents is discussed and considerations are outlined during the preconception, antenatal, and postnatal periods with regard to antiretroviral medications and clinical care guidelines. The importance of transitioning AYA from pediatric or adolescent to adult-centered medical care is highlighted. Finally, a comprehensive approach is suggested that addresses not only medical needs but also emphasizes ways to mitigate the impact of social and economic factors on the health and well-being of these young parents and their children. PMID:27410495

Multicentre study of treatment outcomes in Australian adolescents and young adults commencing dialysis.

PubMed

Krischock, Leah; Kennedy, Sean E; Hayen, Andrew

2017-12-01

The aim of the study is to improve the understanding of outcomes and complications of dialysis in adolescents and young adults (AYA) to inform decisions about dialysis modality in this patient population. Registry data on Australian AYA aged 13 to 20 years who commenced dialysis between 1/1/2000 and 31/12/2013 were retrieved from the Australia and New Zealand Dialysis and Transplantation Registry and analyzed to determine associations between demographic characteristics, dialysis modality and outcomes. During the study period 300 AYA commenced dialysis at a median age of 17.2 years (IQR 15.6 to 18.6 years). Haemodialysis (HD) was the initial dialysis modality in 201 patients (67%). No significant differences between AYA receiving HD and peritoneal dialysis (PD) were noted in patient gender, age, race, primary renal disease, treating centre type, remoteness of residential area, lateness of referral or period of study. Mean haemoglobin levels were lower in the HD group (P = 0.005) and significantly fewer HD patients attended school full time compared to patients managed on PD (P = 0.002 first year; P = 0.05 second year). Dialysis modality choice does not appear to be influenced by patient characteristics nor dialysis outcomes. Future research is required to examine the reasons that HD is preferred over PD and to determine the optimal method of dialysis for this age group. © 2016 Asian Pacific Society of Nephrology.

Improving Access to Standardized Fertility Preservation Information for Older Adolescents and Young Adults with Cancer: Using a User-Centered Approach with Young Adult Patients, Survivors, and Partners to Refine Fertility Knowledge Transfer.

PubMed

Tam, Seline; Puri, Natasha; Stephens, Derek; Mitchell, Laura; Giuliani, Meredith; Papadakos, Janet; Gupta, Abha A

2018-06-01

Adolescent and young adult (AYA) cancer patients under 40 should be made aware of their fertility risks and preservation options throughout their care. However, discussions on fertility preservation (FP) do not routinely occur. With a dearth of FP resources, oncology providers may lack knowledge around FP. Thus, informational needs can be unmet, leading to anxiety and distress in patients. Provision of pertinent and timely information can help patients cope better with their diagnosis. FP pamphlets were developed for men and women with cancer. A cross-sectional in-house survey, using convenience sampling, evaluated the pamphlets' effectiveness and measured ease of understanding, acceptability, and perceived utility. Patients and partners were also asked to provide recommendations and complete the Short Test of Functional Health Literacy in Adults (S-TOFHLA) measuring health literacy level. This helps determine if health literacy influences perception of pamphlet effectiveness. All participants (n = 56) reviewed both pamphlets. Fifty-four participants (96 %) found the pamphlet for men useful, while 29 participants (52 %) improved their male fertility knowledge. The pamphlet for women was useful for 52 participants (93 %) and improved knowledge in 35 (63 %) of them. Although the majority of participants had adequate health literacy (98 %), there was insufficient sample diversity to determine if health literacy influenced the pamphlet's effectiveness. Participants indicated preference in receiving verbal (73 %) and written (66 %) information over watching videos or in-class education. They recommended including fertility clinics, financial resources, and statistics in the brochures. These FP pamphlets were concluded as effective in supporting patients in making FP decisions.

Excess mortality among 10-year survivors of classical Hodgkin lymphoma in adolescents and young adults.

PubMed

Xavier, Ana C; Epperla, Narendranath; Taub, Jeffrey W; Costa, Luciano J

2018-02-01

Adolescents and young adults (AYA) surviving classical Hodgkin lymphoma (cHL) risk long term fatal treatment-related toxicities. We utilized the Surveillance, Epidemiology and End Results (SEER) program to compare excess mortality rate (EMR-observed minus expected mortality) for 10-year survivors of AYA cHL diagnosed in 1973-1992 and 1993-2003 eras. The 15-year EMR reduced from 4.88% to 2.19% while the 20-year EMR reduced from 9.46% to 4.07% between eras. Survivors of stages 1-2 had lower EMR than survivors of stages 3-4 cHL in the 1993-2003 but not in the 1973-1992 era. There was an overall decline in risk of death between 10 and 15 years from diagnosis, driven mostly by second neoplasms and cardiovascular mortality. Despite reduction in fatal second neoplasms and cardiovascular disease with more current therapy, long term survivors of AYA cHL still have a higher risk of death than the general population highlighting the need for safer therapies. © 2017 Wiley Periodicals, Inc.

Technology Access and Smartphone App Preferences for Medication Adherence in Adolescents and Young Adults With Sickle Cell Disease.

PubMed

Badawy, Sherif M; Thompson, Alexis A; Liem, Robert I

2016-05-01

Hydroxyurea is the only Food and Drug Administration approved medication for sickle cell disease (SCD) with short- and long-term benefits for both morbidity and mortality. However, hydroxyurea underutilization and adherence remain challenges for patients with SCD. The objectives of this study were to determine access to technology among adolescents and young adults (AYA) with SCD and to identify their preferred technology-based strategies for improving medication adherence. A cross-sectional survey was administered in a variety of clinical settings from October 2014 through May 2015 to AYA (12-22 years) with SCD (all genotypes) followed in a Comprehensive Sickle Cell Program. Eighty of 107 eligible participants completed the survey for a 75% response rate. Participants (51% female, 94% Black) had a mean age of 15.3 ± 2.8 years. Most participants (75%) were on a daily medication with about half on hydroxyurea. Forgetfulness (67%) was the most common barrier to medication adherence. The majority of participants (85%) owned smartphones and either owned or had access to electronic tablets (83%), laptops (72%), or desktops (70%). Of the proposed smartphone app features, daily medication reminders were ranked first most frequently, followed by education about SCD, adherence text prompts, education about SCD medications, and medication log. The majority of our AYA with SCD owned smartphones and had access to other electronic devices. Our survey results provided valuable insight into the preferred app features and optimal strategies for developing technology-based interventions, such as a multicomponent app, to increase medication adherence for AYA with SCD or other chronic conditions. © 2016 Wiley Periodicals, Inc.

Increasing Burden of Chronic Liver Disease Among Adolescents and Young Adults in the USA: A Silent Epidemic.

PubMed

Doycheva, Iliana; Watt, Kymberly D; Rifai, Ghassoub; Abou Mrad, Rachel; Lopez, Rocio; Zein, Nizar N; Carey, William D; Alkhouri, Naim

2017-05-01

Chronic liver disease (CLD) starts or becomes established in the adolescent and young adult (AYA) age group. This study aimed to estimate trends in CLD prevalence among US AYAs and to assess factors associated with CLD. Cross-sectional data from 14,547 AYAs (population-weighted N = 68,274,386) aged 15-39 years enrolled in the National Health and Nutrition Examination Survey from 1988 to 2012 were used. Nonalcoholic fatty liver disease (NAFLD) was defined as elevated alanine aminotransferase (>19 U/L for females and >30 U/L for males) in subjects with BMI ≥ 25 kg/m 2 ; alcoholic liver disease (ALD) as excessive alcohol use (≥3 drinks/day for men and ≥2 drinks/day for women) and elevated aminotransferases after excluding alternative etiologies. Participants were considered hepatitis C virus (HCV) positive if antibody to HCV and HCV-RNA was positive. There was a sharp increase in the prevalence of CLD from 12.9% in 1988-1994 to 28.5% in 1999-2004 that remained stable after that (27.7%). NAFLD was the most common etiology accounting for 22% of all CLD in the later period. The prevalence of ALD has been steadily increasing throughout the years, while HCV has been decreasing. On multivariate analysis, being overweight/obese, Mexican-American ethnicity, later study period, older age, and male gender, were associated with higher odds of having CLD. More than one quarter of US AYAs might be affected by CLD. CLD prevalence in this age group has more than doubled over the past three decades mainly due to rise in NAFLD prevalence.

Exercise and Fatigue in Adolescent and Young Adult Survivors of Hodgkin Lymphoma: A Report from the Children's Oncology Group

PubMed Central

Hooke, Mary C.; Friedman, Debra L.; Campbell, Kristin; Withycombe, Janice; Schwartz, Cindy L.; Kelly, Kara; Meza, Jane

2015-01-01

Fatigue is a significant problem for adolescent and young adult (AYA) Hodgkin lymphoma (HL) survivors. The relationship between exercise and fatigue is complex. This study explored the trajectory of and the relationship between exercise and fatigue over 36 months post-therapy in a cohort of 103 AYA-aged HL survivors treated on Children's Oncology Group (COG) study AHOD0031. Descriptive statistics and generalized estimating equations were used in this secondary data analysis. Exercise and fatigue improved over time but were unrelated; amount of exercise at end of therapy predicted amount of exercise at 12 (p = 0.02) and 36 (p = 0.0008) months post-therapy. PMID:26421221

Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research

PubMed Central

Stevens, Evelyn M.; Patterson, Chavis A.; Li, Yimei B.; Smith-Whitley, Kim; Barakat, Lamia P.

2016-01-01

Introduction Sickle cell disease (SCD) research is hampered by disparities in participation due in part to mistrust of research among racial/ethnic minorities. Beyond the historic context of research misconduct, little is known about the associations of social ecologic factors with mistrust and of mistrust with SCD clinical trials enrollment. This study evaluated proximal (age, gender, disease severity, perceived stress, SES) and distal (religious beliefs, social support, instrumental support) factors related to mistrust of research among caregivers of children with SCD and adolescents and young adults (AYAs) with SCD. Methods Over an 18-month period (2009–2010), participants completed questionnaires of perceived barriers and benefits to clinical trials enrollment, perceived stress, and self-reported demographic and disease-related information. Analyses (January–June 2015) used multivariable linear regressions to evaluate predictors of mistrust. Results Data were analyzed for 154 caregivers (mean age, 38.75 years; SD=9.56 years; 90.30% female) and 88 AYAs (mean age, 24.76 years; SD=7.25 years; 46.40% female). Among caregivers (full model, R2=0.14, p≤0.001), greater mistrust was explained by higher perceived stress (β=0.04, p=0.052), religious beliefs (β=0.61, p≤0.001), and greater instrumental support (β=0.07, p=0.044). Among AYAs (full model, R2=0.18, p≤0.001), higher mistrust was explained by being male and lower instrumental support (β= −0.56, p≤0.001; β= −0.11, p=0.016, respectively). Mistrust was significantly greater among caregivers that reported no prior involvement in medical research (p=0.003). Conclusions By understanding the complexity through which social ecologic factors contribute to mistrust, researchers may create targeted strategies to address mistrust and increase engagement in SCD research for caregivers and AYAs. PMID:27320470

Health-Related Quality of Life of Adolescent and Young Adult Survivors of Central Nervous System Tumors: Identifying Domains From a Survivor Perspective.

PubMed

Kuhlthau, Karen; Luff, Donna; Delahaye, Jennifer; Wong, Alicia; Yock, Torunn; Huang, Mary; Park, Elyse R

2015-01-01

This article uses qualitative methods to describe the domains of health-related quality of life (HRQoL) that adolescent and young adult (AYA) survivors of central nervous system (CNS) tumors identify as important. Survivors clearly attributed aspects of their current HRQoL to their disease or its treatment. We identified 7 key domains of AYA CNS tumor survivorship: physical health, social well-being, mental health, cognitive functioning, health behaviors, sexual and reproductive health, and support systems. Although most aspects of HRQoL that survivors discussed represented new challenges, there were several areas where survivors pointed out positive outcomes. There is a need for a HRQoL tool designed for this population of survivors, given their unique treatment and survivorship experience. Aspects of HRQoL related to cognition, sexual and reproductive health, health behaviors, and support systems are not typically included in generic HRQoL tools but should be assessed for this population. Developing HRQoL measurement instruments that capture the most significant aspects of HRQoL will improve the ability to track HRQoL in AYA CNS tumor survivors and in the long-term management of common sequelae from CNS tumors and their treatments. © 2015 by Association of Pediatric Hematology/Oncology Nurses.

Exploring the feasibility of a therapeutic music video intervention in adolescents and young adults during stem-cell transplantation.

PubMed

Burns, Debra S; Robb, Sheri L; Haase, Joan E

2009-01-01

The purpose of this study was to explore the feasibility and preliminary efficacy of a therapeutic music video (TMV) intervention for adolescents and young adults (AYAs) undergoing stem-cell transplantation (SCT). Twelve AYAs (aged 11-24 years) were randomized to the TMV or an audio-book protocol. The TMV was designed to diminish symptom distress and improve coping, derived meaning, resilience, and quality of life by supporting AYAs in exploring thoughts and feelings. Six sessions with a board-certified music therapist were held twice a week for 3 weeks. The Adolescent Resilience Model guided the selection of a large, comprehensive battery of outcome measures. Major data collections occurred before admission, after intervention, and at 100 days after transplantation. Participants completed a brief set of measures at presession/postsessions 2, 4, and 6. Rates of consent, session completion, and questionnaire completion supported feasibility. Immediate follow-up measures suggest positive trends in the TMV group for hope, spirituality, confidence/mastery, and self-transcendence. Positive trends at 100 days include MOS, symptoms distress, defensive coping, spirituality, and self-transcendence. Therapeutic music video participants also demonstrated gains in quality of life. The TMV intervention may buffer the immediate after-effects of the stem-cell transplantation experience, and a larger study is warranted.

Integrated Cancer Repository for Cancer Research

ClinicalTrials.gov

2017-05-05

Pancreatic Cancer; Thyroid Cancer; Lung Cancer; Esophageal Cancer; Thymus Cancer; Colon Cancer; Rectal Cancer; GIST; Anal Cancer; Bile Duct Cancer; Duodenal Cancer; Gallbladder Cancer; Gastric Cancer; Liver Cancer; Small Intestine Cancer; Peritoneal Surface Malignancies; Familial Adenomatous Polyposis; Lynch Syndrome; Bladder Cancer; Kidney Cancer; Penile Cancer; Prostate Cancer; Testicular Cancer; Ureter Cancer; Urethral Cancer; Hypopharyngeal Cancer; Laryngeal Cancer; Lip Cancer; Oral Cavity Cancer; Nasopharyngeal Cancer; Oropharyngeal Cancer; Paranasal Sinus Cancer; Nasal Cavity Cancer; Salivary Gland Cancer; Skin Cancer; CNS Tumor; CNS Cancer; Mesothelioma; Breastcancer; Leukemia; Melanoma; Sarcoma; Unknown Primary Tumor; Multiple Myeloma; Ovarian Cancer; Endometrial Cancer; Vaginal Cancer

Donor lymphocyte infusions in adolescents and young adults for control of advanced pediatric sarcoma.

PubMed

Schober, Sebastian J; von Luettichau, Irene; Wawer, Angela; Steinhauser, Maximilian; Salat, Christoph; Schwinger, Wolfgang; Ussowicz, Marek; Antunovic, Petar; Castagna, Luca; Kolb, Hans-Jochem; Burdach, Stefan E G; Thiel, Uwe

2018-04-27

Allogeneic stem cell transplantation (allo-SCT) and donor lymphocyte infusions (DLI) may induce a graft-versus-tumor effect in pediatric sarcoma patients. Here, we describe general feasibility, toxicity and efficacy of DLI after allo-SCT. 4 of 8 patients responded. ES#4 had stable disease (SD) for 9 months after DLI and RMS#4 partial response for 8 months with combined hyperthermia/chemotherapy. In ES#4, DLI led to SD for 6 months and reverted residual disease before allo-SCT into complete remission. After DLI, ES#4 and RMS#4 developed acute GvHD (°III-°IV), ES#4 also developed chronic GvHD. 5 patients including ES#4 lived longer than expected. Median survival after allo-SCT was 2.3 years, post-relapse survival (PRS) was 13 months. Off note, HLA-mismatched DLI were associated with a trend towards increased survival after allo-SCT and increased PRS compared to HLA-matched DLI (23 versus 3 months). We studied eight adolescents and young adults (AYAs) with advanced Ewing sarcoma (ES#1-4) and rhabdomyosarcoma (RMS#1-4) who received DLI. Escalating doses ranged from 2.5 × 10 4 to 1 × 10 8 CD3 + cells/kg body weight. AYAs were evaluated for response to DLI, graft-versus-host disease (GvHD) and survival. DLI after allo-SCT may control advanced pediatric sarcoma in AYAs with controllable toxicity.

Pediatric, Adolescent, and Young Adult Thyroid Carcinoma Harbors Frequent and Diverse Targetable Genomic Alterations, Including Kinase Fusions

PubMed Central

Schrock, Alexa B.; Anderson, Peter M.; Morris, John C.; Heilmann, Andreas M.; Holmes, Oliver; Wang, Kai; Johnson, Adrienne; Waguespack, Steven G.; Ou, Sai‐Hong Ignatius; Khan, Saad; Fung, Kar‐Ming; Stephens, Philip J.; Erlich, Rachel L.; Miller, Vincent A.; Ross, Jeffrey S.; Ali, Siraj M.

2017-01-01

Background. Thyroid carcinoma, which is rare in pediatric patients (age 0–18 years) but more common in adolescent and young adult (AYA) patients (age 15–39 years), carries the potential for morbidity and mortality. Methods. Hybrid‐capture‐based comprehensive genomic profiling (CGP) was performed prospectively on 512 consecutively submitted thyroid carcinomas, including 58 from pediatric and AYA (PAYA) patients, to identify genomic alterations (GAs), including base substitutions, insertions/deletions, copy number alterations, and rearrangements. This PAYA data series includes 41 patients with papillary thyroid carcinoma (PTC), 3 with anaplastic thyroid carcinoma (ATC), and 14 with medullary thyroid carcinoma (MTC). Results. GAs were detected in 93% (54/58) of PAYA cases, with a mean of 1.4 GAs per case. In addition to BRAF V600E mutations, detected in 46% (19/41) of PAYA PTC cases and in 1 of 3 AYA ATC cases, oncogenic fusions involving RET, NTRK1, NTRK3, and ALK were detected in 37% (15/41) of PAYA PTC and 33% (1/3) of AYA ATC cases. Ninety‐three percent (13/14) of MTC patients harbored RET alterations, including 3 novel insertions/deletions in exons 6 and 11. Two of these MTC patients with novel alterations in RET experienced clinical benefit from vandetanib treatment. Conclusion. CGP identified diverse clinically relevant GAs in PAYA patients with thyroid carcinoma, including 83% (34/41) of PTC cases harboring activating kinase mutations or activating kinase rearrangements. These genomic observations and index cases exhibiting clinical benefit from targeted therapy suggest that young patients with advanced thyroid carcinoma can benefit from CGP and rationally matched targeted therapy. Implications for Practice. The detection of diverse clinically relevant genomic alterations in the majority of pediatric, adolescent, and young adult patients with thyroid carcinoma in this study suggests that comprehensive genomic profiling may be beneficial for young

Cancer

MedlinePlus

... cancer the three most common cancers are: Prostate cancer Lung cancer Colorectal cancer In US women, other than ... cancer the three most common cancers are: Breast cancer Lung cancer Colorectal cancer Some cancers are more common ...

Lymphedema After Surgery in Patients With Endometrial Cancer, Cervical Cancer, or Vulvar Cancer

ClinicalTrials.gov

2017-05-03

Lymphedema; Stage IA Cervical Cancer; Stage IA Uterine Corpus Cancer; Stage IA Vulvar Cancer; Stage IB Cervical Cancer; Stage IB Uterine Corpus Cancer; Stage IB Vulvar Cancer; Stage II Uterine Corpus Cancer; Stage II Vulvar Cancer; Stage IIA Cervical Cancer; Stage IIIA Vulvar Cancer; Stage IIIB Vulvar Cancer; Stage IIIC Vulvar Cancer; Stage IVB Vulvar Cancer

Text Messaging Improves Participation in Laboratory Testing in Adolescent Liver Transplant Patients.

PubMed

McKenzie, Rebecca B; Berquist, William E; Foley, Megan A; Park, K T; Windsheimer, Jered E; Litt, Iris F

In solid organ transplant patients, non-participation in all aspects of the medical regimen is a prevalent problem associated with adverse consequences particularly in the adolescent and young adult (AYA) age group. This study is the first to evaluate the feasibility, utility and impact of a text messaging (TM) intervention to improve participation in laboratory testing in adolescent liver transplant patients. AYA patients, aged 12 to 21 years, were recruited for a prospective pilot trial evaluating a TM intervention delivered over a 1-year period. The intervention involved automated TM reminders with feedback administered according to a prescribed laboratory testing frequency. Participation rate in laboratory testing after the intervention was compared to the year prior. Patient responses and feedback by text and survey were used to assess feasibility, acceptability and use of the intervention. Forty-two patients were recruited and 33 patients remained enrolled for the study duration. Recipients of the TM intervention demonstrated a significant improvement in participation rate in laboratory testing from 58% to 78% (P<.001). This rate was also significantly higher than in non-intervention controls (P=.003). There was a high acceptability, response rate and a significant correlation with reported versus actual completion of laboratory tests by TM. TM reminders significantly improved participation in laboratory testing in AYA liver transplant patients. The intervention demonstrated feasibility, acceptability, and use with a high proportion of patients who engaged in and perceived a benefit from using this technology.

Frequency of daily tooth brushing: predictors of change in 9- to 11-year old US children.

PubMed

Polk, D E; Geng, M; Levy, S; Koerber, A; Flay, B R

2014-09-01

To investigate whether an increase in daily tooth brushing frequency in children was predicted by either a) having a strong intention to brush twice a day or b) their parents receiving information about their new caries experience. Secondary data analyses were conducted on two waves of data from the Aban Aya Youth Project and the Iowa Fluoride Study. The Aban Aya study included 576 10- and 11-year olds from Chicago, Illinois. The Iowa Fluoride Study included a convenience sample of 709 babies born in Iowa. The present study includes those children at age 9. In both studies, reported daily tooth brushing frequency was assessed twice six months apart. In the Aban Aya data, compared with children with a weak intention at wave 1 to brush twice a day, children with a strong intention to brush twice a day were more likely to increase their brushing frequency by wave 2, OR 7.0, 95%CI 1.5,32.9. In the Iowa Fluoride Study, compared with children who did not have new caries at wave 1, children who had new caries experience were less likely to increase their brushing frequency by wave 2, OR 0.4, 95%CI 0.2,0.9. Strengthening intention to brush twice a day might increase children's brushing frequency. However, simply providing parents with information about new caries probably will not. Future studies should assess tooth brushing frequency, habit strength, intention, and situational cues at closely-spaced waves.

6 Common Cancers - Breast Cancer

MedlinePlus

... Bar Home Current Issue Past Issues 6 Common Cancers - Breast Cancer Past Issues / Spring 2007 Table of Contents For ... her down. Photo: AP Photo/Brett Flashnick Breast Cancer Breast cancer is a malignant (cancerous) growth that ...

6 Common Cancers - Colorectal Cancer

MedlinePlus

... Bar Home Current Issue Past Issues 6 Common Cancers - Colorectal Cancer Past Issues / Spring 2007 Table of Contents For ... colon cancer. Photo: AP Photo/Ron Edmonds Colorectal Cancer Cancer of the colon (large intestine) or rectum ( ...

Uterine Cancer: Cancer of the Uterus

MedlinePlus

... Subscribe To receive Publications email updates Submit Uterine cancer Cancer of the uterus (uterine cancer) is cancer ... Institute . Expand all | Collapse all What is uterine cancer? Cancer is a disease in which certain body ...

6 Common Cancers - Skin Cancer

MedlinePlus

... Bar Home Current Issue Past Issues 6 Common Cancers - Skin Cancer Past Issues / Spring 2007 Table of Contents For ... AP Photo/Herald-Mail, Kevin G. Gilbert Skin Cancer Skin cancer is the most common form of ...

6 Common Cancers - Lung Cancer

MedlinePlus

... Bar Home Current Issue Past Issues 6 Common Cancers - Lung Cancer Past Issues / Spring 2007 Table of Contents For ... Desperate Housewives. (Photo ©2005 Kathy Hutchins / Hutchins) Lung Cancer Lung cancer causes more deaths than the next ...

Cancer metabolism: strategic diversion from targeting cancer drivers to targeting cancer suppliers.

PubMed

Kim, Soo-Youl

2015-03-01

Drug development groups are close to discovering another pot of gold-a therapeutic target-similar to the success of imatinib (Gleevec) in the field of cancer biology. Modern molecular biology has improved cancer therapy through the identification of more pharmaceutically viable targets, and yet major problems and risks associated with late-phase cancer therapy remain. Presently, a growing number of reports have initiated a discussion about the benefits of metabolic regulation in cancers. The Warburg effect, a great discovery approximately 70 years ago, addresses the "universality" of cancer characteristics. For instance, most cancer cells prefer aerobic glycolysis instead of mitochondrial respiration. Recently, cancer metabolism has been explained not only by metabolites but also through modern molecular and chemical biological techniques. Scientists are seeking context-dependent universality among cancer types according to metabolic and enzymatic pathway signatures. This review presents current cancer metabolism studies and discusses future directions in cancer therapy targeting bio-energetics, bio-anabolism, and autophagy, emphasizing the important contribution of cancer metabolism in cancer therapy.

A new prospect in cancer therapy: targeting cancer stem cells to eradicate cancer.

PubMed

Chen, Li-Sha; Wang, An-Xin; Dong, Bing; Pu, Ke-Feng; Yuan, Li-Hua; Zhu, Yi-Min

2012-12-01

According to the cancer stem cell theory, cancers can be initiated by cancer stem cells. This makes cancer stem cells prime targets for therapeutic intervention. Eradicating cancer stem cells by efficient targeting agents may have the potential to cure cancer. In this review, we summarize recent breakthroughs that have improved our understanding of cancer stem cells, and we discuss the therapeutic strategy of targeting cancer stem cells, a promising future direction for cancer stem cell research.

"Stories Take Your Role Away From You": Understanding the Impact on Health Care Professionals of Viewing Digital Stories of Pediatric and Adolescent/Young Adult Oncology Patients.

PubMed

Laing, Catherine M; Moules, Nancy J; Estefan, Andrew; Lang, Mike

The purpose of this philosophical hermeneutic study was to understand the effects on health care providers (HCPs) of watching digital stories made by (past and present) pediatric and adolescent/young adult (AYA) oncology patients. Twelve HCPs participated in a focus group where they watched digital stories made by pediatric/AYA oncology patients and participated in a discussion related to the impact the stories had on them personally and professionally. Findings from this research revealed that HCPs found digital stories to be powerful, therapeutic, and educational tools. Health care providers described uses for digital stories ranging from education of newly diagnosed families to training of new staff. Digital stories, we conclude, can be an efficient and effective way through which to understand the patient experience, implications from which can range from more efficient patient care delivery to decision making. Recommendations for incorporating digital storytelling into healthcare delivery are offered.

Asthma-specific cognitions, self-focused attention, and fear of negative evaluation in adolescents and young adults diagnosed with childhood-onset asthma.

PubMed

Junghans-Rutelonis, Ashley N; Tackett, Alayna P; Suorsa, Kristina I; Chaney, John M; Mullins, Larry L

2018-01-01

The present study examined the impact of asthma-specific thought intrusion (TI) and thought suppression (TS) on two cognitive-affective variables (self-focused attention and fear of negative evaluation) among adolescents and young adults (AYAs) diagnosed with childhood-onset asthma. Participants were 290 AYAs who completed assessment questionnaires and participated in a written exercise electronically. Asthma-TI and TS were reported by participants following participation in a writing assignment. Asthma-TI was associated with increased private, public, and social anxiety self-focused attention, and greater fear of negative evaluation. Interestingly, asthma-TS was not associated with these same outcome variables. Findings suggest illness-specific cognitions are associated with cognitive-affective variables and it may be important to assess for illness-specific intrusive thoughts following asthma-focused medical appointments. Additionally, findings suggest the importance of assessing asthma-TI and TS separately in order to better understand thoughts about health and psychological functioning.

Transition of adolescent and young adult patients with childhood-onset chronic kidney disease from pediatric to adult renal services: a nationwide survey in Japan.

PubMed

Hattori, Motoshi; Iwano, Masayuki; Sako, Mayumi; Honda, Masataka; Okada, Hirokazu; Akioka, Yuko; Ashida, Akira; Kawasaki, Yukihiko; Kiyomoto, Hideyasu; Terada, Yoshio; Hirano, Daishi; Fujieda, Mikiya; Fujimoto, Shouichi; Masaki, Takao; Maruyama, Shoichi; Mastuo, Seiich

2016-12-01

Transition of adolescent and young adult (AYA) patients with childhood-onset chronic kidney diseases (C-CKD) from pediatric to adult renal services has received increasing attention. However, information on transition of Japanese patients with C-CKD is limited. The Transition Medicine Working Group, in collaboration with the Japanese Society for Nephrology, the Japanese Society for Pediatric Nephrology and the Japanese Society of Pediatric Urology, conducted a retrospective cross-sectional study in 2014 on issues concerning the transition of Japanese patients with C-CKD. Few institutions in Japan had transition programs and/or transition coordinators for patients with C-CKD. Refusal to transfer by patients or their families, lack of concern about transition and inability to decide on transfer were common reasons for non-transfer of patients still followed by pediatric renal services. Around 25 % of patients who had ended or interrupted follow-up by pediatric renal services presented to adult renal services because of symptoms associated with C-CKD. Patients with various types of childhood-onset nephrourological diseases were transferred from pediatric to adult renal services. IgA nephropathy, minimal change nephrotic syndrome and congenital anomalies of the kidney and urinary tract were the most frequent primary kidney diseases in adult patients with C-CKD. These survey results indicate the need for introduction of transitional care for Japanese AYA patients with C-CKD. Consensus guidelines for the optimal clinical management of AYA patients with C-CKD are required to ensure the continuity of care from child to adult renal services.

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers

PubMed Central

Paine, Christine Weirich; Stollon, Natalie B.; Lucas, Matthew S.; Brumley, Lauren D.; Poole, Erika S.; Peyton, Tamara; Grant, Anne W.; Jan, Sophia; Trachtenberg, Symme; Zander, Miriam; Mamula, Petar; Bonafide, Christopher P.; Schwartz, Lisa A.

2014-01-01

Background For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. Methods We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. Results Participants reported evaluating transition success and failure using healthcare utilization outcomes (e.g. maintaining continuity with adult providers), health outcomes (e.g. stable symptoms), and quality of life outcomes (e.g. attending school). The patients' level of developmental maturity (i.e. ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e. helicopter parent vs. optimally-involved parent) also influenced outcomes as well as the degree of support by providers (e.g. care coordination). Conclusion IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care. PMID:25137417

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers.

PubMed

Paine, Christine W; Stollon, Natalie B; Lucas, Matthew S; Brumley, Lauren D; Poole, Erika S; Peyton, Tamara; Grant, Anne W; Jan, Sophia; Trachtenberg, Symme; Zander, Miriam; Mamula, Petar; Bonafide, Christopher P; Schwartz, Lisa A

2014-11-01

For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. Participants reported evaluating transition success and failure using health care utilization outcomes (e.g., maintaining continuity with adult providers), health outcomes (e.g., stable symptoms), and quality of life outcomes (e.g., attending school). The patients' level of developmental maturity (i.e., ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e., helicopter parent versus optimally involved parent) and the degree of support by providers (e.g., care coordination) also influenced outcomes. IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.

Does the Sex Risk Quiz Predict Mycoplasma genitalium Infection in Urban Adolescents and Young Adult Women?

PubMed

Ronda, Jocelyn; Gaydos, Charlotte A; Perin, Jamie; Tabacco, Lisa; Coleman, Jenell; Trent, Maria

2018-06-04

Mycoplasma genitalium (MG) is a common sexually transmitted infection (STI) but there are limited strategies to identify individuals at risk of MG. Previously a sex risk quiz was used to predict STIs including Chlamydia trachomatis (CT), Neisseria gonorrhoeae (GC), and/or Trichomonas vaginalis (TV). The original quiz categorized individuals ≤25 years old as at risk of STIs, but the Centers for Disease Control identifies females <25 years old as at risk of STIs. In this study, the quiz was changed to categorize females <25 years old as high risk. The objective was to determine if the age-modified risk quiz predicted MG infection. A cross-sectional analysis of a prospective longitudinal study was performed including female adolescents and young adults (AYA) evaluated in multiple outpatient clinics. Participants completed an age-modified risk quiz about sexual practices. Scores ranged from 0 to 10 and were categorized as low-risk (0-3), medium-risk (4-7), and high-risk (8-10) based upon the STI prevalence for each score. Vaginal and/or endocervical specimens were tested for MG, TV, CT, and GC using the Aptima Gen-Probe nucleic amplification test. There were 693 participants. Most participants reported having 0-1 sexual partners in the last 90 days (91%) and inconsistent condom use (84%). Multivariable logistic regression analysis controlling for race, education, and symptom status demonstrated that a medium-risk score predicted MG infection among AYA <25 years old (adjusted OR 2.56 [95% CI 1.06-6.18]). A risk quiz may be useful during clinical encounters to identify AYA at risk of MG.

Frequency of daily tooth brushing: predictors of change in 9- to 11-year old US children

PubMed Central

Polk, D.E.; Geng, M.; Levy, S.; Koerber, A.; Flay, B.R.

2014-01-01

Objective To investigate whether an increase in daily tooth brushing frequency in children was predicted by either a) having a strong intention to brush twice a day or b) their parents receiving information about their new caries experience. Basic Research Design Secondary data analyses were conducted on two waves of data from the Aban Aya Youth Project and the Iowa Fluoride Study. Participants The Aban Aya study included 576 10- and 11-year olds from Chicago, Illinois. The Iowa Fluoride Study included a convenience sample of 709 babies born in Iowa. The present study includes those children at age 9. Main Outcome Measures In both studies, reported daily tooth brushing frequency was assessed twice six months apart. Results In the Aban Aya data, compared with children with a weak intention at wave 1 to brush twice a day, children with a strong intention to brush twice a day were more likely to increase their brushing frequency by wave 2, OR 7.0, 95%CI 1.5,32.9. In the Iowa Fluoride Study, compared with children who did not have new caries at wave 1, children who had new caries experience were less likely to increase their brushing frequency by wave 2, OR 0.4, 95%CI 0.2,0.9. Conclusions Strengthening intention to brush twice a day might increase children’s brushing frequency. However, simply providing parents with information about new caries probably will not. Future studies should assess tooth brushing frequency, habit strength, intention, and situational cues at closely-spaced waves. PMID:25300146

Mas aya del ancho rio: Mexicanos in Western New York

ERIC Educational Resources Information Center

Rivera, George, Jr.; Mejia, Juventino

1976-01-01

Examining Chicanos who live in western New York, the study distinguished between native types of Chicano residents and compared these along several areas of concern: demographic variables, intermarriage and the family, and self-identification and perceptions of discrimination. (NQ)

Identification of Metastatic Tumor Stem Cell

DTIC Science & Technology

2011-09-01

Aya Kobayashi, Bo Xia, Misako Watabe, Sudha K Pai, Shigeru Hirota, Fei Xing, Wen Liu, Puspa R Pandey, Koji Fukuda, Vishnu Modur, Arnab Ghosh, Andrew...Xing, Puspa R. Pandey, Koji Fukuda, Megumi Iiizumi, Kounosuke Watabe. Hyaluronan synthase 2 promotes tumor progression by stimulating interaction of

Cancer Disparities - Cancer Currents Blog

Cancer.gov

Blog posts on cancer health disparities research—including factors that influence disparities, disparities-related research efforts, and diversity in the cancer research workforce—from NCI Cancer Currents.

CancerDR: cancer drug resistance database.

PubMed

Kumar, Rahul; Chaudhary, Kumardeep; Gupta, Sudheer; Singh, Harinder; Kumar, Shailesh; Gautam, Ankur; Kapoor, Pallavi; Raghava, Gajendra P S

2013-01-01

Cancer therapies are limited by the development of drug resistance, and mutations in drug targets is one of the main reasons for developing acquired resistance. The adequate knowledge of these mutations in drug targets would help to design effective personalized therapies. Keeping this in mind, we have developed a database "CancerDR", which provides information of 148 anti-cancer drugs, and their pharmacological profiling across 952 cancer cell lines. CancerDR provides comprehensive information about each drug target that includes; (i) sequence of natural variants, (ii) mutations, (iii) tertiary structure, and (iv) alignment profile of mutants/variants. A number of web-based tools have been integrated in CancerDR. This database will be very useful for identification of genetic alterations in genes encoding drug targets, and in turn the residues responsible for drug resistance. CancerDR allows user to identify promiscuous drug molecules that can kill wide range of cancer cells. CancerDR is freely accessible at http://crdd.osdd.net/raghava/cancerdr/

Cancer Technology - Cancer Currents Blog

Cancer.gov

Blog posts on technologies that affect cancer research and care—including new technologies for detecting cancer, testing treatments, storing/analyzing data, and improving patient care—from NCI Cancer Currents.

Hereditary association between testicular cancer and familial ovarian cancer: A Familial Ovarian Cancer Registry study.

PubMed

Etter, John Lewis; Eng, Kevin; Cannioto, Rikki; Kaur, Jasmine; Almohanna, Hani; Alqassim, Emad; Szender, J Brian; Joseph, Janine M; Lele, Shashikant; Odunsi, Kunle; Moysich, Kirsten B

2018-04-01

Although family history of testicular cancer is well-established as a risk factor for testicular cancer, it is unknown whether family history of ovarian cancer is associated with risk of testicular cancer. Using data from the Familial Ovarian Cancer Registry on 2636 families with multiple cases of ovarian cancer, we systematically compared relative frequencies of ovarian cancer among relatives of men with testicular and non-testicular cancers. Thirty-one families with cases of both ovarian and testicular cancer were identified. We observed that, among men with cancer, those with testicular cancer were more likely to have a mother with ovarian cancer than those with non-testicular cancers (OR = 3.32, p = 0.004). Zero paternal grandmothers of men with testicular cancer had ovarian cancer. These observations provide compelling preliminary evidence for a familial association between ovarian and testicular cancers Future studies should be designed to further investigate this association and evaluate X-linkage. Copyright © 2018 Elsevier Ltd. All rights reserved.

Vaginal cancer

MedlinePlus

Vaginal cancer; Cancer - vagina; Tumor - vaginal ... Most vaginal cancers occur when another cancer, such as cervical or endometrial cancer , spreads. This is called secondary vaginal cancer. Cancer ...

Cancer - resources

MedlinePlus

Resources - cancer ... The following organizations are good resources for information on cancer : American Cancer Society -- www.cancer.org Cancer Care -- www.cancercare.org Cancer.Net -- www.cancer.net/coping- ...

Basic Hearing and Echolocation Mechanisms of Marine Mammals: Measured Auditory Evoked Potential and Behavioral Experiments FY 2007

DTIC Science & Technology

2007-01-01

Breese, M. (2007) Evoked-potential recovery during double click stimulation in a whale: A possibility of biosonar automatic gain control. Journal of...Yokohama Japan (published) Supin A.Ya, Nachtigall, P.E., and Breese, M. Source level to sensation level ratio of transmitted biosonar pulses in an

6 Common Cancers - Prostate Cancer

MedlinePlus

... Bar Home Current Issue Past Issues 6 Common Cancers - Prostate Cancer Past Issues / Spring 2007 Table of Contents For ... early screening. Photo: AP Photo/Danny Moloshok Prostate Cancer The prostate gland is a walnut-sized structure ...

Anal Cancer

MedlinePlus

... are here Home > Types of Cancer > Anal Cancer Anal Cancer This is Cancer.Net’s Guide to Anal Cancer. Use the menu below to choose the ... social workers, and patient advocates. Cancer.Net Guide Anal Cancer Introduction Statistics Risk Factors and Prevention Screening ...

Anti-Cancer Phytometabolites Targeting Cancer Stem Cells

PubMed Central

Torquato, Heron F.V.; Goettert, Márcia I.; Justo, Giselle Z.; Paredes-Gamero, Edgar J.

2017-01-01

Medicinal plants are a plentiful source of bioactive molecules with much structural diversity. In cancer treatment, molecules obtained from plants represent an attractive alternative to other treatments because several plant-derived compounds have exhibited lower toxicity and higher selectivity against cancer cells. In this review, we focus on the possible application of bioactive molecules obtained from plants against more primitive cell populations in cancers, cancer stem cells. Cancer stem cells are present in several kinds of tumors and are responsible for recurrences and metastases. Common anti-cancer drugs exhibit lower effectiveness against cancer stem cells because of their biological features. However, recently discovered natural phytometabolites exert cytotoxic effects on this rare population of cells in cancers. Therefore, this review presents the latest research on promising compounds from plants that can act as antitumor drugs and that mainly affect stem cell populations in cancers. PMID:28367074

Thyroid Cancer

MedlinePlus

... are here Home > Types of Cancer > Thyroid Cancer Thyroid Cancer This is Cancer.Net’s Guide to Thyroid Cancer. Use the menu below to choose the Overview/ ... social workers, and patient advocates. Cancer.Net Guide Thyroid Cancer Introduction Statistics Medical Illustrations Risk Factors Symptoms and ...

Cancer Biomarkers | Division of Cancer Prevention

Cancer.gov

[[{"fid":"175","view_mode":"default","fields":{"format":"default","field_file_image_alt_text[und][0][value]":"Cancer Biomarkers Research Group Homepage Logo","field_file_image_title_text[und][0][value]":"Cancer Biomarkers Research Group Homepage Logo","field_folder[und]":"15"},"type":"media","attributes":{"alt":"Cancer Biomarkers Research Group Homepage Logo","title":"Cancer

HPV in genital cancers (at the exception of cervical cancer) and anal cancers.

PubMed

de Sanjosé, Silvia; Bruni, Laia; Alemany, Laia

2014-12-01

Human papillomavirus (HPV) infection has been firmly established as a central and necessary cause of invasive cervical cancer and it has been etiologically linked to other anogenital (vulva, vagina, anus and penis) and head and neck cancers, particularly oropharyngeal. Although being rare, the incidence of some of these cancers in some countries has increased in the last decades. HPV-related anogenital tumors share many risk factors with cervical cancer. The HPV aetiological contribution differs in each anatomical location reflecting differences in the natural history and viral tissue tropism. The highest prevalence of HPV DNA in cancers other than cervix has been described for anal, followed by vagina, penile and vulvar cancers. HPV16 has been described as the most common type detected in all cancer sites with different contributions being the highest in anal carcinoma (around 80% of HPV DNA positive anal cancers) and the lowest in vaginal cancers with a contribution similar to that found in cervical cancers (around 60%). Current HPV vaccines have already demonstrated their efficacy in preventing anogenital pre-neoplastic lesions caused by vaccine HPV types. HPV-based prevention tools like HPV vaccination and to a lesser extend screening (e.g. for anal cancer) can be useful measures for reducing the burden of these anogenital cancers. Copyright © 2014 Elsevier Masson SAS. All rights reserved.

Marine Mammals: Hearing and Echolocation at Coconut Island

DTIC Science & Technology

2010-01-01

biosonar discrimination capability which may result in reduced ability to forage A formerly stranded long finned pilot whale and a recently stranded...control in odontocete biosonar : an evoked-potential study. J Acous Soc Am Yuen, M.E., Nachtigall, P.E., and Supin, A.Ya., and Breese, M. (2005

Experiencing Mathematics: Activities to Engage the High School Student. Teacher Edition

ERIC Educational Resources Information Center

Breunlin, R. James; Kasper, Timothy A.; Kolet, Michelle; Letzel, Kendra; Letzel, Thomas; Noah, John; Schutte, Jennifer; Williams, Bob; Zickert, Chris

2006-01-01

This book is the result of the collaborative effort of nine AYA National Board Certified Teachers in Mathematics. It represents a compilation of teacher-tested activities that prompt high school students to explore, conjecture and reflect on their mathematical adventures-- thus "experience mathematics." This edition will educate the teacher…

Global Cancer in Women: Cancer Control Priorities.

PubMed

Islami, Farhad; Torre, Lindsey A; Drope, Jeffrey M; Ward, Elizabeth M; Jemal, Ahmedin

2017-04-01

This review is an abbreviated version of a report prepared for the American Cancer Society Global Health department and EMD Serono, Inc., a subsidiary of Merck KGaA, Darmstadt, Germany, which was released at the Union for International Cancer Control World Cancer Congress in Paris in November 2016. The original report can be found at https://www.cancer.org/health-care-professionals/our-global-health-work/global-cancer-burden/global-burden-of-cancer-in-women.html. Staff in the Intramural Research Department of the American Cancer Society designed and conducted the study, including analysis, interpretation, and presentation of the review. The funding sources had no involvement in the study design, data analysis and interpretation, or preparation of the review The global burden of cancer in women has recently received much attention, but there are few comprehensive reviews of the burden and policy approaches to reduce it. This article, second in series of two, summarizes the most important cancer control priorities with specific examples of proven interventions, with a particular focus on primary prevention in low- and middle-income countries (LMIC). There are a number of effective cancer control measures available to countries of all resource levels. Many of these measures are extremely cost-effective, especially in the case of tobacco control and vaccination. Countries must prioritize efforts to reduce known cancer risk factors and make prevention accessible to all. Effective treatments and palliative care are also needed for those who develop cancer. Given scarce resources, this may seem infeasible in many LMICs, but past experience with other diseases like HIV, tuberculosis, and malaria have shown that it is possible to make affordable care accessible to all. Expansion of population-based cancer registries and research in LMICs are needed for setting cancer control priorities and for determining the most effective interventions. For LMICs, all of these activities

Colon cancer

MedlinePlus

Colorectal cancer; Cancer - colon; Rectal cancer; Cancer - rectum; Adenocarcinoma - colon; Colon - adenocarcinoma; Colon carcinoma ... In the United States, colorectal cancer is one of the leading ... to cancer. Early diagnosis can often lead to a complete cure. ...

Acceptance and commitment therapy in youth with neurofibromatosis type 1 (NF1) and chronic pain and their parents: A pilot study of feasibility and preliminary efficacy.

PubMed

Martin, Staci; Wolters, Pamela L; Toledo-Tamula, Mary Anne; Schmitt, Shawn Nelson; Baldwin, Andrea; Starosta, Amy; Gillespie, Andrea; Widemann, Brigitte

2016-06-01

Neurofibromatosis type 1 (NF1) is an autosomal dominant genetic disorder affecting about 1 in 3,500 individuals. Chronic pain is commonly reported among individuals with NF1 and plexiform neurofibroma tumors (PNs). Acceptance and Commitment Therapy (ACT), an empirically supported method for addressing chronic pain, helps individuals re-focus on valued relationships and activities. This pilot study investigated the feasibility and preliminary efficacy of a brief ACT workshop in the NF1 population. Eligible participants included adolescents and young adults (AYA; 12-21 years) with NF1 and chronic pain that interfered with daily functioning and their parents. Patients and parents completed baseline measures of pain interference, pain intensity, functional disability, pain acceptance, depression, and anxiety. Then, AYA and parents participated separately in a 2-day small-group ACT workshop. A telephone booster session occurred 1 month post-intervention. Three-month post-treatment measures were completed by mail. Ten adolescents (4 males; M age = 16.9 years) and seven parents provided baseline and 3-month data. Mean satisfaction with the study was moderate to high (3.9 for patients and 4.6 for parents on a 1-5 scales). Patients and parents reported significant declines in patients' pain interference at 3 months post-treatment. Patient-reported pain intensity significantly declined from baseline to 3 months. Parents reported marginally greater acceptance of their child's pain. No changes emerged in functional ability or mood. Preliminary findings suggest that a brief ACT group intervention is feasible and may help AYA with NF1 and PNs cope with their chronic pain, although larger randomized studies are needed to confirm treatment efficacy. © 2016 Wiley Periodicals, Inc. © 2016 Wiley Periodicals, Inc.

Lifetime prevalence of sexual intercourse and contraception use at last sex among adolescents and young adults with congenital heart disease.

PubMed

Fry, Kevin M; Gerhardt, Cynthia A; Ash, Jerry; Zaidi, Ali N; Garg, Vidu; McBride, Kim L; Fitzgerald-Butt, Sara M

2015-04-01

Because of the increased risks associated with unplanned pregnancy for males and females with congenital heart disease (CHD), we investigated sexual intercourse and contraception use in these adolescents and young adults (AYA) and compared the same with national and state population data. We recruited 337 AYA with structural CHD aged 15-25 years (Mage = 19 years, standard deviation = 3.1; 53% male, 84% white) from an outpatient cardiology clinic to participate in a larger study assessing genetic knowledge and health behaviors. Cumulative lifetime prevalence of adolescent (aged 15-18 years) sexual intercourse was compared with the 2011 Youth Risk Behavior Surveillance System and the 2007 Ohio Youth Risk Behavior Survey. Cumulative lifetime prevalence of young adult (aged 19-25 years) sexual intercourse and contraception use at last sex were compared with the 2006-2008 National Survey of Family Growth. Reported rates of ever having sexual intercourse, 26% of adolescents and 74% of young adults with CHD, were significantly lower than general population rates (47% and 86% respectively; p < .001). Similar to the general population, 77% of previously sexually active young adults with CHD reported using at least one effective method of contraception at last intercourse, whereas 25% used dual effective methods and 23% used no effective method. Lower rates of ever having sexual intercourse in this population suggest that the psychosexual development of AYA with CHD may lag behind their peers. As nearly one in four participants reported using no effective method of contraception, health care providers should increase discussions of contraception with males and females with CHD. Copyright © 2015 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.

How childhood cancers are different from adult cancers

MedlinePlus

... medlineplus.gov/ency/patientinstructions/000845.htm How childhood cancers are different from adult cancers To use the sharing features on this page, ... with cancer can be cured. Types of Childhood Cancers Cancer in children is rare, but some types ...

The Complex Kinematics of Galaxies in Hickson 67

NASA Astrophysics Data System (ADS)

Bettoni, D.; Buson, L. M.

The kinematics of galaxies belonging to the Hickson compact group HCG67 are investigated. The latter consists of four galaxies, three of which (a, c, d) are embedded in a common envelope. The fourth galaxy (b) is a spiral that is detected both in radio and in IR wave-bands. Our observations show that the three galaxies in apparent interaction are probably caught during an ongoing merger process. Z Balcells, M., Morganti, R., Oosterloo, T., Peréz-Fournon, I. González Serrano, J. I. 1995, aap, 302, 665. Bertola, F., Bettoni, D., Rusconi, L., Sedmak, G. 1984, aj, 89, 356 Barnes, J. 1985, mnras, 215, 517 Hickson, P. 1982, apj, 255, 382 Hickson, P. 1993, Astrophys. Lett. Commun., 29, 1 Hickson, P., Menon, T. K., Palumbo, G. G. C., Persic, M. 1989, apj, 341,679 Leon, S., Combes, F., Menon, T. K. 1998, aap, 330, 37 Mamon, G. A. 1992, in "Physics of Nearby Galaxies: Nature or Nurture?", ed. T. X6. Thuan, C. Balkowski & Thran Thanh Van (12th Moriond Astrophysics Meeting)(Editions Frontiéres), p.367. Mendes de Oliveira, C., Hickson, P. 1991, apj, 380, 30 Mendes de Oliveira, C., Plana, H, Amram, P., Bolte, M., Boulesteix, J. 1998, apj, 507, 691 Menon, T. K. 1995, mnras, 274, 845 Rabaça, C. R., Sulentic, J. W. 1991, baas, 23, 1338 Zepf, S. E., Whitmore, B. C., Levison, H. F. 1991, apj, 383, 524

Lung cancer

MedlinePlus

Cancer - lung ... lung cancer than of breast, colon, and prostate cancers combined. Lung cancer is more common in older adults. It ... Horn L, Eisenberg R, Gius D, et al. Cancer of the lung: non-small cell lung cancer and small cell ...

Endometrial Cancer Prevention

MedlinePlus

... Common Cancer Types Recurrent Cancer Common Cancer Types Bladder Cancer Breast Cancer Colorectal Cancer Kidney (Renal Cell) Cancer ... Heart disease. Head and neck cancers . Lung cancer . Bladder cancer . Pancreatic cancer . It is not known if the ...

Cancer Therapy Evaluation Program | Office of Cancer Genomics

Cancer.gov

The Cancer Therapy Evaluation Program (CTEP) seeks to improve the lives of cancer patients by finding better treatments, control mechanisms, and cures for cancer. CTEP funds a national program of cancer research, sponsoring clinical trials to evaluate new anti-cancer agents.

Prostate cancer chemoprevention agent development: the National Cancer Institute, Division of Cancer Prevention portfolio.

PubMed

Parnes, Howard L; House, Margaret G; Kagan, Jacob; Kausal, David J; Lieberman, Ronald

2004-02-01

We describe the current National Cancer Institute chemoprevention agent development program and provide a summary of the intermediate end points used. The National Cancer Institute is currently sponsoring a wide range of studies of promising chemoprevention agents in a variety of informative cohorts, eg high grade prostatic intraepithelial neoplasia, positive family history of cancer, increased prostate specific antigen with negative biopsies, prostate cancer followed expectantly, prostate cancer awaiting definitive therapy and the general population. The rationale for each agent under investigation is derived from epidemiological observations, prostate cancer treatment trials, secondary analyses of large cancer prevention studies, an understanding of cancer biology and prostate carcinogenesis, and/or experimental animal models. Carcinogenesis is a multistep process occurring over decades which is characterized by disruption of the normal regulatory pathways controlling cellular proliferation, programmed cell death and differentiation. Administration of agents to reverse, inhibit or slow this process of malignant transformation is known as chemoprevention. Chemoprevention represents a promising approach to reducing the morbidity and mortality of prostate cancer. A variety of agents are currently being studied in phase 2 clinical trials, some of which may warrant subsequent evaluation in phase 3 trials with definitive cancer end points. Two large phase 3 trials, the Prostate Cancer Prevention Trial and the Selenium and Vitamin E Cancer Prevention Trial, which are ongoing, are also sponsored by the National Cancer Institute.

Quality of Life in Patients Undergoing Radiation Therapy for Primary Lung Cancer, Head and Neck Cancer, or Gastrointestinal Cancer

ClinicalTrials.gov

2017-05-23

Anal Cancer; Colorectal Cancer; Esophageal Cancer; Extrahepatic Bile Duct Cancer; Gallbladder Cancer; Gastric Cancer; Head and Neck Cancer; Liver Cancer; Lung Cancer; Pancreatic Cancer; Small Intestine Cancer

Recruitment of Minority Adolescents and Young Adults into Randomised Clinical Trials: Testing the Design of the Technology Enhanced Community Health Nursing (TECH-N) Pelvic Inflammatory Disease Trial.

PubMed

Trent, Maria; Chung, Shang-En; Gaydos, Charlotte; Frick, Kevin D; Anders, Jennifer; Huettner, Steven; Rothman, Richard; Butz, Arlene

2016-08-01

Pelvic inflammatory disease (PID) disproportionately affects adolescent and young adult (AYA) women and can negatively influence reproductive health trajectories. Few randomized controlled trials (RCTs) have focused on strategies to improve outpatient adherence or to reduce reproductive morbidity in this population. This paper describes the research methods and preliminary effectiveness of recruitment, retention, and intervention strategies employed in a novel RCT designed to test a technology-enhanced community-health nursing (TECH-N) intervention among urban AYA with PID. AYA women aged 13-25 years were recruited during acute PID visits in outpatient clinics and emergency departments (ED) to participate in this IRB-approved trial. Participants completed an audio-computerized self-interview (ACASI), provided vaginal specimens, and were randomized to standard treatment or the intervention. Intervention participants received text-messaging support for 30 days and a community health nurse (CHN) interventionist performed a home visit with clinical assessment within 5 days after enrollment. All patients received a full course of medications and completed research visits at 14-days (adherence), 30 days and 90 days with by an outreach worker. STI testing performed at the 30-and 90-day visits. Exploratory analyses using descriptive statistics were conducted to examine recruitment, retention, and follow-up data to test the overall design of the intervention. In the first 48 months, 64% of 463 patients were eligible for the study and 81.2% of 293 eligible patients were recruited for the study (63.3%); 238 (81.2%) of eligible patients were enrolled. Most participants were African American (95.6%) with a mean age of 18.6 (2.3). Ninety-four percent of individuals assigned to the TECH-N intervention completed the nursing visits. All completed visits have been within the 5-day window and over 90% of patients in both arms have been retained over the 3-month follow-up period

American Cancer Society lung cancer screening guidelines.

PubMed

Wender, Richard; Fontham, Elizabeth T H; Barrera, Ermilo; Colditz, Graham A; Church, Timothy R; Ettinger, David S; Etzioni, Ruth; Flowers, Christopher R; Gazelle, G Scott; Kelsey, Douglas K; LaMonte, Samuel J; Michaelson, James S; Oeffinger, Kevin C; Shih, Ya-Chen Tina; Sullivan, Daniel C; Travis, William; Walter, Louise; Wolf, Andrew M D; Brawley, Otis W; Smith, Robert A

2013-01-01

Findings from the National Cancer Institute's National Lung Screening Trial established that lung cancer mortality in specific high-risk groups can be reduced by annual screening with low-dose computed tomography. These findings indicate that the adoption of lung cancer screening could save many lives. Based on the results of the National Lung Screening Trial, the American Cancer Society is issuing an initial guideline for lung cancer screening. This guideline recommends that clinicians with access to high-volume, high-quality lung cancer screening and treatment centers should initiate a discussion about screening with apparently healthy patients aged 55 years to 74 years who have at least a 30-pack-year smoking history and who currently smoke or have quit within the past 15 years. A process of informed and shared decision-making with a clinician related to the potential benefits, limitations, and harms associated with screening for lung cancer with low-dose computed tomography should occur before any decision is made to initiate lung cancer screening. Smoking cessation counseling remains a high priority for clinical attention in discussions with current smokers, who should be informed of their continuing risk of lung cancer. Screening should not be viewed as an alternative to smoking cessation. Copyright © 2013 American Cancer Society, Inc.

Cancer Genes in Lung Cancer

PubMed Central

El-Telbany, Ahmed

2012-01-01

Cancer is now known as a disease of genomic alterations. Mutational analysis and genomics profiling in recent years have advanced the field of lung cancer genetics/genomics significantly. It is becoming more accepted now that the identification of genomic alterations in lung cancer can impact therapeutics, especially when the alterations represent “oncogenic drivers” in the processes of tumorigenesis and progression. In this review, we will highlight the key driver oncogenic gene mutations and fusions identified in lung cancer. The review will summarize and report the available demographic and clinicopathological data as well as molecular details behind various lung cancer gene alterations in the context of race. We hope to shed some light into the disparities in the incidence of various genetic mutations among lung cancer patients of different racial backgrounds. As molecularly targeted therapy continues to advance in lung cancer, racial differences in specific genetic/genomic alterations can have an important impact in the choices of therapeutics and in our understanding of the drug sensitivity/resistance profile. The most relevant genes in lung cancer described in this review include the following: EGFR, KRAS, MET, LKB1, BRAF, PIK3CA, ALK, RET, and ROS1. Commonly identified genetic/genomic alterations such as missense or nonsense mutations, small insertions or deletions, alternative splicing, and chromosomal fusion rearrangements were discussed. Relevance in current targeted therapeutic drugs was mentioned when appropriate. We also highlighted various targeted therapeutics that are currently under clinical development, such as the MET inhibitors and antibodies. With the advent of next-generation sequencing, the landscape of genomic alterations in lung cancer is expected to be much transformed and detailed in upcoming years. These genomic landscape differences in the context of racial disparities should be emphasized both in tumorigenesis and in drug

Center for Cancer Genomics | Office of Cancer Genomics

Cancer.gov

The Center for Cancer Genomics (CCG) was established to unify the National Cancer Institute's activities in cancer genomics, with the goal of advancing genomics research and translating findings into the clinic to improve the precise diagnosis and treatment of cancers. In addition to promoting genomic sequencing approaches, CCG aims to accelerate structural, functional and computational research to explore cancer mechanisms, discover new cancer targets, and develop new therapeutics.

Erlotinib Hydrochloride and Cetuximab in Treating Patients With Advanced Gastrointestinal Cancer, Head and Neck Cancer, Non-Small Cell Lung Cancer, or Colorectal Cancer

ClinicalTrials.gov

2015-09-28

Adenocarcinoma of the Colon; Adenocarcinoma of the Rectum; Advanced Adult Primary Liver Cancer; Carcinoma of the Appendix; Gastrointestinal Stromal Tumor; Metastatic Gastrointestinal Carcinoid Tumor; Metastatic Squamous Neck Cancer With Occult Primary; Recurrent Adenoid Cystic Carcinoma of the Oral Cavity; Recurrent Adult Primary Liver Cancer; Recurrent Anal Cancer; Recurrent Basal Cell Carcinoma of the Lip; Recurrent Colon Cancer; Recurrent Esophageal Cancer; Recurrent Esthesioneuroblastoma of the Paranasal Sinus and Nasal Cavity; Recurrent Extrahepatic Bile Duct Cancer; Recurrent Gallbladder Cancer; Recurrent Gastric Cancer; Recurrent Gastrointestinal Carcinoid Tumor; Recurrent Inverted Papilloma of the Paranasal Sinus and Nasal Cavity; Recurrent Lymphoepithelioma of the Nasopharynx; Recurrent Lymphoepithelioma of the Oropharynx; Recurrent Metastatic Squamous Neck Cancer With Occult Primary; Recurrent Midline Lethal Granuloma of the Paranasal Sinus and Nasal Cavity; Recurrent Mucoepidermoid Carcinoma of the Oral Cavity; Recurrent Non-small Cell Lung Cancer; Recurrent Pancreatic Cancer; Recurrent Rectal Cancer; Recurrent Salivary Gland Cancer; Recurrent Small Intestine Cancer; Recurrent Squamous Cell Carcinoma of the Hypopharynx; Recurrent Squamous Cell Carcinoma of the Larynx; Recurrent Squamous Cell Carcinoma of the Lip and Oral Cavity; Recurrent Squamous Cell Carcinoma of the Nasopharynx; Recurrent Squamous Cell Carcinoma of the Oropharynx; Recurrent Squamous Cell Carcinoma of the Paranasal Sinus and Nasal Cavity; Recurrent Verrucous Carcinoma of the Larynx; Recurrent Verrucous Carcinoma of the Oral Cavity; Small Intestine Adenocarcinoma; Small Intestine Leiomyosarcoma; Small Intestine Lymphoma; Stage IV Adenoid Cystic Carcinoma of the Oral Cavity; Stage IV Anal Cancer; Stage IV Basal Cell Carcinoma of the Lip; Stage IV Colon Cancer; Stage IV Esophageal Cancer; Stage IV Esthesioneuroblastoma of the Paranasal Sinus and Nasal Cavity; Stage IV Gastric Cancer

Cancer Vaccines

MedlinePlus

... Partners & Collaborators Spotlight on Scientists Research Areas Cancer Biology Research Cancer Genomics Research Research on Causes of ... Collaborators Spotlight on Scientists NCI Research Areas Cancer Biology Cancer Genomics Causes of Cancer Diagnosis Prevention Screening & ...

Oral cancer

MedlinePlus

Cancer - mouth; Mouth cancer; Head and neck cancer - oral; Squamous cell cancer - mouth; Malignant neoplasm - oral ... Oral cancer most commonly involves the lips or the tongue. It may also occur on the: Cheek lining Floor ...

Ginseng in Decreasing Cancer-Related Fatigue After Treatment in Cancer Survivors

ClinicalTrials.gov

2018-03-15

Cancer Survivor; Stage I Breast Cancer AJCC v7; Stage I Colon Cancer AJCC v6 and v7; Stage IA Breast Cancer AJCC v7; Stage IB Breast Cancer AJCC v7; Stage II Breast Cancer AJCC v6 and v7; Stage II Colon Cancer AJCC v7; Stage IIA Breast Cancer AJCC v6 and v7; Stage IIA Colon Cancer AJCC v7; Stage IIB Breast Cancer AJCC v6 and v7; Stage IIB Colon Cancer AJCC v7; Stage IIC Colon Cancer AJCC v7; Stage III Breast Cancer AJCC v7; Stage III Colon Cancer AJCC v7; Stage IIIA Breast Cancer AJCC v7; Stage IIIA Colon Cancer AJCC v7; Stage IIIB Breast Cancer AJCC v7; Stage IIIB Colon Cancer AJCC v7; Stage IIIC Breast Cancer AJCC v7; Stage IIIC Colon Cancer AJCC v7

Prostate cancer - resources

MedlinePlus

Resources - prostate cancer ... The following organizations are good resources for information on prostate cancer : American Cancer Society -- www.cancer.org/cancer/prostate-cancer.html National Cancer Institute -- www.cancer.gov/ ...

Cancer Biomarkers Staff | Division of Cancer Prevention

Cancer.gov

The Division of Cancer Prevention (DCP) conducts and supports research to determine a person's risk of cancer and to find ways to reduce the risk. This knowledge is critical to making progress against cancer because risk varies over the lifespan as genetic and epigenetic changes can transform healthy tissue into invasive cancer.

Cancer and Social Media: A Comparison of Traffic about Breast Cancer, Prostate Cancer, and Other Reproductive Cancers on Twitter and Instagram.

PubMed

Vraga, Emily K; Stefanidis, Anthony; Lamprianidis, Georgios; Croitoru, Arie; Crooks, Andrew T; Delamater, Paul L; Pfoser, Dieter; Radzikowski, Jacek R; Jacobsen, Kathryn H

2018-01-01

Social media are often heralded as offering cancer campaigns new opportunities to reach the public. However, these campaigns may not be equally successful, depending on the nature of the campaign itself, the type of cancer being addressed, and the social media platform being examined. This study is the first to compare social media activity on Twitter and Instagram across three time periods: #WorldCancerDay in February, the annual month-long campaigns of National Breast Cancer Awareness Month (NBCAM) in October and Movember in November, and during the full year outside of these campaigns. Our results suggest that women's reproductive cancers - especially breast cancer - tend to outperform men's reproductive cancer - especially prostate cancer - across campaigns and social media platforms. Twitter overall generates substantially more activity than Instagram for both cancer campaigns, suggesting Instagram may be an untapped resource. However, the messaging for both campaigns tends to focus on awareness and support rather than on concrete actions and behaviors. We suggest health communication efforts need to focus on effective messaging and building engaged communities for cancer communication across social media platforms.

Cancer stem cells and personalized cancer nanomedicine.

PubMed

Gener, Petra; Rafael, Diana Fernandes de Sousa; Fernández, Yolanda; Ortega, Joan Sayós; Arango, Diego; Abasolo, Ibane; Videira, Mafalda; Schwartz, Simo

2016-02-01

Despite the progress in cancer treatment over the past years advanced cancer is still an incurable disease. Special attention is pointed toward cancer stem cell (CSC)-targeted therapies, because this minor cell population is responsible for the treatment resistance, metastatic growth and tumor recurrence. The recently described CSC dynamic phenotype and interconversion model of cancer growth hamper even more the possible success of current cancer treatments in advanced cancer stages. Accordingly, CSCs can be generated through dedifferentiation processes from non-CSCs, in particular, when CSC populations are depleted after treatment. In this context, the use of targeted CSC nanomedicines should be considered as a promising tool to increase CSC sensitivity and efficacy of specific anti-CSC therapies.

American Cancer Society Lung Cancer Screening Guidelines

PubMed Central

Wender, Richard; Fontham, Elizabeth T. H.; Barrera, Ermilo; Colditz, Graham A.; Church, Timothy R.; Ettinger, David S.; Etzioni, Ruth; Flowers, Christopher R.; Gazelle, G. Scott; Kelsey, Douglas K.; LaMonte, Samuel J.; Michaelson, James S.; Oeffinger, Kevin C.; Shih, Ya-Chen Tina; Sullivan, Daniel C.; Travis, William; Walter, Louise; Wolf, Andrew M. D.; Brawley, Otis W.; Smith, Robert A.

2013-01-01

Findings from the National Cancer Institute’s National Lung Screening Trial established that lung cancer mortality in specific high-risk groups can be reduced by annual screening with low-dose computed tomography. These findings indicate that the adoption of lung cancer screening could save many lives. Based on the results of the National Lung Screening Trial, the American Cancer Society is issuing an initial guideline for lung cancer screening. This guideline recommends that clinicians with access to high-volume, high-quality lung cancer screening and treatment centers should initiate a discussion about screening with apparently healthy patients aged 55 years to 74 years who have at least a 30-pack-year smoking history and who currently smoke or have quit within the past 15 years. A process of informed and shared decision-making with a clinician related to the potential benefits, limitations, and harms associated with screening for lung cancer with low-dose computed tomography should occur before any decision is made to initiate lung cancer screening. Smoking cessation counseling remains a high priority for clinical attention in discussions with current smokers, who should be informed of their continuing risk of lung cancer. Screening should not be viewed as an alternative to smoking cessation. PMID:23315954

The Island That Moves: Shamanistic Practices and Psychic Posturing in One Naskapi Myth from Little Whale River.

ERIC Educational Resources Information Center

Ballard, Charles G.

This paper analyzes religious, psychological, artistic, and environmental elements in one Naskapi myth, and provides a means of understanding the world of the Montagnais and Naskapi hunting tribes of the Labrador Peninsula. In "Ayas'i's Son," the (unnamed) hero is falsely accused of rape by his father's youngest wife. The son is exiled…

A Constructivist-Based Model for the Teaching of Dissolution of Gas in a Liquid

ERIC Educational Resources Information Center

Calik, Muammer; Ayas, Alipasa; Coll, Richard K.

2006-01-01

In this article we present details of a four-step constructivist-based teaching strategy, which helps students understand the dissolution of a gas in a liquid. The model derived from Ayas (1995) involves elicitation of pre-existing ideas, focusing on the target concept, challenging students' ideas, and applying newly constructed ideas to similar…

Participation in Daily Activities of Young Adults with High Functioning Autism Spectrum Disorder

ERIC Educational Resources Information Center

McCollum, Mary; LaVesser, Patti; Berg, Christine

2016-01-01

Young adults with an autism spectrum disorder (ASD) struggle to assume adult roles. This research assessed the feasibility of using the Adolescent and Young Adult Activity Card Sort (AYA-ACS) with emerging adults with high functioning ASD. Two phases were utilized during this research: (1) comparing the activity participation reported by emerging…

[Lucy's cancer(s): A prehistorical origin?

PubMed

Chene, G; Lamblin, G; Le Bail-Carval, K; Beaufils, E; Chabert, P; Gaucherand, P; Mellier, G; Coppens, Y

2016-12-01

The recent discovery of the earliest hominin cancer, a 1.7-million-year-old osteosarcoma from South Africa has raised the question of the origin of cancer and its determinants. We aimed to determine whether malignant and benign tumors exist in the past societies. A review of literature using Medline database and Google about benign and malignant tumors in prehistory and antiquity. Only cases with morphological and paraclinical analysis were included. The following keywords were used: cancer; paleopathology; malignant neoplasia; benign tumor; leiomyoma; myoma; breast cancer; mummies; soft tissue tumor; Antiquity. Thirty-five articles were found in wich there were 34 malignant tumors, 10 benign tumors and 11 gynecological benign tumors. The fact that there were some malignant tumors, even few tumors and probably underdiagnosed, in the past may be evidence that cancer is not only a disease of the modern world. Cancer may be indeed a moving target: we have likely predisposing genes to cancer inherited from our ancestors. The malignant disease could therefore appear because of our modern lifestyle (carcinogens and risk factors related to the modern industrial society). Copyright © 2016 Elsevier Masson SAS. All rights reserved.

Colon cancer - resources

MedlinePlus

Resources - colon cancer ... The following organizations are good resources for information on colon cancer : American Cancer Society -- www.cancer.org/cancer/colon-rectal-cancer.html Colon Cancer Alliance -- www.ccalliance. ...

More Cancer Types - SEER Cancer Stat Facts

Cancer.gov

Cancer Statistical Fact Sheets are summaries of common cancer types developed to provide an overview of frequently-requested cancer statistics including incidence, mortality, survival, stage, prevalence, and lifetime risk.

Quality of Life and Care Needs of Patients With Persistent or Recurrent Ovarian Cancer, Fallopian Tube Cancer, or Peritoneal Cancer

ClinicalTrials.gov

2017-05-03

Anxiety; Fatigue; Nausea and Vomiting; Neurotoxicity Syndrome; Recurrent Fallopian Tube Carcinoma; Recurrent Ovarian Carcinoma; Recurrent Primary Peritoneal Carcinoma; Stage I Ovarian Cancer; Stage IA Fallopian Tube Cancer; Stage IB Fallopian Tube Cancer; Stage IC Fallopian Tube Cancer; Stage II Ovarian Cancer; Stage IIA Fallopian Tube Cancer; Stage IIB Fallopian Tube Cancer; Stage IIC Fallopian Tube Cancer; Stage III Ovarian Cancer; Stage III Primary Peritoneal Cancer; Stage IIIA Fallopian Tube Cancer; Stage IIIB Fallopian Tube Cancer; Stage IIIC Fallopian Tube Cancer; Stage IV Fallopian Tube Cancer; Stage IV Ovarian Cancer; Stage IV Primary Peritoneal Cancer

Study characterizes how DNA-damaging anti-cancer drugs kill cancer cells | Center for Cancer Research

Cancer.gov

Patients whose cancer cells express the SLFN11 protein are more likely to respond to DNA-damaging anti-cancer drugs than those whose cancer cells don’t express SLFN11. In a new study, Center for Cancer Research investigators show how these drugs recruit SLFN11 to block replication and kill cancer cells. Read more…

sEphB4-HSA Before Surgery in Treating Patients With Bladder Cancer, Prostate Cancer, or Kidney Cancer

ClinicalTrials.gov

2018-06-08

Infiltrating Bladder Urothelial Carcinoma; Recurrent Bladder Carcinoma; Stage I Prostate Cancer; Stage I Renal Cell Cancer; Stage II Bladder Urothelial Carcinoma; Stage II Renal Cell Cancer; Stage IIA Prostate Cancer; Stage IIB Prostate Cancer; Stage III Prostate Cancer; Stage III Renal Cell Cancer

Penile cancer

MedlinePlus

Cancer - penis; Squamous cell cancer - penis; Glansectomy; Partial penectomy ... cancer may include: Chemotherapy -- uses medicines to kill cancer cells Radiation -- uses high-powered x-rays to kill ...

Testicular cancer

MedlinePlus

Cancer - testes; Germ cell tumor; Seminoma testicular cancer; Nonseminoma testicular cancer; Testicular neoplasm ... The exact cause of testicular cancer is unknown. Factors that may ... Abnormal testicle development Exposure to certain chemicals ...

Maternal lung cancer and testicular cancer risk in the offspring.

PubMed

Kaijser, Magnus; Akre, Olof; Cnattingius, Sven; Ekbom, Anders

2003-07-01

It has been hypothesized that smoking during pregnancy could increase the offspring's risk for testicular cancer. This hypothesis is indirectly supported by both ecological studies and studies of cancer aggregations within families. However, results from analytical epidemiological studies are not consistent, possibly due to methodological difficulties. To further study the association between smoking during pregnancy and testicular cancer, we did a population-based cohort study on cancer risk among offspring of women diagnosed with lung cancer. Through the use of the Swedish Cancer Register and the Swedish Second-Generation Register, we identified 8,430 women who developed lung cancer between 1958 and 1997 and delivered sons between 1941 and 1979. Cancer cases among the male offspring were then identified through the Swedish Cancer Register. Standardized incidence ratios were computed, using 95% confidence intervals. We identified 12,592 male offspring of mothers with a subsequent diagnosis of lung cancer, and there were 40 cases of testicular cancer (standardized incidence ratio, 1.90; 95% confidence interval, 1.35-2.58). The association was independent of maternal lung cancer subtype, and the risk of testicular cancer increased stepwise with decreasing time interval between birth and maternal lung cancer diagnosis. Our results support the hypothesis that exposure to cigarette smoking in utero increases the risk of testicular cancer.

How Can We Treat Cancer Disease Not Cancer Cells?

PubMed

Kim, Kyu-Won; Lee, Su-Jae; Kim, Woo-Young; Seo, Ji Hae; Lee, Ho-Young

2017-01-01

Since molecular biology studies began, researches in biological science have centered on proteins and genes at molecular level of a single cell. Cancer research has also focused on various functions of proteins and genes that distinguish cancer cells from normal cells. Accordingly, most contemporary anticancer drugs have been developed to target abnormal characteristics of cancer cells. Despite the great advances in the development of anticancer drugs, vast majority of patients with advanced cancer have shown grim prognosis and high rate of relapse. To resolve this problem, we must reevaluate our focuses in current cancer research. Cancer should be considered as a systemic disease because cancer cells undergo a complex interaction with various surrounding cells in cancer tissue and spread to whole body through metastasis under the control of the systemic modulation. Human body relies on the cooperative interaction between various tissues and organs, and each organ performs its specialized function through tissue-specific cell networks. Therefore, investigation of the tumor-specific cell networks can provide novel strategy to overcome the limitation of current cancer research. This review presents the limitations of the current cancer research, emphasizing the necessity of studying tissue-specific cell network which could be a new perspective on treating cancer disease, not cancer cells.

Vaginal Cancer Overview

MedlinePlus

... are here Home > Types of Cancer > Vaginal Cancer Vaginal Cancer This is Cancer.Net’s Guide to Vaginal Cancer. Use the menu below to choose the ... social workers, and patient advocates. Cancer.Net Guide Vaginal Cancer Introduction Statistics Medical Illustrations Risk Factors and ...

Northeast Regional Cancer Institute's Cancer Surveillance and Risk Factor Program

DOE Office of Scientific and Technical Information (OSTI.GOV)

Lesko, Samuel M.

2007-07-31

OBJECTIVES The Northeast Regional Cancer Institute is conducting a program of ongoing epidemiologic research to address cancer disparities in northeast Pennsylvania. Of particular concern are disparities in the incidence of, stage at diagnosis, and mortality from colorectal cancer. In northeast Pennsylvania, age-adjusted incidence and mortality rates for colorectal cancer are higher, and a significantly smaller proportion of new colorectal cancer cases are diagnosed with local stage disease than is observed in comparable national data. Further, estimates of the prevalence of colorectal cancer screening in northeast Pennsylvania are lower than the US average. The Northeast Regional Cancer Institute’s research program supportsmore » surveillance of common cancers, investigations of cancer risk factors and screening behaviors, and the development of resources to further cancer research in this community. This project has the following specific objectives: I. To conduct cancer surveillance in northeast Pennsylvania. a. To monitor incidence and mortality for all common cancers, and colorectal cancer, in particular, and b. To document changes in the stage at diagnosis of colorectal cancer in this high-risk, underserved community. II. To conduct a population-based study of cancer risk factors and screening behavior in a six county region of northeast Pennsylvania. a. To monitor and document changes in colorectal cancer screening rates, and b. To document the prevalence of cancer risk factors (especially factors that increase the risk of colorectal cancer) and to identify those risk factors that are unusually common in this community. APPROACH Cancer surveillance was conducted using data from the Northeast Regional Cancer Institute’s population-based Regional Cancer Registry, the Pennsylvania Cancer Registry, and NCI’s SEER program. For common cancers, incidence and mortality were examined by county within the region and compared to data for similar populations in

The Epigenetics of Kidney Cancer and Bladder Cancer

PubMed Central

Hoffman, Amanda M.; Cairns, Paul

2012-01-01

Summary This review focuses on the epigenetic alterations of aberrant promoter hypermethylation of genes, histone modifications or RNA interference in cancer cells. The current knowledge of hypermethylation of allele(s) in classical tumor suppressor genes in inherited and sporadic cancer, candidate tumor suppressor and other cancer genes is summarized gene by gene. Global and array-based studies of tumor cell hypermethylation are discussed. The importance of standardization of scoring of the methylation status of a gene is highlighted. The histone marks associated with hypermethylated genes, and the microRNAs with dysregulated expression, in kidney or bladder tumor cells are also discussed. Kidney cancer has the highest mortality rate of the genitourinary cancers. There are management issues with the high recurrence rate of superficial bladder cancer while muscle invasive bladder cancer has a poor prognosis. These clinical problems are the basis for translational application of gene hypermethylation to the diagnosis and prognosis of kidney and bladder cancer. PMID:22126150

Breast Cancer Overview

MedlinePlus

... are here Home > Types of Cancer > Breast Cancer Breast Cancer This is Cancer.Net’s Guide to Breast Cancer. Use the menu below to choose the Overview/ ... social workers, and patient advocates. Cancer.Net Guide Breast Cancer Introduction Statistics Medical Illustrations Risk Factors and Prevention ...

Risk-Benefit Analysis of Pediatric-Inspired Versus Hyperfractionated Cyclophosphamide, Vincristine, Doxorubicin, and Dexamethasone Protocols for Acute Lymphoblastic Leukemia in Adolescents and Young Adults.

PubMed

Guzauskas, Gregory F; Villa, Kathleen F; Vanhove, Geertrui F; Fisher, Vicki L; Veenstra, David L

2017-03-01

To estimate the risk-benefit trade-off of a pediatric-inspired regimen versus hyperfractionated cyclophosphamide, vincristine, doxorubicin, and dexamethasone (hyper-CVAD) for first-line treatment of adolescents/young adult (AYA; ages 16-39 years) patients with Philadelphia-negative acute lymphoblastic leukemia. Patient outcomes were simulated using a 6-state Markov model, including complete response (CR), no CR, first relapse, second CR, second relapse, and death. A Weibull distribution was fit to the progression-free survival curve of hyper-CVAD-treated AYA patients from a single-center study, and comparable patient data from a retrospective study of pediatric regimen-treated AYA patients were utilized to estimate a relative progression difference (hazard ratio = 0.51) and model survival differences. Health-state utilities were estimated based on treatment stage, with an assumption that the pediatric protocol had 0.10 disutility compared with hyper-CVAD before the maintenance phase of treatment. Total life-years and quality-adjusted life-years (QALYs) were compared between treatment protocols at 1, 5, and 10 years, with additional probabilistic sensitivity analyses. Treatment with the pediatric-inspired protocol was associated with a 0.04 increase in life-years, but a 0.01 decrease in QALYs at 1 year. By years 5 and 10, the pediatric-inspired protocol resulted in 0.18 and 0.24 increase in life-years and 0.25 and 0.32 increase in QALYs, respectively, relative to hyper-CVAD. The lower quality of life associated with the induction and intensification phases of pediatric treatment was offset by more favorable progression-free survival and overall survival relative to hyper-CVAD. Our exploratory analysis suggests that, compared with hyper-CVAD, pediatric-inspired protocols may increase life-years throughout treatment stages and QALYs in the long term.

Psychometric Analysis of the Three-Factor Eating Questionnaire-R18V2 in Adolescent and Young Adult-Aged Central Nervous System Tumor Survivors.

PubMed

Swartz, Maria C; Basen-Engquist, Karen M; Markham, Christine; Lyons, Elizabeth J; Cox, Matthew; Chandra, Joya; Ater, Joann L; Askins, Martha A; Scheurer, Michael E; Lupo, Philip J; Hill, Rachel; Murray, Jeffrey; Chan, Wenyaw; Swank, Paul R

2016-09-01

Adolescent and young adult (AYA)-aged central nervous system (CNS) tumor survivors are an understudied population that is at risk of developing adverse health outcomes, such as obesity. Long-term follow-up guidelines recommend monitoring those at risk of obesity, thus motivating the need for an eating behavior questionnaire. An abbreviated online version of the Three-Factor Eating Questionnaire (TFEQ-R18v2) has been developed, but its applicability to this population is not yet known. This study investigated the instrument's factor structure and reliability in this population. AYA-aged CNS tumor survivors (n = 114) aged 15-39 years completed the TFEQ-R18V2 questionnaire online. Confirmatory factor analysis was used to examine the fit of the three-factor structure (uncontrollable eating, cognitive restraint, and emotional eating [EE]) and reliability (internal consistency of the TFEQ-R18v2). Associations between the three factors and body mass index (BMI) were assessed by linear regression. The theorized three-factor structure was supported in our population (RMSEA = 0.056 and CFI = 0.98) and demonstrated good reliability (α of 0.81-0.93). EE (β = 0.07, 95% CI 0.02-0.13) was positively associated with BMI, whereas the other two subscale scores were not. The TFEQ-R18v2 instrument holds promise for research and clinical use among AYA-aged CNS tumor survivors. The instrument may be a useful tool for researchers to develop tailored weight management strategies. It also may be a valuable tool for clinicians to monitor survivors who are at risk of obesity and to facilitate referral. Our results also suggest that EE in this population should be further investigated as a potential target for intervention.

Ecological Factors Predict Transition Readiness/Self-Management in Youth With Chronic Conditions.

PubMed

Javalkar, Karina; Johnson, Meredith; Kshirsagar, Abhijit V; Ocegueda, Sofia; Detwiler, Randal K; Ferris, Maria

2016-01-01

Health care transition readiness or self-management among adolescents and young adults (AYA) with chronic conditions may be influenced by factors related to their surrounding environment. Study participants were AYA diagnosed with a chronic condition and evaluated at pediatric- and adult-focused subspecialty clinics at the University of North Carolina Hospital Systems. All participants were administered a provider-administered self-management/transition-readiness tool, the UNC TRxANSITION Scale. Geographic area and associated characteristics (ecological factors) were identified for each participant's ZIP code using the published U.S. Census data. The Level 1 model of the hierarchical linear regression used individual-level predictors of transition readiness/self-management. The Level 2 model incorporated the ecological factors. We enrolled 511 AYA with different chronic conditions aged 12-31 years with the following characteristics: mean age of 20± 4 years, 45% white, 42% black, and 54% female. Participants represented 214 ZIP codes in or around North Carolina, USA. The Level 1 model showed that age, gender, and race were significant predictors of transition readiness/self-management. On adding the ecological factors in the Level 2 model, race was no longer significant. Participants from a geographic area with a greater percentage of females (β = .114, p = .005) and a higher median income (β = .126, p = .002) had greater overall transition readiness. Ecological factors also predicted subdomains of transition readiness/self-management. In this cohort of adolescents and young adults with different chronic conditions, ecological disparities such as sex composition, median income, and language predict self-management/transition readiness. It is important to take ecological risk factors into consideration when preparing patients for health self-management or transition. Copyright © 2016 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All

Provider perceptions of stigma and discrimination experienced by adolescents and young adults with pHiV while accessing sexual and reproductive health care.

PubMed

Fair, Cynthia D; Berk, Meredith

2018-02-01

Historically, children with perinatally-acquired HIV (PHIV) were viewed as the "innocent victims" as their HIV infection was not acquired through sexual/drug related means. Today, adolescents with PHIV are surviving into young adulthood and are engaging in developmentally expected behaviors such as establishing intimate, sexual relationships. Like other youth, those living with PHIV often need to access sexual and reproductive health (SRH) services. Previous research has documented stigma and discrimination experienced by adult women living with HIV as they try to access SRH care. However, little is known about the experiences of stigma and discrimination encountered by the maturing adolescents and young adults (AYA) with PHIV when accessing services. HIV health care providers (HHCPs) who frequently care for this population are in a unique position to learn about and understand the stigma and discrimination experienced by their patients in formal service settings. HHCPs (n = 57, 28 medical and 29 social service providers) were recruited using snowball sampling, and completed an online survey based on patient-shared experiences of stigma and discrimination when accessing SRH-related health care and social services. Thirty-eight percent (22/57) of providers reported that their patients with PHIV had shared encounters of stigma or discrimination when accessing SRH services. Coded open-ended provider comments indicated that AYA patients experienced challenges with providers who were unfamiliar with PHIV and expressed surprise that someone with PHIV was still alive. Analyses also revealed prejudicial attitudes towards women with HIV. Patients reported being counseled to terminate their pregnancy and lectured about their "poor choices." As AYA with PHIV transition out of pediatric and adolescent care, it is important for providers to simultaneously help them navigate care in other health settings, as well as educate adult health care providers about possible

Lack of Preparedness for Pediatric to Adult-Oriented Health Care Transition in Hospitalized Adolescents and Young Adults.

PubMed

Dwyer-Matzky, Keely; Blatt, Amy; Asselin, Barbara L; Wood, David L

We examined the self-reported preparedness of hospitalized adolescents and young adults (AYA) for transition from pediatric to adult-oriented health care with regard to: 1) previous health care transition (HCT) preparation, 2) Self-Determination Theory (SDT) constructs of health self-management autonomy and competence, and 3) their perception of medical knowledge, attitudes, and concerns. From 2013 to 2015, 139 hospitalized patients aged 15 to 21 years completed a 40-item survey on HCT preparation, attitudes, concerns, and perception of knowledge adapted in part from validated questionnaires of the Department of Health and Human Services, Maternal and Child Health Bureau, and SDT Treatment Self-Regulation Study. Fewer than 40% of all respondents endorsed previous HCT preparation such as providers discussing taking responsibility for their health, transitioning to adult providers, and only 20% had discussed future health insurance needs. Of our AYA population, 84% had 1 or more special health care needs. Older patients, female patients, and those with increased HCT preparation scores had increased autonomous motivation, positive attitudes toward transition, yet also increased transition concerns. Higher autonomous motivation and perceived competence correlated with increased perception of knowledge (P = .002, < .001 respectively) and more positive attitudes toward transition planning (P < .001, .054 respectively). Multivariate regression analysis revealed those with increased HCT preparation and those with increased perceived competence had increased perception of knowledge (β = .25, P = .005 and β = .35, P < .001). Our findings suggest that hospitalized AYA received limited education and preparation regarding key elements of HCT to adult-oriented health care. Moreover, those previously exposed to transition preparation efforts were more likely to have motivation and a sense of competence in HCT skills. Copyright © 2017 Academic Pediatric Association

Breast Cancer -- Male

MedlinePlus

... Home > Types of Cancer > Breast Cancer in Men Breast Cancer in Men This is Cancer.Net’s Guide to Breast Cancer in Men. Use the menu below to choose ... social workers, and patient advocates. Cancer.Net Guide Breast Cancer in Men Introduction Statistics Risk Factors and Prevention ...

Endometrial cancer and a family history of cancer.

PubMed

Cook, Linda S; Nelson, Harold E; Stidley, Christine A; Dong, Yan; Round, Pamela J; Amankwah, Ernest K; Magliocco, Anthony M; Friedenreich, Christine M

2013-08-01

Lynch Syndrome (LS), an inherited genetic syndrome, predisposes to cancers such as colorectal and endometrial. However, the risk for endometrial cancer (EC) in women not affected by LS, but with a family history of cancer, is currently unknown. We examined the association between a family history of cancer and the risk for EC in non-LS patients. This population-based case-control study included 519 EC cases and 1015 age-matched controls and took place in Alberta, Canada between 2002 and 2006. Information about risk factors, including family history of cancer in first and second degree relatives, was ascertained via in-person interviews. Microsatellite instability (MSI) status of tumor tissue was assessed to determine involvement of DNA mismatch repair (MMR) genes. A first or second degree family history of uterine cancer was modestly associated with the risk for overall EC [odds ratio (OR), 1.3; 95% confidence interval (CI), 0.9, 1.9], and the risks were similar for MSI+cancer (OR=1.5, 95%CI=0.7, 3.3) and MSI- cancer (OR=1.3, 95%CI=0.8, 2.4). Although consistent, these associations were modest and not significant. In contrast, the risk for MSI+cancer was elevated with a reported family history of colorectal cancer (OR=1.4, 95%CI=1.0, 2.2), but not for MSI- cancer. A family history of uterine cancer may be modestly associated with EC risk in non-LS patients regardless of MSI status, suggesting that risk was not related to inherited defects in the MMR gene pathway. These results provide preliminary support for an EC-specific genetic syndrome. Copyright © 2013 Elsevier Inc. All rights reserved.

JPRS Report, Science & Technology USSR: Chemistry

DTIC Science & Technology

1991-03-27

Moshkin, and M.A. Kuzmina , Physics Research Insti- tute, Leningrad State University] UDC 537.534 [Abstract] In the past few years time-of-flight...manuscript received 27 Oct 89) pp 95-98 [Article by G.D. Apalkova, V.P. Balykin, A.Ya. Vesnin, and S.I. Kuzmina , GosNIIEP] UDC 621.3.035 [Abstract] One

Cancer nanomedicine: gold nanoparticle mediated combined cancer therapy

NASA Astrophysics Data System (ADS)

Yang, C.; Bromma, Kyle; Chithrani, B. D.

2018-02-01

Recent developments in nanotechnology has provided new tools for cancer therapy and diagnosis. Among other nanomaterial systems, gold nanoparticles are being used as radiation dose enhancers and anticancer drug carriers in cancer therapy. Fate of gold nanoparticles within biological tissues can be probed using techniques such as TEM (transmission electron microscopy) and SEM (Scanning Electron Microscopy) due to their high electron density. We have shown for the first time that cancer drug loaded gold nanoparticles can reach the nucleus (or the brain) of cancer cells enhancing the therapeutic effect dramatically. Nucleus of the cancer cells are the most desirable target in cancer therapy. In chemotherapy, smart delivery of highly toxic anticancer drugs through packaging using nanoparticles will reduce the side effects and improve the quality and care of cancer patients. In radiation therapy, use of gold nanoparticles as radiation dose enhancer is very promising due to enhanced localized dose within the cancer tissue. Recent advancement in nanomaterial characterization techniques will facilitate mapping of nanomaterial distribution within biological specimens to correlate the radiobiological effects due to treatment. Hence, gold nanoparticle mediated combined chemoradiation would provide promising tools to achieve personalized and tailored cancer treatments in the near future.

Prostate Cancer

MedlinePlus

... breast cancer (BRCA1 or BRCA2) or a very strong family history of breast cancer, your risk of prostate cancer may be higher. Obesity. Obese men diagnosed with prostate cancer may be more likely ...

Metastatic Cancer

Cancer.gov

Metastatic cancer is cancer that spreads from its site of origin to another part of the body. Learn how cancer spreads, possible symptoms, common sites where cancer spreads, and how to find out about treatment options.

Mediators of the Development and Prevention of Violent Behavior

PubMed Central

Morgan-Lopez, Antonio A.; Howard, Terry-Lee; Browne, Dorothy C.; Flay, Brian R.

2008-01-01

The purpose of this investigation was to determine if the Aban Aya Youth Project, a culturally grounded intervention, produced differences in changes over time in core intervening variables (i.e., communal value orientation, empathy, violence avoidance efficacy beliefs) and whether these variables mediated intervention effects on the development of youth violent behavior. Fifth grade cohorts at 12 schools were randomly assigned to one of two intervention conditions or an attention placebo control condition and followed longitudinally through eighth grade. A total of 668 students (49% male) participated in the study. Mediation analyses suggested that both program conditions (as compared to the control condition) led to steeper increases over time in empathy which, in turn were related to reductions in the likelihood of violent behavior over time. No other significant program effects were detected, although changes over time in violence avoidance efficacy were associated with reduced likelihood of violent behavior. Findings are discussed in terms of theory development, program development and points of refinement of the Aban Aya Youth Project and implications for future research. PMID:17558552

Second cancers in patients with male breast cancer: a literature review.

PubMed

Grenader, Tal; Goldberg, Anthony; Shavit, Linda

2008-06-01

The risk of second malignancies among female breast cancer patients has been studied for decades. In contrast, very little is known about second primary tumors in men. Risk factors for breast cancer in men, including genetic, hormonal and environmental factors, provide parallels to the etiology of breast cancer in women. This review considers the literature related to the risk of developing a second cancer in patients with male breast cancer. A systematic review of the literature between 1966 and 2007 was conducted and acceptable articles used for analysis. All retrieved articles were screened to identify any papers that had been missed. Studies were included if they discussed the risk of subsequent malignancy in patients with male breast cancer. Patients with history of male breast cancer have an increased risk of a second ipsilateral, or contralateral breast cancer (standardized incidence ratio 30-110). The risk of subsequent contralateral breast cancer was highest in men under 50 years of age at the time of the diagnosis of the initial cancer. The data on non-breast second primary cancers is diverse. One study has suggested an increased incidence of cancers of the small intestine, prostate, rectum and pancreas, and of non-melanoma skin cancer and myeloid leukaemia. Other investigators did not find an increase in the overall risk of subsequent cancer development in men diagnosed initially with primary breast cancer. Although sarcoma, lung and esophageal cancers are well recognized complications of radiation therapy for female breast cancer, there is no evidence for the association of these cancers following radiation therapy in male breast cancer. Although the incidence of second primary cancer in patients with primary male breast cancer requires further study, male breast cancer survivors should probably undergo periodic screening for the early detection of second breast cancers and other adverse health effects.

Cancer Biomarkers Funding Opportunities | Division of Cancer Prevention

Cancer.gov

The Division of Cancer Prevention (DCP) conducts and supports research to determine a person's risk of cancer and to find ways to reduce the risk. This knowledge is critical to making progress against cancer because risk varies over the lifespan as genetic and epigenetic changes can transform healthy tissue into invasive cancer.

Cancer Prevention Fellowship Program | Division of Cancer Prevention

Cancer.gov

The Division of Cancer Prevention (DCP) conducts and supports research to determine a person's risk of cancer and to find ways to reduce the risk. This knowledge is critical to making progress against cancer because risk varies over the lifespan as genetic and epigenetic changes can transform healthy tissue into invasive cancer.

Active Cancer Biomarkers Grants | Division of Cancer Prevention

Cancer.gov

The Division of Cancer Prevention (DCP) conducts and supports research to determine a person's risk of cancer and to find ways to reduce the risk. This knowledge is critical to making progress against cancer because risk varies over the lifespan as genetic and epigenetic changes can transform healthy tissue into invasive cancer.

Cancer treatments

MedlinePlus

... 2017. Doroshow JH. Approach to the patient with cancer. In: Goldman L, Schafer AI, eds. Goldman-Cecil Medicine . 25th ed. Philadelphia, PA: Elsevier Saunders; 2016:chap 179. National Cancer Institute website. Types of cancer treatment. www.cancer. ...

Cancer survivorship: a new challenge in comprehensive cancer control.

PubMed

Pollack, Lori A; Greer, Greta E; Rowland, Julia H; Miller, Andy; Doneski, Donna; Coughlin, Steven S; Stovall, Ellen; Ulman, Doug

2005-10-01

Cancer survivors are a growing population in the United States because of earlier cancer diagnosis, the aging of society, and more effective risk reduction and treatment. Concerns about the long-term physical, psychosocial, and economic effects of cancer treatment on cancer survivors and their families are increasingly being recognized and addressed by public, private, and non-profit organizations. The purpose of this paper is to discuss how survivorship fits within the framework of comprehensive cancer control. We summarize three national reports on cancer survivorship and highlight how various organizations and programs are striving to address the needs of cancer survivors through public health planning, including the challenges these groups face and the gaps in knowledge and available services. As cancer survivorship issues are being recognized, many organizations have objectives and programs to address concerns of those diagnosed with cancer. However, better coordination and dissemination may decrease overlap and increase the reach of efforts and there is limited evidence for the effectiveness and impact of these efforts.

Cancer stem cells, cancer cell plasticity and radiation therapy.

PubMed

Vlashi, Erina; Pajonk, Frank

2015-04-01

Since the first prospective identification of cancer stem cells in solid cancers the cancer stem cell hypothesis has reemerged as a research topic of increasing interest. It postulates that solid cancers are organized hierarchically with a small number of cancer stem cells driving tumor growth, repopulation after injury and metastasis. They give rise to differentiated progeny, which lack these features. The model predicts that for any therapy to provide cure, all cancer stem cells have to be eliminated while the survival of differentiated progeny is less critical. In this review we discuss recent reports challenging the idea of a unidirectional differentiation of cancer cells. These reports provide evidence supporting the idea that non-stem cancer cells exhibit a remarkable degree of plasticity that allows them to re-acquire cancer stem cell traits, especially in the context of radiation therapy. We summarize conditions under which differentiation is reversed and discuss the current knowledge of the underlying mechanisms. Copyright © 2014 Elsevier Ltd. All rights reserved.

How cancer shapes evolution, and how evolution shapes cancer

PubMed Central

Casás-Selves, Matias; DeGregori, James

2013-01-01

Evolutionary theories are critical for understanding cancer development at the level of species as well as at the level of cells and tissues, and for developing effective therapies. Animals have evolved potent tumor suppressive mechanisms to prevent cancer development. These mechanisms were initially necessary for the evolution of multi-cellular organisms, and became even more important as animals evolved large bodies and long lives. Indeed, the development and architecture of our tissues were evolutionarily constrained by the need to limit cancer. Cancer development within an individual is also an evolutionary process, which in many respects mirrors species evolution. Species evolve by mutation and selection acting on individuals in a population; tumors evolve by mutation and selection acting on cells in a tissue. The processes of mutation and selection are integral to the evolution of cancer at every step of multistage carcinogenesis, from tumor genesis to metastasis. Factors associated with cancer development, such as aging and carcinogens, have been shown to promote cancer evolution by impacting both mutation and selection processes. While there are therapies that can decimate a cancer cell population, unfortunately, cancers can also evolve resistance to these therapies, leading to the resurgence of treatment-refractory disease. Understanding cancer from an evolutionary perspective can allow us to appreciate better why cancers predominantly occur in the elderly, and why other conditions, from radiation exposure to smoking, are associated with increased cancers. Importantly, the application of evolutionary theory to cancer should engender new treatment strategies that could better control this dreaded disease. PMID:23705033

Stopping Liver Cancer's Rogue COP | Center for Cancer Research

Cancer.gov

Liver cancer is the fourth most common cancer type and the third leading cause of cancer death worldwide. Many liver tumors are actually metastases, tumors seeded in the liver by cancer cells from another organ, but hepatocellular carcinomas (HCCs), the most common liver tumors, are a heterogeneous family of cancers that arise in hepatocytes, the functional cells of the liver.

Metabolic cooperation between cancer and non-cancerous stromal cells is pivotal in cancer progression.

PubMed

Lopes-Coelho, Filipa; Gouveia-Fernandes, Sofia; Serpa, Jacinta

2018-02-01

The way cancer cells adapt to microenvironment is crucial for the success of carcinogenesis, and metabolic fitness is essential for a cancer cell to survive and proliferate in a certain organ/tissue. The metabolic remodeling in a tumor niche is endured not only by cancer cells but also by non-cancerous cells that share the same microenvironment. For this reason, tumor cells and stromal cells constitute a complex network of signal and organic compound transfer that supports cellular viability and proliferation. The intensive dual-address cooperation of all components of a tumor sustains disease progression and metastasis. Herein, we will detail the role of cancer-associated fibroblasts, cancer-associated adipocytes, and inflammatory cells, mainly monocytes/macrophages (tumor-associated macrophages), in the remodeling and metabolic adaptation of tumors.

Lung Cancer

MedlinePlus

Lung cancer is one of the most common cancers in the world. It is a leading cause of cancer death in men and women in the United States. Cigarette smoking causes most lung cancers. The more cigarettes you smoke per day and ...

Chemoprevention of Skin Cancer Program Project | Division of Cancer Prevention

Cancer.gov

DESCRIPTION (provided by applicant): Skin cancer is the most common malignancy in the world. One out of three new cancers is a skin cancer. More than 1 million cases of non-melanoma skin cancer (NMSC) (basal cell carcinoma [BCC] and squamous cell cancers [SCC]) occur annually. While the incidence rates for non-melanoma skin cancers continue to rise, there continues to be a

Breast Cancer After Chest Radiation Therapy for Childhood Cancer

PubMed Central

Moskowitz, Chaya S.; Chou, Joanne F.; Wolden, Suzanne L.; Bernstein, Jonine L.; Malhotra, Jyoti; Friedman, Danielle Novetsky; Mubdi, Nidha Z.; Leisenring, Wendy M.; Stovall, Marilyn; Hammond, Sue; Smith, Susan A.; Henderson, Tara O.; Boice, John D.; Hudson, Melissa M.; Diller, Lisa R.; Bhatia, Smita; Kenney, Lisa B.; Neglia, Joseph P.; Begg, Colin B.; Robison, Leslie L.; Oeffinger, Kevin C.

2014-01-01

Purpose The risk of breast cancer is high in women treated for a childhood cancer with chest irradiation. We sought to examine variations in risk resulting from irradiation field and radiation dose. Patients and Methods We evaluated cumulative breast cancer risk in 1,230 female childhood cancer survivors treated with chest irradiation who were participants in the CCSS (Childhood Cancer Survivor Study). Results Childhood cancer survivors treated with lower delivered doses of radiation (median, 14 Gy; range, 2 to 20 Gy) to a large volume (whole-lung field) had a high risk of breast cancer (standardized incidence ratio [SIR], 43.6; 95% CI, 27.2 to 70.3), as did survivors treated with high doses of delivered radiation (median, 40 Gy) to the mantle field (SIR, 24.2; 95% CI, 20.7 to 28.3). The cumulative incidence of breast cancer by age 50 years was 30% (95% CI, 25 to 34), with a 35% incidence among Hodgkin lymphoma survivors (95% CI, 29 to 40). Breast cancer–specific mortality at 5 and 10 years was 12% (95% CI, 8 to 18) and 19% (95% CI, 13 to 25), respectively. Conclusion Among women treated for childhood cancer with chest radiation therapy, those treated with whole-lung irradiation have a greater risk of breast cancer than previously recognized, demonstrating the importance of radiation volume. Importantly, mortality associated with breast cancer after childhood cancer is substantial. PMID:24752044

Cancer in Children and Adolescents | Office of Cancer Genomics

Cancer.gov

View a fact sheet that has statistics as well as information about types, causes, and treatments of cancers in children and adolescents in the United States. https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet

Cancer Survivors Day | Center for Cancer Research

Cancer.gov

CCR Celebrates Cancer Survivors #NCSD2016 At the Center for Cancer Research, we are home to an extraordinary group of practicing physicians and scientists who passionately explore the boundaries of research to unlock the mysteries of cancer, a disease that touches nearly every American.

Italian cancer figures, report 2009: Cancer trend (1998-2005).

PubMed

2009-01-01

the aim of this collaborative project of the Italian Network of Cancer Registries (Airtum; www.registri-tumori.it) was to analyse cancer incidence and mortality trends in Italy with special reference to the period 1998-2005. the study was based on the Airtum database, which collects and checks data from all the Airtum registries. The present study was based on 20 general and 2 specific populationbased cancer registries. Overall, we analysed 818,017 incident cases and 342,444 cancer deaths for the time period 1998-2005. Seventy percent of the analysed population was from the North of Italy, 17% from the Centre, and 13% from the South. A joinpoint analysis was carried out to detect the point in time where the trend changed; trends are described by means of the estimated annual percent change (APC), with appropriate 95% confidence intervals. Crude and standardized incidence and mortality rates were computed for 36 cancer sites, for both sexes, three age-classes (0-49, 50-69 and 70+ years), and three geographic areas (North, Centre, and South of Italy). Specific chapters are devoted to long-term trends (1986-2005), differences among age-groups, and international comparisons. In 1998-2005, cancer mortality for all sites showed a statistically significant decrease among men (APC - 1.7) and women (- 0.8). Mortality significantly decreased in both sexes for stomach cancer, rectum cancer, liver cancer, and Hodgkin lymphoma. Mortality also decreased among men for cancers of the upper aerodigestive tract, oesophagus, lung, prostate, urinary bladder, and leukaemia. Among women mortality decreased for cancers of the colon, bone, breast, and uterus not otherwise specified. An increase in mortality was recorded for lung cancer among women (+1.5) and melanoma among men (+2.6). Incidence for all cancers together (except non-melanoma skin cancers) increased among men (APC +0.3) and remained stable among women. Cancer sites which showed increasing incidence were thyroid and melanoma

Immunoscore in Rectal Cancer

ClinicalTrials.gov

2017-06-13

Cancer of the Rectum; Neoplasms, Rectal; Rectal Cancer; Rectal Tumors; Rectal Adenocarcinoma; Melanoma; Breast Cancer; Renal Cell Cancer; Lung Cancer; Bladder Cancer; Head and Neck Cancer; Ovarian Cancer; Thyroid Cancer

Cancer prevalence and education by cancer site: logistic regression analysis.

PubMed

Johnson, Stephanie; Corsten, Martin J; McDonald, James T; Gupta, Michael

2010-10-01

Previously, using the American National Health Interview Survey (NHIS) and a logistic regression analysis, we found that upper aerodigestive tract (UADT) cancer is correlated with low socioeconomic status (SES). The objective of this study was to determine if this correlation between low SES and cancer prevalence exists for other cancers. We again used the NHIS and employed education level as our main measure of SES. We controlled for potentially confounding factors, including smoking status and alcohol consumption. We found that only two cancer subsites shared the pattern of increased prevalence with low education level and decreased prevalence with high education level: UADT cancer and cervical cancer. UADT cancer and cervical cancer were the only two cancers identified that had a link between prevalence and lower education level. This raises the possibility that an associated risk factor for the two cancers is causing the relationship between lower education level and prevalence.

Roswell Park Cancer Institute / Howard University Prostate Cancer Scholars Program

DTIC Science & Technology

2015-10-01

1 AWARD NUMBER: W81XWH-14-1-0531 TITLE: Roswell Park Cancer Institute / Howard University Prostate Cancer Scholars Program PRINCIPAL...TITLE AND SUBTITLE Roswell Park Cancer Institute/Howard University Prostate Cancer 5a. CONTRACT NUMBER W81XWH-14-1-0531 Cancer Scholars Program 5b...ABSTRACT The Roswell Park/Howard University Prostate Cancer Scholars Program is designed to encourage students from under-represented minority groups

Dana-Farber Cancer Institute | Office of Cancer Genomics

Cancer.gov

Functional Annotation of Cancer Genomes Principal Investigator: William C. Hahn, M.D., Ph.D. The comprehensive characterization of cancer genomes has and will continue to provide an increasingly complete catalog of genetic alterations in specific cancers. However, most epithelial cancers harbor hundreds of genetic alterations as a consequence of genomic instability. Therefore, the functional consequences of the majority of mutations remain unclear.

Cancer-Related Fatigue in Cancer Survivorship.

PubMed

Ebede, Chidinma C; Jang, Yongchang; Escalante, Carmen P

2017-11-01

Cancer-related fatigue (CRF) significantly interferes with usual functioning because of the distressing sense of physical, emotional, and cognitive exhaustion. Assessment of CRF is important and should be performed during the initial cancer diagnosis, throughout cancer treatment, and after treatment using a fatigue scoring scale (mild-severe). The general approach to CRF management applies to cancer survivors at all fatigue levels and includes education, counseling, and other strategies. Nonpharmacologic interventions include psychosocial interventions, exercise, yoga, physically based therapy, dietary management, and sleep therapy. Pharmacologic interventions include psychostimulants. Antidepressants may also benefit when CRF is accompanied by depression. Copyright © 2017 Elsevier Inc. All rights reserved.

Cervical Cancer

MedlinePlus

... knowledge” about their bodies and health. What is cervical cancer? Cancer is a disease in which cells in the body grow out of control. Cancer ... for HPV— the virus that can cause precancerous cell changes and cervical cancer. Fallopian Tube Ovary Uterus Cervix Vagina Vulva www. ...

[Occupational cancer].

PubMed

Mori, Ippei

2014-02-01

Occupational cancer is one of the most important topics in occupational health, because it can be avoided by using appropriate risk management strategies at work. However, due to the lack of suitable surveillance systems in Japan, it goes under-recognized. Burden of disease studies conducted elsewhere can be extrapolated to suggest thousands of deaths are attributable to occupational cancer in Japan. By law, about 20 kinds of cancer have been listed as occupational hazards; among those is asbestos related cancer. In fact, in recent years, thousands of asbestos related cancer cases have been compensated by the government run workers' compensation scheme for occupational accidents and diseases. On the other hand, for the other types of occupational cancer, only few cases are reported. To prevent re-emergence of occupational cancer, such as the recently publicized cholangiocarcinoma epidemics, employees, employers, medical institutions and competent authorities are strongly urged to establish better surveillance systems for occupational cancer.

Children's cancer centers

MedlinePlus

Pediatric cancer center; Pediatric oncology center; Comprehensive cancer center ... Treating childhood cancer is not the same as treating adult cancer. The cancers are different. So are the treatments and the ...

Papillary Thyroid Cancer: The Good and Bad of the "Good Cancer".

PubMed

Randle, Reese W; Bushman, Norah M; Orne, Jason; Balentine, Courtney J; Wendt, Elizabeth; Saucke, Megan; Pitt, Susan C; Macdonald, Cameron L; Connor, Nadine P; Sippel, Rebecca S

2017-07-01

Papillary thyroid cancer is often described as the "good cancer" because of its treatability and relatively favorable survival rates. This study sought to characterize the thoughts of papillary thyroid cancer patients as they relate to having the "good cancer." This qualitative study included 31 papillary thyroid cancer patients enrolled in an ongoing randomized trial. Semi-structured interviews were conducted with participants at the preoperative visit and two weeks, six weeks, six months, and one year after thyroidectomy. Grounded theory was used, inductively coding the first 113 interview transcripts with NVivo 11. The concept of thyroid cancer as "good cancer" emerged unprompted from 94% (n = 29) of participants, mostly concentrated around the time of diagnosis. Patients encountered this perception from healthcare providers, Internet research, friends, and preconceived ideas about other cancers. While patients generally appreciated optimism, this perspective also generated negative feelings. It eased the diagnosis of cancer but created confusion when individual experiences varied from expectations. Despite initially feeling reassured, participants described feeling the "good cancer" characterization invalidated their fears of having cancer. Thyroid cancer patients expressed that they did not want to hear that it's "only thyroid cancer" and that it's "no big deal," because "cancer is cancer," and it is significant. Patients with papillary thyroid cancer commonly confront the perception that their malignancy is "good," but the favorable prognosis and treatability of the disease do not comprehensively represent their cancer fight. The "good cancer" perception is at the root of many mixed and confusing emotions. Clinicians emphasize optimistic outcomes, hoping to comfort, but they might inadvertently invalidate the impact thyroid cancer has on patients' lives.

Vaginal Cancer

MedlinePlus

Vaginal cancer is a rare type of cancer. It is more common in women 60 and older. You are also more likely to get it if you have had a human ... test can find abnormal cells that may be cancer. Vaginal cancer can often be cured in its ...

The Anti-Cancer Effect of Polyphenols against Breast Cancer and Cancer Stem Cells: Molecular Mechanisms

PubMed Central

Abdal Dayem, Ahmed; Choi, Hye Yeon; Yang, Gwang-Mo; Kim, Kyeongseok; Saha, Subbroto Kumar; Cho, Ssang-Goo

2016-01-01

The high incidence of breast cancer in developed and developing countries, and its correlation to cancer-related deaths, has prompted concerned scientists to discover novel alternatives to deal with this challenge. In this review, we will provide a brief overview of polyphenol structures and classifications, as well as on the carcinogenic process. The biology of breast cancer cells will also be discussed. The molecular mechanisms involved in the anti-cancer activities of numerous polyphenols, against a wide range of breast cancer cells, in vitro and in vivo, will be explained in detail. The interplay between autophagy and apoptosis in the anti-cancer activity of polyphenols will also be highlighted. In addition, the potential of polyphenols to target cancer stem cells (CSCs) via various mechanisms will be explained. Recently, the use of natural products as chemotherapeutics and chemopreventive drugs to overcome the side effects and resistance that arise from using chemical-based agents has garnered the attention of the scientific community. Polyphenol research is considered a promising field in the treatment and prevention of breast cancer. PMID:27657126

Predictors of cancer fear: the association between mass media and fear of cancer among cancer diagnosed and nondiagnosed individuals.

PubMed

Nelissen, Sara; Beullens, Kathleen; Lemal, Marijke; Van den Bulck, Jan

2015-03-01

Few studies have explored the impact of mass media on fear of cancer levels. This study investigates whether television and Internet use are associated with fear of cancer, and whether this association is different for cancer diagnosed and nondiagnosed individuals. A quantitative, standardized survey was used and administered to 2008 respondents in Flanders (Belgium), of which 621 individuals were diagnosed with cancer. For statistical analyses, hierarchical regression analyses, independent samples T-tests and post hoc mediation analyses were conducted. The results indicated that cancer diagnosed individuals differed from nondiagnosed individuals in terms of perceived cancer susceptibility, perceived cancer severity, fear of cancer, and media use. Furthermore, television exposure was directly and positively related to fear of cancer, whereas Internet use was not. The relationship between television and Internet use and fear of cancer was not different for cancer diagnosed and nondiagnosed individuals. Additional post hoc mediation analyses, however, seemed to suggest that watching more television and surfing more on the Internet could both lead to having a more negative perceived health and this was in turn associated with higher fear of cancer. To help reduce the burden of fear of cancer, cancer educators and individuals working with cancer patients need to be aware of the possible negative effects media use might have on health perception and on the levels of fear of cancer.

Working with cancer: health and employment among cancer survivors.

PubMed

Clarke, Tainya C; Christ, Sharon L; Soler-Vila, Hosanna; Lee, David J; Arheart, Kristopher L; Prado, Guillermo; Martinez, Alberto Caban; Fleming, Lora E

2015-11-01

Cancer affects a growing proportion of US workers. Factors contributing to whether they continue or return to work after cancer diagnosis include: age, physical and mental health, health insurance, education, and cancer site. The purpose of this study was to assess the complex relationships between health indicators and employment status for adult cancer survivors. We analyzed pooled data from the 1997-2012 US National Health Interview Survey (NHIS). Our sample included adults with a self-reported physician diagnosis of cancer (n = 24,810) and adults with no cancer history (n = 382,837). Using structural equation modeling (SEM), we evaluated the relationship between sociodemographic factors, cancer site, and physical and mental health indicators on the overall health and employment status among adults with a cancer history. The overall model for cancer survivors fit the data well (χ(2) (374) = 3654.7, P < .001; comparative fit index = 0.98; root mean square error of approximation = 0.04). Although black cancer survivors were less likely to report good-to-excellent health, along with Hispanic survivors, they were more likely to continue to work after diagnosis compared with their white counterparts. Health insurance status and educational level were strongly and positively associated with health status and current employment. Age and time since diagnosis were not significantly associated with health status or employment, but there were significant differences by cancer site. A proportion of cancer survivors may continue to work because of employment-based health insurance despite reporting poor health and significant physical and mental health limitations. Acute and long-term health and social support are essential for the continued productive employment and quality of life of all cancer survivors. Copyright © 2015 Elsevier Inc. All rights reserved.

Inflammatory Breast Cancer

MedlinePlus

... Partners & Collaborators Spotlight on Scientists Research Areas Cancer Biology Research Cancer Genomics Research Research on Causes of ... Collaborators Spotlight on Scientists NCI Research Areas Cancer Biology Cancer Genomics Causes of Cancer Diagnosis Prevention Screening & ...

National Cancer Institute

MedlinePlus

... Partners & Collaborators Spotlight on Scientists Research Areas Cancer Biology Research Cancer Genomics Research Research on Causes of ... Collaborators Spotlight on Scientists NCI Research Areas Cancer Biology Cancer Genomics Causes of Cancer Diagnosis Prevention Screening & ...

Cancer incidence in eastern Morocco: cancer patterns and incidence trends, 2005-2012.

PubMed

Elidrissi Errahhali, Manal; Elidrissi Errahhali, Mounia; Ouarzane, Meryem; Boulouiz, Redouane; Bellaoui, Mohammed

2017-08-29

Cancer is one of the major health problems worldwide. In this article, we present for the first time the cancer incidence trends, the distribution and the socioeconomic profile of incident cancer cases in Eastern Morocco over a period of eight years. Retrospective descriptive study of patients diagnosed with cancer at the Hassan II Regional Oncology Center (ROC) since it was created in October 2005 until December 2012. During the study period, the ROC was the only hospital specialized in cancer care in Eastern Morocco. A total of 7872 incident cases of cancer were registered in Eastern Morocco. Among these incident cases 5220 cases were women and 2652 were men, with a female to male ratio of 1.97. The mean age at diagnosis was 58 years for males and 52 for females and 94% of the patients aged over 30 years. For both sexes combined and for all cancer sites, breast cancer was the commonest followed by cervix uteri, colon-rectum, lung, nasopharynx, and stomach cancers. The most common cancer in women was breast cancer, followed respectively by cervix uteri cancer, colon-rectum cancer, ovary cancer, and stomach cancer. In men, the lung cancer ranked first, followed respectively by colon-rectum cancer, nasopharynx cancer, prostate cancer, and stomach cancer. For most cancers, crude incidence rates (CR) have increased significantly. The CR for all cancers combined has increased from 56.6 to 80.3 per 100,000 females and from 32.3 to 42.6 per 100,000 males during the study period. Patients profile analysis showed that 79% of cancer patients were from urban areas, 83% were unemployed and 85% had no health insurance. The distribution of cancers in Eastern Morocco is different from those observed in other regions of Morocco. Unlike most countries, women were much more affected with cancer than men in Eastern Morocco. More importantly, the rates of many cancers are rising. Therefore, our data justify the need to develop effective programs for cancer control and prevention in