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

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 (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 selfreported 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.

Section: Discussionmentioning

confidence: 93%

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

McClellan

et al. 2015

“…There are strong reasons to believe that this age group may be at particular risk for poor dental care as the recent AYA Hope Study detailed several healthcare gaps for survivors, of AYA cancer including report of unmet medical needs for more than 50% of the sample. 17 In general, these survivors report foregoing medical care due to cost barriers more often than individuals without a history of cancer. 4 Insurance coverage is a particularly important determinant of dental care access.…”

Section: Introductionmentioning

confidence: 99%

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

Kaul

Fair

Wright

et al. 2016

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.

“…4 In psychosocial research, the majority of patient-reported outcome instruments have been validated either for children < 18 years of age or for adults 18 years of age or older; very few span both age groups, although research to address this deficit is ongoing. 19,20 As initial steps toward the goal of collecting prospective psychosocial data on AYAs, LIVESTRONG supported two initiatives: (1) NCI's Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based analysis that determined best practices for medical record collection, validated the feasibility of assessing psychosocial outcomes in recent survivors of AYA cancer, [21][22][23] and reported on the social information and service needs, health-related quality of life, work disparities, and educational disparities of AYAs with cancer [24][25][26] and (2) the Alliance's AYA cohort study, a prospective, multi-institutional study testing the feasibility of collecting AYAs' clinical, psychosocial, and health-related qualify of life data at several time points during the first year of cancer therapy. 4 The Alliance made strides toward coordinating the research and clinical efforts of the pediatric and adult branches of NCI-designated cancer centers through the formation and coordination of the Cancer Centers Working Group (CCWG).…”

Section: Research and Tool Developmentmentioning

confidence: 99%

AYA in the USA. International Perspectives on AYAO, Part 5

Johnson

2013

Within the past decade, the discipline of adolescent and young adult (AYA) oncology has taken root in the United States. It arose from the observation that survival improvements for 15-39-year-olds have lagged behind those of both children and older adults. Rapid progress in this new area has resulted from energetic work by researchers, clinicians, and non-profit organizations focusing on AYA-aged cancer patients and survivors. The term ''AYA'' is now well recognized within both pediatric and medical oncology, and AYA-specific aims are increasingly included in clinical trials and also basic and translational oncology research. The AYA oncology movement in the United States was spearheaded by the LIVESTRONG Young Adult Alliance (the Alliance), a coalition of AYA-focused non-profit organizations and academic institutions that has recently transitioned into a successor organization-Critical Mass: The Young Adult Cancer Alliance, composed of individual AYAO professionals. The work of groups such as the Alliance/Critical Mass and key collaborators-including the National Cancer Institute, National Comprehensive Cancer Network, Children's Oncology Group, and advocacy organizations-provides a useful platform for the discussion of progress in AYA oncology in the United States, including advances in (1) research and tool development; (2) public and professional education; (3) advocacy and patient support; (4) awareness; and (5) service delivery. AYA oncology programs are now burgeoning dramatically throughout the United States, and many well-established U.S. programs share distinctive features in clinical programming. The United States is now entering an era of larger-scale coordinated efforts in research, advocacy, and clinical care for AYAs with cancer.