Dataset Information

A New Lease on Life: Preliminary Needs Assessment for the Development of a Survivorship Program for Young Adult Survivors of Cancer in South Texas.

ABSTRACT: Priorities for young adult survivorship care from the survivors' perspective are not well documented. To address this within our patient population, we conducted a multimethod needs assessment of young adult survivors of pediatric, adolescent, and young adult cancer in South Texas to get a better understanding of the ongoing challenges and priorities for their survivorship needs and related services. Participants were 18 to 39 years at the time of the needs assessment and predominately Hispanic. In an online survey, survivors most commonly cited being concerned about their physical and mental health, long-term treatment effects, recurrence, and health insurance issues. Participants stated that they received critical support from family, friends, and medical staff, but they would like to receive additional support from other cancer survivors through peer mentorship opportunities and survivor retreats/social events.

SUBMITTER: Schmidt S

PROVIDER: S-EPMC5866154 | biostudies-literature | 2018 Apr

REPOSITORIES: biostudies-literature

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Publications

A New Lease on Life: Preliminary Needs Assessment for the Development of a Survivorship Program for Young Adult Survivors of Cancer in South Texas.

Schmidt Susanne S Shay L Aubree LA King Harriet V HV Buckley Jordan J Embry Leanne L Parsons Helen M HM

Journal of pediatric hematology/oncology 20180401 3

Priorities for young adult survivorship care from the survivors' perspective are not well documented. To address this within our patient population, we conducted a multimethod needs assessment of young adult survivors of pediatric, adolescent, and young adult cancer in South Texas to get a better understanding of the ongoing challenges and priorities for their survivorship needs and related services. Participants were 18 to 39 years at the time of the needs assessment and predominately Hispanic. ...[more]

PMID: 28991132

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Project description:(1) Background: Adolescents and young adults (AYAs) who have been diagnosed with and treated for cancer have unique healthcare needs, but more research is needed to inform developmentally targeted cancer care for this population. The purpose of the current analyses was to describe the physical and psychosocial concerns and experiences of AYA cancer survivors during the post-treatment phase. (2) Methods: A national survey was conducted by the Canadian Partnership Against Cancer to evaluate the experiences and unmet needs of cancer survivors (?18 years) within the first 5 years following cancer treatment. The current analyses were conducted on the AYA survivor population (18-34 years). (3) Results: A total of 575 surveys were completed by AYAs. Of these, 61% were female, 51% were married/partnered, and 52% were 1-3 years post treatment. Approximately three-quarters report their physical or emotional health as good/very good. Overall, 88% reported at least one physical concern [mean of 3.98+2.11 physical concerns (range 0-9)], 90% reported at least one emotional concern [mean of 3.77+1.75 emotional concern (range 0-6)], and 79% reported at least one practical challenge [mean of 2.39+1.28 practical concerns (range 0-5)]. The most common concerns were anxiety/worry about cancer returning (83%), fatigue/tiredness (78%), and depression/loss of interest in daily activities (66%). On average, 43% of those reporting a concern sought help. Common reasons for not seeking help included not wanting to ask, being told that it was normal to feel the way they did, or embarrassment. Of those who did seek help, 37% encountered difficulty obtaining assistance. (4) Conclusions: These results suggest that post-treatment AYA cancer survivors have a high rate and number of physical, psychosocial, and practical concerns and are often not seeking or receiving help to address these. Proactive approaches to characterizing and eliminating barriers to obtaining appropriate care are needed.

Project description:BackgroundThis 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.ObjectiveThe 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?"MethodsThe 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.ResultsThe 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 for the second cycle. In the brief quantitative survey based on a scale of 1 to 5 with 5 as high, the 22 respondents rated their level of awareness of the project with a mean 3.2 (CI 3.02-3.45) and project effectiveness with a mean of 4 (CI 3.72-4.27).ConclusionsThis study contributes to understanding of the ACCESS AYA survivor community in central Texas and the health care professionals and advocates who aid them in their efforts to a new normal life and wellbeing in their survivorship. The results of the evaluation highlight the need to continue to build both survivor and professional resources to address the unique impact of cancer on AYA cancer survivors.

Dataset Information

A New Lease on Life: Preliminary Needs Assessment for the Development of a Survivorship Program for Young Adult Survivors of Cancer in South Texas.

Publications

A New Lease on Life: Preliminary Needs Assessment for the Development of a Survivorship Program for Young Adult Survivors of Cancer in South Texas.

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