Unmet need and health-related quality of life among adolescents and young adults with cancer in West Virginia: A multi-site single-institution study.

253 Background: Adolescents and young adults (AYA) aged 15-39 diagnosed with cancer are an understudied demographic, with their unique care experiences and needs not thoroughly understood. The AYA-Health Outcomes and Patient Experience (HOPE) study, the largest AYA investigation in the United States, included patients across seven NCI cancer registries. However, these findings may not represent AYA patients in rural areas. This study evaluated the care experiences, needs, and outcomes of AYA patients across the West Virginia University (WVU) Health System to inform the development of an AYA-dedicated program. Methods: AYA patients diagnosed with cancer between 2012 and 2022, identified in the WVU tumor registry, were included and mailed a link to electronically access the AYA HOPE survey. The survey opened in January 2024 and will remain open for 6-months. Descriptive characteristics of the population will be analyzed along with the frequency of reported unmet needs and quality of life (QOL) as assessed by the Short-Form 12. This project uses the quality improvement DMIAC model (define, measure, analyze, improve, and control) to develop a new AYA program in our health system. Results: Preliminary analysis reflects the findings from 86 respondents between 1/12/2024- 5/12/2024. To date, we have a 10.7% response rate. Respondents range from 21-39 years, are predominantly female (65%) and all identify as white. The most common cancer types are leukemia (22.7%), lymphoma (21.3%), and thyroid (12%), with 23% currently undergoing cancer treatment. Additionally, 42% of respondents rated their quality of care as excellent. Respondents identified that the cancer diagnosis adversely affected fertility, finances, and body self-image, while positively impacted family relationships and spiritual/religious beliefs. Unmet needs were reported for information and services regarding alternative treatment information, fertility counseling, pain management, and supportive groups. The final analysis will explore associations of unmet needs with QOL and will be shared in the final presentation. Conclusions: This study represents a preliminary analysis of the first AYA survey of unmet needs and QOL in West Virginia. Survey findings define our care gaps and unmet needs and provide a baseline measure that will inform the development of our AYA program.

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Publication Details

Journal
JCO Oncology Practice
Published
2024-09-30
DOI
https://doi.org/10.1200/op.2024.20.10_suppl.253
Primary Topic
Childhood Cancer Survivors' Quality of Life
Type
article
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article

Unmet need and health-related quality of life among adolescents and young adults with cancer in West Virginia: A multi-site single-institution study.

Bei Jiang, Nicole L. Stout, Konstantinos Sdrimas, Laurie Lyckholm
JCO Oncology Practice
Childhood Cancer Survivors' Quality of Life
article

Unmet need and health-related quality of life among adolescents and young adults with cancer in West Virginia: A multi-site single-institution study.

Bei Jiang, Nicole L. Stout, Konstantinos Sdrimas, Laurie Lyckholm
article en

Abstract

253 Background: Adolescents and young adults (AYA) aged 15-39 diagnosed with cancer are an understudied demographic, with their unique care experiences and needs not thoroughly understood. The AYA-Health Outcomes and Patient Experience (HOPE) study, the largest AYA investigation in the United States, included patients across seven NCI cancer registries. However, these findings may not represent AYA patients in rural areas. This study evaluated the care experiences, needs, and outcomes of AYA patients across the West Virginia University (WVU) Health System to inform the development of an AYA-dedicated program. Methods: AYA patients diagnosed with cancer between 2012 and 2022, identified in the WVU tumor registry, were included and mailed a link to electronically access the AYA HOPE survey. The survey opened in January 2024 and will remain open for 6-months. Descriptive characteristics of the population will be analyzed along with the frequency of reported unmet needs and quality of life (QOL) as assessed by the Short-Form 12. This project uses the quality improvement DMIAC model (define, measure, analyze, improve, and control) to develop a new AYA program in our health system. Results: Preliminary analysis reflects the findings from 86 respondents between 1/12/2024- 5/12/2024. To date, we have a 10.7% response rate. Respondents range from 21-39 years, are predominantly female (65%) and all identify as white. The most common cancer types are leukemia (22.7%), lymphoma (21.3%), and thyroid (12%), with 23% currently undergoing cancer treatment. Additionally, 42% of respondents rated their quality of care as excellent. Respondents identified that the cancer diagnosis adversely affected fertility, finances, and body self-image, while positively impacted family relationships and spiritual/religious beliefs. Unmet needs were reported for information and services regarding alternative treatment information, fertility counseling, pain management, and supportive groups. The final analysis will explore associations of unmet needs with QOL and will be shared in the final presentation. Conclusions: This study represents a preliminary analysis of the first AYA survey of unmet needs and QOL in West Virginia. Survey findings define our care gaps and unmet needs and provide a baseline measure that will inform the development of our AYA program.

JCO Oncology PracticeVol. 20(10_suppl)
West Virginia University (US), West Virginia State University (US)
Openalex Percentile: Top 74%
Childhood Cancer Survivors' Quality of Life
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