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- Title
A Patient-Centered Conceptual Model of AYA Cancer Survivorship Care Informed by a Qualitative Interview Study.
- Authors
Figueroa Gray, Marlaine S.; Shapiro, Lily; Dorsey, Caitlin N.; Randall, Sarah; Casperson, Mallory; Chawla, Neetu; Zebrack, Brad; Fujii, Monica M.; Hahn, Erin E.; Keegan, Theresa H. M.; Kirchhoff, Anne C.; Kushi, Lawrence H.; Nichols, Hazel B.; Wernli, Karen J.; Sauder, Candice A. M.; Chubak, Jessica
- Abstract
Simple Summary: Adolescents and young adults (AYAs) experiencing cancer have support needs that differ from older adult cancer patients. The aim of our qualitative study was to determine the holistic needs of AYA cancer survivors and to develop a patient-centered conceptual model of AYA survivorship care. Analysis of our interview results reveals eight key domains critical to holistic patient-centered AYA survivorship care. We offer a conceptual model that differs from current conceptual models of AYA survivorship care by centering the patient and their support systems, emphasizing the need for continuing supportive navigation, and the importance of repeated support along the identified domains over time. Purpose: Conceptual models provide frameworks to illustrate relationships among patient-, provider-, system-, and community-level factors that inform care delivery and research. Existing models of cancer survivorship care focus largely on pediatric or adult populations whose needs differ from adolescents and young adults (AYAs). We developed a patient-centered conceptual model of AYA survivorship care. Methods: We conducted a narrative literature review of current conceptual and theoretical models of care. We engaged AYA cancer survivors (n = 25) in semi-structured one-hour telephone interviews. Most participants were in their 20s and 30s, and the majority (84%) were women. Recruitment was stratified by age and time since cancer diagnosis. We conducted a thematic analysis of interview transcripts to identify themes that exemplified patient-centered care. Results: Most participants identified as white and female. Leukemia and breast cancer were the most common cancer types. Main themes included the need for (1) care coordination, (2) ongoing mental health support, (3) connection to AYA peer support, (4) support during fertility preservation efforts, (5) support with financial burden, (6) support for quality of life, (7) information about and support with side effects and late effects, and (8) attention to the unique needs of young adults. Conclusions: We present a patient-centered conceptual model of AYA survivorship care needs that can inform future cancer care delivery and research.
- Subjects
QUALITATIVE research; RESEARCH funding; PRESUMPTIONS (Law); INTERVIEWING; BREAST tumors; AFFINITY groups; CANCER patients; PATIENT-centered care; THEMATIC analysis; LEUKEMIA; FINANCIAL stress; CONCEPTUAL structures; RESEARCH methodology; QUALITY of life; THEORY; NEEDS assessment; SOCIAL support; ADOLESCENCE; ADULTS
- Publication
Cancers, 2024, Vol 16, Issue 17, p3073
- ISSN
2072-6694
- Publication type
Article
- DOI
10.3390/cancers16173073