Unmet Needs of Adolescent and Young Adult Cancer Survivors Treated in West Virginia: A Qualitative Analysis of Open-Ended Survey Responses

Abstract

Purpose: To characterize unmet supportive care needs among adolescent and young adult (AYA) cancer survivors in rural West Virginia. Methods: We conducted a cross-sectional survey of individuals diagnosed with cancer at ages 15–39 and treated within the West Virginia University Health System from 2012–2023. The questionnaire included the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) Survey, the Veterans RAND 12-Item Health Survey (VR-12), and optional open-ended questions. This report focuses on the open-ended responses, which three team members independently coded using conventional qualitative content analysis before reaching consensus on themes and representative quotations. Closed-ended instrument data were outside the scope of this analysis. Results: Among 1,621 deliverable invitations, 79 surveys were completed (4.9%); 22 respondents provided open-ended text (27.8% of completers; 1.4% of deliverable invitations). Five themes were identified: information and education gaps; social isolation; treatment and pain-management concerns; financial and logistical burdens; and survivorship and re-entry challenges. Conclusion: Participants described needs that largely mirror those reported across AYA populations, while transportation, service availability, and geographic dispersion may shape how support is delivered in rural West Virginia. These findings may inform the development and evaluation of age-appropriate survivorship, navigation, mental health, fertility, and peer-support services across rural care networks.