University of Wisconsin, Madison, WI
Kristine L Kwekkeboom, Kitty Montgomery, Jane Evered, Kirsten Norslien, Amanda Marie Parkes, Kat Phelps, Susan Tierney, Cathy Lee-Miller
Background: The survivorship needs of Adolescents and Young Adults (AYA) with cancer are complex and differ from other age groups. Evidence suggests that AYA cancer survivors are unaware of and underutilize supportive care services both during and after treatment. Recently, the Needs Assessment & Service Bridge (NA-SB) tool was developed to screen AYAs’ survivorship needs and facilitate delivery of appropriate services. We engaged a stakeholder group of YA cancer survivors from the Midwest United States to provide feedback regarding NA-SB content and administration. Methods: We used a descriptive focus group design. We recruited 10 YA cancer survivors, aged 20-38, of diverse sex, race, rural/urban residence, and on/off active therapy. We held five 90-minute virtual stakeholder group meetings. Before the first meeting, stakeholders reviewed the 57 NA-SB items. The PI and a trained facilitator co-led the meetings, asking participants about the utility of the NA-SB, item content, response options, and administration. Meetings were recorded and transcripts were analyzed deductively, organizing comments by the 9 NA-SB domains. Results: Stakeholders endorsed all original NA-SB items, modified 4 items, and identified 18 new items (Table). Stakeholders recommended that YA patients initially complete the NA-SB in-person shortly after treatment begins, and again electronically at clinical milestones. They suggested using a screening question for each domain, allowing patients to skip items not relevant for them. Conclusions: The stakeholder-engaged process resulted in a modified NA-SB and recommendations for administration that reflect the needs of our Midwestern YA cancer survivor population. Prior to implementation, we will integrate recommendations from clinician experts and align available resources with NA-SB domains.
Information Travel post-surgery or during chemo with suppressed immune system Having resources for family members struggling with your illness |
Cancer Care Team / Communication Transition from pediatrics to adults Transition from active to maintenance treatment |
Physical Health Extreme fatigue Surgical healing issues |
Emotional Health Feelings of isolation Survivor’s guilt Being the youngest (my age makes me different from other patients) Self-esteem Body image |
Sexual & Reproductive Health |
Health Behaviors & Wellness |
Work & Education Navigating resources associated with school (e.g., talking with advisors, using a disability office) Navigating resources associated with work (e.g., discrimination due to diagnosis, accessing assistance if I don’t look sick) |
Peer Support & Programming Living in a rural area Being available to help others (platform to provide assistance) |
Finances & Everyday Needs Legal advice (e.g., disability, discrimination) Difficulty cooking or cleaning for myself Needing new clothes post-surgery |
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Abstract Disclosures
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First Author: Lauren Victoria Ghazal
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2023 ASCO Annual Meeting
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2022 ASCO Quality Care Symposium
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