Stakeholder evaluation of a supportive care needs assessment tool for adolescent and young adult (AYA) cancer survivors.

Authors

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Kristine L Kwekkeboom

University of Wisconsin, Madison, WI

Kristine L Kwekkeboom, Kitty Montgomery, Jane Evered, Kirsten Norslien, Amanda Marie Parkes, Kat Phelps, Susan Tierney, Cathy Lee-Miller

Organizations

University of Wisconsin, Madison, WI, University of Wisconsin, School of Nursing, Madison, WI, University of Wisconsin-Madison, Madison, WI, Gilda's Club, Middleton, WI, Department of Medicine, Section of Hematology/Oncology Carbone Comprehensive Cancer Center University of Wisconsin, Madison, WI, Wisconsin Network for Research Support, Madison, WI

Research Funding

Other
University of Wisconsin School of Medicine and Public Health Institute for Clinical and Translational Research and the University of Wisconsin Carbone Cancer Center.

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.

New items by domain.

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 Details

Meeting

2022 ASCO Quality Care Symposium

Session Type

Poster Session

Session Title

Poster Session B

Track

Palliative and Supportive Care,Technology and Innovation in Quality of Care,Quality, Safety, and Implementation Science

Sub Track

Survivorship Care Needs

Citation

J Clin Oncol 40, 2022 (suppl 28; abstr 224)

DOI

10.1200/JCO.2022.40.28_suppl.224

Abstract #

224

Poster Bd #

B21

Abstract Disclosures

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