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Empowering Adolescent Surgical Oncology Patients: Evaluation of a Novel Question Prompt List
Laura A Shinkunas1, Maxwell T Lieberman2, Erica M Carlisle3
1University of Iowa Carver College of Medicine, Program in Bioethics and Humanities, Iowa City, Iowa.
Introduction:
Many adolescent cancer patients experience emotional and psychological distress following a cancer diagnosis. Here, we describe development of a question prompt list (QPL) designed to empower adolescent surgical oncology patients to ask questions that are important to them during surgical discussions.
Methods:
Adult cancer survivors diagnosed and treated for cancer between the ages of nine and eighteen and Family Advisory Council parent members at an academic children's hospital participated in focus groups to evaluate our novel QPL. Focus groups were recorded and transcribed verbatim. At the end of the focus groups, participants were surveyed about QPL acceptability, appropriateness, and feasibility. Thematic content analysis of transcripts was performed, and data were used to guide QPL optimization.
Results:
Eleven adult cancer survivors and two parents participated. Ten key themes were identified: (1) emotional toll of a cancer diagnosis impacts the ability to ask questions; (2) QPL as a tool of empowerment; (3) provide QPL prior to surgical consultation; (4) provide QPL multiple times; (5) provide QPL in both print and digital formats; (6) QPLs can impact discussion quality; (7) QPLs can impact perception of surgeons; (8) QPL barriers; (9) using QPL with parents or caregivers; and (10) expansion of QPL to other disciplines. Nearly 100% of participants agreed that the QPL was acceptable, appropriate, and feasible.
Conclusions:
Our novel QPL was acceptable, appropriate, and feasible to all participants. Participants felt that the QPL would reduce the emotional and psychological difficulty of discussing a cancer diagnosis and surgery for cancer.
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