Children’s Hospital of Philadelphia, Philadelphia, PA
Adolescents and young adults (AYA) with cancer have lower rates of participation in therapeutic clinical trials; they have limited involvement in decision-making, do not fully understand clinical trials, and are vulnerable to acute distress undermining their decision processes. We developed a decision support tool (DECIDES = AYA Deciding about Enrolling on a Clinical Intervention Trial: Decision Aid for Education and Support) to increase collaboration among AYA, primary caregivers, and providers in clinical trial decision-making. DECIDES is based on decision theory, findings from our qualitative studies of AYA decision-making, evidence-based decision tools in adult oncology, and feedback from CHOP AYA Patient Steering Committee, caregivers, and Scientific Advisory Committee. Content/format includes information on cancer clinical trials and a value clarification exercise in a web-based format with written information, games, video, and animation. We will use a hybrid design to pilot test and identify implementation strategies with newly diagnosed or relapsed AYA: DECIDES alone (n=20), DECIDES+coach (n=20), and Usual Care (n=10). Hypotheses: (1) DECIDES will be acceptable and feasible; (2) DECIDES groups will have more knowledge about cancer clinical trials, open clinical trial attitudes, positive decision processes, and collaborative decision-making than the usual care group. Interviews with participants will provide feedback on DECIDES for future, larger scale implementation.
