UCSF

BACKGROUND: Adolescents and young adults (AYAs) experience treatment nonadherence rates as high as 60%, which can increase the risk of cancer relapse. Involvement of AYAs in treatment decisions might support adherence to medical treatment. OBJECTIVE: The aim of this study was to explore the involvement of AYAs, aged 15 to 20 years, in cancer treatment decision making (TDM). METHODS: Using interpretive focused ethnography, we conducted interviews with 16 AYAs (total of 31 interviews) receiving cancer treatment within 1 year of diagnosis. Participants reflected on a major recent TDM experience (eg, clinical trial, surgery) and other treatment decisions. RESULTS: Participants distinguished important major cancer treatment decisions from minor supportive care decisions. We identified 3 common dimensions related to AYAs involvement in cancer TDM: (1) becoming experienced with cancer, (2) import of the decision, and (3) decision-making roles. The preferences of AYAs for participation in TDM varied over time and by type of decision. We have proposed a 3-dimensional model to illustrate how these dimensions might interact to portray TDM during the first year of cancer treatment for AYAs. CONCLUSIONS: As AYAs accumulate experience in making decisions, their TDM preferences might evolve at different rates depending on whether the decisions are perceived to be minor or major. Parents played a particularly important supportive role in TDM for AYA participants. IMPLICATIONS FOR PRACTICE: Clinicians should consider the AYAs preferences and the role they want to assume in making different decisions in order to support and encourage involvement in their TDM and care.