Treatment Decision‐Making Roles and Preferences Among Adolescents and Young Adults With Cancer

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Abstract
Background: Decision‐making (DM) dynamics between adolescents and young adults (AYAs) with cancer, parents, and oncologists remain underexplored in diverse populations. We examined cancer treatment DM preferences among an ethnically and socioeconomically diverse group of AYAs and their parents. Procedure: We surveyed AYAs with cancer ( n = 75) and their parents ( n = 52) participating in the Texas KidsCanSeq study. Among AYA‐parent pairs, we compared preferred and actual treatment DM roles. We explored associations among DM roles, having pediatric‐to‐adult care transition discussions, and clinical and sociodemographic characteristics. We report AYAs’ and parents’ preferences for involvement in shared decision‐making (SDM) with oncologists about cancer treatment. Results: AYAs’ DM role preferences varied: 44% preferred to equally share DM with parents, 31% preferred AYA‐led DM, and 25% preferred parent‐led DM. Parents who preferred parent‐led DM had younger AYAs than parents who preferred equally shared DM ( p  = 0.011). For actual DM, 48% of AYAs reported DM was equally shared, 24% reported DM was AYA‐led, and 28% reported DM was parent‐led. Most AYAs had their preferred role (73%). AYAs’ actual role did not significantly differ from their own or their parents’ preferences (both p  > 0.05). Approximately half of AYAs reported recent pediatric‐to‐adult care transition discussions. AYAs’ DM preferences and participation in transition discussions did not significantly differ along clinical or sociodemographic characteristics (all p  > 0.05). AYAs and parents perceived high importance across all aspects of SDM with oncologists. Conclusion: In this diverse study population, AYAs desired engagement in treatment DM and SDM. Although specific role preferences varied, opportunities existed to increase discussion around pediatric‐to‐adult care transition.
Funding Information
  • National Cancer Institute (U01HG006485)
  • National Human Genome Research Institute (U01HG006485)

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