Patient involvement in the development of childhood, adolescent and young adult cancer survivorship guidelines: recommendations from EU-CAYAS-NET ambassadors

Background: Survivors of Childhood, Adolescent, and Young Adult (CAYA) cancer can face long-term health complications due to adverse effects of cancer and its treatment, necessitating lifelong follow-up care. Clinical practice guidelines (CPGs) provide evidence-based recommendations for late effects surveillance. Despite the recognized value of patient involvement, its integration into CPG development remains inconsistent and underexplored. Objective: This study aimed to identify effective strategies for integrating patient involvement across all phases of CPG development in CAYA cancer survivorship care. Methods: This qualitative study consisted of a half-day workshop that was conducted during the European Network of Youth Cancer Survivors (EU-CAYAS-NET) ambassador training event in November 2023 in Vienna, Austria. Forty-nine project ambassadors, all CAYA cancer survivors, participated in presentations and interactive sessions, including breakout discussions and mind-mapping exercises. Data from plenary discussions and mind-maps were analyzed using qualitative content analysis to extract key recommendations and conditions for successful patient involvement in CPG development. Results: Participants formulated 12 recommendations and 11 conditions for effective patient involvement in CPG development, structured across four phases: recruitment, preparation, development, and dissemination. Key areas included clarity, support, collaboration, respect, feasibility, and communication. Discussion: These findings emphasize the need for a systematic approach to patient involvement, ensuring patient representatives are integrated as active stakeholders throughout CPG development, in a role that fits the goal of each guideline. Conclusion: This study proposes a structured framework for patient involvement in CAYA cancer survivor CPG development, advocating for continuous patient involvement to enhance guideline quality, adoption, and impact. Future efforts should align with our proposed approach to patient involvement in CPG development to establish standardized practices within existing frameworks.