Human-centered design of an exercise intervention for adolescent cancer patients: findings from a patient involvement workshop to inform intervention development

BACKGROUND: Only few exercise trials have been conducted in the immediate time after a child's first cancer diagnosis. The Exercise CC Trial was designed to study the effects of exercise during the first 8 weeks following the diagnosis. However, young patients have not been involved in designing an exercise intervention in this care-intensive period of time in which complying with regular exercise regimens may be particularly difficult. To understand factors facilitating compliance and to prevent drop-outs in this critical period, this study aims to engage adolescents with cancer in designing an exercise intervention by incorporating patient perspectives in research development. METHODS: A workshop was conducted with adolescents who had previously participated in exercise therapy during their cancer treatment. This interactive session allowed participants to share their experiences and contribute to the intervention design prior to enrolling patients in the trial. Data was collected through a group discussion, which was recorded and transcribed for qualitative content analysis using MAXQDA20 software, ensuring a comprehensive understanding of participants' views. RESULTS: The workshop, attended by four patients aged 17 to 20, highlighted various aspects of exercise therapy. Participants valued the flexibility of choosing between various exercises and noted the psychological benefits of physical activity, which provided them with a constructive outlet and relief during treatment. They also appreciated the physical improvements and the motivational impact of monitoring progress. Importantly, the study revealed the need for personalized exercise regimes that consider individual physical conditions and preferences. CONCLUSIONS: We present an innovative approach in pediatric exercise oncology inviting the perspectives of adolescents and young adults to participate in research and shape the design of intervention details during the care-intensive phase immediately following a cancer diagnosis. We describe our "lessons learned" in giving adolescents a voice and share their knowledge and insights into their specific needs and preferences of exercise regimens in trials. This approach ensures that intervention details align with young patients' expectations, which can be opposite to experts' assumptions. TRIAL REGISTRATION: DRKS-ID: DRKS00032259. Registered on 10.07.2024.