Co-production of a rehabilitation programme for young adult cancer survivors

Abstract

Introduction: Globally, the focus on user involvement in health research has increased substantially. In Denmark, it is still at an early stage, with individual researchers being met with increasing demands without having much experience, guidance, or good practices to act upon. We are a group of researchers affiliated with User Perspectives and Community-based Interventions at the University of Southern Denmark and the Center for Research with Patients and Relatives (ForSa-P) at the Odense University Hospital. We work with patients and relatives in several aspects of our work – research and teaching; we share our experiences and learning in a joint session.
 This presentation describes a co-creation process of developing a rehabilitation programme for young adult cancer survivors (YACS)
 Background: Because of the cancer and late effects of treatment, YACS face numerous age-specific physical, psychological, existential, and social issues impacting participation in everyday life and decreasing their health-related quality of life (HRQoL). Rehabilitation may improve participation in life roles, leisure activities and work and thus, heighten HRQoL. However, YACS rehabilitation needs are not being adequately met and multicomponent age-specific rehabilitation for YACS is limited.
 Objective: To develop an evidence-based, age-specific, multicomponent, and peer-based rehabilitation programme involving YACS and relevant stakeholders aiming to improve YACS participation in everyday life and their HRQoL.
 Methods: The development process of the programme drawn on the Medical Research Council UK framework for developing and evaluating complex interventions and is inspired by Hawkins et al.’s three-staged framework for co-production. From September 2019 to March 2023, YACS, professionals and researchers co-developed a rehabilitation programme through three stages: 1) Evidence review and stakeholder consultations; 2) Co-production of the intervention by involving users in four workshops, and 3) Articulating the programme theory, developing an intervention manual, recruitment strategy and referral pathways and selecting outcome measures. Key findings from each stage were incorporated into the subsequently stage.
 Results: We developed a comprehensive goal-oriented and peer-based rehabilitation programme called the Young Adults Taking ACtion (YATAC). The programme draws on a person-centered approach, the Social Cognitive Theory, and John Dewey’s learning theory. It consists of nine components delivered by an interdisciplinary team: 1) Need assessment, 2) Goal setting, 3) Everyday life, 4) Physical activity, 5) Psychological issues, 6) Work and education, 7) Sexuality and relationship, 8) Rights and finance, 9) Friends and Family and 10) Peer-to-peer support. Further, outcome measures for the programme were chosen, recruitment strategies were described, and referral pathways were identified. The evaluation showed advantages and disadvantages and future points to pay attention to when participating in a co-production process. 
 Conclusions: A multicomponent rehabilitation programme for YACS was developed involving the preferences and needs of YACS and stakeholders. Using co-production in the whole process of developing the programme will most likely lead to better evaluation and implementation in clinical practice. In addition, the comprehensive description of the development process and the knowledge derived from the process can inform future research of how to involve users in the development of rehabilitation interventions. Next step will be to feasibility test the programme.