The development of transition services in renal care in synergy with young patients, parents and pediatric and adult health care providers : a co-creation approach

Background and Aims Healthcare transition to adulthood is recognised as challenging for adolescents and young adults (AYA’s) diagnosed with chronic kidney disease. Therefore the implementation of a transition programme adjusted to the needs of this patient population is of great importance. However, rarely are the views of young people or their families sought about the process or relevant outcome of their transition process. The aim of this study was to co-develop a transition programme that (1) enables health care providers to facilitate improving transition outcomes from the perspective of all stakeholders, and (2) enhances self-management by young people with chronic kidney disease. Method The development of this programme involved (1) an extensive review of currently existing best-practices (published and unpublished), and (2) understanding the current state of transition practice at our centre by means of semi-structured interviews and focus groups with patients, parents and health care providers of both pediatric and adult side. Results A working group was established incorporating a reflective process designed to develop a community of practice. During the process, participants’ experiences, lessons learned from the review of current state of evidence and practice, and appreciation of the (changing) context within which participants were working were incorporated. Analysis revealed 6 core elements as the foundation of the transition program: the AYA as the main focus, involvement of the parents, holistic approach, flexibility, forward-looking approach, continuity in guidance and follow-up. We also identified the need to distinguish the difference between transitioning from child to teenager to young adult and the actual transfer between paediatric and adult care. The actual final proposed transition programme can be divided in 4 phases: (1) introduction of the transition process to parents and patients, (2) guiding the patient to become more independent and to gain insight in the disease and related themes, (3) managing the transfer to adult health care and (4) finalizing the transition care plan. Adequate on-going communication and collaboration between paediatric and adult care seems essential for achieving a successful program. Conclusion This study addressed the development of a transition programme as a multi-actor process wherein patients, parents and health care providers significantly contribute to the transition to adulthood and transfer to adult car