AIMS: To explore how young people with juvenile-onset rheumatic and musculoskeletal diseases (jRMDs) and their parent(s) experience care during preparation for the upcoming transfer to adult services, and to develop a clinical transition pathway.METHOD: A survey was conducted with 32 young people aged between 14 and 20 years with jRMDs, and their parents ( n =33), treated at the department of paediatric rheumatology in a tertiary care children's hospital in the Netherlands.RESULTS: More than 30% of young people would have liked to discuss topics such as educational and vocational choices in a clinic, but did not get the opportunity. Preparation for transition was poor as was training in self-management skills. One third of parents had feelings of anxiety about the upcoming transfer. Results from the survey and evidence-based principles of transitional care were used to develop the clinical transition pathway. The pathway focuses on starting transition early, developing self-management skills, joint consultations and supporting parents in giving young people control of their clinical care.CONCLUSION: Care does not currently meet the needs of young people in the process of transition to adult rheumatology services. The clinical transition pathway developed as a result of the study is a tool that may improve this process.

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Keywords child health, clinical transition pathway, juvenile-onset rheumatic and musculoskeletal diseases, transition of care, young people
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Journal Nursing children and young people
Walter, M.J.M, Hazes, J.M. (Johanna Mw), Dolhain, R.J.E.M, van Pelt, P.A, van Dijk, A. (Annette), & Kamphuis, S.S.M. (2017). Development of a clinical transition pathway for adolescents in the Netherlands. Nursing children and young people, 29(9), 37–43. doi:10.7748/ncyp.2017.e932