Background/Purpose: Evidence based recommendations for transitional programs are available. Despite this, half of Young People (YP) do not make a successful transfer and implementation of transitional care is not widespread. Therefore, it is important to improve transitional care for YP with an autoimmune disease (AID). A potential tool could be the institution of a clinical transition pathway (CTP). The aim of this study was i) to explore how YP with an AID and their parent(s) experience care during the preparation for the upcoming transfer to adult care, ii) to develop a CTP.  

Methods: A survey was conducted among YP with an AID (n=48), age 14-20 years with a separate survey for parents (n=48). Subjects of the 38 survey-questions involved demographics, achievement of self-management skills, experience with preparation for transfer and questioning for topics that were not discussed but should have been in clinic. The CTP was built based on principles of vanHaecht & Sermeus¹, results of the surveys were incorporated into the CTP.

Results: Response rate was 67% for YP and 69% for parents. It appeared that almost all YP attended the consultation with  parents (88%). Training self-management skills was neglected and only 25% of YP were ordering medication or made appointments independently (15 %). Transition was not a topic in the consultation according to half of the YP. One third of all parents had feelings of anxiety about the upcoming transfer. Almost half of the YP needed discussing topics that were never mentioned during consultation like education, vocational, and alcohol. Results were used to built the CTP (figure 1). Most important points are an early start , with focus on self-management skills and independency using an individual transition plan (ITP) for each patient, joint consultations with professionals from both pediatric and adult rheumatology departments and supporting parents in letting go. The ITP (developed using ‘DREAM TEAM UK’ ²) was divided into 3 age-categories (12-14;14-16;16-18+), with final checklist regarding different domains and per category targets that needed to be met. 

Conclusion:  Current care in general does not meet the needs of YP  in the process of transition to adult rheumatology care.  The developed CTP is a tool to improve this process with provision of care appropriate to the developmental stage of YP, focus on achievement of self-management skills and self-reliance and supporting parents during this process. ¹ VanHaecht et all. Clinical pathway audit tools: a systematic review. Journal of Nursing Management, 2006, 14, 529–537K. ² McDonagh et all. Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis J Child Health Care. 2006 Mar;10(1):22-42.