Background/Purpose: It is clear that young people (YP) with an autoimmune disease need a transitional process before they are transferred to the adult clinic. Therefore, a clinical transition pathway was implemented in 2009.  Purpose of this transition pathway was to improve transition with provision of care developmentally appropriate, focus on achievement of self-management skills and supporting parents. The aims of this study were I) to evaluate the effectiveness of this clinical transition  pathway, II) to evaluate the experiences and satisfaction in YA with autoimmune diseases in the transitional process.

Methods: All YP with an autoimmune disease who have been transferred from the pediatric to the adult rheumatology between 2009-2015 via the clinical transition pathway, were enrolled in this study. Most important points are an early start (14 years) with focus on self-management skills and independency using an individual transition plan (ITP) for each patient, joint consultations with professionals from pediatric and adult rheumatology and supporting parents in letting go. The ITP, a tool for  developing self-management skills is essential in this pathway.   Outcome measures for effective transition were drop out of care and completed ITP. To evaluate  effectiveness electronic patients records(EPR) (n=158) were reviewed on completed ITP’s and drop out of care. Additionally YA were asked to complete questionnaires after transition for the experience and satisfaction. Satisfaction with transition was measured with a transfer experiences scale, the OYOF-TES¹ (range 18-90) and a VAS scale (range 0-10); higher scores indicating higher satisfaction. Self-efficacy as an important variable for measuring self-management behavior was evaluated with the OYOF-SES² (range17-68, higher score, more SE).

Results: 158 YP were asked to participate, 77 YP returned questionnaires, a response rate of 50%. No difference was found between responders and non-responders on demographics and disease activity. Of 158 YA who ran through the clinical pathway, the overall rate of drop out was only 3.2% after one year. Of all YA 75% were transferred with an ITP. Satisfaction with transition measured with the OYOF-TES was high, 73.45 (SD 13.07). The VAS satisfaction was high with a mean of 7.6 (SD 1.62). Topics important for adolescents were discussed in almost all YA (96%). The OYOF-SES  58.65 (SD4.52). 

Conclusion: The implementation of a  clinical transition pathway was successful, a low dropout rate was seen and YP were satisfied with the transition process. High levels on the self-efficacy scale were reported, suggesting confidence of YP to achieve enough self-management skills. ¹ van Staa A, Sattoe JN Young adults’ experiences and satisfaction with the transfer of care.     J Adolesc Health. 2014 Dec;55(6):796-803. doi: 10.1016/j.jadohealth.2014.06.008. Epub 2014 Aug 19. ²A.L. van Staa, H.A. van der Stege, S. Jedeloo, et al. Readiness to transfer to adult care of adolescents with chronic conditions: Exploration of associated factors. J Adolesc Health, 48 (2011), pp. 295–302