AUTHOR=Raina Rupesh , Wang Joseph , Krishnappa Vinod TITLE=Structured Transition Protocol for Children with Cystinosis JOURNAL=Frontiers in Pediatrics VOLUME=5 YEAR=2017 URL=https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00191 DOI=10.3389/fped.2017.00191 ISSN=2296-2360 ABSTRACT=

The transition from pediatric to adult medical services has a greater impact on the care of adolescents or young adults with chronic diseases such as cystinosis. This transition period is a time of psychosocial development and new responsibilities placing these patients at increased risk of non-adherence. This can lead to serious adverse effects such as graft loss and progression of the disease. Our transition protocol will provide patients, families, physicians, and all those involved a structured guide to transitioning cystinosis patients. This structured protocol depends on four areas of competency: Recognition, Insight, Self-reliance, and Establishment of healthy habits (RISE). This protocol has not been tested and therefore challenges not realized. With a focus on medical, social, and educational/vocational aspects, we aim to improve transition for cystinosis patients in all aspects of their lives.