Structured transition protocol for children with cystinosis

Rupesh Raina, Joseph Wang, Vinod Krishnappa

Resultado de la investigación: Articlerevisión exhaustiva

6 Citas (Scopus)


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.

Idioma originalEnglish (US)
Número de artículo191
PublicaciónFrontiers in Pediatrics
EstadoPublished - ago. 31 2017

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health


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