Structured transition protocol for children with cystinosis

Rupesh Raina, Joseph Wang, Vinod Krishnappa

Research output: Contribution to journalArticlepeer-review

6 Scopus citations

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.

Original languageEnglish (US)
Article number191
JournalFrontiers in Pediatrics
Volume5
DOIs
StatePublished - Aug 31 2017

Keywords

  • Adolescent
  • Chronic disease self-management
  • Pediatric
  • Transition care
  • Transition clinic

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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