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10.3389/fped.2017.00191

http://scihub22266oqcxt.onion/10.3389/fped.2017.00191
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C5583154!5583154!28913329
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suck abstract from ncbi


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pmid28913329      Front+Pediatr 2017 ; 5 (ä): ä
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  • Structured Transition Protocol for Children with Cystinosis #MMPMID28913329
  • Raina R; Wang J; Krishnappa V
  • Front Pediatr 2017[]; 5 (ä): ä PMID28913329show ga
  • 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.
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