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2017 ; 5
(ä): 191
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Structured Transition Protocol for Children with Cystinosis
#MMPMID28913329
Raina R
; Wang J
; Krishnappa V
Front Pediatr
2017[]; 5
(ä): 191
PMID28913329
show 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.