A coordinated transition model for patients with cystinosis: from pediatrics to adult care

Improved outcome and longer life-expectancy in patients with cystinosis, and disease complexity itself, justify planning a guided-transition of affected patients from Pediatrics to adult medicine. The aims of the process are to guarantee the continuum of care and patient empowerment, moving from gua...

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Published inNefrologia : publicacion oficial de la Sociedad Espanola Nefrologia Vol. 36; no. 6; p. 616
Main Authors Ariceta, Gema, Camacho, Juan Antonio, Fernández-Obispo, Matilde, Fernández-Polo, Aurora, Gámez, Josep, García-Villoria, Judit, Lara, Enrique, Leyes, Pere, Martín-Begué, Nieves, Perelló, Manel, Pintos-Morell, Guillem, Torra, Roser, Torregrosa, J Vicens, Torres-Sierra, Sandra, Vila-Santandreu, Anna, Güell, Ana
Format Journal Article
LanguageEnglish
Spanish
Published Spain 01.11.2016
Subjects
Adolescent
Adult
Child
Cystinosis - therapy
Humans
Kidney Transplantation
Pediatrics
Renal Insufficiency, Chronic - therapy
Self Care
Transition to Adult Care
Young Adult
Adherence
Cystinosis
Kidney transplant
Trasplante renal
Adolescent
Transición
Transition
Cistinosis
Adherencia
Adolescente
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Summary:Improved outcome and longer life-expectancy in patients with cystinosis, and disease complexity itself, justify planning a guided-transition of affected patients from Pediatrics to adult medicine. The aims of the process are to guarantee the continuum of care and patient empowerment, moving from guardian-care to self-care. review of articles, expert opinion and anonymous surveys of patients, relatives and patient advocacy groups. elaboration a new document to support and coordinate the transition of patients with cystinosis providing specific proposals in a variety of medical fields, and adherence promotion. Nephrologists play a key role in transition due the fact that most cystinotic patients suffer severe chronic kidney disease, and need kidney transplantation before adulthood. we present a document providing recommendations and suggesting a chronogram to help the process of transition of adolescents and young adults with cystinosis in our area.
ISSN:1989-2284
DOI:10.1016/j.nefro.2016.05.012