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Nefrología (Madrid)
versión On-line ISSN 1989-2284versión impresa ISSN 0211-6995
Resumen
ARICETA, Gema y GRUPO T-CIS.BCN et al. A coordinated transition model for patients with cystinosis: from pediatrics to adult care. Nefrología (Madr.) [online]. 2016, vol.36, n.6, pp.616-630. ISSN 1989-2284. https://dx.doi.org/10.1016/j.nefro.2016.05.012.
Introduction:
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.
Methods:
review of articles, expert opinion and anonymous surveys of patients, relatives and patient advocacy groups.
Results:
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.
Conclusion:
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.
Palabras clave : Transition; Adolescent; Cystinosis; Kidney transplant; Adherence.