a coordinated transition model for patients with cystinosis: from pediatric to adult care

a coordinated transition model for patients with cystinosis: from pediatric to adult care

;Gema Ariceta;Juan Antonio Camacho;Matilde Fernández-Obispo;Aurora Fernández-Polo;Josep Gámez;Judit García-Villoria;Enrique Lara;Pere Leyes;Nieves Martín-Begué;Manel Perelló;Guillem Pintos-Morell;Roser Torra;J. Vicenç Torregrosa;Sandra Torres-Sierra;Anna Vila-Santandreu;Ana Güell;Grupo T-CiS.bcn
demiryolu mühendisliği 2016 Vol. 36 pp. 616-630
172
ariceta2016nefrologaa

Abstract

Introduction: Improved outcome and longer life expectancy in patients with cystinosis and the intrinsic complexity of the disease, underline the need for a guided transition of patients from pediatric to adult care. The process aims to guarantee the continuum of care and enable the empowerment of patients from guardian to self-care. Methods: Bibliography review, expert opinion and anonymous surveys of patients, relatives and patient advocacy groups. Results: A new plan to support and coordinate the transition of cystinotic patients providing specific proposals for a variety of medical fields and improved treatment adherence. Nephrologists play a key role in the transition since most cystinotic patients have severe chronic kidney disease and require kidney transplantation before adulthood. Conclusion: We present a proposal providing recommendations and a chronogram to aid the transition of adolescents and young adults with cystinosis in our area.

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181103
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10.1016/j.nefroe.2016.12.006
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