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

Clicks: 263
ID: 181103
2016
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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.
Reference Key
ariceta2016nefrologaa Use this key to autocite in the manuscript while using SciMatic Manuscript Manager or Thesis Manager
Authors ;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
Journal demiryolu mühendisliği
Year 2016
DOI
10.1016/j.nefroe.2016.12.006
URL
http://www.sciencedirect.com/science/article/pii/S2013251416301419
Keywords
Adolescent kidney transplant transition urology

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