A coordinated transition model for patients with cystinosis: from pediatrics 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. Vicens Torregrosa, Sandra Torres-Sierra, Anna Vila-Santandreu, Ana Güell

Research output: Contribution to journalArticleResearchpeer-review

5 Citations (Scopus)

Abstract

© 2016 Sociedad Española de Nefrología 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.
Original languageEnglish
Pages (from-to)616-630
JournalNefrologia
Volume36
Issue number6
DOIs
Publication statusPublished - 1 Nov 2016

Keywords

  • Adherence
  • Adolescent
  • Cystinosis
  • Kidney transplant
  • Transition

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