| Autor: |
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 |
| Jazyk: |
angličtina |
| Rok vydání: |
2016 |
| Předmět: |
|
| Zdroj: |
Nefrología (English Edition), Vol 36, Iss 6, Pp 616-630 (2016) |
| Druh dokumentu: |
article |
| ISSN: |
2013-2514 |
| DOI: |
10.1016/j.nefroe.2016.12.006 |
| Popis: |
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. |
| Databáze: |
Directory of Open Access Journals |
| Externí odkaz: |
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