Title |
Transición coordinada del paciente con cistinosis desde la medicina pediátrica a la medicina del adulto
|
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Published in |
Nefrología (Madrid), November 2016
|
DOI | 10.1016/j.nefro.2016.05.012 |
Pubmed ID | |
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. Vicens Torregrosa, Sandra Torres-Sierra, Anna Vila-Santandreu, Ana Güell |
Abstract |
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. review of articles, expert opinion and anonymous surveys of patients, relatives and patient advocacy groups. 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. 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. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Mexico | 1 | 50% |
Spain | 1 | 50% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 1 | 50% |
Practitioners (doctors, other healthcare professionals) | 1 | 50% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Unknown | 46 | 100% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Doctoral Student | 7 | 15% |
Student > Ph. D. Student | 5 | 11% |
Student > Master | 5 | 11% |
Professor > Associate Professor | 4 | 9% |
Other | 3 | 7% |
Other | 10 | 22% |
Unknown | 12 | 26% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 10 | 22% |
Nursing and Health Professions | 7 | 15% |
Psychology | 5 | 11% |
Business, Management and Accounting | 2 | 4% |
Pharmacology, Toxicology and Pharmaceutical Science | 2 | 4% |
Other | 4 | 9% |
Unknown | 16 | 35% |