TY - JOUR
T1 - A coordinated transition model for patients with cystinosis: from pediatrics to adult care
AU - Ariceta, Gema
AU - Camacho, Juan Antonio
AU - Fernández-Obispo, Matilde
AU - Fernández-Polo, Aurora
AU - Gámez, Josep
AU - García-Villoria, Judit
AU - Lara, Enrique
AU - Leyes, Pere
AU - Martín-Begué, Nieves
AU - Perelló, Manel
AU - Pintos-Morell, Guillem
AU - Torra, Roser
AU - Torregrosa, J. Vicens
AU - Torres-Sierra, Sandra
AU - Vila-Santandreu, Anna
AU - Güell, Ana
PY - 2016/11/1
Y1 - 2016/11/1
N2 - © 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.
AB - © 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.
KW - Adherence
KW - Adolescent
KW - Cystinosis
KW - Kidney transplant
KW - Transition
U2 - 10.1016/j.nefro.2016.05.012
DO - 10.1016/j.nefro.2016.05.012
M3 - Article
VL - 36
SP - 616
EP - 630
IS - 6
ER -