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

• DOI: 10.1016/j.nefroe.2016.12.006
• Publication Date: 2017-01-13T02:16:13Z
• Authors: Gema Ariceta; Juan Antonio Camacho; Matilde Fernández...; Aurora Fernández-...; Josep Gámez; Judit García-Vill...; Enrique Lara; Pere Leyes; Nieves Martín-Begué; Manel Perelló; Guillem Pintos-Mo...; Roser Torra; J. Vicenç Torregrosa; Sandra Torres-Sierra; Anna Vila-Santandreu; Ana Güell
• Keywords: Adult; Transition to Adult Care; Adolescent; Cystinosis; Kidney Transplantation; Pediatrics; Diseases of the genitourinary system. Urology; 3. Good health; Self Care; Young Adult; 03 medical and health sciences; 0302 clinical medicine; Adherence; Transition; Humans; RC870-923; Renal Insufficiency, Chronic; Kidney transplant; Child

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.