Fiche publication


Date publication

août 2021

Journal

Orphanet journal of rare diseases

Auteurs

Membres identifiés du Cancéropôle Est :
Pr VABRES Pierre


Tous les auteurs :
Vermersch C, Boccara O, Chiaverini C, Mazereeuw-Hautier J, Sigg N, Mallet S, Vabres P, Herbreteau D, Le Touze A, Maruani A, Leducq S,

Résumé

Health care transition (i.e., transition from pediatric to adult care) is challenging in chronic conditions but has been poorly studied in rare chronic skin diseases. We investigated the proportion of lost to follow-up among patients with superficial vascular malformations after health care transition. We also collected patients' opinions. This prospective, multicenter, cross-sectional study was performed at 7 French hospitals. We included patients aged 19-25 years, who were followed for a superficial vascular malformation before age 16, and who had completed the transition period in 2020. Data were collected from medical records and a questionnaire was sent to included patients asking about the health care transition.

Mots clés

Adult, Children, Health care transition, Patient satisfaction, Patient transfer, Rare skin diseases, Survey, Vascular malformations

Référence

Orphanet J Rare Dis. 2021 Aug 6;16(1):352