Health care transition for patients with vascular malformations: a French multicenter cross-sectional study.
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,
Lien Pubmed
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