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

• Published in: Orphanet journal of rare diseases Vol. 16; no. 1; pp. 1 - 352
• Main Authors: Vermersch, Camille, Boccara, Olivia, Chiaverini, Christine, Mazereeuw-Hautier, Juliette, Sigg, Nina, Mallet, Stéphanie, Vabres, Pierre, Herbreteau, Denis, Le Touze, Anne, Maruani, Annabel, Leducq, Sophie
• Format: Journal Article
• Language: English
• Published: London BioMed Central Ltd 06.08.2021; BioMed Central; BMC
• Subjects: Abnormalities; Adult; Adults; Age; Care and treatment; Child development; Children; Chronic illnesses; Cross-sectional studies; Departments; Dermatology; Diabetes; Disease; Health care transition; Heart; Hospitals; Human health and pathology; Life Sciences; Medical records; Medical research; Patient outcomes; Patient satisfaction; Patient transfer; Patients; Pediatrics; Questionnaires; Rare diseases; Rare skin diseases; Risk factors; Santé publique et épidémiologie; Skin diseases; Surveys; Teenagers; Transitional care; Vascular malformations; France; Vascular malformations; Survey; Health care transition; Rare skin diseases; Patient transfer; Adult; Children; Patient satisfaction
• ISSN: 1750-1172; 1750-1172
• DOI: 10.1186/s13023-021-01970-7

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. Among the 90 patients included, 41 (46%) were lost to follow-up after health care transition period. The age at diagnosis was significantly higher for lost to follow-up than non- lost to follow-up patients. The lost to follow-up proportion was similar between patients who changed and did not change hospitals during the transition. Responses to the questionnaire were obtained for 47 of 90 patients (52.2% response rate); most were satisfied with their care (n = 31/36, 86.1%); however, a lack of psychological support was reported. Health care transition is associated to a high rate of lost to follow-up. Early management seems associated to less lost to follow-up. Further studies are needed to better understand risk factors for a failed health care transition and its consequences.