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

Orphanet Journal of Rare Diseases

Olivia Boccara¹  Camille Vermersch²  Annabel Maruani³  Sophie Leducq³  Nina Sigg⁴  Pierre Vabres⁵  Stéphanie Mallet⁶  Christine Chiaverini⁷  Juliette Mazereeuw-Hautier⁸  Denis Herbreteau⁹  Anne Le Touze^1,10 

[1] Department of Dermatology and Reference Center for Genodermatoses and Rare Skin Diseases (MAGEC), Necker-Enfants Malades University Hospital, APHP5, Paris, France;Imagine Institute, Paris University, Necker-Enfants Malades University Hospital, APHP5, Paris, France;Department of Dermatology and Reference Center for Rare Diseases and Vascular Malformations (MAGEC), CHRU Tours, Avenue de La République, 37044, Tours Cedex 9, France;Department of Dermatology and Reference Center for Rare Diseases and Vascular Malformations (MAGEC), CHRU Tours, Avenue de La République, 37044, Tours Cedex 9, France;Universities of Tours and Nantes, INSERM 1246-SPHERE, 37000, Tours, France;Department of Dermatology, University Hospital Center of Angers, Angers, France;Department of Dermatology, University Hospital Center of Dijon, Dijon, France;Department of Dermatology, University Hospital Center of Marseille, 13885, Marseille Cedex 5, France;Department of Dermatology, University Hospital Center of Nice, Nice, France;Department of Dermatology, University Hospital Center of Toulouse, Toulouse, France;Department of Neuroradiology and Interventional Radiology, University Hospital Center of Tours, Tours, France;Department of Pediatric Surgery, University Hospital Center of Tours, Tours, France;

关键词: Rare skin diseases;    Health care transition;    Patient transfer;    Vascular malformations;    Adult;    Children;    Survey;    Patient satisfaction;   

DOI  :  10.1186/s13023-021-01970-7

来源: Springer

【 摘 要 】

BackgroundHealth 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.ResultsAmong 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.ConclusionsHealth 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.

【 授权许可】

CC BY