Transition from child to adult health care for patients with lysosomal storage diseases in France: current status and priorities—the TENALYS study, a patient perspective survey - Genevaz, Delphine; Arnoux, Armelle; Marcel, Catherine; Brassier, Anaïs; Pichard, Samia; Feillet, François; Labarthe, François; Chabrol, Brigitte; Berger, Marc; Lapointe, Anne-Sophie; Frigout, Yvann; Héron, Bénédicte; et al. (Orphanet journal of rare diseases, 2022)
Keywords: Adolescent; Adult; Care and treatment; Child; Children; Cross-Sectional Studies; Delivery of Health Care; France; Health aspects; Hematology; Human Genetics; Human health and pathology; Humans; Life Sciences; Lysosomal diseases; Lysosomal storage diseases; Lysosomal Storage Diseases - therapy; Medicine; Medicine & Public Health; Metabolism, Inborn errors of; Methods; Patient opinion; Patient survey; Pediatric research; Pediatricians; Pharmacology/Toxicology; Planning; Surveys; Surveys and Questionnaires; Transition from childhood to adulthood; Transitional care; Young Adult; France; Patient survey; Patient opinion; Lysosomal diseases; Transition from childhood to adulthood