title: Transition and transfer from pediatric to adult health care in epilepsy: a families' survey on Dravet syndrome.
abstract: We used a questionnaire to ascertain the perception of transition and transfer from pediatric to adult health-care system in patients with Dravet syndrome and their families. Sixty families received the questionnaire. We had a response rate of 85%. Sixty-one percent of patients experienced a transfer. Factors that positively impacted transfer were the quality of transition preparation (p<.000001), a longer duration of follow-up by the same child neurologist (p<.001), the availability of the child neurology staff (p<.01), a transfer into the adult health-care system after the age of 18 (p<.01), and a stable medical condition before transfer (p<.05). All families reported a positive experience in the pediatric health-care system. Child neurologists were considered as welcoming, available, and helpful. Their experience in the adult health-care system was similar to pediatric care. Almost all patients who experienced "transfer" reported no gap in this process.
authors: Department of Pediatrics, University Hospital of Rennes, 35000 Rennes, France; Department of Neurophysiology, University Hospital of Rennes, 35000 Rennes, France; Centre de référence Epilepsies rares, APHP, Department of Pediatric Neurology, Necker Hospital, 75015 Paris, France.
authors: Mathieu
authors: M
authors: Kuchenbuch
authors: Nicole
authors: N
authors: Chemaly
authors: Catherine
authors: C
authors: Chiron
authors: Olivier
authors: O
authors: Dulac
authors: Rima
authors: R
authors: Nabbout
mesh_terms: D000293:Adolescent; D000328:Adult; D003266:Continuity of Patient Care / Q000706:statistics & numerical data*; D004831:Epilepsies, Myoclonic / Q000453:epidemiology* / Q000628:therapy*; D005192:Family Health; D005260:Female; D005500:Follow-Up Studies; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D010360:Patient Transfer / Q000706:statistics & numerical data*; D010372:Pediatrics; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: Adult care; Child neurologist; Childhood; Dravet syndrome; Epilepsy; Mental retardation; Neurologist; Pediatric care; Transfer; Transition