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...

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Bibliographic Details
Published in:Epilepsy & behavior 2013-10, Vol.29 (1), p.161-165
Main Authors: Kuchenbuch, Mathieu, Chemaly, Nicole, Chiron, Catherine, Dulac, Olivier, Nabbout, Rima
Format: Article
Language:English
Subjects:
Adolescent
Adult
Adult care
Age
Child neurologist
Childhood
Continuity of Patient Care - statistics & numerical data
Dravet syndrome
Epilepsies, Myoclonic - epidemiology
Epilepsies, Myoclonic - therapy
Epilepsy
Family Health
Female
Follow-Up Studies
Health Surveys
Humans
Male
Mental retardation
Middle Aged
Neurologist
Neurology
Patient Transfer - statistics & numerical data
Pediatric care
Pediatrics
Surveys and Questionnaires
Transfer
Transition
Young Adult
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Summary: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.
ISSN:1525-5050
1525-5069
DOI:10.1016/j.yebeh.2013.07.015