Transition and transfer from pediatric to adult health care in epilepsy: A families' survey on Dravet syndrome
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- 作者：Mathieu Kuchenbuch ; Nicole Chemaly ; Catherine Chiron ; Olivier Dulac ; Rima Nabbout
- 关键词：Dravet syndrome ; Epilepsy ; Childhood ; Mental retardation ; Pediatric care ; Adult care ; Transition ; Transfer ; Child neurologist ; Neurologist
- 刊名：Epilepsy & Behavior
- 出版年：2013
- 出版时间：October, 2013
- 年：2013
- 卷：29
- 期：1
- 页码：161-165
- 全文大小：384 K
文摘
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.