Transition and Transfer From Pediatric to Adult Health Care in Epilepsy: A Families' Survey on Dravet Syndrome

Epilepsy Behav. 2013 Oct;29(1):161-5. doi: 10.1016/j.yebeh.2013.07.015. Epub 2013 Aug 22.

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.

Keywords: Adult care; Child neurologist; Childhood; Dravet syndrome; Epilepsy; Mental retardation; Neurologist; Pediatric care; Transfer; Transition.

MeSH terms

  • Adolescent
  • Adult
  • Continuity of Patient Care / statistics & numerical data*
  • Epilepsies, Myoclonic / epidemiology*
  • Epilepsies, Myoclonic / therapy*
  • Family Health*
  • Female
  • Follow-Up Studies
  • Health Surveys
  • Humans
  • Male
  • Middle Aged
  • Patient Transfer / statistics & numerical data*
  • Pediatrics*
  • Surveys and Questionnaires
  • Young Adult