Transition and transfer from pediatric to adult health care in epilepsy: A families' survey on Dravet syndrome

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.