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  • Title: Transition and transfer from pediatric to adult health care in epilepsy: a families' survey on Dravet syndrome.
    Author: Kuchenbuch M, Chemaly N, Chiron C, Dulac O, Nabbout R.
    Journal: Epilepsy Behav; 2013 Oct; 29(1):161-5. PubMed ID: 23973640.
    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.
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