Investigators from University Hospital of Rennes; Necker Hospital, Paris; and University Paris Descartes, France used a questionnaire to study the transition and transfer from pediatric to adult health-care system in patients with Dravet syndrome and their families. The diagnosis of Dravet syndrome was made during the first 2 years and was followed by a long follow-up in the pediatric health-care. A response rate of 85% was obtained from 60 families, and 61% experienced a transfer. Positive factors for a smooth transition included 1) the quality of transition preparation (p<.000001), 2) a longer duration of follow-up by the same child neurologist (p<.001), 3) the availability of the child neurology staff (p<.01), 4) transfer into adult health-care after the age of 18 (p<.01), and 5) a stable medical condition before transfer (p<.05). The age of transfer (18.7 +/- 4 years) was close to the legal age of adulthood, and the association of mental retardation with severe epilepsy had little impact on transfer age. All families reported a positive experience in the pediatric health care system. Child neurologists were considered as welcoming, available, and helpful. Almost all patients transferred reported no gap in the process. Their experience in the adult health-care system was similar to pediatric care. Only 9% patients contacted their child neurologist after the transfer, and 79% continued follow-up with the same neurologist. Preparation for transfer began an average of 1 year before transition, which is shorter than that generally recommended for chronic illnesses. [1]

COMMENT. A Canadian study considering strategies for transitioning to adult care for youth with Lennox-Gastaut syndrome and related disorders [2] found that an adult practitioner took less time with the patient and family, and the adult provider was not familiar with the medical disorder. A survey of 133 symposium attendees indicates much dissatisfaction with the process of transition, especially for patients with intellectual handicap. Suggestions to improve transition include identifying a willing adult service, a multidisciplinary approach, adolescent clinics, and attention to vocational training and/or special education.