Carry-over care for epilepsy

Abstract

With the improvement of survival due to therapeutic advances for various diseases, pediatric patients reaching adulthood, so called carry-over patients, are increasingly seen in various medical disciplines. Epilepsy is one of the diseases in which carry-over care poses certains issues. According to the questionnaire surveys that we conducted among members of the Japanese Society of Child Neurology [childhood neurologists (CN)] and members of the Societas Neurologica Japonica [adult neurologists (AN)], 95 % of CNs who responded had knowledge of the term “carry-over”, which was remarkably higher than 46% of the responding ANs. Approximately 27% of the patients cared for by CNs were adults. Sixty-nine percent of CNs and seventy-eight percent of ANs experienced difficulties with epilepsy care. The reasons for these difficulties, as provided by both CNs and ANs, were “psychiatric and psychological complications” as well as “laws and regulations related to epilepsy”. In addition, CNs provided the reasons of “no adult inpatient facilities” and “medical complications”, while ANs responded “EEG interpretation” and “treatment for epileptic seizures.” The factors impeding transition to adult specialties for CNs were ① no specialists in adult epilepsy in local areas, and ② unwillingness of families and patients to change specialty; the factors for ANs were ① difficulty in achieving a complete picture of the disease course from childhood and ② lack of familiarity with childhood-specific epilepsy syndromes. To overcome the issues of carry-over, several strategies are essential, such as increasing the number of doctors providing care for epilepsy; enhancing interdisciplinary collaborations between pediatric neurology, adult neurology, psychiatry, neurosurgery, and other related disciplines; and education of the public.