Abstracts

Rationale: Timing of referral and transitions to adult care for patients with epilepsy varies widely among individuals, and is influenced by factors such as their psychiatric comorbidities, doctor-patient relationships or access to care. The purpose of this study was to compare the timings of transitions between groups of patients who transitioned early and those who did not, and to examine factors that may facilitate and hinder the transition of care.


Methods: This study included 18 patients (11 female, aged 18-49 years) who underwent comprehensive evaluation at our epilepsy monitoring unit (EMU). Inclusion criteria were diagnosis of epilepsy, onset of epilepsy before the age of 18, first medical visit to a pediatrician, a full IQ score of 70 or higher in Wechsler Adult Intelligence Scale-Third Edition, and consent to participate in the study. Data were collected from medical records and self-reported questionnaires. Questionnaires included the 31-item Patient-Weighted Quality of Life in Epilepsy inventory, the Neurological Disorders Depression Inventory for Epilepsy, and the Generalized Anxiety Disorder-7. Data were analyzed using the Mann-Whitney U test and compared the timing of transition between two groups before and after age 18 for levels of QOL and other factors.


Results: The mean age of the participants was 24.6 years (SD=8.6), and the mean age at transition was 20.0 years (SD=5.1). Seven participants transitioned to adult care because of a new school or job. The group that transitioned by age 18 (N=10) had significantly higher QOL scores at the time of the EMU evaluation (W = 17.0, p = .039) and significantly shorter time from seizure onset to first adult clinic visit (W = 76.5, p = .001) than those transitioned after age 18 (N=8). There were no significant differences between the two groups in depression (W = 56.0, p = .153), generalized anxiety (W = 59.5, p = .081), FIQ (W = 33.0, p = .532), or number of anti-seizure medications (W = 27.5, p = .253).


Conclusions: More than half of the participants transitioned before the age of 18. Transition timing of two participants were delayed due to lack of access to local adult specialized care. The level of QOL was the only difference between two group

s, suggesting early transition may have benefits to life regardless of disease prognosis. Early transition may be facilitated with the timing of new schooling or job search. Lack of access to adult specialized care may hinder transition and needs to be addressed urgently. Due to the small sample size, future studies should investigate the topic in a larger-scale along with deeper qualitative exploration in case studies.


Funding: This work was supported by JST SPRING, Grant Number JPMJSP2114, the Japan Society for the Promotion of Science Grant-in-Aid for Young Scientists (grant number 21K16616), the Japan Ministry of Health, Labour and Welfare Health Labour Sciences Research Grant Comprehensive Research on Disability Health and Welfare (grant number 21GC1017, 23GC1010), and the General Insurance Association of Japan Research Grant (grant number 23-08).