Preparing adolescents and young adults with epilepsy for transitioning health care (PATH) study: The important role of age and self-efficacy

Abstract

Background

At least 30% of youth with epilepsy will require transition from pediatric to adult neurology care. Many adolescents and young adults (AYAs) with epilepsy are inadequately prepared for health care transition, which may contribute to health care disruptions and decreased quality of life. The current study aimed to add to the growing body of literature on health care transition in epilepsy by characterizing a sample of AYAs with epilepsy and assessing the relationship between pre-existing and behaviorally modifiable factors and epilepsy-specific transition readiness.

Methods

103 AYAs (M_age = 17.56; range = 14–21; 54% female; 85% White) with epilepsy and 84 of their caregivers were enrolled from two pediatric hospitals in the United States. Participants provided sociodemographic and medical information and completed questionnaires assessing functioning, epilepsy management, and transition readiness. Data were analyzed using a two-step hierarchical multiple linear regression model with epilepsy-specific transition readiness as the outcome: 1) pre-existing factors (i.e., age, insurance, seizure severity); and 2) behaviorally modifiable factors (i.e., cognitive functioning, medication self-management, epilepsy self-efficacy).

Results

Only 44% of AYAs had discussed health care transition with their pediatric neurologist. The final model was significant, ΔF (3, 90) = 13.45, p < 0.001. Older age and greater epilepsy self-efficacy were associated with greater epilepsy-specific transition readiness.

Conclusion

AYAs with greater epilepsy self-efficacy may be better prepared for the transition from pediatric to adult neurology care. Routine assessment of epilepsy self-efficacy and transition readiness starting in early adolescence may help to identify individuals who could benefit from targeted interventions.