Perceptions in the experience of transition from pediatric to adult care of patients with childhood-onset epilepsy in Japan

Abstract

Objective

This study aimed to clarify perceptions of the transition from pediatric to adult care for patients with childhood-onset epilepsy in Japan.

Methods

A qualitative descriptive study design was used. Semi-structured interviews were conducted with patients with childhood-onset epilepsy who had transitioned to adult care attending a tertiary hospital’s adult outpatient care unit specializing in treating epilepsy. Data were analyzed using content analysis to extract perceptions regarding the transition from pediatric to adult care.

Result

Six male and seven female patients between the ages of 18 and 49 years participated in the study. Seventeen perception categories regarding the experience of transitioning from pediatric to adult care were identified: {I followed a specific transfer process}, {I want to transition to adult care}, {I want to remain in pediatrics},{I have noticed something after transitioning to adult care}, {I recall trust in pediatricians}, {increased motivation for self-management}, and {I want detailed explanations about illness}.

Conclusions

The patients wanted to transition to adult medicine, but were passive, waiting for their physicians to suggest the transition. Furthermore, their perceptions of their own self-care varied. Pediatric healthcare providers should discuss and support the decision to transition from pediatric to adult care and provide information to help patients with childhood-onset epilepsy accept their future and understand their self-management requirements. These patients may become independent through the transition to adult care, and collaboration between pediatric and adult medicine is important to pass the responsibility of self-support to medical providers in adult care.