Researchers: Nicola Maggio ^1,2, Uriel Fennig ^1,2

Background: Epilepsy care requires continuous, multidisciplinary management to optimize health-related quality of life (HRQOL) and seizure control. Digital platforms offer new opportunities to enhance care delivery through self-monitoring and remote connectivity.

Objectives: To evaluate the impact of a novel digital platform on HRQOL among people living with epilepsy (PLWE).

Method: A prospective, longitudinal study was conducted with PLWE using the platform. Participants completed QOLIE-31 questionnaires at baseline and approximately every two months over an eight-month period.

Findings: Due to recruitment challenges, 26 participants initiated platform use, and data from 16 participants completing at least three questionnaires were analyzed. Significant improvements in HRQOL were observed among participants (mean QOLIE-31 improvement: 4.87; t-test p = 0.0331, Wilcoxon p = 0.0413). However, challenges in engagement were evident. Participant fatigue with lengthy questionnaires was a primary barrier. Insights from a systematic review support the feasibility of adopting shorter PROMs, such as QOLIE-10, to improve participation while retaining clinical relevance.

Conclusions: The platform improved HRQOL among engaged participants, demonstrating its potential for epilepsy care. However, the study emphasizes the need for shorter, user-friendly tools and strategies to enhance recruitment and retention.

Recommendations: Preliminary findings suggest digital platforms can benefit epilepsy care by improving HRQOL and patient empowerment. Integrating feasible PROMs like QOLIE-10 into clinical workflows may optimize engagement in future studies.

Research end date: 12/2024