Needs-based epilepsy follow-up: seizure control, treatment adherence and patient care

The use of needs-based epilepsy follow-up has increased due to technical solutions and resource constraints, however limited data on its long-term impact on patient safety is available. This study aimed to investigate long-term treatment and safety outcomes.

Patients meeting inclusion criteria were consecutively enrolled in needs-based epilepsy follow-up at two hospitals. Data from Patient-Reported Outcome Measures (PRO-EPI) were stored in a shared database for consenting participants. Data collected at inclusion were compared with follow-up data. Changes over time were assessed for seizure frequency, treatment adherence, and perceived sense of being cared for. Descriptive analyses of nominal variables were conducted, and logistic mixed regression models were used to examine the effect of time on responses to seizure-related questions, adjusted for sex and study site.

A total of 291 people (mean age 35.6 years (SD 14.4), and 189 (65%) female) were followed for an average of 607 days. Self-reported adherence to treatment remained stable, with 83% rarely or never forgetting their antiseizure medication at inclusion, 83% at two years, and 74% at three years. Seizure control was consistent, with 84% reporting a stable seizure situation at baseline, 85% at two years, and 83% at three years. A high sense of safety was maintained, reported by 83% at inclusion, 90% at two years, and 86% at three years.

Needs-based epilepsy follow-up appears to be a safe and effective alternative to standard of care, with stable outcomes in seizure control, medication adherence, and patients' sense of safety throughout the follow-up.