Bridging the Treatment Gap by Expanding Access to Care for People With Epilepsy in Kenya (BEACON)

VOILS: Domains of Subjective Extent of Nonadherence (DOSE-Nonadherence)

Changes in self-reported adherence to antiseizure medication at one year from baseline as assessed using a two-domain self-report measure of medication non-adherence tool

Antiseizure medication blood levels

Blood concentration of antiseizure medications will be measured as a direct method of assessing medication adherence. A blood sample (2ml) will be collected to measure adherence.

Number of participants retained in care

For the BEACON group, an electronic medical record system will be used to track follow-up status, patient reminders and retention in care. For usual care, participant follow-up status will be recorded in the patient chart to mimic real-world practice. Retention in care status will be recorded as yes/no. Retention in care will be defined as completing at least 4 routine epilepsy follow-ups within a 12 month period.

Liverpool Seizure Severity Scale 2.0

NINDS Common Data Elements tool to measure perception of seizure severity. The 12-item tool measures the number of seizures and how the patient rates its severity. The tool also measures the nature of their seizures, frequency and the effects of their seizures. Total score is the sum of individual item scores, with higher scores indicating more severe or impactful seizures. The total score ranges from 0 (no seizures) to 100 (most severe possible)

QOLIE-31

The 31-item self-report questionnaire designed to assess the health-related quality of life of adults living with epilepsy. It evaluates seven key dimensions: seizure worry, overall quality of life, emotional well-being, energy/fatigue, cognitive functioning, medication effects, and social functioning. Responses are converted into a weighted score ranging from 0 to 100, where higher values indicate a better quality of life.

Kilifi Epilepsy Perceived Stigma Scale (KESS)

This 15-item scale which was developed in Kenyan setting, measures perceived stigma. Specifically, the tool assesses (1) not relating well with family members, 2) not being accepted by peers) and 3) not being taken seriously by other people. Each item is scored on a 3-point Likert scale, leading to a total possible score ranging from 0 to 30. Higher the score greater the perceived stigma.

European Quality of Life 5 Dimensions 3 Level Version (EQ-5D-3L)

The EQ-5D-3L tool will be used to estimate the impact of BEACON in terms of costs per quality-of-life years gained relative to usual care. The scale ranges from 0 to 100 with 100 being the best health.