RESUMO
BACKGROUND: This study assesses perceptions of quality of life (QOL) and overall health in people with epilepsy (PWE) in Guinea after a clinical intervention providing modified and new antiseizure medicine (ASM) regimens. METHODS: Participants 12 years and older diagnosed with active epilepsy were prospectively and consecutively enrolled at two health centers in the Republic of Guinea (one urban, one rural) in 2022. 95% of participants were prescribed new/increased ASM doses, and interviewed for QOL and overall health perceptions at enrollment and three- and six-month follow ups. Univariate and linear mixed models were used to evaluate effects on QOL and overall health over time. RESULTS: The mean QOLIE-31 score (±SD) among 148 Guinean PWE (82 male, 66 female; mean age 27.3; 137 with >1 seizure in prior year) was 51.7 ± 12.8 at enrollment, 57.6 ± 16.0 after three months (n = 116), and 52.2 ± 9.9 after six months (n = 87). Overall health scores were 53.1 ± 26.9, 72.6 ± 21.5, and 65.7 ± 20.2 respectively. After three months, PWE had improved overall health and QOLIE-31 scores (p<0.0001, p = 0.003), but these improvements persisted for overall health and not QOLIE-31 after six months (p = 0.001, p = 0.63). Seizure freedom (prior 30 days) was 26% initially, and 62 (42%) of the remaining PWE experiencing seizures achieved seizure freedom at either the first or second follow-ups. CONCLUSIONS: A noticeable discrepancy exists between Guinean PWE's self-rated perceptions of QOL and overall health. Purely clinical interventions may not be sufficient to improve QOL, especially in people that experience severe, previously-untreated epilepsy in lower income settings.
