Ham Andrew Siyoon, Traore Mohamed, Othon Guelngar Carlos, Conde Mohamed Lamine, Lamine Toure Mohamed, Djigué Barry Souleymane, Kaba Condé, Karinka Diawara, Idrissa Doumbouya, Idrissa Camara, Diallo Djenabou, Duan Rui, Rice Dylan R, Cisse Fode Abass, Mateen Farrah J
Harvard University, Cambridge, MA, USA.
National Ignace Deen Hospital, University of Conakry, Guinea.
Seizure. 2023 Oct;111:30-35. doi: 10.1016/j.seizure.2023.07.008. Epub 2023 Jul 17.
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.
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.
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.
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.
本研究评估了在几内亚,临床干预提供改良和新型抗癫痫药物(ASM)治疗方案后,癫痫患者(PWE)对生活质量(QOL)和总体健康的认知。
2022年,在几内亚共和国的两个健康中心(一个城市中心,一个农村中心),对12岁及以上被诊断为活动性癫痫的参与者进行前瞻性连续招募。95%的参与者被给予新的/增加剂量的ASM,并在入组时以及三个月和六个月随访时接受关于QOL和总体健康认知的访谈。使用单变量和线性混合模型来评估随时间对QOL和总体健康的影响。
148名几内亚PWE(82名男性,66名女性;平均年龄27.3岁;137名在前一年有超过1次癫痫发作)中,入组时QOLIE - 31平均得分(±标准差)为51.7±12.8,三个月后为57.6±16.0(n = 116),六个月后为52.2±9.9(n = 87)。总体健康得分分别为53.1±26.9、72.6±21.5和65.7±20.2。三个月后,PWE的总体健康和QOLIE - 31得分有所改善(p<0.0001,p = 0.003),但六个月后,总体健康得分的改善持续存在,而QOLIE - 31得分则没有(p = 0.001,p = 0.63)。最初无癫痫发作(前30天)的比例为26%,其余有癫痫发作的PWE中,62名(42%)在第一次或第二次随访时实现了无癫痫发作。
几内亚PWE对QOL和总体健康的自我评估认知之间存在明显差异。单纯的临床干预可能不足以改善QOL,尤其是在低收入环境中患有严重的、以前未经治疗的癫痫的人群中。