Department of Paediatrics, Faculty of Medicine, University of Colombo, Sri Lanka.
Department of Community Medicine, Faculty of Medicine, University of Colombo, Sri Lanka.
Epilepsy Behav. 2021 Jun;119:107974. doi: 10.1016/j.yebeh.2021.107974. Epub 2021 May 1.
West syndrome is a severe epileptic encephalopathy occurring in infancy. Majority of affected children suffer from poor epilepsy control in later life and are dependent on care-givers for daily living. There is no previous study evaluating the Quality of Life (QOL) in children suffered from WS.
A prospective cohort study was performed at six years in a group of children with West syndrome, followed up in the Sri Lanka Infantile Spasm Study (SLISS). The quality of life was evaluated using Sri Lankan Health-Related Quality-of-Life Index for school children (SLHRQ-S), an age-specific, primary caregiver proxy-rated, validated questionnaire for Sri Lankan children with epilepsy. Information on epilepsy, medication, and daily activities was obtained from the parents.
Fifty parents of initial 97 children treated for WS participated. The majority had no ongoing epilepsy (56%) at time of evaluation. The mean QOL was 67.22 (SD 15.68). Mean QOL scores for individual domains showed that physical domain was the worst affected (58.51 (SD = 22.11)). Psychological and social function domains were 68.73 (SD = 17.74) and 75.2 (SD = 14.87), respectively. Male sex (0.02), using multiple anti-seizure medications (0.00) and lower ILAE epilepsy control scale (0.02) were significantly associated with a poor quality of life. Age at onset, delay in treatment, and early spasm control were among the factors that did not influence quality of life.
Despite having control of their epilepsy in the majority, these children suffered from poor quality of life. The greater impact on the physical domain possibly is related to the effect of underlying pathologies.
婴儿期发生的 West 综合征是一种严重的癫痫性脑病。大多数受影响的儿童在以后的生活中癫痫控制不佳，需要依赖照顾者进行日常生活。以前没有研究评估患有 WS 的儿童的生活质量 (QOL)。
在斯里兰卡婴儿痉挛研究 (SLISS) 中对一组 West 综合征患儿进行了为期六年的前瞻性队列研究。使用斯里兰卡儿童健康相关生活质量指数 (SLHRQ-S) 评估生活质量，这是一种特定于年龄的、主要照顾者代理评分的、针对斯里兰卡癫痫儿童的经过验证的问卷。从父母那里获得有关癫痫、药物和日常活动的信息。
97 名接受 WS 治疗的初始儿童的 50 名父母参与了该研究。在评估时，大多数患儿（56%）没有持续癫痫发作。平均 QOL 为 67.22（SD 15.68）。个别领域的平均 QOL 评分显示，身体领域受影响最严重（58.51（SD=22.11））。心理和社会功能领域分别为 68.73（SD=17.74）和 75.2（SD=14.87）。男性（0.02）、使用多种抗癫痫药物（0.00）和较低的 ILAE 癫痫控制量表（0.02）与较差的生活质量显著相关。发病年龄、治疗延迟和早期痉挛控制是影响生活质量的因素。
尽管大多数患儿的癫痫得到控制，但他们的生活质量仍较差。身体领域的影响更大可能与潜在病理的影响有关。
