INSERM UMR 1094, Tropical Neuroepidemiology, Limoges, France.
Epilepsia. 2013 Aug;54(8):1342-51. doi: 10.1111/epi.12218. Epub 2013 May 11.
We conducted a population-based study of epilepsy in Prey Veng (Cambodia) to explore self-esteem, fear, discrimination, knowledge-attitude-practice (KAP), social-support, stigma, coping strategies, seizure-provoking factors, and patient-derived factors associated with quality of life (QOL).
The results are based on a cohort of 96 cases and matched controls (n = 192), randomly selected from the same source population. Various questionnaires were developed and validated for internal consistency (by split-half, Spearman-Brown prophecy, Kuder-Richardson 20), content clarity and soundness. Summary, descriptive statistics, classical tests of hypothesis were conducted. Uncorrected chi-square was used. Group comparison was done to determine statistically significant factors, for each domain, by conducting logistic regression; 95% confidence interval (CI) with 5% (two-sided) statistical significance was used.
All questionnaires had high internal consistency. Stress was relevant in 14.0% cases, concealment in 6.2%, denial in 8.3%, negative feelings in public in 3.0%. Mean self-esteem was 7.5, range 0-8, related to seizure frequency. Mean discrimination was least during social interactions. Coping strategies were positive (e.g. look for treatment). Postictal headache, anger, no nearby health facility, etc. were associated with QOL.
The reliability of our questionnaires was high. A positive social environment was noted with many infrequent social and personal prejudices. Not all populations should (by default) be considered as stigmatized or equipped with poor KAP. We addressed themes that have been incompletely evaluated, and our approach could therefore become a model for other projects.
我们在磅湛省(柬埔寨)进行了一项基于人群的癫痫研究,以探讨与生活质量(QOL)相关的自尊、恐惧、歧视、知识-态度-实践(KAP)、社会支持、污名、应对策略、诱发因素和患者自身因素。
本研究结果基于从同一源人群中随机选择的 96 例病例和匹配对照(n=192)的队列。为内部一致性(通过对半分、斯皮尔曼-布朗预测、Kuder-Richardson 20)、内容清晰度和合理性开发和验证了各种问卷。进行了总结、描述性统计、经典假设检验。使用未校正卡方进行检验。通过逻辑回归对每个领域进行组间比较,以确定具有统计学意义的因素;使用 95%置信区间(CI)和 5%(双侧)统计学意义。
所有问卷的内部一致性均较高。14.0%的病例存在压力,6.2%的病例存在隐瞒,8.3%的病例存在否认,3.0%的病例在公众场合存在负面情绪。平均自尊得分为 7.5,范围为 0-8,与发作频率相关。平均歧视程度在社会互动中最低。应对策略是积极的(例如寻求治疗)。癫痫发作后头痛、愤怒、附近没有医疗机构等与 QOL 相关。
我们的问卷具有较高的可靠性。注意到有一个积极的社会环境,很少存在社会和个人偏见。并非所有人群都应该(默认)被视为污名化或知识-态度-实践较差。我们解决了一些尚未得到充分评估的主题,因此我们的方法可以成为其他项目的模型。