Nagarathnam M, Vengamma B, Shalini B, Latheef Saa
Department of Medical and Surgical Nursing, College of Nursing, Sri Venkateswara Institute of Medical Sciences, Tirupati, Andhra Pradesh, India.
Department of Neurology, Sri Venkateswara Institute of Medical Sciences, Tirupati, Andhra Pradesh, India.
Ann Indian Acad Neurol. 2017 Jul-Sep;20(3):233-241. doi: 10.4103/aian.AIAN_36_17.
Apart from unpredictable seizures and consequent injuries, people with epilepsy (PWE) confront with psychosocial adjustments. Quality of life (QOL) varies with culture and socioeconomic milieu. Identification of predictors for QOL enables comprehensive and effective care.
The objective of this study was to investigate the role of stigma, demographic, socioeconomic, and clinical factors in QOL among PWE.
In this prospective observational study, 170 PWE answered QOL in epilepsy-31 (QOLIE-31) and stigma questionnaire. Internal consistency of instruments was evaluated by Cronbach's alpha and reproducibility by intracorrelation coefficient (ICC). Descriptive statistics were calculated, and predictors were identified by regression analysis.
Mean age of the PWE was 34.39 ± 11.49. Cronbach's alpha and ICC of the QOLIE-31 were 0.946 and 0.974 and stigma scale was 0.903 and 0.954, respectively. Mean total QOL was 60.29 ± 14.12. Highest and lowest scores of subscales of QOL were observed in medication effects and social functioning. Mean stigma score of PWE was 22.21 ± 14.64. Majority of PWE had mild stigma (75%) followed by moderate (22%) and high stigma (1%). Stigma score correlated with total and subscales of QOL ( < 0.01). Statistically significant decrease in scores of total and subscales of QOL was observed in high and moderate stigma when compared to mild stigma ( < 0.01). Stigma (standardized beta coefficient = -0.652, < 0.00) and polytherapy (standardized beta coefficient = -0.180, < 0.02) were found to be the significant predictors of QOL. Significant decrease in total and subscale scores of QOL was observed in PWE under polytherapy when compared to monotherapy and also in seizure frequent against seizure-free PWE ( < 0.01).
Besides control of seizures, encouragement of monotherapy and destigmatization campaigns may improve the QOL of PWE.
除了不可预测的癫痫发作及随之而来的伤害外,癫痫患者(PWE)还面临心理社会适应问题。生活质量(QOL)因文化和社会经济环境而异。确定生活质量的预测因素有助于提供全面有效的护理。
本研究的目的是调查耻辱感、人口统计学、社会经济和临床因素在癫痫患者生活质量中的作用。
在这项前瞻性观察研究中,170名癫痫患者回答了癫痫生活质量-31量表(QOLIE-31)和耻辱感问卷。通过Cronbach's α评估工具的内部一致性,通过组内相关系数(ICC)评估可重复性。计算描述性统计量,并通过回归分析确定预测因素。
癫痫患者的平均年龄为34.39±11.49岁。QOLIE-31量表的Cronbach's α和ICC分别为0.946和0.974,耻辱感量表的Cronbach's α和ICC分别为0.903和0.954。生活质量总分平均为60.29±14.12。生活质量子量表得分最高和最低的分别是药物疗效和社会功能。癫痫患者的耻辱感平均得分为22.21±14.64。大多数癫痫患者有轻度耻辱感(75%),其次是中度(22%)和重度(1%)。耻辱感得分与生活质量总分及各子量表得分相关(P<0.01)。与轻度耻辱感相比,中度和重度耻辱感患者的生活质量总分及各子量表得分在统计学上显著降低(P<0.01)。发现耻辱感(标准化β系数=-0.652,P<0.00)和联合治疗(标准化β系数=-0.180,P<0.02)是生活质量的重要预测因素。与单一疗法相比,接受联合治疗的癫痫患者以及癫痫频繁发作的患者与无癫痫发作的患者相比,生活质量总分及各子量表得分显著降低(P<0.01)。
除了控制癫痫发作外,鼓励单一疗法和开展消除耻辱感运动可能会改善癫痫患者的生活质量。