Baker G A, Smith D F, Dewey M, Jacoby A, Chadwick D W
University Department of Neurosciences, Walton Hospital, Liverpool, UK.
Epilepsy Res. 1993 Sep;16(1):65-81. doi: 10.1016/0920-1211(93)90041-5.
Patients with refractory epilepsy, despite no fixed physical deficit, are often socially and psychologically handicapped. Currently available outcome measures for epilepsy do not adequately address these manifestations or their influence on well-being and quality of life. A patient-based health-related quality of life (HRQL) model for epilepsy including physical, social and psychological domains was constructed. It contains previously validated measures of anxiety, depression, happiness, overall mood, self-esteem, mastery, social satisfaction and general health and a specifically designed seizure severity scale with patient- and carer-based components. The psychometric properties of this model were evaluated in the context of the trial of a potential new antiepileptic drug. All the scales, except the Social Problems Questionnaire, have acceptable internal consistency (alpha 0.69-0.85) in this patient population. Construct validity is indicated by the ability of the scales to differentiate between groups of patients predicted to have different levels of psychosocial function. Treatment effects were detected by the patient (P = 0.017) and carers (P = 0.035) subscales of the seizure severity scale, the happiness (P = 0.003) and the mastery (P = 0.003) scales. Despite obvious deficiencies preliminary analyses are encouraging. This model provides a framework for investigating the complex interaction between the physical, social and psychological manifestations of epilepsy. The model has potential as an outcome measure for use in longitudinal studies and as a measure of disability for use in cross-sectional studies designed to compare quality of life in different populations of people with epilepsy.
难治性癫痫患者尽管没有固定的身体缺陷，但往往在社交和心理方面存在障碍。目前可用的癫痫结局指标并不能充分解决这些表现或它们对幸福感和生活质量的影响。构建了一个基于患者的癫痫健康相关生活质量（HRQL）模型，包括身体、社会和心理领域。它包含先前验证过的焦虑、抑郁、幸福、总体情绪、自尊、掌控感、社会满意度和一般健康状况的测量指标，以及一个专门设计的癫痫发作严重程度量表，该量表包含基于患者和照顾者的组成部分。在一种潜在的新型抗癫痫药物试验的背景下评估了该模型的心理测量特性。在该患者群体中，除社会问题问卷外，所有量表都具有可接受的内部一致性（α系数为0.69 - 0.85）。量表区分预计具有不同心理社会功能水平的患者组的能力表明了结构效度。通过癫痫发作严重程度量表的患者（P = 0.017）和照顾者（P = 0.035）子量表、幸福量表（P = 0.003）和掌控感量表（P = 0.003）检测到了治疗效果。尽管存在明显不足，但初步分析令人鼓舞。该模型为研究癫痫的身体、社会和心理表现之间的复杂相互作用提供了一个框架。该模型有潜力作为纵向研究中的结局指标，以及作为横断面研究中的残疾测量指标，用于比较不同癫痫患者群体的生活质量。
