Suurmeijer T P, Reuvekamp M F, Aldenkamp B P
Department of Sociology/Interuniversity Centre for Social Science Theory and Methodology (ICS), University of Groningen, Groningen, The Netherlands.
Epilepsia. 2001 Sep;42(9):1160-8. doi: 10.1046/j.1528-1157.2001.37000.x.
Part of our research intended to explain "Quality of Life" (QoL) differences between people with epilepsy. To this end, a series of already existing generic and disease-specific health status measures were used. In this study, they were considered as determinants of people's QoL, whereas QoL itself was conceived as a general "value judgment" about one's life.
From the records of four outpatient clinics, 210 persons with epilepsy were randomly selected. During their visit to the outpatient clinic, they completed a questionnaire assessing, among other things, health perceptions and social and psychological functioning. Additional information about their medical and psychosocial status was gathered from the patient files. Data were analysed by using a hierarchical regression analysis.
In decreasing order of importance, "psychological distress," "loneliness," "adjustment and coping," and "stigma perception" appeared to contribute most significantly to the outcome QoL as judged by the patients themselves, regardless of their physical status. In the final model, none of the clinical variables (onset, seizure frequency, side effects of antiepileptic drugs) contributed significantly anymore to the patients' "quality-of-life judgement." Apparently the effect of other variables such as seizure frequency and health perceptions, medication and side effects, life fulfillment, self-esteem, and mastery is mediated by these variables.
Because all of the variance in QoL of the patients was explained by the psychosocial variables included in this study, health professionals should be aware of the significance of the psychosocial functioning of the patients and the role it plays in the achievement of a good QoL. Both informal and professional support may be an adjunct to conventional treatment. In future research, this issue should be given high priority.
我们研究的一部分旨在解释癫痫患者之间的“生活质量”（QoL）差异。为此，使用了一系列现有的通用和特定疾病的健康状况测量方法。在本研究中，这些方法被视为人们生活质量的决定因素，而生活质量本身被视为对一个人生活的总体“价值判断”。
从四个门诊诊所的记录中随机选取210名癫痫患者。在他们前往门诊就诊期间，他们完成了一份问卷，该问卷除其他事项外，还评估了健康认知以及社会和心理功能。从患者档案中收集了有关他们医疗和心理社会状况的其他信息。使用分层回归分析对数据进行分析。
按重要性降序排列，“心理困扰”、“孤独感”、“适应与应对”以及“耻辱感认知”似乎对患者自身判断的生活质量结果贡献最为显著，无论他们的身体状况如何。在最终模型中，没有一个临床变量（发病、癫痫发作频率、抗癫痫药物的副作用）对患者的“生活质量判断”有显著贡献。显然，癫痫发作频率和健康认知、药物治疗和副作用、生活满意度、自尊和掌控感等其他变量的影响是由这些变量介导的。
由于本研究中纳入的心理社会变量解释了患者生活质量的所有差异，医疗专业人员应意识到患者心理社会功能的重要性及其在实现良好生活质量中所起的作用。非正式和专业支持都可能是传统治疗的辅助手段。在未来的研究中，这个问题应被高度重视。
