Patient-validated content of epilepsy-specific quality-of-life measurement
Patient-validated content of epilepsy-specific quality-of-life measurement
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DOI：
10.1111/j.1528-1157.1997.tb01102.x
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发表时间：
1997-02-01
期刊：
影响因子：
5.6
通讯作者：
Schrodt, R
中科院分区：
文献类型：
--
作者：
Gilliam, F;Kuzniecky, R;Schrodt, R
目的：从患者的角度研究癫痫的影响，辅助确定健康相关生活质量(HRQOL)量表的内容效度。方法：对81例中重度癫痫患者按重要性顺序列出他们对反复发作的担忧。为了最大限度地减少调查员的偏见，患者在没有工作人员参与的情况下完成了调查。结果：患者产生了24个不同的领域，分别是驾驶(%)、独立性(54%)、就业(51%)、社交尴尬(36%)、药物依赖(33%)、情绪/压力(32%)和安全性(31%)；在30%的患者中，28%的患者将驾驶列为最重要的问题，其次是工作(21%)、独立性(9%)、安全性(6%)、抗癫痫药物的副作用(5%)、癫痫发作的不可预测性(5%)和癫痫的厌恶(5%)。结论：癫痫对HRQOL的影响从患者的角度来看并不是模糊或模糊的，而是由有限的领域来定义的。独立性是一个重要的问题，目前可用的HRQOL工具可能无法对其进行充分评估。
Purpose: To study the effects of epilepsy from the patients' perspective and assist determination of content validity of health-related quality-of-life (HRQOL) measures.Methods: We asked 81 consecutive patients with moderately severe epilepsy to list in order of importance their concerns of living with recurrent seizures. To minimize investigator bias, patients completed the procedure in a private setting without staff involvement.Results: Twenty-four distinct domains were generated by the patients, Concerns about driving (64%), independence (54%), employment (51%), social embarrassment (36%), medication dependence (33%), mood/stress (32%), and safety (31%) each were listed by >30% of patients, Driving was listed as the most important concern by 28% of patients, followed by employment (21%), independence (9%), safety (6%), antiepileptic-drug side effects (5%), seizure unpredictability (5%), and seizure aversion (5%).Conclusions: The effect of epilepsy on HRQOL is not vague or obscure from the patients' perspective but is defined by a limited number of domains. Independence is an important concern that may not be evaluated adequately by currently avail able HRQOL instruments.