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成人癫痫患者生活质量的决定因素:一项来自德国的多中心横断面研究。

Determinants of quality of life in adults with epilepsy: a multicenter, cross-sectional study from Germany.

作者信息

Siebenbrodt Kai, Willems Laurent M, von Podewils Felix, Mross Peter Michael, Strüber Michael, Langenbruch Lisa, Bierhansl Laura, Gorny Iris, Schulz Juliane, Gaida Bernadette, Conradi Nadine, Süß Annika, Rosenow Felix, Strzelczyk Adam

机构信息

Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, Goethe-University and University Hospital Frankfurt, Frankfurt am Main, Germany.

LOEWE Center for Personalized Translational Epilepsy Research (CEPTeR), Goethe-University Frankfurt, Frankfurt am Main, Germany.

出版信息

Neurol Res Pract. 2023 Aug 3;5(1):41. doi: 10.1186/s42466-023-00265-5.

Abstract

BACKGROUND

Assessment of quality of life (QoL) has become an important indicator for chronic neurological diseases. While these conditions often limit personal independence and autonomy, they are also associated with treatment-related problems and reduced life expectancy. Epilepsy has a tremendous impact on the QoL of patients and their families, which is often underestimated by practitioners. The aim of this work was to identify relevant factors affecting QoL in adults with epilepsy.

METHODS

This cross-sectional, multicenter study was conducted at four specialized epilepsy centers in Germany. Patients diagnosed with epilepsy completed a standardized questionnaire focusing on QoL and aspects of healthcare in epilepsy. Univariate regression analyses and pairwise comparisons were performed to identify variables of decreased QoL represented by the overall Quality of Life in Epilepsy Inventory (QOLIE-31) score. The variables were then considered in a multivariate regression analysis after multicollinearity analysis.

RESULTS

Complete datasets for the QOLIE-31 were available for 476 patients (279 [58.6%] female, 197 [41.4%] male, mean age 40.3 years [range 18-83 years]). Multivariate regression analysis revealed significant associations between low QoL and a high score on the Liverpool Adverse Events Profile (LAEP; beta=-0.28, p < 0.001), Hospital Anxiety and Depression Scale - depression subscale (HADS-D; beta=-0.27, p < 0.001), Neurological Disorders Depression Inventory in Epilepsy (NDDI-E; beta=-0.19, p < 0.001), revised Epilepsy Stigma Scale (beta=-0.09, p = 0.027), or Seizure Worry Scale (beta=-0.18, p < 0.001) and high seizure frequency (beta = 0.14, p < 0.001).

CONCLUSION

Epilepsy patients had reduced QoL, with a variety of associated factors. In addition to disease severity, as measured by seizure frequency, the patient's tolerability of anti-seizure medications and the presence of depression, stigma, and worry about new seizures were strongly associated with poor QoL. Diagnosed comorbid depression was underrepresented in the cohort; therefore, therapeutic decisions should always consider individual psychobehavioral and disease-specific aspects. Signs of drug-related adverse events, depression, fear, or stigmatization should be actively sought to ensure that patients receive personalized and optimized treatment.

TRIAL REGISTRATION

German Clinical Trials Register (DRKS00022024; Universal Trial Number: U1111-1252-5331).

摘要

背景

生活质量(QoL)评估已成为慢性神经系统疾病的一项重要指标。虽然这些疾病常常限制个人独立性和自主性,但它们也与治疗相关问题及预期寿命缩短有关。癫痫对患者及其家庭的生活质量有巨大影响,而这一点常常被从业者低估。本研究的目的是确定影响成年癫痫患者生活质量的相关因素。

方法

这项横断面、多中心研究在德国的四个专业癫痫中心进行。被诊断为癫痫的患者完成了一份标准化问卷,该问卷聚焦于生活质量和癫痫医疗保健的各个方面。进行单变量回归分析和成对比较,以确定由癫痫生活质量综合量表(QOLIE - 31)总分所代表的生活质量下降的变量。在进行多重共线性分析后,将这些变量纳入多变量回归分析。

结果

476例患者(279例[58.6%]为女性,197例[41.4%]为男性,平均年龄40.3岁[范围18 - 83岁])有完整的QOLIE - 31数据集。多变量回归分析显示,生活质量低与利物浦不良事件量表(LAEP;β = -0.28,p < 0.001)、医院焦虑抑郁量表 - 抑郁分量表(HADS - D;β = -0.27,p < 0.001)、癫痫神经障碍抑郁量表(NDDI - E;β = -0.19,p < 0.001)、修订的癫痫耻辱感量表(β = -0.09,p = 0.027)或癫痫发作担忧量表(β = -0.18)得分高以及癫痫发作频率高(β = 0.14,p < 0.001)之间存在显著关联。

结论

癫痫患者的生活质量降低,且有多种相关因素。除了以癫痫发作频率衡量的疾病严重程度外,患者对抗癫痫药物的耐受性以及抑郁、耻辱感和对新发作的担忧的存在与生活质量差密切相关。队列中已诊断的共病性抑郁比例较低;因此,治疗决策应始终考虑个体心理行为和疾病特异性方面。应积极寻找药物相关不良事件、抑郁、恐惧或耻辱感的迹象,以确保患者接受个性化和优化的治疗。

试验注册

德国临床试验注册中心(DRKS00022024;通用试验编号:U1111 - 1252 - 五三三)

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7e74/10398956/bb46607e6c14/42466_2023_265_Fig1_HTML.jpg

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