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从患者角度看视神经脊髓炎谱系障碍对生活质量的影响:一项观察性横断面研究

Impact of Neuromyelitis Optica Spectrum Disorder on Quality of Life from the Patients' Perspective: An Observational Cross-Sectional Study.

作者信息

Meca-Lallana José E, Gómez-Ballesteros Rocío, Pérez-Miralles Francisco, Forero Lucía, Sepúlveda María, Calles Carmen, Martínez-Ginés María L, González-Suárez Inés, Boyero Sabas, Romero-Pinel Lucía, Sempere Ángel P, Meca-Lallana Virginia, Querol Luis, Costa-Frossard Lucienne, Prefasi Daniel, Maurino Jorge

机构信息

Clinical Neuroimmunology Unit and Multiple Sclerosis CSUR, Department of Neurology, Hospital Universitario "Virgen de la Arrixaca", IMIB-Arrixaca, Murcia, Spain.

Medical Department, Roche Farma, Madrid, Spain.

出版信息

Neurol Ther. 2022 Sep;11(3):1101-1116. doi: 10.1007/s40120-022-00356-6. Epub 2022 May 6.

Abstract

INTRODUCTION

Neuromyelitis optica spectrum disorder (NMOSD) is associated with a reduced health-related quality of life (HRQoL). The purpose of this study was to describe the impact of NMOSD on HRQoL from the patients' perspective and its relationship with other disease factors.

METHODS

An observational, cross-sectional study was conducted at 13 neuroimmunology clinics in Spain. Patients with NMOSD diagnosis (2015 Wingerchuk criteria) were included. The 29-item Multiple Sclerosis Impact Scale (MSIS-29) was used to assess the HRQoL. Different questionnaires were used to measure symptom severity, stigma, mood disorders, pain, fatigue, and difficulties in the workplace. Factors that impact HRQoL were identified by Spearman's correlation and multivariate linear regression analysis.

RESULTS

Seventy-one patients were included (mean age 47.4 ± 14.9 years, 80.3% female, mean time since disease onset 9.9 ± 8.1 years). The median Expanded Disability Status Scale score was 3.0 (1.5-4.5). The mean (± SD) physical and psychological MSIS-29 sub-scores were 41.9 ± 16.8 and 20.9 ± 8.3, respectively. Fatigue and body pain were the most prevalent symptoms. Depressive symptoms were found in 44.3% (n = 31) of patients. The physical MSIS-29 dimension showed the highest correlation with symptom severity (ρ = 0.85584, p < 0.0001), whereas the highest correlations for psychological MSIS-29 dimension were pain, MSIS-29 physical dimension, and depression (ρ = 0.76487, 0.72779, 0.71380; p < 0.0001, respectively). Pain was a predictor of both dimensions of MSIS-29.

CONCLUSION

Fatigue, pain, and depressive symptoms are frequent problems among patients with NMOSD, impacting on their quality of life. Assessment of patient-oriented outcomes may be useful to achieve a holistic approach, allowing early specific interventions.

摘要

引言

视神经脊髓炎谱系障碍(NMOSD)与健康相关生活质量(HRQoL)下降有关。本研究的目的是从患者角度描述NMOSD对HRQoL的影响及其与其他疾病因素的关系。

方法

在西班牙的13家神经免疫学诊所进行了一项观察性横断面研究。纳入符合NMOSD诊断标准(2015年Wingerchuk标准)的患者。使用29项多发性硬化症影响量表(MSIS-29)评估HRQoL。使用不同问卷测量症状严重程度、耻辱感、情绪障碍、疼痛、疲劳及工作场所困难。通过Spearman相关性分析和多元线性回归分析确定影响HRQoL的因素。

结果

纳入71例患者(平均年龄47.4±14.9岁,80.3%为女性,疾病发病平均时间9.9±8.1年)。扩展残疾状态量表评分中位数为3.0(1.5 - 4.5)。MSIS-29身体和心理子量表的平均(±标准差)得分分别为41.9±16.8和20.9±8.3。疲劳和身体疼痛是最常见的症状。44.3%(n = 31)的患者存在抑郁症状。MSIS-29身体维度与症状严重程度的相关性最高(ρ = 0.85584,p < 0.0001),而MSIS-29心理维度与疼痛、MSIS-29身体维度和抑郁的相关性最高(ρ分别为0.76487、0.72779、0.71380;p均< 0.0001)。疼痛是MSIS-29两个维度的预测因素。

结论

疲劳、疼痛和抑郁症状是NMOSD患者常见问题,影响其生活质量。评估以患者为导向的结局可能有助于实现整体治疗方法,从而进行早期针对性干预。

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