Department of Neurology, University Hospital Frankfurt, Frankfurt am Main, Germany.
Department of Neurology, University Hospital Frankfurt, Frankfurt am Main, Germany.
Mult Scler Relat Disord. 2021 Feb;48:102711. doi: 10.1016/j.msard.2020.102711. Epub 2020 Dec 28.
Determinants of quality of life (QoL) in demyelinating disorders have been investigated predominantly for multiple sclerosis, especially with regard to "soft clinical signs" such as psychiatric distress. In this exploratory study, we aimed to identify common determinants of QoL for both central and peripheral demyelination in the understudied disease entities of neuromyelitis optica spectrum disorder (NMOSD) and chronic autoimmune demyelinating polyneuropathy (CADP).
20 NMOSD and 16 CADP patients were evaluated for physical disability (EDSS and INCAT ODSS), cognitive dysfunction (neuropsychological test battery), psychiatric distress (SCL-90-R), depression (BDI), fatigue (FSMC) and quality of life (EQ-5D-3 L). A linear regression with QoL as a dependent variable and clinical parameters and demographic covariates as independent variables was computed. Additionally, a multivariate analysis of variance was computed to investigate whether NMOSD and CADP differed with regard to QoL and clinical parameters.
Physical disability and psychiatric distress affected QoL in both NMOSD and CADP with a stronger effect for psychiatric distress in comparison to physical disability, as indicated by the higher standardized beta coefficient for psychiatric distress (b = -0.540; p = 0.002 vs. b = -0.614; p = 0.028). NMOSD reported higher subjective well-being than CADP patients (F = 6.845, p = 0.015) while having similar physical disability, cognitive dysfunction, psychiatric distress, depression and fatigue and after having accounted for the influence of age, gender, education and disease duration.
Our findings suggest that physical disability and psychiatric distress above all clinical factors affect QoL in patients with NMOSD and CADP. Addressing adequately this aspect in demyelinating diseases would contribute to a better QoL in these patients. Furthermore, higher subjective well-being scores for NMOSD than CADP might be attributable to the distinct immunomodulatory therapy regimens and course (relapse-driven vs. chronic) of the two diseases.
生活质量（QoL）的决定因素在脱髓鞘疾病中得到了广泛研究，主要针对多发性硬化症，特别是针对“软性临床体征”，如精神困扰。在这项探索性研究中，我们旨在为研究较少的视神经脊髓炎谱系疾病（NMOSD）和慢性自身免疫性脱髓鞘性多发性神经病（CADP）这两种疾病实体中的中枢和周围脱髓鞘确定常见的 QoL 决定因素。
对 20 名 NMOSD 和 16 名 CADP 患者进行了身体残疾（EDSS 和 INCAT ODSS）、认知功能障碍（神经心理学测试组合）、精神困扰（SCL-90-R）、抑郁（BDI）、疲劳（FSMC）和生活质量（EQ-5D-3L）评估。使用 QoL 作为因变量，临床参数和人口统计学协变量作为自变量进行线性回归。此外，还进行了多元方差分析，以研究 NMOSD 和 CADP 在 QoL 和临床参数方面是否存在差异。
身体残疾和精神困扰都会影响 NMOSD 和 CADP 患者的 QoL，与身体残疾相比，精神困扰的影响更大，这表明精神困扰的标准化β系数更高（b=-0.540；p=0.002 与 b=-0.614；p=0.028）。NMOSD 患者的主观幸福感高于 CADP 患者（F=6.845，p=0.015），而他们的身体残疾、认知功能障碍、精神困扰、抑郁和疲劳情况相似，且在考虑了年龄、性别、教育程度和疾病持续时间的影响后。
我们的研究结果表明，在 NMOSD 和 CADP 患者中，身体残疾和精神困扰等临床因素对 QoL 的影响最大。在脱髓鞘疾病中充分解决这一方面问题将有助于提高这些患者的生活质量。此外，NMOSD 的主观幸福感评分高于 CADP，可能归因于这两种疾病不同的免疫调节治疗方案和病程（复发驱动与慢性）。
