Department of Biostatistics, Washington University, St. Louis, MO, USA.
Mellen Center for Multiple Sclerosis, Cleveland Clinic Foundation, Cleveland, OH, USA.
Mult Scler Relat Disord. 2019 Jun;31:165-172. doi: 10.1016/j.msard.2019.04.014. Epub 2019 Apr 13.
Fatigue is an important aspect of health-related quality of life and a commonly reported symptom by many persons with multiple sclerosis (MS). There are multiple validated instruments available to assess fatigue in MS with differing benefits for each instrument.
We aimed to assess the relationship between the PROMIS Fatigue instrument and the Fatigue Performance Scale (FPS) in the NARCOMS registry. Additionally, we aimed to examine the association of fatigue with social participation.
The NARCOMS registry is a voluntary, self-report registry, which has enrolled participants with MS who provide semi-annual updates regarding their MS. The Fall 2016 semi-annual survey included the PROMIS Fatigue and Ability to Participate in Social Roles and Activities questionnaires, in addition to demographic and clinical information. We examined the association between instruments using Spearman correlations. Linear and ordinal regression models were used to evaluate associations with fatigue using the PROMIS Fatigue and the FPS.
Of the 7,006 Fall 2016 respondents, 6,883 (98.2%) completed the PROMIS instruments. Respondents were mostly female (79.5%) and Caucasian (87.4%), had a mean (SD) age of 59.9 (10.2) years and moderate disability level (median Patient Determined Disease Steps [PDDS] 4 [early cane]). The mean (SD) PROMIS Fatigue T-score was 56.8 (11.0) and median (25th, 75th) FPS was 3 [moderate] (1 [minimal], 4 [severe]). Fatigue measures were strongly correlated (r = 0.83, 95% CI: [0.827, 0.842]). Factors consistently associated with fatigue were PDDS level, depression and pain functionality scales, and symptoms worsening. The ability to participate in social roles and activities was strongly associated with fatigue and had an independent effect on fatigue after adjusting for PDDS, depression and pain levels.
A high proportion of respondents experience some level of fatigue and it is independently associated with reduced social participation.
疲劳是健康相关生活质量的一个重要方面，也是许多多发性硬化症（MS）患者常报告的症状。有多种经过验证的工具可用于评估 MS 中的疲劳，每种工具都有不同的优势。
我们旨在评估 NARCOMS 注册中心中 PROMIS 疲劳量表与疲劳表现量表（FPS）之间的关系。此外，我们旨在研究疲劳与社会参与之间的关联。
NARCOMS 注册中心是一个自愿的、自我报告的注册中心，其中包括提供有关他们的 MS 的半年度更新的 MS 参与者。2016 年秋季的半年度调查包括 PROMIS 疲劳和参与社会角色和活动的能力问卷，以及人口统计学和临床信息。我们使用 Spearman 相关性检查了仪器之间的相关性。使用线性和有序回归模型，使用 PROMIS 疲劳和 FPS 评估与疲劳相关的关联。
在 2016 年秋季的 7006 名受访者中，有 6883 名（98.2%）完成了 PROMIS 工具。受访者主要为女性（79.5%）和白种人（87.4%），平均（标准差）年龄为 59.9（10.2）岁，残疾程度中等（中位数患者确定的疾病步骤 [PDDS] 4 [早期手杖]）。PROMIS 疲劳 T 评分的平均值（标准差）为 56.8（11.0），中位数（25%，75%）FPS 为 3 [中度]（1 [轻度]，4 [重度]）。疲劳指标呈强相关性（r=0.83，95%CI：[0.827，0.842]）。与疲劳一致相关的因素是 PDDS 水平、抑郁和疼痛功能量表以及症状恶化。参与社会角色和活动的能力与疲劳密切相关，在调整 PDDS、抑郁和疼痛水平后，对疲劳有独立影响。
很大一部分受访者经历了某种程度的疲劳，并且与社会参与度降低有关。
