Rintala Aki, Häkkinen Arja, Paltamaa Jaana
Faculty of Sport and Health Science, University of Jyväskylä, P.O. Box 35, 40014, Jyväskylä, Finland.
Department of Physical Medicine and Rehabilitation, Jyväskylä Central Hospital, Keskussairaalantie 19, 40620, Jyväskylä, Finland.
Qual Life Res. 2016 Dec;25(12):3119-3127. doi: 10.1007/s11136-016-1347-x. Epub 2016 Jun 30.
The aim of this 10-year follow-up study was to determine changes in health-related quality of life (HRQoL) over time among ambulatory persons with MS (PwMS) at the baseline using generic and disease-specific instruments.
Of 109 independently walking PwMS included in a population-based study in 2002, 77 (70.6 %) were re-assessed in 2012. HRQoL was captured using the 36-Item Short Form Survey Instrument (RAND-36), 15D instrument (15D), and the Multiple Sclerosis Quality of Life-54 (MSQOL-54). Repeated-measures ANOVA and effect size (ES) calculations (Cohen's d) were used in the statistical analysis.
The RAND-36 physical health composite score (p = 0.003, ES = 0.26) and 15D total score (p = 0.012, ES = 0.25) declined from the baseline levels. In particular, lower scores were observed on the RAND-36 scales of physical functioning (p = 0.001, ES = 0.27), pain (p = 0.020, ES = 0.25), and general health perceptions (p = 0.002, ES = 0.36), on the MSQOL-54 scales of physical functioning (p = 0.001, ES = 0.27), pain (p = 0.040, ES = 0.21), sexual functioning (p = 0.003, ES = 0.43), and satisfaction with sexual functioning (p = 0.012, ES = 0.38), and in the 15D dimensions of mobility (p = 0.004, ES = 0.31) and sexual functioning (p ≤ 0.001, ES = 0.59). Improvement was observed on the RAND-36 scale of social functioning (p = 0.049, ES = 0.25). The other composite scores, scales, and dimensions remained unchanged.
The results of this study suggest that ambulatory PwMS at baseline reported reduced HRQoL in physical functioning after a 10-year follow-up period, while emotional well-being was maintained and social functioning improved. The scores in the other HRQoL dimensions and scales remained unchanged. More long-term population-based studies are needed to precisely determine the development of HRQoL among PwMS.
这项为期10年的随访研究旨在使用通用和疾病特异性工具，确定基线时门诊多发性硬化症患者（PwMS）的健康相关生活质量（HRQoL）随时间的变化。
在2002年一项基于人群的研究中纳入的109名能够独立行走的PwMS患者中，77名（70.6%）在2012年接受了重新评估。使用36项简短调查问卷（RAND-36）、15D量表（15D）和多发性硬化症生活质量-54量表（MSQOL-54）来获取HRQoL数据。统计分析采用重复测量方差分析和效应量（ES）计算（科恩d值）。
RAND-36身体健康综合评分（p = 0.003，ES = 0.26）和15D总分（p = 0.012，ES = 0.25）较基线水平下降。具体而言，在RAND-36的身体功能量表（p = 0.001，ES = 0.27）、疼痛量表（p = 0.020，ES = 0.25）和总体健康感知量表（p = 0.002，ES = 0.36）上，在MSQOL-54的身体功能量表（p = 0.001，ES = 0.27）、疼痛量表（p = 0.040，ES = 0.21）、性功能量表（p = 0.003，ES = 0.43）和性功能满意度量表（p = 0.012，ES = 0.38）上，以及在15D的活动能力维度（p = 0.004，ES = 0.31）和性功能维度（p≤0.001，ES = 0.59）上，得分均较低。在RAND-36的社会功能量表上观察到改善（p = 0.049，ES = 0.25）。其他综合评分、量表和维度保持不变。
本研究结果表明，基线时能够行走的PwMS患者在经过10年随访期后，身体功能方面的HRQoL有所下降，而情绪健康得以维持，社会功能得到改善。其他HRQoL维度和量表的得分保持不变。需要更多基于人群的长期研究来精确确定PwMS患者HRQoL的发展情况。
