Boldingh M I, Dekker L, Maniaol A H, Brunborg C, Lipka A F, Niks E H, Verschuuren J J G M, Tallaksen C M E
Department of Neurology, Oslo University Hospital, Ullevål and Rikshospitalet, Ullevål, Pb. 4950 Nydalen, 0424, Oslo, Norway.
Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
Health Qual Life Outcomes. 2015 Aug 1;13:115. doi: 10.1186/s12955-015-0298-1.
Current available therapies control Myasthenia gravis (MG) reasonably well, but Health Related Quality of life (HRQOL) remains lower than expected. The aim was provide insights in how HRQOL in MG stands across borders and time, compare the scores to general population controls and other chronic disorders and assess the impact of potential predictors for quality of life such as a) clinical characteristics b) antibodies c) thymoma and d) treatment in a population-based cohort.
We designed a population-based cross-sectional study including 858 patients, 373 from Norway and 485 from the Netherlands. The Short Form Health Survey 36 (SF-36) and a cross-cultural validated questionnaire were used. Data were in addition compared to the general population, other chronic diseases and previous studies.
Mean physical composite score was 59.4 and mental composite score 69.0 with no differences between the countries. The mean HRQOL score was lower in patients with bulbar and generalized symptoms (p < 0.001) compared to sex and age adjusted healthy controls, but not in patients with ocular symptoms or patients in remission. Multivariate analysis revealed that female gender, generalized symptoms and use of secondary immunosuppressive drugs at the time of testing were risk factors for reduced HRQOL.
Remission and absence of generalized symptoms were favorable factors for HRQOL in MG patients. Historically, the HRQOL levels have not changed since 2001 and no new clinical predictors could be detected in this exhaustive population-based study. Further studies should explore the impact of non clinical factors like ethnic variations, socio-economic and hormonal factors on HRQOL.
目前可用的疗法能较好地控制重症肌无力（MG），但健康相关生活质量（HRQOL）仍低于预期。目的是深入了解MG患者的HRQOL在不同国家和时间的情况，将得分与普通人群对照及其他慢性疾病进行比较，并评估生活质量潜在预测因素的影响，如a）临床特征b）抗体c）胸腺瘤和d）基于人群队列中的治疗情况。
我们设计了一项基于人群的横断面研究，纳入858例患者，其中373例来自挪威，485例来自荷兰。使用了简明健康调查问卷36（SF - 36）和经过跨文化验证的问卷。此外，还将数据与普通人群、其他慢性疾病及先前研究进行了比较。
身体综合平均得分是59.4，精神综合平均得分是69.0，两国之间无差异。与按性别和年龄调整的健康对照相比，延髓和全身症状患者的HRQOL平均得分较低（p < 0.001），但眼部症状患者或缓解期患者并非如此。多变量分析显示，女性、全身症状以及检测时使用二线免疫抑制药物是HRQOL降低的危险因素。
缓解以及无全身症状是MG患者HRQOL的有利因素。从历史上看，自2001年以来HRQOL水平没有变化，并且在这项详尽的基于人群的研究中未发现新的临床预测因素。进一步的研究应探讨种族差异、社会经济和激素因素等非临床因素对HRQOL的影响。
