Abstract
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.MethodsWe 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.ResultsMean 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.ConclusionsRemission 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.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-015-0298-1) contains supplementary material, which is available to authorized users.
Highlights
Myasthenia gravis (MG) is a heterogeneous neuromuscular autoimmune disease
MG patients scored similar than MS patients and higher than Parkinson patients and Rheumatoid Arthritis patients. In this population-based double cohort study, we report a reduced self-perceived health related quality of life (HRQOL) in Myasthenia Gravis patients with bulbar and generalized symptoms, while patients in remission, those with OMG and those with residual symptoms after generalized disease scored similar to healthy controls
The reduced quality of life was determined by lowered physical capacities, but psychological wellbeing was affected in roughly half of the patients as well
Summary
The symptoms range from mild ocular symptoms to severe generalized muscle weakness and disability. In the most severe cases the respiratory muscles are affected, causing problems breathing, a socalled “myasthenic crisis”. These studies show that the disease has an extensive impact on physical, psychological and social wellbeing: the more severe muscle symptoms and disability, the lower the physical components of the outcome [1, 2, 7,8,9,10]. There are few larger studies and the impact of clinical subgroups based on antibodies, age of onset, Boldingh et al Health and Quality of Life Outcomes (2015) 13:115
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