An up-date on health-related quality of life in myasthenia gravis -results from population based cohorts

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.

Long‐term follow‐up, quality of life, and survival of patients with Lambert‐Eaton myasthenic syndrome

“…27,[38][39][40] Our study showed female sex, generalized disease, and lack of employment to be associated with reduced HRQOL, comparable to results in 2 large MG studies. 27,41 In contrast to the pattern of muscle weakness, the mRS score as a marker for disease severity did not independently predict HRQOL. This could be related to the limited number of patients, limited overall variation in mRS scores, or confounding by also including the pattern of weakness in the model.…”

“…Nonresponders were reminded twice. Control cohorts were a population-based cohort of 464 patients with myasthenia gravis (MG) in the Netherlands collected at the same time 27 and published normative data in the Dutch general population. 28 The SF-36 is organized into 8 domains, with a score ranging from 0 (worst HRQOL) to 100 (best HRQOL).…”

Activity limitations in myasthenia gravis and relation to clinical variables

“…We also found that men had a significantly higher ACTIVLIM. This finding is in agreement with several large international studies in which a higher health‐related quality of life (HRQoL) was found in men with MG . Furthermore we found that patients with an additional AID had significantly more limitations in ADL.…”

Improvement of quality of life after therapeutic plasma exchange in patients with myasthenic crisis

“…No statistically significant differences between HRQOL at patients with diagnosed myasthenia versus general population were found. Nevertheless, it was observed that certain conditionings, such as female gender, general fatigability or usage of secondary non-steroid immunosuppressive were risk factors to reduced HRQOL [25].…”