Even patients with myasthenia gravis (MG) who have relatively low disease activity can have a considerable decrease in quality of life, according to a study recently published in the Journal of Neurology.
Muscule fatigue and its fluctuating nature can prevent people with MG from carrying out many activities of daily living. Previous studies have indicated that increased disease activity in MG can result in patients reporting a lower quality of life.
To better understand the impact of disease activity on quality of life, researchers reviewed data from the Swedish Myasthenia Gravis registry, which contains extensive information on patients diagnosed with the disease. The research team was primarily interested in how patients rated their quality of life, their disease activity status, and whether the two were linked.
Importantly, the data contained scores on the 3-Level version of the EuroQol 5-Dimension (EQ-5D-3L), which assesses quality of life based on different health domains. Patients gave feedback on their quality of life via the EQ-5D-3L, as well as the 15-item Myasthenia Gravis–Quality-of-Life (MG-QoL-15) scale and the Patient Acceptable Symptom State (PASS), which is a single question assessing if patients believed they had an acceptable disease state or otherwise. In addition, researchers utilized data from a study assessing the efficacy of rituximab in treating MG (called the RINOMAX study) to increase their analytical broadband.
Read more about myasthenia gravis testing and diagnosis
Across all five domains measured in the EQ-5D, patients with MG scored more poorly compared with the reference population, particularly in terms of “usual activities” and “self-care.” Patients also scored more poorly compared to the EQ-5D scores previously found for several other conditions, including colorectal cancer and brain tumors.
“We speculate that the fluctuating nature of MG causes unpredictability which affects daily life and social interactions that may contribute to the reduced QoL of people with MG,” the study’s authors noted.
The researchers found that there was a stronger correlation between poorer EQ-5D scores and patient-reported scores compared with physician-evaluated scores. Further analysis showed that patients with increased disease activity experienced a poorer quality of life.
With regards to how different muscle groups affected perceived quality of life, researchers found that the limb and respiratory muscle groups had the most significant impact on EQ-5D scores, with even a single point change being significant enough to alter results.
“Our findings indicate an unmet medical need at low-to-moderate disease activity, in turn raising the question if also patients with milder disease activity scores should be included in clinical trials to develop more effective treatment algorithms,” the authors of the study concluded.
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