Even patients with the mildest symptoms of myasthenia gravis said they experienced negative quality-of-life (QOL) effects from the disease.
People with myasthenia gravis (MG) experience a significant disease-related burden in their daily lives, and the effects on their quality of life are closely tied to their disease class, according to the findings from a new study published in BMJ Open.
MG is a rare autoimmune disease whose physical manifestations can range from ocular symptoms like drooping eyelids and double vision (class I) to severe weakness in the limbs and respiratory muscles, explained the authors. In the most severe cases (class V), patients require assistance breathing, they said.
Previous research shows that the disease can have a significant impact on patients’ health-related quality of life (HRQOL), and the authors said even patients with mild physical symptoms often report mental health consequences, such as anxiety and depression. They said there is a need for better data examining how MG affects HRQOL in a large diverse population of people with the disease.
“HRQOL data can help to improve clinical patient management and are an integral part of health technology assessments to inform public decision-making,” they wrote.
In this published study, they outline the findings of a smartphone app–based study in which they asked more than 800 people with MG to self-report information about their symptoms and the ways MG has affected their lives. The 834 people who answered at least 1 question for the survey lived in the United States, Canada, Japan, Germany, the United Kingdom, Italy, and Spain. Most of the respondents (70%) were women, the participants had a median age of 47, and most were from Italy (43%) or the United States (24%).
In terms of disease severity, the most common MG classes of participants were class III (38.1%) and class II (31.0%). Just 1.6% of respondents had class V disease, the most severe, and so the investigators were unable to report statistically significant HRQOL results for those patients.
The most frequent domains of HRQOL that participants said were affected by their disease were usual activities, anxiety and depression, tiredness, breathing, and vision. Data showed the disease’s impact increased in conjunction with its severity. The mean total MG-Activities of Daily Living scores of patients ranged from 2.7 for patients with class I MG to 8.4 for patients with class IV disease, with higher scores indicating a greater disease burden.
About one-third of patients said they had problems performing their usual daily activities, and a quarter of patients said they experienced moderate to severe symptoms of anxiety and depression. About one-eighth of patients said they experienced breathing difficulties.
The study investigators said many of their findings were in line with previous research into the effects of MG; however, they noted that at least one previous study suggested class I MG did not have a quality-of-life effect, whereas in the current study, even the mildest form of the disease impacted quality of life.
The authors concluded that their patient-reported data show “a consistent and large impact of MG on HRQoL aspects such as usual activities, depression, tiredness, breathing, and vision,” even when patients received the best supportive care.
They said the data show a diagnosis of MG results in a “considerable” impact on patients’ lives, and one which increases with disease severity.
Dewilde S, Philips G, Paci S, et al. Patient-reported burden of myasthenia gravis: baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG. BMJ Open. Published online January 31, 2023. doi:10.1136/bmjopen-2022-066445