People with refractory myasthenia gravis — those whose symptoms persist after treatment — are more likely to miss working hours and to be unemployed than those whose disease responds to treatment and are nonrefractory, a study found.
The study, “Employment in refractory myasthenia gravis: A Myasthenia Gravis Foundation of America Registry analysis,” was published in Muscle & Nerve.
Myasthenia gravis (MG) is an autoimmune disease caused by the abnormal production of antibodies against proteins essential for muscle contraction. It often is associated with a series of debilitating symptoms, including muscle weakness, extreme fatigue, and sleep and mood disturbances.
“An adverse impact of MG on employment has been reported in various studies. This may be apparent as reduced participation in the labor market, increased sick leave, and higher levels of patient‐reported hardship in the workplace,” the researchers said, citing reports on MG patients of working age in Germany, Australia and Denmark.
“[A]lthough there is some evidence that factors such as increased disease severity or a greater treatment burden exacerbate employment problems in MG, there is a dearth of research pertaining specifically to refractory disease,” they added.
A researcher formerly with Alexion Pharmaceuticals, in collaboration with investigators from the University of Alabama at Birmingham, investigated the impact of refractory (difficult to treat) and nonrefractory MG on the employment status and work absences in the U.S. (Alexion developed and markets Soliris [eculizumab], approved to treat adults with generalized myasthenia gravis who are anti-acetylcholine receptor [AchR] antibody positive.)
The study included data on 825 adults with MG, including 76 (9.2%; mean age of 48) with refractory and 749 (90.8%; mean age of 49) with nonrefractory disease.
All patients had been diagnosed with MG more than two years previously, and had enrolled in the Myasthenia Gravis Foundation of America Patient Registry between July 2013 and February 2018.
The percentage of people previously (six months prior to study’s start) working full time was higher among those with nonrefractory MG than among those with refractory disease (45.7% versus 26.7%).
Likewise, the percentage currently employed in a full-time job was higher among those with nonrefractory MG than among those with refractory disease (44.5% versus 23.7%).
“Relative to those with refractory MG, participants with nonrefractory MG were more likely to have a full‐time job rather than a part‐time job, or a part‐time job rather than no job,” the researchers said.
Findings also revealed that people with refractory MG were nearly three-times more likely to miss working hours than those with nonrefractory disease. But previously employed refractory patients were not more likely to be absent from work compared to those with nonrefractory MG.
Researchers also found that other factors, including age, gender and education, also had a direct impact on patients’ employment status.
“Males were more likely than females to be employed and, in general, younger individuals were more likely to be employed than those aged 55 to 64 years. Similarly, relative to those who had not graduated from high school, participants with bachelor or postgraduate degrees were more likely to have a full‐ or part‐time job,” the investigators said.
“[O]ur study has shown that individuals with refractory MG were more likely to work fewer hours per week or to not have a job than those with nonrefractory disease (…) Given that participation in the labor market influences an individual’s financial circumstances and HRQoL [health-related quality of life], these findings reaffirm the considerable disease burden experienced by patients with refractory MG,” they concluded.