Opinion
Video
Impact of Generalized Myasthenia Gravis (gMG) on Quality of Life
Author(s):
A physician expert discusses the socioeconomic burden of gMG on both the patient and the caregiver.
James F. Howard Jr, MD: So the burden of myasthenia gravis, generalized myasthenia gravis [gMG], is substantial in our patient population from a number of different [angles]. Clearly, it’s a disease that’s fluctuating to some degree, moment by moment. But clearly, day by day, patients report good days and bad days, and this fluctuation is very unpredictable and therefore impacts the individual’s ability to plan, whether it be socially…, business wise…, caring for family, etc. This fluctuation also predisposes the individual to frequent visits to the clinician, sometimes to the emergency [department]. And if the weakness is severe enough, [this] results in hospitalizations, and it’s not unheard-of for individuals to have 5 or 6 hospitalizations within a year’s time because of activation of their disease as a result of this fluctuation. As a result of the unpredictability of the disease, we see higher incidences of depression, of anxiety. We see a decline in social functioning with these [patients]. We see frustration. And all of this leads to unrest, if you will, within the family unit because of the impact it’s having. There’s no question that there’s a substantial impact on unemployment. And we have figures from various parts of the world. For instance, in Japan, 27% of [individuals with myasthenia gravis] are not employed and another 36% experience a significant decrease in income that affects their ability to care for the family. In Denmark, 47% of [individuals with myasthenia gravis] face long-term income losses because of [being] out of work. In Thailand, 58% of patients are unemployed. In Japan, it’s almost 40% who are unemployed, and so forth. And so, a huge socioeconomic impact of this disease. And that’s not to say anything about the caregiver, the spouse, the significant other who must take time off if they’re working to care for the individual, to take them to appointments, etc, to be with them in the hospital. And [these are] data that we don’t have good handles on, and payers [and] health administrators don’t have an understanding of the significance of what it costs to take care of a [patient with myasthenia gravis or] what the socioeconomic…costs [are]. To say nothing of quality of life. All of these things downregulate one’s quality of life, one’s happiness, etc, which is critically important in a chronic autoimmune disorder.
Transcript is AI-generated and edited for clarity and readability.
