MG Patients Satisfied With Treatment, but Quality of Life Could Be Better, US Survey Shows

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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myasthenia gravis survey

Most people with myasthenia gravis (MG) — more than 70% — are in general “satisfied” with their treatment plan, as well as with their health insurance provider, according to the results of an online survey conducted by Myasthenia Gravis News.

The survey showed fatigue was the most commonly reported symptom among MG patients, as well as the one that had the biggest impact on their daily life.

Importantly, and despite overall treatment satisfaction, the data revealed that almost 46% of respondents with the disease were, to some extent, unsatisfied with their quality of life, indicating that more should be done in terms of symptom management and patient support/care.

This survey was conducted in collaboration with Bionews Insights, the research arm of Bionews Services, which publishes the Myasthenia Gravis News website.

Click on the image to view full-size infographic.

“I have been so impressed by the engagement level and dedication from the myasthenia gravis community,” Ty Dunkelberger, general manager of Bionews Insights, said in a statement to Myasthenia Gravis News.

“Our Bionews Insights team is grateful for this partnership and mutual trust in the name of research and better understanding. Our goal is to put the patient first with everything we do; whether it is patient advocacy, helping to realize better therapies and treatments, or just broadening the greater understanding to the larger myasthenia gravis community,” he added.

Conducted from Feb. 11 through March 28 of this year, the goal of this U.S.-based survey was to gain greater insight into the characteristics of the MG community and disease management. Survey questions focused on demographics, disease symptoms, treatment plans, side effects, and insurance. Quality of life and changes in treatment also were assessed.

A total of 743 people responded to the online questionnaire. Of these, 89.91% had the disease, 9.69% were family members or friends of a person with MG, 0.27% were healthcare professionals, and 0.13% were researchers with an interest in the MG field.

Subsequent analysis focused only on people with the disease — a subgroup with calculations based on 505 responses. The mean age of these patients was 66.61 years, ranging from 26 to 94.

Most MG patients who responded to the survey were male (51.17%) and white (91.89%), based on 641 valid responses. Most had a bachelor’s degree (29.2%), followed by a master’s, doctorate, law, or medical degree (26.84%). A total of 21.04% had an associate’s or trade school degree, while 15.23% had a high school diploma or GED. The remaining 7.69% reported another education level.

Because MG is thought to be associated with abnormalities of the thymus gland, an organ of the body’s immune system, data shows that some patients may benefit from thymectomy — a surgery to remove the thymus. In total, 26.15% of the survey respondents (154 of 589 patients) had undergone the procedure.

Concerning medical care, most respondents reported being seen by a neurologist (41.49%, 254 of 612 responses), and/or a general/primary care health practitioner (35.44%). The vast majority were receiving specific treatment for MG (94.09%, 557 patients of 592).

MG is typically characterized by muscle weakness, sometimes involving specific muscle groups, but patients can experience a variety of symptoms. Based on survey responses from 612 patients, fatigue was the most reported symptom (noted by 13.34% of the group), followed by swallowing issues (8.16%), impaired posture/balance (7.34%), and changes in speech (6.71%).

Of note, emotional changes were reported by 4.15% of the group, depression by 3.92%, and cognitive difficulties by 3.36%.

Interestingly, according to survey respondents, fatigue was the symptom that most affected their daily activities, as reported by 214 patients of 564 (37.94%).

Mestinon (pyridostigmine) was by far the medication taken most frequently by survey respondents (34.46%, 191 of 553 patients). That was followed by CellCept (mycophenolate mofetil) at 13.36%, and intravenous immunoglobulin, at 9.65%.

When asked how satisfied they were with their treatment plan, most reported being satisfied (71.3%, 395 of 554 patients) — 27.44% were “extremely satisfied,” and 43.86% “somewhat satisfied.” Extreme dissatisfaction was reported by 2.71% (15 patients).

In line with results on treatment satisfaction, 73% (404 of 554 patients) said they are not considering a change in their treatment plan, versus 27% (150 patients) who said that they are. Of those considering a treatment switch, 45.52% say lack of effectiveness of their current treatment is the primary reason to consider a switch, and 31.03% point to treatment side effects as the main reason. Frequency of treatment administration (4.14%) and cost (2.76%) also were noted as reasons for considering a treatment switch.

In terms of treatment side effects, fatigue was again reported as the main symptom experienced by patients (10.72%, 55 of 516 patients), followed by leg cramps (6.71%), and insomnia (5.57%). In total, 31.85% (157 of 493 respondents) considered fatigue their most bothersome treatment-related side effect, followed by diarrhea (9.13%).

Data on health insurance was available for 638 patients. Most were covered by Medicare (52.82%), followed by private insurance (29.31%), Tricare (1.88%), and Medicaid (1.25%). Other types of health insurance were used by 11.29% of the respondents, and 0.63% (four patients) reported not having health insurance.

Most respondents (more than 85% of 595 patients) were generally satisfied with their insurance provider, with 52.77% answering they were “extremely satisfied” and 32.94% responding they were “somewhat satisfied.” The option “extremely dissatisfied” was chosen by 1.01% of the respondents (six of 595 patients).

Quality of life is an important factor when managing a disease and treatment plan. Healthcare providers note that patient-reported quality of life is multidimensional, representing an individual’s overall perception of the effect of illness and treatment on the physical, psychological, and social aspects of their lives.

Survey results showed that, of the 641 patients who responded, 44.3% (284) were satisfied to some degree with their quality of life — 13.57% were “very satisfied” and 30.73% “somewhat satisfied.”

However, a similar percentage — 45.71% (293) — reported being unsatisfied, with 17% being “very unsatisfied” and 28.71% “somewhat unsatisfied.”

Nonetheless, when asked about their perspective and feelings about the future, 57.97% (371 of 640 patients) reported being optimistic — 36.41% said they were “somewhat optimistic” and 21.56% reported being “very optimistic.” In contrast, 20% reported being “somewhat pessimistic” and 4.38% “very pessimistic.”

Overall, the results from the survey indicate that more support should be given to MG patients to increase their quality of life and understand their needs. On that note, high-quality care and proper symptom management seem crucial factors. The data suggest that a discussion on strategies to help patients achieve a greater quality of life should take place within the healthcare and patient communities.

Based on these results, further research could examine more detailed data on factors that determine quality of life for MG patients.