MG poses moderate burden, despite treatment: MyRealWorld MG study

Emotional, psychological illnesses had considerable impact on quality of life

Patricia Valerio, PhD avatar

by Patricia Valerio, PhD |

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Despite current treatments, myasthenia gravis (MG) still poses a moderate burden on patients, according to data from a digital study of MG communities around the world.

Emotional and/or psychological coexisting illnesses also had a considerable impact on the participants’ quality of life, work, and studies, which researchers said “warrants investigation.”

 The findings were detailed in “Patient-reported impact of myasthenia gravis in the real world: findings from a digital observational survey-based study (MyRealWorld MG),” which was published in BMJ Open

MG is an autoimmune disorder wherein the immune system erroneously attacks proteins that are critical for nerve cells and muscles to communicate. Its symptoms include weakness of the eye and eyelid muscles and double vision. In some patients, muscle weakness affects facial expressions, swallowing, and speaking. 

“There is a lack of data about the disease and treatment burden of MG, which is critical for informed decision-making on disease management,” the researchers wrote.

To date, most of these data have been generated in clinical trials based on patient-reported outcomes. Direct patient reports, where patients can regularly provide their perspectives on MG burden and treatment impact, “may be especially valuable.”

A noninterventional, prospective study, MyRealWorld MG (NCT04176211), working with adult patient organizations from several countries is investigating the disease’s burden from a patient perspective. 

Starting in December 2019, participants had to enter data in a phone app once every month concerning events with MG that happened in the past month. The app, called MyRealWorld MG, was developed by Vitaccess.

The researchers also obtained reports through questionnaires and surveys completed every month to every six months. They have now analyzed data that was entered up to Oct. 31, 2021 from 1,693 participants in the U.S., Japan, Germany, the U.K., Italy, Spain, or Canada.

A total of 1,563 participants reported their age (average, 49.9); 1,586 reported their sex, with 69% being women; and 1,520 their MG type, with 88.5% classifying the disease as generalized and 11.5 % as ocular. Of the 1,693 participants, 38.7% resided in Italy.

Also, 83.7% of 1,412 participants confirmed receiving at least one routine treatment in the year before registering for the study, with anticholinesterase therapies being the most prevalent.

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Of 1,376 respondents, 30.8% said they received one or more rescue treatments during this time, steroids being the most used (58% of 424 participants).

The researchers also analyzed treatment-related side effects, with 67% of 255 participants reported having had a symptom they attributed to a side effect a month before registering for the study. The most frequently reported side effect was tiredness.

Most (64.6% of 1,495 respondents) reported having had at least one additional disease comorbidity, with most being thyroid problems, high blood pressure, and anxiety.

The participants also responded to questions about the impact of MG on their daily lives. These included questions that assessed the severity of their symptoms, from difficulty talking and swallowing to problems brushing their teeth or combing their hair. Of 880 reports, the final score — ranging from 0 (no impact) to 24 (severe impact) — was 5.7.

Another survey investigated the disease’s burden on emotions, physical health, self-care, and social life, with 895 respondents scoring a mean of 11.9 (a maximum score of 30 indicates severe impact).

Anxiety and depression were also assessed. Among 889 respondents, 22.5% reported mild, 20.3% moderate, and 9.9% severe anxiety. Also, 24.5% reported having mild, 14.5% moderate, and 4.2% severe depression. Most participants reporting at least moderate depression (166) and anxiety (268) described having other comorbidities.

Also, 86 respondents said they’d had alterations in their work or studies in the last month. Of the 61 who reported specific reasons for not being able to engage in such activities, 57.4% said MG was the reason.

This analysis “indicates that, despite current treatments, patients experience notable burden,” the researchers wrote, noting the prevalence of emotional comorbidities with MG deserves more research.