Persistent gMG symptoms disrupt daily life despite treatment, study finds

Ongoing symptoms that persist despite treatment can disrupt daily life, work, and mental well-being among adults with generalized myasthenia gravis (gMG), according to the BEYOND study.

When study participants rated how strongly they agreed with statements about how these ongoing symptoms affect their everyday lives, the statement — “If my symptoms were better controlled, I would have greater freedom to do the things I enjoy and lead a more satisfying life” — was the only one to reach consensus.

The researchers stated that “more effective therapeutic strategies leading to more sustained disease control would likely improve patients’ daily lives.”

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Findings from BEYOND were detailed in the study, “Patient perspectives from the BEYOND Delphi panel: burden of remaining symptoms and their fluctuations, despite treatment, in patients with generalised myasthenia gravis,” published in BMC Neurology.

In gMG, a rare, chronic autoimmune disease, self-targeting antibodies interfere with communication between nerves and muscles. This leads to muscle weakness and fatigue that can affect the eyes, face, limbs, and, in severe cases, the breathing muscles.

While there’s no cure for gMG, several different treatments are available to help manage its symptoms. Even so, up to 60% of patients continue to experience symptoms despite treatment, and up to 47% report dissatisfaction with how well their symptoms are managed.

The BEYOND study used a modified Delphi panel, a structured method for building consensus among a group, in this case adults with gMG. Its goal was to “determine, from a qualitative perspective, the burden of gMG across aspects of daily life in a patient population currently on treatment but still experiencing symptoms.”

Twenty adults with gMG from seven European countries entered the Delphi panel, and 19 completed the second survey round reported in the study’s main results. Participants rated statements about their experiences on a nine-point scale, where scores of 1-3 indicated disagreement and scores of 7-9 reflected agreement. Agreement by 80% or more of participants was considered consensus, while 60% or more was considered close to consensus.

Overall, all five domains — daily activities, social life and relationships, mental wellbeing, work and education, and future plans — had mean ratings above the midpoint of the nine-point scale. Every participant in the second round rated at least one statement with a score of 7 or higher, indicating that all were affected by remaining symptoms and their fluctuations to some degree.

Daily activities, social life and mental wellbeing affected

In the category of daily activities, several statements came close to consensus, with mean scores ranging from 6.6 to 7.2. These included statements about needing breaks or being unable to resume activities participants enjoyed before their diagnosis.

Household chores were commonly affected, with participants describing difficulty with repetitive movements, lifting or reaching, and relying on partners, friends or carers for support. One participant described how “every activity that I used to do without thinking now requires strategy and help.” Hobbies, particularly physical ones, were also affected.

In the social-life category, participants came close to consensus on a statement about needing to rest before attending a social event, which had a mean score of 7. Fatigue, drooping facial muscles, and speech difficulties made it harder for participants to engage socially, especially in the evenings or over extended periods. As a participant explained, “I hate to go out if my voice is nasal and my eyes are drooping.” Some described worrying about how others perceived their symptoms, including feeling like a burden to family and friends.

On romantic and sexual relationships, 53% agreed that their “remaining symptoms of gMG can sometimes have a negative impact on [their] romantic/sexual relationships.”

The mental wellbeing domain showed the greatest impact among the five explored, with 63% of participants giving it a median rating of 7 or higher. Still, no individual statement in this domain reached or neared consensus.

Participants described heightened anxiety linked to the unpredictability of their symptoms, fear of myasthenic crisis, and stress linked to work and family responsibilities. Some noted that visible physical changes affected their self-esteem.

In terms of work, nearly half (47%) said they had to leave jobs, reduce hours, or change roles because of the unpredictability and severity of their symptoms, particularly those affecting physical effort, stamina, or speech. The statement “I have to make adjustments to my work or career plans due to the potential unexpected worsening of my symptoms” came close to consensus.

Symptom uncertainty complicates future plans

Regarding future plans, many participants said the uncertainty of their symptoms made it difficult for them to plan confidently. Four in 10 (40%) noted their symptoms would challenge their ability to look after children. At the same time, those less affected in this area described having already completed their family before diagnosis or choosing not to have children altogether.

About a third of participants (35%) said they felt limited in pursuing further career opportunities. One participant said it was “too much of a struggle to plan or enhance a career further when you don’t know how you are physically from day to day.”

Only one statement reached the 80% consensus threshold: “If my symptoms were better controlled, I would have greater freedom to do the things I enjoy and lead a more satisfying life.” It received a mean score of 7.7.

Roughly half of the participants (55%) said they would have the ambition to continue their career or studies, extend their families, or take up hobbies and exercise if their symptoms were less intense and unpredictable. And about one in three (32%) described trying to pursue meaningful plans and stability within the limits of their condition.

“The Delphi panel results demonstrate the burden of remaining symptoms and their fluctuations for patients with gMG on a variety of treatment classes, including advanced therapies, suggesting that effective therapeutic strategies minimising these, would likely improve patients’ daily lives,” the researchers wrote.

The study was funded and sponsored by Johnson & Johnson; four authors were company employees, and five others received consulting honoraria from the company.