More physician and patient education needed on MG: Survey

Two-thirds of patients say being diagnosed was long and/or complicated process

Patricia Inacio, PhD avatar

by Patricia Inacio, PhD |

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More than half of myasthenia gravis (MG) patients take more than a year to be diagnosed from symptom onset and about two-thirds feel the diagnostic process was long and/or very complicated, according to an online survey in Poland.

Also, while 7 out of 10 respondents said their current treatment regimen controlled, at least to some degree, their disease, about one-quarter tolerated corticosteroids poorly. About 40% of patients also believed they had a myasthenic crisis, although this was probably mistaken by a worsening of symptoms, the researchers noted.

These findings highlight the “need to educate patients about myasthenic crises, providing accurate information about their nature and prevalence” to reduce “unnecessary therapies and improve treatment outcomes,” the researchers wrote. “It is essential to raise awareness among general practitioners about the distinct symptoms of MG, aiming to minimize diagnostic delays.”

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The study, “Diagnosis and therapy of myasthenia gravis—the patients’ perspective: a cross-sectional study,” was published in the journal Frontiers in Neurology.

MG is an autoimmune disorder wherein the immune system erroneously attacks proteins that are critical for nerve cells and muscles to communicate, leading to muscle weakness and wasting.

MG diagnosis is often based on both symptoms and their fluctuation, along with the presence of specific self-reactive antibodies that drive the autoimmune attacks that characterize the disease.

“Sometimes, however, it can take a long time to diagnose the disease, and the availability of the tests conducted to detect MG can vary depending on regional and institutional conditions,” the researchers wrote.

Wide range of treatments for MG

MG treatment, usually working to suppress the autoimmune attacks or restore neuromuscular communication, can range from medications and blood-cleaning procedures to thymectomy, or surgery to remove the thymus gland. Thymus abnormalities are believed to be involved in the production of MG-driving antibodies.

As such, therapeutic approaches for MG can vary in terms of invasiveness, efficacy, and safety.

“Understanding patients’ attitudes toward therapy and diagnosis allows medical personnel to respond appropriately through drug therapy and other therapeutic modalities, improving disease management and patients’ quality of life,” the researchers wrote.

To this end, a team led by researchers in Poland created an online survey of 38 questions that addressed social factors, demographics, and patient perspectives on diagnosis and treatment.

The survey was shared through the Polish Association of Myasthenia Gravis “Gioconda,” and completed by 321 adults with MG (89.7% women) between November and December 2022.

Less than half of the patients were diagnosed with MG before they reached 30 years old, and 56.4% were living with such a diagnosis for less than 10 years.

More than half (55.8%) waited between one and more than 10 years for a diagnosis since the first appearance of symptoms. A long diagnostic process was reported significantly more often by women than men (59.7% vs. 36.4%), with the latter being more commonly prescribed MG-specific lab tests at presentation (39.4% vs. 28.1%).

Most patients (71%) reported their diagnostic journey was long and/or very complicated, while less than a third considered it very short and not very complicated.

Myasthenic crisis reported

A total of 44.5% of respondents believed they had experienced a myasthenic crisis, a serious complication of MG that’s marked by severe muscle weakness and respiratory failure that requires intensive care and assisted ventilation.

“Many patients have probably mistaken it for a severe disease exacerbation,” the team wrote, adding that data suggests that these crises are less common, usually occurring “in 15–20% of all MG patients.”

Patients were most frequently treated with corticosteroids and anticholinesterases, or medications that increase the levels of a molecule called acetylcholine that is needed for normal muscle function.

Anticholinesterases were used in 92.9% of cases initially and as maintenance therapy in 84.3%, while about 45% of patients reported the use of corticosteroids both at the start of treatment and as maintenance therapy.

About one-quarter of patients (25.5%) experienced strong or very strong side effects with corticosteroids, and 1 in 10 patients (30.2%) reported minor, but constant side effects with those medications. Only 13.1% of patients reported no side effects with corticosteroids.

More than half of respondents said that corticosteroids’ side effects strongly or very strongly impacted their overall physical health (55.9%) and self-acceptance (52%). A large to very large impact on mental health was reported by 47.1% of patients, while more than one-quarter (28.2%) said these side effects strongly or very strongly influenced their daily activities performance.

More than half of the respondents (57%) underwent a thymectomy. Most did not receive intravenous immunoglobulin (IVIG)  (76%) nor plasmapheresis (80.4%), two blood-cleaning procedures aimed at reducing the amount of MG-associated self-reactive antibodies.

Patients’ thoughts on MG treatment

Most patients (72%) reported that their current therapy allowed them to control the disease course, albeit with varying degrees.

Still, 54.8% said that their present treatment did not meet their expectations, and that they expected it to be modified or the dose increased. The discontentment was significantly more frequent among patients treated with IVIG or plasmapheresis than among those never given those treatments.

In addition, patients reported that oral tablets were the most desirable route of treatment and intravenous (into-the-vein) infusions the least. Tablets were the preferred route among patients who believe their treatment met their expectations, while those who didn’t were twice as likely to prefer subcutaneous (under-the-skin) injections.

“Low therapy acceptance and less well controlled MG was associated with a preference for non-tablet therapies,” the team wrote.

Overall, these findings show that MG patients face diagnostic delays and likely do not understand what characterizes a myasthenic crisis.

This emphasizes the need for healthcare professionals not only to be more aware of MG symptoms, but also “focus on enhancing patient education, helping patients better understand MG symptoms, interpret them accurately, and manage the condition effectively,” the researchers wrote.

Treatment routes should also be optimized considering the patient preference, since this personalized approach may “minimize adverse effects and enhance treatment adherence,” they concluded.