Getting a generalized MG diagnosis can take more than 2 years: Study
People often feel dismissed by doctors, particularly women, minority patients
- Generalized myasthenia gravis diagnosis takes over two years on average, involving multiple doctor visits.
- Women and minority patients often feel dismissed; doctors' lack of myasthenia gravis awareness contributes to delays.
- Improving interactions between patients and the healthcare system is crucial to reduce diagnostic delays.
For people with generalized myasthenia gravis (MG) in the U.S., getting a correct diagnosis is often a difficult and stressful process that can take more than two years from the time of symptom onset, a study showed.
Findings suggest that people with MG often feel dismissed by doctors when they first seek care, especially those who are women or are from racial or ethnic minorities. A lack of MG awareness among primary care physicians was also found to play a role in diagnostic delays.
“We propose that solutions should prioritize interactions between healthcare system and patients rather than patient education,” researchers wrote.
The study, “Patient journey in generalized myasthenia gravis in the United States: Barriers to timely diagnosis and proposed solutions,” was published in the Journal of the Neurological Sciences.
The study, part of a project designed to identify barriers to timely diagnosis for people with rare neuroinflammatory diseases and propose solutions, was funded by Alexion, AstraZeneca Rare Disease, which markets the approved MG treatments Soliris (eculizumab) and Ultomiris (ravulizumab-cwvz).
Reaching an MG diagnosis can be challenging
Myasthenia gravis (MG) is an autoimmune disease that’s marked by symptoms such as fatigue and muscle weakness. In gMG, this weakness can occur in different muscle groups throughout the body.
Because these symptoms tend to be nonspecific, diagnosing MG can be challenging, often requiring a battery of medical tests to identify key signs of the disease and rule out other explanations.
“Therefore, patients with gMG may receive one or more potential misdiagnoses during their diagnostic journey, resulting in delayed treatment initiation,” the researchers wrote. “The diagnostic journey can be even more difficult and prolonged for racial and ethnic minorities (REM), including Black, Latino, and Hispanic individuals, who have historically faced inequities in healthcare because of structural racism and implicit bias.”
In this study, a team of researchers in the U.S. conducted surveys of 71 people with gMG, as well as 11 physicians and one nurse who regularly treat people with the disease, from January to May 2023. To supplement the survey findings, the researchers also conducted interviews with most of the patients and clinicians.
The patients’ mean age was 55.1 years, 62% were women, and 23.9% were from racial and ethnic minority groups. They were most frequently from the Midwest (40%) and Southeast (33.3%) regions. Most (88.7%) had a degree beyond high school, and nearly half (49.3%) had private insurance.
On average, patients met with 4 doctors before receiving correct diagnosis
Survey results showed that the mean time from the first onset of symptoms to receiving a definitive diagnosis of MG was 26.3 months, or a little more than two years. Specifically, patients waited a mean of 11.8 months, or about a year, from the appearance of first symptoms to seeking medical care. The process from seeking care to diagnosis took a mean of 15.5 months.
While the time to seeking care was similar for white and REM patients, the latter group had to wait longer for a correct diagnosis (18.6 months vs. 14.5 months).
On average, patients had to consult with more than four different doctors before receiving a correct diagnosis. The researchers noted that women and REM patients reported seeing more doctors than their male and white counterparts, respectively, and they were more likely to report feeling dismissed by doctors.
“It felt like they thought I was lying [….] I was not being taken seriously,” said a woman from a racial/ethnic minority group.
“One of the biggest causes of stress, reported by REM patients, was the behavior of medical providers during their journey; patients reported that being perceived as drug-seeking was particularly stressful,” the researchers wrote.
The most commonly cited reason for diagnosis delays was that doctors assumed patients’ symptoms were the result of female health issues, such as being hormonal. Difficulty accessing specialty care and tests, as well as a general lack of awareness and knowledge about MG among doctors, were other commonly cited reasons. Clinicians agreed that these are areas that need to be addressed.
Our findings suggest that solutions for REM and other patients with long journeys should prioritize interactions between the healthcare system and patients rather than educating patients to seek care sooner since the time from seeking care to diagnosis was longer than from symptom onset to seeking care.
Most patients reported that their diagnostic journey was stressful or very stressful (74.6%) and that the diagnostic process was difficult or very difficult (62%), with substantially higher proportions of REM patients reporting these issues relative to white patients.
Overall, these results “highlighted that patients with gMG experienced long and complex diagnostic journeys and had several barriers to timely diagnosis based on their race, ethnicity, and gender,” the researchers wrote.
The team proposed several potential ways to help address these issues. Some strategies aim at supporting patients, such as providing educational resources or hiring professionals whose job is to help patients navigate the complexities of the healthcare system.
However, they stressed a more pressing need for increased advocacy and awareness about MG for doctors in particular. The researchers also noted that reforms in the U.S. healthcare system, such as implementing universal health insurance, could help ensure patients have timely access to care.
“Our findings suggest that solutions for REM and other patients with long journeys should prioritize interactions between the healthcare system and patients rather than educating patients to seek care sooner since the time from seeking care to diagnosis was longer than from symptom onset to seeking care,” the researchers concluded.
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