Patients with generalized myasthenia gravis (gMG) often face long waits before getting the right diagnosis, according to a recent study published in the Journal of Neurological Sciences.
The study found that the time from first noticing symptoms to seeing a doctor was shorter than the time from seeing a doctor to finally being diagnosed. It also showed that race, ethnicity and gender can affect how long this process takes.
On average, patients spent about 26 months on their diagnostic journey. Around 12 of those months passed between the first symptoms and the first medical visit, while about 15 months passed between seeking care and receiving a correct diagnosis.
Patients from racial and ethnic minority groups often faced even longer delays, waiting an average of 18.6 months from seeking care to diagnosis, compared with 14.5 months for white patients. Many patients saw several healthcare providers before getting their diagnosis — an average of more than four — and women and minority patients saw more providers than men and white patients.
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The study found that delays sometimes occurred because doctors misunderstood symptoms, especially in women, or because patients had difficulty getting appointments with specialists. Another major problem was that many healthcare providers did not have enough knowledge about gMG.
“We propose that solutions should prioritize interactions between [the] healthcare system and patients rather than patient education,” the researchers said.
The researchers suggested several ways to improve care for patients with gMG. These include increasing the number of patient navigators (individuals who help patients navigate the healthcare system), improving education about gMG for healthcare providers and making it easier for different healthcare providers to access a patient’s medical records.
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