According to a study based on a survey in five European countries, more than a quarter of patients with generalized myasthenia gravis (gMG) spend more than a year waiting for an accurate diagnosis.
The study’s findings also suggested that patients who waited more than a year for a diagnosis may have more severe illness, higher levels of fatigue, more psychological distress than those who were diagnosed within a year or less. Poor health and poor quality of life.
“These findings highlight the importance of timely, accurate diagnosis to limit the burden on the patient and healthcare providers, and highlight the need for better disease management strategies,” the researchers wrote.
study,”Impact of diagnostic delay on European patients with generalized myasthenia gravisPublished in Annals of Clinical and Translational Neurology.
Getting an accurate diagnosis for a rare disease like gMG can be a time-consuming, stressful, and expensive process for patients, often requiring multiple evaluations and consultations with health care providers. Possible factors contributing to a delay in the diagnosis of gMG include the fact that symptoms of muscle weakness and fatigue may be attributed to other conditions, which can be further complicated by the presence of comorbidities.
Understanding the impact of waiting for a diagnosis
“A detailed understanding of the incidence of diagnostic delay in a diverse population of people with MG, as well as the impact it has on their disease burden and life experience, is important in informing diagnosis and management strategies,” the researchers wrote. .
Researchers conducted a survey-based study to determine how long MG patients from five European countries—France, Germany, Italy, Spain, and the United Kingdom—waited to receive an accurate diagnosis, as well as the effect of waiting more than once. to evaluate Call for diagnosis.
The team analyzed survey data from 387 gMG patients and their doctors. The mean age of the patients was 52.5, and more than half (54%) were women.
The delay to diagnosis was approximately one year for all patients. However, for the 27.1% who waited more than a year for a GMG diagnosis, the delay was a mean of 975 days, or nearly three years.
Incorrect initial diagnosis was more common for patients who faced a long wait for gMG diagnosis. Approximately 70% of patients who waited more than a year were initially misdiagnosed, often with chronic fatigue syndrome, hysteria, or severe neuropathy/myopathy. In contrast, less than 20% of patients who waited a year or less for a correct diagnosis were initially given a different diagnosis.
At the time of the survey, 40% of patients who had waited more than a year for a diagnosis of gMG had a US MG Foundation grade 3 – mild weakness in the muscles rather than the eyes. prisoner sign Among those who experienced a diagnostic delay of one year or less, the figure was 24.1%, suggesting a more severe disease burden in patients who experienced a longer diagnostic delay.
Symptoms and comorbidities also differed between the two groups. Physicians reported that patients with a diagnosis delay of more than a year were slightly more likely to experience fatigue. They were also significantly more likely to have mental health issues such as anxiety and depression.
A slightly higher percentage of patients with a diagnosis delay of more than one year were reported by physicians to have somewhat poor, poor, or very poor quality of life compared to those who were diagnosed early (26.7% versus 22% ).
Although there is considerable scientific research suggesting that gender bias can affect patient prognosis for many health conditions, the researchers said, their study did not find that gender was associated with the time that gMG occurred. Patients were waiting for an accurate diagnosis.
The analysis “indicates that patients can experience significant diagnostic delays,” the researchers wrote, noting that “barriers to diagnosis may be overcome with educational initiatives.”
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