Background: Myasthenia gravis (MG), is a rare, neuromuscular disorder that affects muscle strength and movement Patients typically require more frequent and specialized care post-diagnosis.
Objectives: To characterize changes in frequency and types of care visits before and after patients receive an MG diagnosis.
Methods: Recruitment of a real-world data cohort of patients with MG diagnoses between 02-10-2000 and 04-22-2023 across U.S. health systems began August 2021 and is ongoing. Patients enrolled and consented to share their medical records with PicnicHealth. Data from two years before and up to two years after diagnosis were abstracted from structured and unstructured portions of medical records via human-reviewed machine learning. Any visit, including care site and provider information, were included in the study period. Summary statistics were calculated for patients before and after MG diagnoses, and paired t-tests were conducted on continuous outcomes.
Results: 657 patients were included in the study. Median age at enrollment was 53 (IQR: 15, 89), and 67% were female. Across the study period, 15% of visits were inpatient, 61% were outpatient, and 23% were emergency medicine. On average, patients had seven outpatient, one inpatient and one emergency medicine visit per year. The mean increase in the number of visits from the two years before compared to two years after MG diagnosis was four visits (95% CI: 3.8 - 4.7). 519 patients saw a neurologist during the study period; 198 patients saw a neurologist before they were diagnosed with MG and 71 reported their first symptom at diagnosis. The mean increase in the number of neurology visits from the two years before compared to two years after MG diagnosis was four visits (95% CI: 3.8 - 4.2). Additionally, patients had three more primary care (95% CI: 2.0 - 3.1), two physical therapy (95% CI: 0.5 - 3.9), one emergency medicine (95% CI: 0.8 - 1.5), and one ophthalmology (95% CI: 0.2 - 1.3) visits after their diagnosis.
Conclusion: Patients diagnosed with MG seek care more frequently in the two years after their diagnosis, including disease-specific specialists as well as emergency care and physical rehabilitation. Increased visits likely lead to a larger burden for patients traveling more frequently for care. Future studies should be conducted to quantify these impacts on patients.
