Patient journey in generalized myasthenia gravis in the United States: Barriers to timely diagnosis and proposed solutions

PURPOSE: Project ASPIRE aimed to identify barriers to timely diagnosis for patients with generalized myasthenia gravis (gMG), assess whether certain subgroups of patients are disproportionately affected, and propose solutions to mitigate barriers. METHODS: Quantitative surveys and qualitative interviews were conducted (January-May 2023) in patients with gMG (n = 71 surveys; n = 47 interviews) and clinicians in the United States treating patients with gMG (n = 12 surveys and interviews). Data on demographics, gMG diagnostic journey, barriers, and proposed solutions were collected. RESULTS: Patients had mean (SD) age of 55.1 (16.0) years; 62.0 % of patients were female; 76.1 % self-reported as White and 23.9 % as racial and ethnic minorities (REM; e.g., Black [12.7 %], Hispanic/Latinx [5.6 %]). Patients had mean (SD) diagnostic journey time of 11.8 (22.5) months from symptom onset to seeking care and 15.5 (36.7) months from seeking care to diagnosis. REM and female patients reported seeing more HCPs (mean [SD]: 4.8 [2.9] and 4.9 [3.5]) than White and male patients (4.1 [3.0] and 3.0 [1.1]), respectively. Sources of diagnostic journey delay (≥9.9 % patients) were: clinicians mistaking gMG symptoms as female health issues, difficulty accessing specialty care, and lack of gMG knowledge among HCPs. Proposed solutions included increasing patient/care navigator availability, patient/HCP knowledge about gMG, and medical records access across providers. CONCLUSION: Patients with gMG experienced longer diagnostic journeys from seeking care to diagnosis than from symptom onset to seeking care, and faced barriers to diagnosis based on race, ethnicity, and gender. We propose that solutions should prioritize interactions between healthcare system and patients rather than patient education.