[Pubmed] The Path to Diagnosis and Treatment Among Patients With Generalized Myasthenia Gravis (gMG): Health Disparities

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Neurology. 2025 Apr 8;104(7_Supplement_1):1828. doi: 10.1212/WNL.0000000000208770. Epub 2025 Apr 7.

ABSTRACT

OBJECTIVE: To identify barriers to diagnosis and healthcare access for patients with gMG, assess whether subgroups of patients are disproportionately affected, and propose solutions to mitigate barriers.

BACKGROUND: Historically, racial and ethnic minorities (REM) have faced explicit and implicit barriers to healthcare access, many of which are still in place today.

DESIGN/METHODS: ASPIRE recruited a broad demographic range of US patients with gMG. Quantitative and qualitative data were gathered from surveys and semistructured interviews among patients (n=71) and healthcare providers (HCPs, n=12).

RESULTS: Patients had a median age of 53 years (range, 20-91) and were predominantly female (62.0%) and White (76.1%). REM comprised 22.5% of respondents (Black, 12.7%; Hispanic/Latinx, 5.6%; American Indian/Alaska Native, 2.8%; Native Hawaiian/Pacific Islander, 1.4%). Respondents experienced a mean (SD) diagnostic journey duration of 26.3 (43.3) months from symptom onset to gMG diagnosis, with longer diagnostic journeys among REM versus White respondents (28.2 [29.0] vs 25.7 [46.8] months). Commonly reported reasons for delayed diagnosis (≥10% of respondents) were clinicians mistaking symptoms as other health problems (15.5%) and accessing specialty care (14.1%). The mean (SD) number of HCPs seen was greater for REM (4.8 [2.9]) versus White respondents (4.1 [3.0]). Most (74.6%) respondents reported their journey as "stressful" or "very stressful" ("very stressful": REM, 64.7% [11/17]; White, 35.2% [19/54]). Patients and HCPs identified solutions to overcome barriers, including increasing knowledge about gMG, increasing access to healthcare appointments, and ensuring HCP access to all medical records.

CONCLUSIONS: These ASPIRE results highlight that patients with gMG experience long and arduous diagnostic journeys, and the magnitude of the assessed barriers varied according to race/ethnicity. Compared with White respondents, REM on average experienced: longer total journeys, saw greater numbers of HCPs, and more frequently reported "stressful" and "very stressful" journeys. Nationwide action plans are needed to reduce the barriers to healthcare access faced by patients with gMG. Disclosure: Dr. Jiang has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for • Amylyx . Dr. Jiang has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Janssen . Dr. Morgan has received personal compensation in the range of $10,000-$49,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Alexion. Dr. Everett has a non-compensated relationship as a Advisor with Institute for Clinical and Economic Research that is relevant to AAN interests or activities. Adrian Kielhorn has received personal compensation for serving as an employee of Alexion. Adrian Kielhorn has stock in Alexion. Mrs. McNeil-Posey has received personal compensation for serving as an employee of Alexion Pharma. Ms. Tatroe has nothing to disclose. Ms. Mitchell has nothing to disclose. Ms. Fifer has nothing to disclose. Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.

PMID:40194098 | DOI:10.1212/WNL.0000000000208770


Source: https://pubmed.ncbi.nlm.nih.gov/4019409 ... t9+e462414