The Path to Diagnosis and Treatment Among Patients With Generalized Myasthenia Gravis (gMG): Health Disparities Experienced by Racial and Ethnic Minorities From Project ASPIRE (eliminAte diSparities and Promote equIty in Rare diseasE)
Nan Jiang1, Marla Morgan2, Wendy Everett3, Adrian Kielhorn4, Kelly McNeil-Posey4, Stacey Tatroe5, Kristi Mitchell3, Sheila Fifer3
1The University of Alabama at Birmingham, 2Phoebe Putney Memorial Hospital, 3Atlas Clarity LLC, 4Alexion, AstraZeneca Rare Disease, 5TwelveStone Health Partners
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.
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