Identify barriers to timely diagnosis for patients with NMOSD, assess whether disadvantaged groups are disproportionately affected, and propose solutions to mitigate barriers.

ASPIRE recruited patients through advocacy groups and referrals. Some patients completed surveys only, including the Depression Anxiety Stress Scales-21, while some participated in surveys and interviews (n=42). Health care providers (HCPs; n=12) were interviewed.

Survey respondents were predominantly female (93%; overall median age: 46 years) and ethnically diverse (50% White, 38% Black, 10% Hispanic/Latinx, and 2% American Indian and Alaskan Native). Respondents experienced a mean (standard deviation [SD]) journey time of 49.0 (92.8) months from symptom onset to NMOSD diagnosis; most delays occurred after seeking care. White respondents had shorter total journeys compared with POC (27.1 [55.4] vs 72.3 [118.2] months). Common (≥10% of respondents) reported reasons for delayed diagnosis were difficulty navigating insurance coverage (24%) and accessing specialty care (12%), lack of provider knowledge (12%), race/ethnicity (12%), and income (10%). Mean (SD) number of HCPs seen for all respondents was 4.8 (5.1). POC and women reported HCPs dismissed their symptoms as emotional problems, comorbidities, or drug-seeking behaviors. Most (74%) survey respondents reported their journey was “stressful” or “very stressful” (very stressful: POC, 57%; White, 43%). Patients and HCPs identified solutions to overcome barriers that included increasing knowledge about NMOSD, accessing health care appointments, and accessible medical records for HCPs.

The diagnostic path for NMOSD can be long and arduous, with average journey to diagnosis extending over 4 years. POC experienced 2.7x longer mean total journey time compared with White respondents. Project ASPIRE identified barriers and solutions to promote health equity by bringing awareness to inequities faced by patients with NMOSD.