Diagnosis and antibody status awareness in neuromyelitis optica spectrum disorder and MOG-associated disease: A cross-sectional study.

INTRODUCTION

Neuromyelitis optica spectrum disorder (NMOSD) and MOG-associated disease (MOGAD) present high risk of disability. Early testing for anti-aquaporin-4 (AQP4) and anti-myelin oligodendrocyte glycoprotein (MOG) antibodies is crucial for timely diagnosis and better outcomes. However, patient awareness of these antibodies and their understanding about their disease remains poorly characterized.

OBJECTIVES/AIMS: To assess the frequency of antibody serostatus awareness and diagnosis recognition among patients with NMOSD and MOGAD in a tertiary outpatient clinic.

METHODS

In this cross-sectional study (March 2023 to October 2024), we surveyed patients with AQP4-positive NMOSD, MOGAD and double-seronegative optic neuritis or longitudinally extensive transverse myelitis with a structured questionnaire evaluating their understanding of diagnosis and antibody status. We extracted demographic and clinical data from medical records and analyzed factors related to disease awareness.

RESULTS

We included 98 patients (81 % female): 57 with AQP4-positive NMOSD, 16 with MOGAD, and 25 double-seronegative. Median age at diagnosis was 36 years (IQR 30-47.5). Self-reported ethnicity was Black or mixed in 63 %, White in 32 %, and Asian in 5 %. Median years of education was 12 (IQR 8-12). Awareness of antibody status was reported by 34/57 (60 %) AQP4-positive and 11/16 (69 %) MOGAD patients. In univariate analyses, antibody awareness was associated with years of education (p = 0.0006), age at diagnosis (p = 0.0001), and age at onset (p = 0.001). In multivariable analysis, years of education remained independently associated, with each additional year increasing the odds of awareness by 32 % (OR 1.32, 95 % CI 1.11-1.63).

CONCLUSION

Almost half of the patients lacked information about their antibody status. Better communication and patient education could strengthen understanding, promote engagement in care, and reduce delays in diagnosis and treatment. Questions about how social determinants of health may impact in aptitude to hunt for proper and early diagnosis and treatment need to be more evaluated in the NMOSD/MOGAD scenario.