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INTRODUCTION: Relapses of neuromyelitis optica spectrum disorder (NMOSD) result in cumulative neurologic disabilities, are unpredictable, and are interspersed with remissions. Pain in NMOSD is often severe and intractable, with a significant impact on patient quality of life (QoL). We performed a more detailed analysis of previously published survey data on the association of pain and QoL, comparing patients who were seropositive and seronegative for antibodies against aquaporin-4 (AQP4-IgG). METHODS: We conducted a secondary analysis of questionnaire data from 193 NMOSD patients across North America. The study population was predominantly female (88.6%) and aged 19-76 years. Results were reported for three groups: AQP4-IgG-seropositive (61.1%), AQP4-IgG-seronegative and the total cohort including patients with unknown serostatus. We measured the strength of associations and interactions between pain and variables including QoL, patient satisfaction, frequency of hospital visits, and number of relapses versus other symptoms. RESULTS: Pain severity was the strongest negative predictor of QoL. In the total and AQP4-IgG-seropositive groups, pain was the most common symptom that patients wanted their physician to be concerned about; in the AQP4-IgG-seronegative group, this was fatigue. For all patients, frequent hospital visits and relapses were associated with more severe pain, but not frequency of NMOSD specialist visits. Patients without recent relapse still commonly reported moderate or severe pain (>25%). CONCLUSION: This study confirms the heavy burden of pain on NMOSD patients and its effect on QoL and healthcare utilization. Prevention or early treatment of relapses and more effective pain management may reduce this burden.

Original publication




Journal article


J Neurol Sci

Publication Date





Autoimmune disease, Neuromyelitis optica spectrum disorder, Optic neuritis, Pain, Patient-reported outcomes, Quality of life