Patient-reported burden of symptoms in neuromyelitis optica: A secondary analysis on pain and quality of life

Abstract

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.

Impact of Neuromyelitis Optica Spectrum Disorder on Quality of Life from the Patients’ Perspective: An Observational Cross-Sectional Study

“…Similar to our results, they found that pain severity but not physical impairment was associated with depression, and that pain, depression, and walking impairment were three main HRQoL predictors. As in previous studies, the psychological and physical dimensions of quality of life were correlated with pain in our cohort [ 10 , 42 ]. Furthermore, the pain was a predictor for the physical and psychological dimensions of HRQoL.…”

Aquaporins and Neuropathic Pain

“…Previous studies have shown a high negative correlation between pain severity and quality of life in NMO patients [72]. At present, the mechanism of neuropathic pain associated with NMO is still unclear.…”

The psychological burden of NMOSD – a mixed method study of patients and caregivers

“…Pain, sexual dysfunction, and stigma substantially impact emotional well-being and quality of life among people with NMOSD [16]. Chronic pain affects over 80% of NMOSD patients [17], including in the absence of recent relapse [18]. Pain severity is the strongest negative predictor of quality of life, and the most common symptom reported by NMOSD patients [18].…”

“…Chronic pain affects over 80% of NMOSD patients [17], including in the absence of recent relapse [18]. Pain severity is the strongest negative predictor of quality of life, and the most common symptom reported by NMOSD patients [18]. Three-quarters of men and women with NMOSD report sexual dysfunction, specifically reduced libido, decreased orgasm, and erectile dysfunction [19,20].…”