To determine if pain in neuromyelitis optica spectrum disorder (NMOSD) is the primary driver of quality of life (QoL), and determine whether pain influences depressive symptoms, anxiety and sleep disturbance.

NMOSD is a chronic autoimmune disease of the central nervous system that preferentially targets the optic nerves and spinal cord leading to blindness and paralysis. Pain, anxiety and depression are common symptoms associated with NMOSD, and effect quality of life (QoL). Evaluating the relationship between pain and QoL enhances our ability to understand how improving pain may reduce the overall burden of symptoms on patients with NMOSD.

We recruited patients into a cross-sectional study of symptoms (predictor variables) and QoL (outcome variable) in patients with NMOSD. Participants were eligible regardless of pain status, history of myelitis, or antibody status. Participants completed measurement tools to determine pain severity and interference (Brief Pain Inventory), co-occurring symptoms (Neuro-QoL-Anxiety, -Depression and -Sleep Disturbance), and health-related QoL (Short Form-36 Health Inventory). Regression modeling controlled for age, delay in diagnosis and history of myelitis.

Seventy patients (10 per covariate) were recruited (89% female) into this investigation. Preliminary data analysis incorporating multivariable regression modeling indicates that pain (p=0.003) and anxiety (p=0.03) significantly influence QoL. Sleep disturbance only influences QoL in those patients for whom both pain and anxiety are present. Depressive symptomatology does not appear to significantly impact QoL in patients with NMOSD. Beta coefficients suggest that pain independently has the most impact on QoL.

Pain is emerging as the primary driver of QoL in NMOSD. Pain further contributes to poor quality of life through its impact on anxiety and sleep.