Assessment of Patients with Neuromyelitis Optica Spectrum Disorder Using the EQ-5D

Neuromyelitis optica spectrum disorder (NMOSD) is a rare autoimmune disease characterized by unpredictable attacks of the optic nerves and spinal cord that cause neurologic deficits, including weakness, numbness, bowel/bladder dysfunction, and pain and reduced vision and can ultimately lead to blindness and paralysis. We assessed the effects of NMOSD on quality of life.

Adult patients with NMOSD treated at a US academic neurology clinic completed the EQ-5D and several other measures of functional status and quality of life. The EQ-5D scores and correlations across measures were evaluated, and scores were compared with those of patients with multiple sclerosis and US norms.

Twenty-one patients (90% women; mean age, 42.8 years; mean disease duration, 8.2 years) were included. The mean EQ-5D score was 0.74. Most patients reported at least some problems with mobility, pain/discomfort, usual activities, and/or anxiety/depression. Greater proportions of patients reported moderate or severe problems with mobility and pain/discomfort than they did with self-care, usual activities, or anxiety/depression. In a multivariate model, only the Brief Pain Inventory was a significant independent predictor of overall EQ-5D score.

Neuromyelitis optica spectrum disorder has a substantial effect on multiple domains of quality of life. Pain seems to be among the primary drivers of the EQ-5D scores in NMOSD.