Symptom severity, pain, fatigue, depression, and work-related barriers caused by neuromyelitis optica spectrum disorder (NMOSD) strongly affect the quality of life in patients with the disease, according to a new study published in Neurology and Therapy.

Researchers conducted an observational, multicenter, cross-sectional study in Spain from November 2019 to July 2020 to assess the impact of NMOSD on quality of life from patients’ perspectives. They recruited 71 patients with NMOSD, 93.9% of whom were currently undergoing treatment with disease-modifying therapy.

Patients completed 7 different questionnaires assessing various aspects of quality of life, including the Multiple Sclerosis Impact Scale (MSIS-29), SymptoMScreen, Stigma Scale for Chronic Illness, Beck Depression Inventory-Fast Screen, Fatigue Impact Scale for Daily Use, MOS Pain Effects Scale (PES), and Multiple Sclerosis Work Difficulties Questionnaire (MSWDQ-23). They also underwent testing to assess the level of physical disability, using the Expanded Disability Status Scale, the 9-Hole Peg Test, and the Timed 25-Foot Walk Test.

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Only 30% of the patients worked, 24.3% sustained a permanent disability due to NMOSD, and 29.6% reported autoimmune comorbidities including systemic lupus erythematosus (7.0%), Sjogren’s syndrome (5.6%).

Overall, 81.4% of patients reported fatigue and 83.1% reported that pain negatively impacted their quality of life. According to the PES, 29.6% of patients indicated that their pain significantly interfered with sleep and participation in recreational activities.

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Over 44% of patients reported depressive symptoms, most of which were mild in severity. Patients experienced increased symptom severity with visual deficits and urinary urgency indicating problems with bladder control. Of the 41 patients who completed the MSWDQ-23, 85.4% reported physical, 75.6% psychological/cognitive, and 70.7% external barriers to work. The MSIS-29 physical dimension most strongly correlated with symptom severity, but also with pain, fatigue, depressive symptoms, and disability (P <.0001).

“Evaluating the impact of NMOSD on [health-related quality of life] from the patients’ perspective is essential to allow early effective interventions that may help improve patients’ well-being,” the authors said. “There is a need for healthcare providers to be aware of these symptoms and to adopt appropriate interventions to improve overall [health-related quality of life] in patients with NMOSD.”


Meca-Lallana JE, Gómez-Ballesteros R, Pérez-Miralles F, et al. Impact of neuromyelitis optica spectrum disorder on quality of life from the patients’ perspective: an observational cross-sectional study. Neurol Ther. Published online May 6, 2022. doi:10.1007/s40120-022-00356-6