To assess the perception of stigma and its impact in neuromyelitis optica spectrum disorders (NMOSD).

A non-interventional, cross-sectional study was conducted in 13 neuroimmunology clinics in Spain. Patients with a diagnosis of NMOSD (2015 Wingerchuk criteria) were included. The 8-item Stigma Scale for Chronic Illness (SSCI-8), the Expanded Disability Status Scale (EDSS), the 29-item Multiple Sclerosis Impact Scale (MSIS-29), the Beck Depression Inventory-Fast Screen (BDI-FS), the Pain Effects Scale (MOS PES) and the Fatigue Impact Scale for Daily Use (D-FIS) were used to assess the perception of stigma, disability, health-related quality of life, mood, presence and impact of pain and fatigue, respectively. Associations between outcomes measures were analysed using Spearman’s rank correlation and logistic regression (assessing the contribution of stigma to symptoms of depression [depressed, not depressed]).

Seventy-one subjects were studied (mean age= 47.4 years ± 14.9, 81.7% female, mean time since diagnosis: 6.1 years ± 3.9). The median EDSS score was 3.0 (interquartile range 1.5, 4.5). Stigma prevalence was 61.4% (n=43); mean SSCI-8 score=11.9 ± 5.1. Thirty-one patients (44.3%) were classified as depressed. The SSCI-8 score showed a significant correlation with both physical (rho=0.576, p<0.0001) and psychological (rho=0.608, p<0.0001) MSIS-29 scales scores, EDSS score (rho=0.349, p=0.0033), MOS PES score (rho= 0.457, p<0.0001), and D-FIS score (rho=0.556, p<0.0001). Stigma was found to positively predict concurrent depression (OR=1.32; 95% CI: 1.13-1.55, p=0.0004).

Stigma is a common phenomenon in people with NMOSD. Identifying stigma may be crucial to implement specific educational intervention strategies.