| Abstract: |
Background: Perception of stigma was associated with low self-esteem, psychological problems, and decreased health-seeking behavior among patients with different neurological disorders. The purpose of this study was to assess stigmatization and its impact in patients with neuromyelitis optica spectrum disorder (NMOSD). Methods: A non-interventional study was conducted at thirteen 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 MOS Pain Effects Scale (MOS-PES) and the Fatigue Impact Scale for Daily Use (D-FIS) were used to assess the perception of stigma, disability, quality of life, mood, pain, and fatigue, respectively. Associations between outcome measures were analyzed using Spearman's rank correlation. Results: Seventy-one patients were studied (mean age: 47. 4 years ± 14. 9, 81. 7% female, mean time since disease onset: 9. 9 years ± 8. 1). The median EDSS score was 3. 0 (interquartile range 1. 5, 4. 5). Stigma prevalence was 61. 4% (n=43). Thirty-one patients (43. 6%) had depression. 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), BDI-FS score (rho= 0. 613, p<0. 0001), MOS-PES score (rho= 0. 457, p<0. 0001), and D-FIS score (rho=0. 556, p<0. 0001). Conclusion: Stigma is a common phenomenon affecting over 6 out of 10 patients with NMOSD. Understanding stigma may be useful to develop educational strategies improving NMOSD knowledge. |