https://orcid.org/0000-0003-3767-3738
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.
Data Sharing Statement
Qualified researchers may request access to individual patient-level data through the clinical study data request platform (https://vivli.org/). Further details on Roche’s criteria for eligible studies are available here (https://vivli.org/members/ourmembers/). For further details on Roche’s Global Policy on the Sharing of Clinical Information and how to request access to related clinical study documents, see here https://www.roche.com/research_and_development/who_we_are_how_we_work/clinical_trials/our_commitment_to_data_sharing.htm.
Acknowledgments
The authors would like to acknowledge all patients and their families for making the PERSPECTIVES-NMO study possible.
Author Contributions
All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.
Disclosure
D. Prefasi, H. de Castro-Trapiello, and J. Maurino are employees of Roche Farma Spain. N. Canal is an employee of IQVIA Spain and IQVIA has received honoraria from Roche for clinical research services. F. Pérez-Miralles has received compensation for serving on scientific advisory boards or speaking honoraria from Almirall, Biogen Idec, Genzyme, Merck‐Serono, Mylan, Novartis, Roche, Sanofi‐Aventis, and Teva, outside the submitted work. M. Sepúlveda reports personal fees from Roche and UCB; travel reimbursement from Sanofi and Zambon. C. Calles reports personal fees from Biogen, Sanofi, Merck, Novartis, Teva, and Roche, outside the submitted work. S. Boyero reports personal fees from Roche, during the conduct of the study. L. Romero-Pinel took part in the observational study of Neuromyelitis optica: perspective NMO-ML41397. She also received honoraria compensation to participate in advisory boards, collaborations as a consultant and scientific communications and received research support, funding for travel and congress expenses from Biogen Idec, Bayer, Almirall, Merck, Sanofi-Genzyme, Roche, Novartis, and Teva. She reports participation in several clinical trials. Á Sempere reports personal fees from Biogen, Roche, Merck, Sanofi, and Teva, outside the submitted work. L. Querol reports grants from ISCIII, CIBERER, GBS-CIDP Foundation International, personal fees from UCB Pharma as the global principal investigator in clinical trial, grants and/or personal fees from Grifols, Roche, Merck, Akcea, Biogen, Novartis, Sanofi Genzyme, and Annexon, outside the submitted work. L. Costa-Frossard reports personal fees from Roche, during the conduct of the study; speaker fees, travel support, and/or served on advisory boards from Almirall, Bayer, Biogen, Biopass, Bristol-Myers, Ipsen, Merck, Novartis, Sanofi, and Teva, outside the submitted work. The authors report no other conflicts of interest in this work.