• Patient Prefer Adher · Jan 2021

    Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder.

    • Jose E Meca-Lallana, Daniel Prefasi, Francisco Pérez-Miralles, Lucía Forero, María Sepúlveda, Carmen Calles, María L Martínez-Ginés, Inés González-Suárez, Sabas Boyero, Lucía Romero-Pinel, Ángel P Sempere, Virginia Meca-Lallana, Luis Querol, Lucienne Costa-Frossard, Hugo de Castro-Trapiello, Neus Canal, and Jorge Maurino.
    • Clinical Neuroimmunology Unit and Multiple Sclerosis CSUR. Department of Neurology. Hospital Universitario "Virgen de la Arrixaca", IMIB-Arrixaca, Murcia, Spain.
    • Patient Prefer Adher. 2021 Jan 1; 15: 713-719.

    BackgroundPerception 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).MethodsA 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.ResultsSeventy-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).ConclusionStigma 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.© 2021 Meca-Lallana et al.

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