2026-04-17T01:58:09Zhttps://recercat.cat/oai/request

oai:recercat.cat:2445/1773162026-03-07T01:08:56Zcom_2072_1057col_2072_478916col_2072_478917

urn:hdl:2445/177316 Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder Meca Lallana, José E. Prefasi, Daniel Pérez-Miralles, Francisco Forero, Lucía Sepúlveda, María Calles, Carmen Martínez-Ginés, María L González-suárez, Inés Boyero, Sabas Romero-pinel, Lucía Sempere, Ángel P. Meca Lallana, Virginia Querol, Luis Costa Frossard, Lucienne De Castro-trapiello, Hugo Canal, Neus Maurino, Jorge Malalties del nervi òptic Malalties del sistema nerviós central Optic nerve diseases Central nervous system diseases 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. 2021-05-14T09:06:39Z 2021-05-14T09:06:39Z 2021-04-01 2021-05-13T13:09:05Z info:eu-repo/semantics/article Reproducció del document publicat a: https://doi.org/10.2147/PPA.S305707 Patient Preference and Adherence, 2021, vol. 15, p. 713-719 https://doi.org/10.2147/PPA.S305707 cc by-nc (c) Meca-lallana, Jose E. et al., 2021 http://creativecommons.org/licenses/by-nc/3.0/es/ info:eu-repo/semantics/openAccess Informa UK Limited Articles publicats en revistes (Institut d'lnvestigació Biomèdica de Bellvitge (IDIBELL))