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Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder

Fecha de publicación: Fecha Ahead of Print:

Autores de IIS La Fe

Participantes ajenos a IIS La Fe

  • Meca-Lallana, JE
  • Prefasi, D
  • Forero, L
  • Sepulveda, M
  • Calles, C
  • Martinez-Gines, ML
  • Gonzalez-Suarez, I
  • Boyero, S
  • Romero-Pinel, L
  • Sempere, AP
  • Meca-Lallana, V
  • Querol, L
  • Costa-Frossard, L
  • De Castro-Trapiello, H
  • Canal, N
  • Maurino, J

Grupos

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 (inter-quartile 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.

Datos de la publicación

ISSN/ISSNe:
1177-889X, 1177-889X

Patient Preference and Adherence  DOVE MEDICAL PRESS LTD

Tipo:
Article
Páginas:
713-719
PubMed:
33880015
Factor de Impacto:
0,629 SCImago ℠
Cuartil:
Q1 SCImago ℠

Citas Recibidas en Web of Science: 13

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Keywords

  • neuromyelitis optica spectrum disorder; stigma; quality of life; depression; patient-reported outcomes

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