Perception of stigma in patients with neuromyelitis optica spectrum disorder
Meca-Lallana, J.E. (Instituto Murciano de Investigación Biosanitaria)
Prefasi, D. (Medical Department. Roche Farma)
Miralles, F.P. (Hospital Universitari i Politècnic La Fe (València))
Forero, L. (Hospital Universitario Puerta del Mar (Cadis, Andalusia))
Sepúlveda, M. (Hospital Clínic i Provincial de Barcelona)
Calles, Carmen (Hospital Universitari Son Espases (Palma de Mallorca, Balears))
Martínez-Ginés, M.L. (Hospital General Universitario Gregorio Marañón)
González-Suárez, I. (Hospital Álvaro Cunqueiro (Vigo))
Boyero, Sabas (Hospital Universitario de Cruces (Barakaldo, País Basc))
Romeropinel, L. (Hospital Universitari de Bellvitge)
Sempere, Á.P. (Hospital General Universitario de Alicante (Alacant, País Valencià))
Meca-Lallana, Virginia (Hospital Universitario de la Princesa (Madrid))
Querol, Luis (Institut d'Investigació Biomèdica Sant Pau)
Costafrossard, L. (Hospital Universitario Ramón y Cajal (Madrid))
de Castro-Trapiello, H. (Roche Farma)
Canal, N. (IQVIA)
Maurino, J. (Roche Farma)

Data:	2021
Resum:	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.
Nota:	Altres ajuts: Medical Department of Roche Farma Spain (ML41397).
Drets:	Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, sempre que no sigui amb finalitats comercials, i sempre que es reconegui l'autoria de l'obra original.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Matèria:	Neuromyelitis optica spectrum disorder ; Stigma ; Quality of life ; Depression ; Patient-reported outcomes
Publicat a:	Patient preference and adherence, Vol. 15 (2021) , p. 713-719, ISSN 1177-889X

DOI: 10.2147/PPA.S305707
PMID: 33880015

7 p, 462.9 KB

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