Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder

References

• Marignier R, Cobo Calvo A, Vukusic S. Neuromyelitis optica and neuromyelitis optica spectrum disorders. Curr Opin Neurol. 2017;30(3):208–215. doi:10.1097/WCO.0000000000000455
   PubMed Web of Science ®Google Scholar
• Borisow N, Mori M, Kuwabara S, Scheel M, Paul F. Diagnosis and treatment of NMO spectrum disorder and MOG-encephalomyelitis. Front Neurol. 2018;9:888. doi:10.3389/fneur.2018.00888
   PubMed Web of Science ®Google Scholar
• Papp V, Magyari M, Aktas O, et al. Worldwide incidence and prevalence of neuromyelitis optica: a systematic review. Neurology. 2021;96(2):59–77. doi:10.1212/WNL.0000000000011153
   PubMed Web of Science ®Google Scholar
• Eaneff S, Wang V, Hanger M, et al. Patient perspectives on neuromyelitis optica spectrum disorders: data from the PatientsLikeMe online community. Mult Scler Relat Disord. 2017;17:116–122. doi:10.1016/j.msard.2017.07.014
   PubMed Web of Science ®Google Scholar
• Jarius S, Paul F, Weinshenker BG, et al. Neuromyelitis optica. Nat Rev Dis Primers. 2020;6(1):85. doi:10.1038/s41572-020-0214-9
   PubMed Web of Science ®Google Scholar
• Methley AM, Mutch K, Moore P, Jacob A. Development of a patient-centred conceptual framework of health-related quality of life in neuromyelitis optica: a qualitative study. Health Expect. 2017;20(1):47–58. doi:10.1111/hex.12432
   Web of Science ®Google Scholar
• Banerjee A, Ng J, Coleman J, Ospina JP, Mealy M, Levy M. Outcomes from acute attacks of neuromyelitis optica spectrum disorder correlate with severity of attack, age and delay to treatment. Mult Scler Relat Disord. 2019;28:60–63. doi:10.1016/j.msard.2018.12.010
   PubMed Web of Science ®Google Scholar
• European Federation of Neurological Associations (EFNA). Survey on stigma and neurological disorder; 2020. Available from: https://www.efna.net/wp-content/uploads/2020/07/SurveyReport2020.pdf. Accessed April 2, 2021.
   Google Scholar
• Burgener SC, Berger B. Measuring perceived stigma in persons with progressive neurological disease: Alzheimer’s dementia and Parkinson’s disease. Dementia. 2008;7(1):31–53.
   Google Scholar
• Rao D, Choi SW, Victorson D, et al. Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI). Qual Life Res. 2009;18(5):585–595. doi:10.1007/s11136-009-9475-1
   PubMed Web of Science ®Google Scholar
• Ochoa-Morales A, Fresan-Orellana A, Hernández-Mojica T, et al. Perceived discrimination in patients with multiple sclerosis and depressive symptomatology. Mult Scler Relat Disord. 2020;48:102705. doi:10.1016/j.msard.2020.102705
   Web of Science ®Google Scholar
• Elliot VL, Morgan D, Kosteniuk J, et al. Health-related stigma of noncommunicable neurological disease in rural adult populations: a scoping review. Health Soc Care Community. 2019;27(4):e158–e188. doi:10.1111/hsc.12694
   Web of Science ®Google Scholar
• Anagnostouli M, Katsavos S, Artemiadis A, et al. Determinants of stigma in a cohort of hellenic patients suffering from multiple sclerosis: a cross-sectional study. BMC Neurol. 2016;16:101. doi:10.1186/s12883-016-0621-4
   PubMed Web of Science ®Google Scholar
• Cadden MH, Arnett PA, Tyry TM, et al. Judgment hurts: the psychological consequences of experiencing stigma in multiple sclerosis. Soc Sci Med. 2018;208:158–164. doi:10.1016/j.socscimed.2018.01.015
   PubMed Web of Science ®Google Scholar
• Pérez-Miralles F, Prefasi D, García-Merino A, et al. Perception of stigma in patients with primary progressive multiple sclerosis. Mult Scler J Exp Transl Clin. 2019;5(2):2055217319852717. doi:10.1177/2055217319852717
   Google Scholar
• Maurino J, Martínez-Ginés ML, García-Domínguez JM, et al. Workplace difficulties, health-related quality of life, and perception of stigma from the perspective of patients with multiple sclerosis. Mult Scler Relat Disord. 2020;41:102046. doi:10.1016/j.msard.2020.102046
   PubMed Web of Science ®Google Scholar
• Dennison L, Yardley L, Devereux A, et al. Experiences of adjusting to early stage multiple sclerosis. J Health Psychol. 2011;16(3):478–488. doi:10.1177/1359105310384299
   PubMed Web of Science ®Google Scholar
• Shi Z, Chen H, Lian Z, et al. Factors that impact health-related quality of life in neuromyelitis optica spectrum disorder: anxiety, disability, fatigue and depression. J Neuroimmunol. 2016;293:54–58. doi:10.1016/j.jneuroim.2016.02.011
   Web of Science ®Google Scholar
• Nakazawa K, Noda T, Ichikura K, et al. Resilience and depression/anxiety symptoms in multiple sclerosis and neuromyelitis optica spectrum disorder. Mult Scler Relat Disord. 2018;25:309–315. doi:10.1016/j.msard.2018.08.023
   PubMed Web of Science ®Google Scholar
• Beekman J, Keisler A, Pedraza O, et al. Neuromyelitis optica spectrum disorder: patient experience and quality of life. Neurol Neuroimmunol Neuroinflamm. 2019;6(4):e580. doi:10.1212/NXI.0000000000000580
   PubMed Web of Science ®Google Scholar
• Shin JS, Kwon YN, Choi Y, et al. Comparison of psychiatric disturbances in patients with multiple sclerosis and neuromyelitis optica. Medicine (Baltimore). 2019;98(38):e17184. doi:10.1097/MD.0000000000017184
   Web of Science ®Google Scholar
• Wingerchuk DM, Banwell B, Bennett JL, et al. International consensus diagnostic criteria for neuromyelitis optica spectrum disorders. Neurology. 2015;85(2):177–189. doi:10.1212/WNL.0000000000001729
   PubMed Web of Science ®Google Scholar
• Molina Y, Choi SW, Cella D, et al. The Stigma Scale for Chronic Illnesses 8-item version (SSCI-8): development, validation and use across neurological conditions. Int J Behav Med. 2013;20:450–460. doi:10.1007/s12529-012-9243-4
   PubMed Web of Science ®Google Scholar
• Ballesteros J, Martínez-Ginés ML, García-Domínguez JM, et al. Assessing stigma in multiple sclerosis: psychometric properties of the Eight-Item Stigma Scale for Chronic Illness (SSCI-8). Int J MS Care. 2019;21(5):195–199. doi:10.7224/1537-2073.2018-053
   PubMedGoogle Scholar
• Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology. 1983;33(11):1444–1452. doi:10.1212/wnl.33.11.1444
   PubMed Web of Science ®Google Scholar
• Hobart J, Lamping D, Fitzpatrick R, et al. The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Brain. 2001;124:962–973. doi:10.1093/brain/124.5.962
   PubMed Web of Science ®Google Scholar
• Benedict RH, Fishman I, McClellan MM, et al. Validity of the beck depression inventory-fast screen in multiple sclerosis. Mult Scler. 2003;9:393–396. doi:10.1191/1352458503ms902oa
   PubMed Web of Science ®Google Scholar
• Archibald CJ, McGrath P, Ritvo PG, et al. Pain prevalence, severity and impact in a clinic sample of multiple sclerosis patients. Pain. 1994;58(1):89–93. doi:10.1016/0304-3959(94)90188-0
   PubMed Web of Science ®Google Scholar
• Benito-León J, Martínez-Martín P, Frades B, et al. Impact of fatigue in multiple sclerosis: the fatigue impact scale for daily use (D-FIS). Mult Scler. 2007;13(5):645–651. doi:10.1177/1352458506073528
   PubMed Web of Science ®Google Scholar
• Mutch K, Methley A, Moore P, et al. Life on hold: the experience of living with neuromyelitis optica. Disabil Rehabil. 2014;36(13):1100–1107. doi:10.3109/09638288.2013.833301
   PubMed Web of Science ®Google Scholar
• Kitley J, Leite MI, Nakashima I, et al. Prognostic factors and disease course in aquaporin-4 antibody-positive patients with neuromyelitis optica spectrum disorder from the United Kingdom and Japan. Brain. 2012;135(Pt6):1834–1849. doi:10.1093/brain/aws109
   Web of Science ®Google Scholar
• Barzegar M, Badihian S, Mirmosayyeb O, et al. Comparative study of quality of life, anxiety, depression, and fatigue among patients with neuromyelitis optica spectrum disorder and multiple sclerosis: the first report from Iran. Mult Scler Relat Disord. 2018;22:161–165. doi:10.1016/j.msard.2018.04.009
   PubMed Web of Science ®Google Scholar
• Ajmera MR, Boscoe A, Mauskopf J, et al. Evaluation of comorbidities and health care resource use among patients with highly active neuromyelitis optica. J Neurol Sci. 2018;384:96–103. doi:10.1016/j.jns.2017.11.022
   PubMed Web of Science ®Google Scholar
• Fernández VC, Alonso N, Melamud L, et al. Psychiatric comorbidities and suicidality among patients with neuromyelitis optica spectrum disorders in Argentina. Mult Scler Relat Disord. 2018;19:40–43. doi:10.1016/j.msard.2017.11.002
   Web of Science ®Google Scholar
• Pérez-Miralles F, Prefasi D, García-Merino A, et al. Short-term data on disease activity, cognition, mood, stigma and employment outcomes in a cohort of patients with primary progressive multiple sclerosis (UPPMS study). Mult Scler Relat Disord. 2021;50:102860. doi:10.1016/j.msard.2021.102860
   Web of Science ®Google Scholar
• Broersma F, Oeseburg B, Dijkstra J, et al. The impact of self-perceived limitations, stigma and sense of coherence on quality of life in multiple sclerosis patients: results of a cross-sectional study. Clin Rehabil. 2018;32:536–545. doi:10.3389/fneur.2018.00888
   PubMed Web of Science ®Google Scholar
• Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177. doi:10.1186/s13023-017-0730-1
   PubMed Web of Science ®Google Scholar