Subscribe to RSS

DOI: 10.1055/s-0045-1809400
The impact of multiple sclerosis on wellbeing, productivity, and societal relations

Abstract
Background
Multiple sclerosis (MS) is the main cause of nontraumatic neurological disabilities in the population under 50 years of age.
Objective
To evaluate the most prevalent symptoms in a national sample of people with MS and to analyze their correlation with disease characteristics, demographics, quality of life, employment status, and use of social benefits.
Methods
Cross-sectional, online, self-reported survey, concerning demographic and clinical data, employment status, and use of social benefits.
Results
A total of 466 patients answered the survey. The median age at onset was 30 years, the current age, of 39, and disease duration was 8 years. Furthermore, the median patient determined disease steps (PDDS) was 2, which indicates minor to moderate disability. The median MS impact and walking scale scores were 31 and 20%, which denotes minor to moderate quality of life and mobility compromise. Among the participants, 43% suffered fatigue and 51% reported not sleeping well. Unemployed patients had delayed diagnosis and higher disability rates. Furthermore, half of the unemployed patients are receiving some social benefit, compared with only 6.5% of the employed patients.
Conclusion
The current study presents symptom prevalence in a national sample of patients with MS and discloses that those with a diagnosis delay and more disability have higher rates of unemployment and use of social benefits. Strategies for earlier diagnosis and better treatment plans can not only reduce patient disability but, possibly, increase employment retention and reduce the use of social benefits.
Keywords
Multiple Sclerosis - Employment - Insurance, Disability - Social Impact Indicators - Disability StudiesAuthors' Contributions
Conceptualization: VEV, BR, GSME, JF, DBB; Data curation: VEV, DBB; Formal analysis: VEV, JF, DBB; Investigation: VEV, GSME, DBB; Methodology: VEV, BR, GSME, JF, DBB; Project administration: VEV, DBB; Validation: JF; Writing - original draft: VEV, DBB; Writing - review & editing: VEV, BR, GSME, JF.
Data Availability Statement
Data will be available on demand to authors, a condition justified in the manuscript.
Editor-in-Chief: Hélio A. G. Teive 0000-0003-2305-1073.
Associate Editor: Tarso Adoni 0000-0002-5008-2783.
Publication History
Received: 13 June 2024
Accepted: 11 March 2025
Article published online:
20 June 2025
© 2025. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution 4.0 International License, permitting copying and reproduction so long as the original work is given appropriate credit (https://creativecommons.org/licenses/by/4.0/)
Thieme Revinter Publicações Ltda.
Rua Rego Freitas, 175, loja 1, República, São Paulo, SP, CEP 01220-010, Brazil
Vinicius Eduardo Vergani, Bruna Rocha Silveira, Gustavo San Martin Elexpe Cardoso, Jean Faber, Denis Bernardi Bichuetti. The impact of multiple sclerosis on wellbeing, productivity, and societal relations. Arq Neuropsiquiatr 2025; 83: s00451809400.
DOI: 10.1055/s-0045-1809400
-
References
- 1 Bienes G, Oliveira EML, Bichuetti DB. Esclerose Múltipla. Rev Bras Med 2014; 71: 37-45
- 2 Giovannoni G, Butzkueven H, Dhib-Jalbut S, Hobart J, Kobelt G, Pepper G. et al. Brain health: time matters in multiple sclerosis. Mult Scler Relat Disord 2016; 9 (Suppl. 01) S5-S48
- 3 Raggi A, Covelli V, Schiavolin S, Scaratti C, Leonardi M, Willems M. Work-related problems in multiple sclerosis: a literature review on its associates and determinants. Disabil Rehabil 2016; 38 (10) 936-944
- 4 MSIF. Principles to promote the quality of life of people with multiple sclerosis. Available from: https://www.msif.org/wp-content/uploads/2014/09/Principles-to-Promote-the-Quality-of-Life-of-People-with-MS1.pdf 2014
- 5 Tintore M, Cobo-Calvo A, Carbonell P, Arrambide G, Otero-Romero S, Río J. et al. Effect of Changes in MS Diagnostic Criteria Over 25 Years on Time to Treatment and Prognosis in Patients With Clinically Isolated Syndrome. Neurology 2021; 97 (17) e1641-e1652
- 6 Kobelt G, Thompson A, Berg J, Gannedahl M, Eriksson J. MSCOI Study Group, European Multiple Sclerosis Platform. New insights into the burden and costs of multiple sclerosis in Europe. Mult Scler 2017; 23 (08) 1123-1136
- 7 Kobelt G, Teich V, Cavalcanti M, Canzonieri AM. Burden and cost of multiple sclerosis in Brazil. PLoS One 2019; 14 (01) e0208837
- 8 GBD 2016 Neurology Collaborators. Global, regional, and national burden of neurological disorders, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol 2019; 18 (05) 459-480
- 9 Estrutti CM, Cardoso GSME, Novais MAP, Oliveira EML, Bichuetti DB. Employment status of people diagnosed with multiple sclerosis in Brazil. Arq Neuro-Psiquiatr 2019; 77 (05) 341-345
- 10 Silva NLd, Takemoto MLS, Damasceno A, Fragoso YD, Finkelsztejn A, Becker J. et al. Cost analysis of multiple sclerosis in Brazil: a cross-sectional multicenter study. BMC Health Serv Res 2016; 16: 102
- 11 David ACd, Sasaki JE, Ramari C, Tauil CB, Moraes AG, Martins F. et al. Validation of the Brazilian version of the patient-determined disease steps scale in persons with multiple sclerosis. Mult Scler Relat Disord 2019; 30: 208-214
- 12 Lopes J, Kaimen-Maciel DR, Matsuo T. Adaptação Transcultural e Validação da Escala de Impacto de Esclerose Múltipla. Rev Neurocienc 2001; 19 (03) 433-440
- 13 Marangoni BE, Pavan K, Tilbery CP. Cross-cultural adaptation and validation of the 12-item Multiple Sclerosis Walking Scale (MSWS-12) for the Brazilian population. Arq Neuro-Psiquiatr 2012; 70 (12) 922-928
- 14 Toledo FO, Speciali JG, Junior WM, Sobreira CFR. PND66 Cross-cultural adaptation and validation version of the Fatigue Severity Scale (FSS). Value Health 2011; 14: A339
- 15 Azevedo LF, Pereira AC, Dias CC, Agualusa L, Lemos L, Romão J. et al. Tradução, adaptação cultural e estudo multicêntrico de validação de instrumentos para rastreio e avaliação do impacto da dor crónica. Dor Órgão de Expressão Oficial da APED 2007
- 16 Castro LdS. Adaptação e Validação do Índice de Gravidade de Insânia (IGI): Caracterização Populacional, Valores Normativos e Aspectos Associados. [Tese (Mestrado em Ciências)]. São Paulo: Escola Paulista de Medicina; Universidade Federal de São Paulo; 2011
- 17 Dua T, Romani P. Atlas: Multiple Sclerosis Resources in the World 2008. Available from: http://www.who.int/mental_health/neurology/atlas_multiple_sclerosis_resources_2008/en/ 2008 , accessed March 4th 2014).
- 18 Pereira ABdG, Lacativa MCS, Pereira FFdC, Alvarenga RMP. Prevalence of multiple sclerosis in Brazil: A systematic review. Mult Scler Relat Disord 2015; 4 (06) 572-579
- 19 Ministério da Saúde SdAàS. PORTARIA CONJUNTA N° 1, DE 07 DE JANEIRO DE 2022. PROTOCOLO CLÍNICO E DIRETRIZES TERAPÊUTICAS: ESCLEROSE MÚLTIPLA. Available from: https://www.gov.br/saude/pt-br/assuntos/protocolos-clinicos-e-diretrizes-terapeuticas-pcdt/arquivos/2022/portal_portaria-conjunta-no-1-pcdt_esclerose-multipla.pdf 2022 , accessed April 16th 2023).
- 20 Amtmann D, Bamer AM, Kim J, Chung H, Salem R. People with multiple sclerosis report significantly worse symptoms and health related quality of life than the US general population as measured by PROMIS and NeuroQoL outcome measures. Disabil Health J 2018; 11 (01) 99-107
- 21 Kobelt G, Berg J, Lindgren P, Fredrikson S, Jönsson B. Costs and quality of life of patients with multiple sclerosis in Europe. J Neurol Neurosurg Psychiatry 2006; 77 (08) 918-926
- 22 Tintore M, Arrambide G, Otero-Romero S, Carbonell-Mirabent P, Río J, Tur C. et al. The long-term outcomes of CIS patients in the Barcelona inception cohort: Looking back to recognize aggressive MS. Mult Scler 2020; 26 (13) 1658-1669
- 23 Montalban X, Gold R, Thompson AJ, Otero-Romero S, Amato MP, Chandraratna D. et al. ECTRIMS/EAN Guideline on the pharmacological treatment of people with multiple sclerosis. Mult Scler 2018; 24 (02) 96-120
- 24 Rae-Grant A, Day GS, Marrie RA, Rabinstein A, Cree BAC, Gronseth GS. et al. Practice guideline recommendations summary: Disease-modifying therapies for adults with multiple sclerosis: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology 2018; 90 (17) 777-788
- 25 Marques VD, Passos GRD, Mendes MF, Callegaro D, Lana-Peixoto MA, Comini-Frota ER. et al. Brazilian Consensus for the Treatment of Multiple Sclerosis: Brazilian Academy of Neurology and Brazilian Committee on Treatment and Research in Multiple Sclerosis. Arq Neuro-Psiquiatr 2018; 76 (08) 539-554