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CC BY-NC-ND 4.0 · Arq Neuropsiquiatr 2019; 77(05): 341-345
DOI: 10.1590/0004-282X20190051
Article

Employment status of people diagnosed with multiple sclerosis in Brazil

Situação de empregabilidade em pessoas com esclerose múltipla no Brasil
Carolina Martines Estrutti 
1   Universidade Federal de São Paulo, Escola Paulista de Medicina, São Paulo SP, Brasil
,
Gustavo San Martin Elexpe Cardoso
2   Amigos Múltiplos pela Esclerose, Guarulhos SP, Brasil
,
Maykon Anderson Pires de Novais
3   Universidade Federal de São Paulo, Escola Paulista de Medicina, Disciplina de Economia e Gestão em Saúde, São Paulo SP, Brasil
,
Enedina Maria Lobato de Oliveira
4   Universidade Federal de São Paulo, Escola Paulista de Medicina, Disciplina de Neurologia, Ambulatório de Neuroimunologia, São Paulo SP, Brasil
,
Denis Bernardi Bichuetti
4   Universidade Federal de São Paulo, Escola Paulista de Medicina, Disciplina de Neurologia, Ambulatório de Neuroimunologia, São Paulo SP, Brasil
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ABSTRACT

Objective: To describe the employment status of Brazilians with multiple sclerosis (MS).

Methods: Analysis of a cross-sectional online survey including questions on demographic and occupational status at the time of diagnosis and survey completion, and time from the first symptom to diagnosis.

Results: Of those who answered the survey, 804 Brazilians with MS were included. Median age of onset and current age were 28.3 and 36.2 years; median time to diagnosis and disease duration were 2.7 and 7.9 years; 67% held a university degree and 29% finished high school; 94% had a paid occupation contributing to the family income at least once in their lives, 77% were employed at the time of diagnosis but only 59% were employed at the time of survey. Longer disease duration, longer time to diagnosis and younger age at the first symptom, were identified as factors correlated with being unemployed.

Conclusions: The rate of unemployment doubled after the first symptoms of MS, and only 59% of highly-educated people with MS in their productive years were employed. The longer time to diagnosis may imply treatment delay, and strategies focusing on early diagnosis and adequate treatment may favor employment retention and reduce disability related costs, such as social benefits and pension fund use.

RESUMO

Objetivo: Descrever o estado de empregabilidade de uma amostra brasileira de pessoas com esclerose múltipla (EM).

Métodos: Estudo transversal incluindo informações demográficas e ocupacionais no momento do diagnóstico e atual, e o tempo do primeiro sintoma ao diagnóstico.

Resultados: Foram incluídos 804 pacientes com EM, com mediana de idade de início dos sintomas e atual de 28,3 e 36,2 anos; tempo mediano para diagnóstico e duração da doença de 2,7 e 7,9 anos. Desta amostra, 67% possuíam diploma universitário e 29% terminaram o ensino médio. No total, 94% tiveram uma ocupação remunerada pelo menos uma vez na vida, 77% estavam empregados no diagnóstico, mas apenas 59% estavam empregados no momento da pesquisa. Maior duração de doença, maior tempo para o diagnóstico e menor idade no 1° sintoma foram os fatores relacionados ao desemprego.

Conclusões: A taxa de desemprego dobra após os primeiros sintomas da EM, e apenas 59% das pessoas com alto nível educacional com EM em seus anos produtivos estão empregados. Maior tempo para o diagnóstico pode implicar atraso no tratamento, e estratégias com foco no diagnóstico precoce e tratamento adequado podem favorecer a retenção de emprego e reduzir os custos relacionados à doença, como benefícios sociais e uso de fundos de pensão.

Keywords:

Multiple sclerosis - employment, Brazil

Palavras-chave:

Esclerose múltipla - empregabilidade, Brasil


Publication History

Received: 28 August 2018

Accepted: 26 February 2019

Article published online:
16 August 2023

© 2023. Academia Brasileira de Neurologia. This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commecial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/)

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  • References

  • 1 Bienes G, Oliveira EM, Bichuetti DB. Esclerose múltipla. Rev Bras Med. 2014;71:9-14.
  • 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 Sep;9 Suppl 1:S5-48. https://doi.org/10.1016/j.msard.2016.07.003
  • 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):936-44. https://doi.org/10.3109/09638288.2015.1070295
  • 4 Multiple Sclerosis International Federation – MSIF. Principles to promote the quality of life of people with multiple sclerosis. Waltham:: Multiple Sclerosis International Federation; 2014.
  • 5 Moore P, Harding KE, Clarkson H, Pickersgill TP, Wardle M, Robertson NP. Demographic and clinical factors associated with changes in employment in multiple sclerosis. Mult Scler. 2013 Oct;19(12):1647-54. https://doi.org/10.1177/1352458513481396
  • 6 Messmer Uccelli M, Specchia C, Battaglia MA, Miller DM. Factors that influence the employment status of people with multiple sclerosis: a multi-national study. J Neurol. 2009 Dec;256(12):1989-96. https://doi.org/10.1007/s00415-009-5225-0
  • 7 Fantoni-Quinton S, Kwiatkowski A, Vermersch P, Roux B, Hautecoeur P, Leroyer A. Impact of multiple sclerosis on employment and use of job-retention strategies: the situation in France in 2015. J Rehabil Med. 2016 Jun;48(6):535-40. https://doi.org/10.2340/16501977-2093
  • 8 Chiu CY, Chan F, Edward Sharp S, Dutta A, Hartman E, Bezyak J. Employment as a health promotion intervention for persons with multiple sclerosis. Work. 2015;52(4):749-56. https://doi.org/10.3233/WOR-152202
  • 9 Bøe Lunde HM, Telstad W, Grytten N, Kyte L, Aarseth J, Myhr KM, et al. Employment among patients with multiple sclerosis-a population study. PLoS One. 2014 Jul;9(7):e103317. https://doi.org/10.1371/journal.pone.0103317
  • 10 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 Jul;23(8):1123-36. https://doi.org/10.1177/1352458517694432
  • 11 Campbell JD, Ghushchyan V, Brett McQueen R, Cahoon-Metzger S, Livingston T, Vollmer T, et al. Burden of multiple sclerosis on direct, indirect costs and quality of life: national US estimates. Mult Scler Relat Disord. 2014 Mar;3(2):227-36. https://doi.org/10.1016/j.msard.2013.09.004
  • 12 Salter A, Thomas N, Tyry T, Cutter G, Marrie RA. Employment and absenteeism in working-age persons with multiple sclerosis. J Med Econ. 2017 May;20(5):493-502. https://doi.org/10.1080/13696998.2016.1277229
  • 13 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 Aug;77(8):918-26. https://doi.org/10.1136/jnnp.2006.090365
  • 14 da Silva NL, Takemoto ML, 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 Mar;16(1):102. https://doi.org/10.1186/s12913-016-1352-3
  • 15 Vasconcelos CC, Thuler LC, Rodrigues BC, Calmon AB, Alvarenga RM. Multiple sclerosis in Brazil: A systematic review. Clin Neurol Neurosurg. 2016 Dec;151:24-30. https://doi.org/10.1016/j.clineuro.2016.07.011
  • 16 Pereira ABG, Lacativa MCS, Pereira FFC, Alvarenga RMP. Prevalence of multiple sclerosis in Brazil: A systematic review. Mult Scler Relat Disord. 2015 Nov;4(6):572-9. https://doi.org/10.1016/j.msard.2015.08.004
  • 17 Instituto Brasileiro de Geografia e Estatstica - IBGE. Pesquisa Nacional por Amostra de Domicílios Contínua - PNAD Contínua. Rio de Janeiro: Instituto Brasileiro de Geografia e Estatstica; 2018.
  • 18 Confavreux C, Vukusic S. Natural history of multiple sclerosis: a unifying concept. Brain. 2006 Mar;129(Pt 3):606-16. https://doi.org/10.1093/brain/awl007
  • 19 Ziemssen T, Derfuss T, Stefano N, Giovannoni G, Palavra F, Tomic D, et al. Optimizing treatment success in multiple sclerosis. J Neurol. 2016 Jun;263(6):1053-65. https://doi.org/10.1007/s00415-015-7986-y
  • 20 Campagnolo DI, Sun J, You X, Salter A, Laforet G, Fox R. Disease- modifying therapy use and employment status of multiple sclerosis patients: data from the North American Research Committee on Multiple Sclerosis. In: 15th Congress of the European Federation of Neurological Societies, Budapest, Hungary; 2011.
  • 21 Raggi A, Giovannetti AM, Schiavolin S, Brambilla L, Brenna G, Confalonieri PA, et al. Older age, higher perceived disability and depressive symptoms predict the amount and severity of work-related difficulties in persons with multiple sclerosis. Disabil Rehabil. 2018 Apr:1-9. https://doi.org/10.1080/09638288.2018.1461937
  • 22 Solomon AJ, Bourdette DN, Cross AH, Applebee A, Skidd PM, Howard DB, et al. The contemporary spectrum of multiple sclerosis misdiagnosis: A multicenter study. Neurology. 2016 Sep;87(13):1393-9. https://doi.org/10.1212/WNL.20190051201900513152
  • 23 Nicolau ZF, Oliveira EM, Bichuetti DB. Why this is not multiple sclerosis: a case based approach. Arq Neuropsiquiatr. 2015 Dec;73(12):985-92. https://doi.org/10.1590/0004-282X20150163