Multiple sclerosis risk perception and acceptance for Brazilian patients

Denis Bernardi Bichuetti; Carolina Azze Franco; Isaac Elias; Andreia C. R. Mendonça; Lorraine Fiama Diniz Carvalho; Denise Sisterolli Diniz; Carmen Tur; Mar Tintoré; Enedina Maria Lobato de Oliveira

doi:10.1590/0004-282X20170167

Arquivos de Neuro-Psiquiatria, Inhaltsverzeichnis

CC BY-NC-ND 4.0 · Arq Neuropsiquiatr 2018; 76(01): 6-12
DOI: 10.1590/0004-282X20170167

ARTICLE

Multiple sclerosis risk perception and acceptance for Brazilian patients

Percepção e aceitação de risco em pacientes brasileiros com esclerose múltipla

Denis Bernardi Bichuetti

¹Universidade Federal de São Paulo, Disciplina de Neurologia, São Paulo SP, Brasil;

,

Carolina Azze Franco

¹Universidade Federal de São Paulo, Disciplina de Neurologia, São Paulo SP, Brasil;

,

Isaac Elias

¹Universidade Federal de São Paulo, Disciplina de Neurologia, São Paulo SP, Brasil;

,

Andreia C. R. Mendonça

²Universidade Federal de Goiás, Faculdade Estácio de Sá de Goiás,Centro de Referência e Investigação em Esclerose Múltipla, Goiânia GO, Brasil;

,

Lorraine Fiama Diniz Carvalho

²Universidade Federal de Goiás, Faculdade Estácio de Sá de Goiás,Centro de Referência e Investigação em Esclerose Múltipla, Goiânia GO, Brasil;

,

Denise Sisterolli Diniz

³Universidade Federal de Goiás,Centro de Referência e Investigação em Esclerose Múltipla, Goiânia GO, Brasil;

,

Carmen Tur

⁴Universitat Autònoma de Barcelona, Hospital Universitari Valld’Hebron, Centre of Catalonia, Department of Neurology-Neuroimmunology and Multiple Sclerosis, Barcelona Spain;

⁵University College London, Institute of Neurology, Department of Neuroinflammation, London, United Kingdom.

,

Mar Tintoré

⁴Universitat Autònoma de Barcelona, Hospital Universitari Valld’Hebron, Centre of Catalonia, Department of Neurology-Neuroimmunology and Multiple Sclerosis, Barcelona Spain;

,

Enedina Maria Lobato de Oliveira

¹Universidade Federal de São Paulo, Disciplina de Neurologia, São Paulo SP, Brasil;

› Institutsangaben

Abstract

ABSTRACT

The perception of multiple sclerosis (MS) severity and risk associated with therapies might influence shared decision making in different countries. We investigated the perception of MS severity and factors associated with risk acceptance in Brazil in 96 patients with relapsing-remitting MS using a standardized questionnaire and compared this with two European cohorts. Multiple sclerosis was perceived as a very severe disease and the risk of developing progressive multifocal leukoencephalopathy due to natalizumab was seen as moderate to high. Seventy-six percent considered a risk of 1:1,000, or higher, an impediment for natalizumab use. Older age was the only variable associated with higher risk acceptance and our patients showed a more conservative profile than German and Spanish patients. Our patients perceived MS severity and progressive multifocal leukoencephalopathy risk similarly to elsewhere, but their willingness to take risks was more conservative. This should be considered when discussing therapeutic options and it might have an impact on guideline adaptations.

RESUMO

A percepção de gravidade da esclerose múltipla (EM) e riscos associado a terapias podem influenciar a escolha de tratamento em diferentes países. Investigamos a percepção da gravidade da EM e fatores associados à aceitação de risco em 96 pacientes com EM remitente-recorrentecom um questionário e comparamos com duas coortes europeias. A EM foi percebida como muito grave e o risco de desenvolver leucoencefalopatia multifocal progressiva devido ao natalizumabe, como moderado a alto, sendo que76% consideraram um risco de 1: 1.000 ou maior como impeditivo deseu uso. Idade mais avançada foi a única variável associada àaceitação de risco mais elevado e nossos pacientes revelaram um perfil mais conservador do que os pacientes alemães e espanhóis. Esses dados devem ser considerados ao discutir opções terapêuticas e pode ter impacto nas adaptações de diretrizes locais.

multiple sclerosis - natalizumab - risk-taking - risk assessment, decision making

esclerose múltipla - natalizumabe - assunção de riscos - medição de risco - tomada de decisões

Volltext

Referenzen

References
1 Comi G, Radaelli M, Soelberg Sorensen P. Evolving concepts in the treatment of relapsing multiple sclerosis. Lancet. 2017;389(1076):1347-56. https://doi.org/10.1016/S0140-6736(16)32388-1
2 Kobelt G, Berg J, Atherly D, Hadjimichael O. Costs and quality of life in multiple sclerosis: a cross-sectional study in the United States. Neurology. 2006;66(11):1696-702. https://doi.org/10.1212/01.wnl.0000218309.01322.5c
3 Comini-Frota ER, Vasconcelos CC, Mendes MF. Guideline for multiple sclerosis treatment in Brazil: Consensus from the Neuroimmunology Scientific Department of the Brazilian Academy of Neurology. Arq Neuropsiquiatr. 2017;75(1):57-65. https://doi.org/10.1590/0004-282x20160185
4 Heesen C, Köpke S, Solari A, Geiger F, Kasper J. Patient autonomy in multiple sclerosis: possible goals and assessment strategies. J Neurol Sci. 2013;331(1-2):2-9. https://doi.org/10.1016/j.jns.2013.02.018
5 Río J, Castilló J, Rovira A, Tintoré M, Sastre-Garriga J, Horga A et al. Measures in the first year of therapy predict the response to interferon beta in MS. Mult Scler. 2009;15(7):848-53. https://doi.org/10.1177/1352458509104591
6 Freedman MS, Selchen D, Arnold DL, Prat A, Banwell B, Yeung M, et al. Treatment optimization in MS: Canadian MS Working Group updated recommendations. Can J Neurol Sci. 2013;40(3):307-23. https://doi.org/10.1017/S0317167100014244
7 Stangel M, Penner IK, Kallmann BA, Lukas C, Kieseier BC. Towards the implementation of ‘no evidence of disease activity’ in multiple sclerosis treatment: the multiple sclerosis decision model. Ther Adv Neurol Disorder. 2015;8(1):3-13. https://doi.org/10.1177/1756285614560733
8 Cocco E, Caoci A, Lorefice L, Marrosu MG. Perception of risk and shared decision making process in multiple sclerosis. Expert Rev Neurother. 2017;17(2):173-80. https://doi.org/10.1080/14737175.2016.1217155
9 Heesen C, Solari A, Giordano A, Kasper J, Köpke S. Decisions on multiple sclerosis immunotherapy: new treatment complexities urge patient engagement. J Neurol Sci. 2011;306(1-2):192-7. https://doi.org/10.1016/j.jns.2010.09.012
10 Tur C, Tintoré M, Vidal-Jordana A, Castilló J, Galán I, Río J et al. Natalizumab discontinuation after PML risk stratification: outcome from a shared and informed decision. Mult Scler. 2012;18(8):1193-6. https://doi.org/10.1177/1352458512439238
11 McGuigan C, Craner M, Guadagno J, Kapoor R, Mazibrada G, Molyneux P et al. Stratification and monitoring of natalizumab-associated progressive multifocal leukoencephalopathy risk: recommendations from an expert group. J Neurol Neurosurg Psychiatry. 2016;87(2):117-25. https://doi.org/10.1136/jnnp-2015-311100
12 Heesen C, Kleiter I, Nguyen F, Schäffler N, Kasper J, Köpke S et al. Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists. Mult Scler. 2010;16(12):1507-12. https://doi.org/10.1177/1352458510379819
13 Tur C, Tintoré M, Vidal-Jordana Á, Bichuetti D, Nieto González P, Arévalo MJ et al. Risk acceptance in multiple sclerosis patients on natalizumab treatment. PLoS One. 2013;8(12):e82796. https://doi.org/10.1371/journal.pone.0082796
14 Ministério da Saúde (BR). Portaria nº 1.505, de 29 de dezembro de 2014. Aprova o Protocolo Clínico e Diretrizes Terapêuticas da Esclerose Múltipla. Diário Oficial União. 30 dez 2014.
15 Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology. 1983;33(11):1444-52. https://doi.org/10.1212/WNL.33.11.1444
16 Costa Junior PT, McCrae RR. NEO PI-R: Inventário de personalidade Neo revisado; e Inventário de cinco fatores Neo revisado: NEO-FFI-R (versão curta). São Paulo: Vetor; 2010.
17 Johnson RA, Wichern DW. Applied multivariate statistical analysis. 5th ed. Upper Saddle River, NJ: Prentice-Hall; 2002.
18 Raykov T, Marcoulides GA. An introduction to applied multivariate analysis. New York, NY: Routledge; 2012.
19 Bruce JM, Lynch SG. Personality traits in multiple sclerosis: association with mood and anxiety disorders. J Psychosom Res. 2011;70(5):479-85. https://doi.org/10.1016/j.jpsychores.2010.12.010
20 Taillefer SS, Kirmayer LJ, Robbins JM, Lasry JC. Correlates of illness worry in chronic fatigue syndrome. J Psychosom Res. 2003;54(4):331-7. https://doi.org/10.1016/S0022-3999(02)00332-X
21 Fox RJ, Salter A, Alster JM, Dawson NV, Kattan MW, Miller D, et al. Risk tolerance to MS therapies: Survey results from the NARCOMS registry. Mult Scler Relat Disord. 2015;4(3):241-9. https://doi.org/10.1016/j.msard.2015.03.003
22 Polman CH, O’Connor PW, Havrdova E, Hutchinson M, Kappos L, Miller DH et al. A randomized, placebo-controlled trial of natalizumab for relapsing multiple sclerosis. N Engl J Med. 2006;354(9):899-910. https://doi.org/10.1056/NEJMoa044397
23 Ruggieri RM, Palermo R, Vitello G, Gennuso M, Settipani N, Piccoli F. Cognitive impairment in patients suffering from relapsing-remitting multiple sclerosis with EDSS < or = 3.5. Acta Neurol Scand. 2003;108(5):323-6. https://doi.org/10.1034/j.1600-0404.2003.00157.x
24 Gray V, Arnett P. Aging with multiple sclerosis: cognitive, emotional and neuropathological considerations. Neurodegener Dis Manag. 2014;4(2):187-94. https://doi.org/10.2217/nmt.14.12