Skip to main content
Top
Published in: BMC Neurology 1/2014

Open Access 01-12-2014 | Research article

Social participation in patients with multiple sclerosis: correlations between disability and economic burden

Authors: Arnaud Kwiatkowski, Jean-Pierre Marissal, Madani Pouyfaucon, Patrick Vermersch, Patrick Hautecoeur, Benoît Dervaux

Published in: BMC Neurology | Issue 1/2014

Login to get access

Abstract

Background

Economic costs related to treatment of multiple sclerosis (MS) must be justified by health state, quality of life (QOL) and social participation improvement. This study aims to describe correlations between social participation, economic costs, utility and MS-specific QOL in a sample of patients with MS (pwMS).

Methods

We interviewed 42 pwMS receiving natalizumab and collected clinical data, direct medical costs, productivity loss, utility (EQ5D-VAS), MS-specific QOL (SEP-59), social participation with the Impact on Participation and Autonomy questionnaire (IPA). We performed descriptive and correlation analyses.

Results

41 pwMS, with a mean Expanded Disability Status Scale (EDSS) score of 4.0, completed questionnaires. Mean annual global cost per patient was 68448 +/-33374 Euros and increased with EDSS (r = 0.644), utility (r = -0.456) and IPA (r = 0.519-0.671) worsening. Mean utility was 0.52 +/- 0.28. Correlations between IPA and QOL (EQ5D-VAS or SEP-59) were observed (r = -0.53 to -0.78). Association between QOL and EDSS was smaller (EQ5D-VAS) or absent. Productivity losses were poorly correlated to EDSS (r = 0.375).

Conclusion

Moderate to strong correlations of social participation with clinical status (EDSS), QOL, utility and economic costs encourage exploring better these links in larger cohorts. The stronger correlation between social participation and QOL than between EDSS and QOL needs to be confirmed.
Appendix
Available only for authorised users
Literature
1.
go back to reference Compston A, Coles A: Multiple sclerosis. Lancet. 2002, 359: 1221-1231. 10.1016/S0140-6736(02)08220-X.CrossRefPubMed Compston A, Coles A: Multiple sclerosis. Lancet. 2002, 359: 1221-1231. 10.1016/S0140-6736(02)08220-X.CrossRefPubMed
2.
go back to reference Cohen JA, Reingold SC, Polman CH, Wolinsky JS, International Advisory Committee on Clinical Trials in Multiple Sclerosis: Disability outcome measures in multiple sclerosis clinical trials: current status and future prospects. Lancet Neurol. 2012, 11: 467-476. 10.1016/S1474-4422(12)70059-5.CrossRefPubMed Cohen JA, Reingold SC, Polman CH, Wolinsky JS, International Advisory Committee on Clinical Trials in Multiple Sclerosis: Disability outcome measures in multiple sclerosis clinical trials: current status and future prospects. Lancet Neurol. 2012, 11: 467-476. 10.1016/S1474-4422(12)70059-5.CrossRefPubMed
3.
go back to reference Pfleger CCH, Flachs EM, Koch-Henriksen N: Social consequences of multiple sclerosis (1): early pension and temporary unemployment–a historical prospective cohort study. Mult Scler. 2010, 16: 121-126. 10.1177/1352458509352196.CrossRefPubMed Pfleger CCH, Flachs EM, Koch-Henriksen N: Social consequences of multiple sclerosis (1): early pension and temporary unemployment–a historical prospective cohort study. Mult Scler. 2010, 16: 121-126. 10.1177/1352458509352196.CrossRefPubMed
4.
go back to reference Kierkegaard M, Einarsson U, Gottberg K, von Koch L, Holmqvist LW: The relationship between walking, manual dexterity, cognition and activity/participation in persons with multiple sclerosis. Mult Scler. 2012, 18: 639-646. 10.1177/1352458511426736.CrossRefPubMed Kierkegaard M, Einarsson U, Gottberg K, von Koch L, Holmqvist LW: The relationship between walking, manual dexterity, cognition and activity/participation in persons with multiple sclerosis. Mult Scler. 2012, 18: 639-646. 10.1177/1352458511426736.CrossRefPubMed
5.
go back to reference Clavelou P, Auclair C, Taithe F, Gerbaud L: Quality of life in multiple sclerosis: theoretical and practical aspects. Rev Neurol (Paris). 2009, 165 (2): F115-124. Clavelou P, Auclair C, Taithe F, Gerbaud L: Quality of life in multiple sclerosis: theoretical and practical aspects. Rev Neurol (Paris). 2009, 165 (2): F115-124.
6.
go back to reference 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 Psychiatr. 2006, 77: 918-926. 10.1136/jnnp.2006.090365.CrossRefPubMedPubMedCentral 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 Psychiatr. 2006, 77: 918-926. 10.1136/jnnp.2006.090365.CrossRefPubMedPubMedCentral
7.
go back to reference Polman CH, O’Connor PW, Havrdova E, Hutchinson M, Kappos L, Miller DH, Phillips JT, Lublin FD, Giovannoni G, Wajgt A, Toal M, Lynn F, Panzara MA, Sandrock AW: A randomized, placebo-controlled trial of natalizumab for relapsing multiple sclerosis. N Engl J Med. 2006, 354: 899-910. 10.1056/NEJMoa044397.CrossRefPubMed Polman CH, O’Connor PW, Havrdova E, Hutchinson M, Kappos L, Miller DH, Phillips JT, Lublin FD, Giovannoni G, Wajgt A, Toal M, Lynn F, Panzara MA, Sandrock AW: A randomized, placebo-controlled trial of natalizumab for relapsing multiple sclerosis. N Engl J Med. 2006, 354: 899-910. 10.1056/NEJMoa044397.CrossRefPubMed
8.
go back to reference Kappos L, Radue E-W, O’Connor P, Polman C, Hohlfeld R, Calabresi P, Selmaj K, Agoropoulou C, Leyk M, Zhang-Auberson L, Burtin P, FREEDOMS Study Group: A placebo-controlled trial of oral fingolimod in relapsing multiple sclerosis. N Engl J Med. 2010, 362: 387-401. 10.1056/NEJMoa0909494.CrossRefPubMed Kappos L, Radue E-W, O’Connor P, Polman C, Hohlfeld R, Calabresi P, Selmaj K, Agoropoulou C, Leyk M, Zhang-Auberson L, Burtin P, FREEDOMS Study Group: A placebo-controlled trial of oral fingolimod in relapsing multiple sclerosis. N Engl J Med. 2010, 362: 387-401. 10.1056/NEJMoa0909494.CrossRefPubMed
9.
go back to reference Cohen JA, Barkhof F, Comi G, Hartung H-P, Khatri BO, Montalban X, Pelletier J, Capra R, Gallo P, Izquierdo G, Tiel-Wilck K, de Vera A, Jin J, Stites T, Wu S, Aradhye S, Kappos L, TRANSFORMS Study Group: Oral fingolimod or intramuscular interferon for relapsing multiple sclerosis. N Engl J Med. 2010, 362: 402-415. 10.1056/NEJMoa0907839.CrossRefPubMed Cohen JA, Barkhof F, Comi G, Hartung H-P, Khatri BO, Montalban X, Pelletier J, Capra R, Gallo P, Izquierdo G, Tiel-Wilck K, de Vera A, Jin J, Stites T, Wu S, Aradhye S, Kappos L, TRANSFORMS Study Group: Oral fingolimod or intramuscular interferon for relapsing multiple sclerosis. N Engl J Med. 2010, 362: 402-415. 10.1056/NEJMoa0907839.CrossRefPubMed
10.
go back to reference Naci H, Fleurence R, Birt J, Duhig A: Economic burden of multiple sclerosis: a systematic review of the literature. Pharmacoeconomics. 2010, 28: 363-379. 10.2165/11532230-000000000-00000.CrossRefPubMed Naci H, Fleurence R, Birt J, Duhig A: Economic burden of multiple sclerosis: a systematic review of the literature. Pharmacoeconomics. 2010, 28: 363-379. 10.2165/11532230-000000000-00000.CrossRefPubMed
11.
go back to reference Manouchehrinia A, Constantinescu CS: Cost-effectiveness of disease-modifying therapies in multiple sclerosis. Curr Neurol Neurosci Rep. 2012, 12: 592-600. 10.1007/s11910-012-0291-6.CrossRefPubMed Manouchehrinia A, Constantinescu CS: Cost-effectiveness of disease-modifying therapies in multiple sclerosis. Curr Neurol Neurosci Rep. 2012, 12: 592-600. 10.1007/s11910-012-0291-6.CrossRefPubMed
14.
go back to reference Wundes A, Brown T, Bienen EJ, Coleman CI: Contribution of intangible costs to the economic burden of multiple sclerosis. J Med Econ. 2010, 13: 626-632. 10.3111/13696998.2010.525989.CrossRefPubMed Wundes A, Brown T, Bienen EJ, Coleman CI: Contribution of intangible costs to the economic burden of multiple sclerosis. J Med Econ. 2010, 13: 626-632. 10.3111/13696998.2010.525989.CrossRefPubMed
15.
go back to reference Polman CH, Reingold SC, Banwell B, Clanet M, Cohen JA, Filippi M, Fujihara K, Havrdova E, Hutchinson M, Kappos L, Lublin FD, Montalban X, O’Connor P, Sandberg-Wollheim M, Thompson AJ, Waubant E, Weinshenker B, Wolinsky JS: Diagnostic criteria for multiple sclerosis: Revisions to the McDonald criteria. Ann Neurol. 2010, 2011 (69): 292-302. Polman CH, Reingold SC, Banwell B, Clanet M, Cohen JA, Filippi M, Fujihara K, Havrdova E, Hutchinson M, Kappos L, Lublin FD, Montalban X, O’Connor P, Sandberg-Wollheim M, Thompson AJ, Waubant E, Weinshenker B, Wolinsky JS: Diagnostic criteria for multiple sclerosis: Revisions to the McDonald criteria. Ann Neurol. 2010, 2011 (69): 292-302.
16.
go back to reference Cardol M, de Haan RJ, van den Bos GA, de Jong BA, de Groot IJ: The development of a handicap assessment questionnaire: the Impact on Participation and Autonomy (IPA). Clin Rehabil. 1999, 13: 411-419. 10.1191/026921599668601325.CrossRefPubMed Cardol M, de Haan RJ, van den Bos GA, de Jong BA, de Groot IJ: The development of a handicap assessment questionnaire: the Impact on Participation and Autonomy (IPA). Clin Rehabil. 1999, 13: 411-419. 10.1191/026921599668601325.CrossRefPubMed
17.
go back to reference Vazirinejad R, Lilley JM, Ward CD: The "Impact on Participation and Autonomy": acceptability of the English version in a multiple sclerosis outpatient setting. Mult Scler. 2003, 9: 612-615. 10.1191/1352458503ms936oa.CrossRefPubMed Vazirinejad R, Lilley JM, Ward CD: The "Impact on Participation and Autonomy": acceptability of the English version in a multiple sclerosis outpatient setting. Mult Scler. 2003, 9: 612-615. 10.1191/1352458503ms936oa.CrossRefPubMed
18.
go back to reference Sibley A, Kersten P, Ward CD, White B, Mehta R, George S: Measuring autonomy in disabled people: Validation of a new scale in a UK population. Clin Rehabil. 2006, 20: 793-803. 10.1177/0269215506070808.CrossRefPubMed Sibley A, Kersten P, Ward CD, White B, Mehta R, George S: Measuring autonomy in disabled people: Validation of a new scale in a UK population. Clin Rehabil. 2006, 20: 793-803. 10.1177/0269215506070808.CrossRefPubMed
19.
go back to reference Poulin V, Desrosiers J: Validation of the French translation of the Impact on Participation and Autonomy questionnaire (IPAQ). Can J Occup Ther. 2010, 77: 159-166. 10.2182/cjot.2010.77.3.5.CrossRefPubMed Poulin V, Desrosiers J: Validation of the French translation of the Impact on Participation and Autonomy questionnaire (IPAQ). Can J Occup Ther. 2010, 77: 159-166. 10.2182/cjot.2010.77.3.5.CrossRefPubMed
20.
go back to reference Chevalier J, de Pouvourville G: Valuing EQ-5D using time trade-off in France. Eur J Health Econ. 2013, 14: 57-66. 10.1007/s10198-011-0351-x.CrossRefPubMed Chevalier J, de Pouvourville G: Valuing EQ-5D using time trade-off in France. Eur J Health Econ. 2013, 14: 57-66. 10.1007/s10198-011-0351-x.CrossRefPubMed
21.
go back to reference Vernay D, Gerbaud L, Biolay S, Coste J, Debourse J, Aufauvre D, Beneton C, Colamarino R, Glanddier PY, Dordain G, Clavelou P: Quality of life and multiple sclerosis: validation of the french version of the self-questionnaire (SEP-59). Rev Neurol (Paris). 2000, 156: 247-263. Vernay D, Gerbaud L, Biolay S, Coste J, Debourse J, Aufauvre D, Beneton C, Colamarino R, Glanddier PY, Dordain G, Clavelou P: Quality of life and multiple sclerosis: validation of the french version of the self-questionnaire (SEP-59). Rev Neurol (Paris). 2000, 156: 247-263.
22.
go back to reference Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW: A health-related quality of life measure for multiple sclerosis. Qual Life Res. 1995, 4: 187-206. 10.1007/BF02260859.CrossRefPubMed Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW: A health-related quality of life measure for multiple sclerosis. Qual Life Res. 1995, 4: 187-206. 10.1007/BF02260859.CrossRefPubMed
23.
go back to reference Casado V, Romero L, Gubieras L, Alonso L, Moral E, Martinez-Yelamos S, Martinez-Yelamos A, Carmona O, Arbizu T: An approach to estimating the intangible costs of multiple sclerosis according to disability in Catalonia, Spain. Mult Scler. 2007, 13: 800-804. 10.1177/1352458506073480.CrossRefPubMed Casado V, Romero L, Gubieras L, Alonso L, Moral E, Martinez-Yelamos S, Martinez-Yelamos A, Carmona O, Arbizu T: An approach to estimating the intangible costs of multiple sclerosis according to disability in Catalonia, Spain. Mult Scler. 2007, 13: 800-804. 10.1177/1352458506073480.CrossRefPubMed
24.
go back to reference Vanner EA, Block P, Christodoulou CC, Horowitz BP, Krupp LB: Pilot study exploring quality of life and barriers to leisure-time physical activity in persons with moderate to severe multiple sclerosis. Disabil Health J. 2008, 1: 58-65. 10.1016/j.dhjo.2007.11.001.CrossRefPubMed Vanner EA, Block P, Christodoulou CC, Horowitz BP, Krupp LB: Pilot study exploring quality of life and barriers to leisure-time physical activity in persons with moderate to severe multiple sclerosis. Disabil Health J. 2008, 1: 58-65. 10.1016/j.dhjo.2007.11.001.CrossRefPubMed
25.
go back to reference Yamout B, Issa Z, Herlopian A, El Bejjani M, Khalifa A, Ghadieh AS, Habib RH: Predictors of quality of life among multiple sclerosis patients: a comprehensive analysis. Eur J Neurol. 2013, 20: 756-764. 10.1111/ene.12046.CrossRefPubMed Yamout B, Issa Z, Herlopian A, El Bejjani M, Khalifa A, Ghadieh AS, Habib RH: Predictors of quality of life among multiple sclerosis patients: a comprehensive analysis. Eur J Neurol. 2013, 20: 756-764. 10.1111/ene.12046.CrossRefPubMed
26.
go back to reference Coleman CI, Sidovar MF, Roberts MS, Kohn C: Impact of mobility impairment on indirect costs and health-related quality of life in multiple sclerosis. PLoS ONE. 2013, 8: e54756-10.1371/journal.pone.0054756.CrossRefPubMedPubMedCentral Coleman CI, Sidovar MF, Roberts MS, Kohn C: Impact of mobility impairment on indirect costs and health-related quality of life in multiple sclerosis. PLoS ONE. 2013, 8: e54756-10.1371/journal.pone.0054756.CrossRefPubMedPubMedCentral
27.
go back to reference Salter AR, Cutter GR, Tyry T, Marrie RA, Vollmer T: Impact of loss of mobility on instrumental activities of daily living and socioeconomic status in patients with MS. Curr Med Res Opin. 2010, 26: 493-500. 10.1185/03007990903500649.CrossRefPubMed Salter AR, Cutter GR, Tyry T, Marrie RA, Vollmer T: Impact of loss of mobility on instrumental activities of daily living and socioeconomic status in patients with MS. Curr Med Res Opin. 2010, 26: 493-500. 10.1185/03007990903500649.CrossRefPubMed
28.
go back to reference Orlewska E, Mierzejewski P, Zaborski J, Kruszewska J, Wicha W, Fryze W, Drozdowski W, Skibicka I, Mirowska-Guzel D, Czlonkowski A, Czlonkowska A: A prospective study of the financial costs of multiple sclerosis at different stages of the disease. Eur J Neurol. 2005, 12: 31-39. 10.1111/j.1468-1331.2004.00950.x.CrossRefPubMed Orlewska E, Mierzejewski P, Zaborski J, Kruszewska J, Wicha W, Fryze W, Drozdowski W, Skibicka I, Mirowska-Guzel D, Czlonkowski A, Czlonkowska A: A prospective study of the financial costs of multiple sclerosis at different stages of the disease. Eur J Neurol. 2005, 12: 31-39. 10.1111/j.1468-1331.2004.00950.x.CrossRefPubMed
29.
go back to reference Kobelt G, Texier-Richard B, Lindgren P: The long-term cost of multiple sclerosis in France and potential changes with disease-modifying interventions. Mult Scler. 2009, 15: 741-751. 10.1177/1352458509102771.CrossRefPubMed Kobelt G, Texier-Richard B, Lindgren P: The long-term cost of multiple sclerosis in France and potential changes with disease-modifying interventions. Mult Scler. 2009, 15: 741-751. 10.1177/1352458509102771.CrossRefPubMed
30.
go back to reference Kuspinar A, Mayo NE: Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis?. Health Qual Life Outcomes. 2013, 11: 71-10.1186/1477-7525-11-71.CrossRefPubMedPubMedCentral Kuspinar A, Mayo NE: Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis?. Health Qual Life Outcomes. 2013, 11: 71-10.1186/1477-7525-11-71.CrossRefPubMedPubMedCentral
31.
go back to reference Whitehead SJ, Ali S: Health outcomes in economic evaluation: the QALY and utilities. Br Med Bull. 2010, 96: 5-21. 10.1093/bmb/ldq033.CrossRefPubMed Whitehead SJ, Ali S: Health outcomes in economic evaluation: the QALY and utilities. Br Med Bull. 2010, 96: 5-21. 10.1093/bmb/ldq033.CrossRefPubMed
32.
go back to reference Sen AK: Commodities and Capabilities. 1999, Delhi: New York: Oxford University Press Sen AK: Commodities and Capabilities. 1999, Delhi: New York: Oxford University Press
34.
go back to reference Morris C: Measuring participation in childhood disability: how does the capability approach improve our understanding?. Dev Med Child Neurol. 2009, 51: 92-94.CrossRefPubMed Morris C: Measuring participation in childhood disability: how does the capability approach improve our understanding?. Dev Med Child Neurol. 2009, 51: 92-94.CrossRefPubMed
35.
go back to reference Eyssen IC, Steultjens MP, Dekker J, Terwee CB: A systematic review of instruments assessing participation: challenges in defining participation. Arch Phys Med Rehabil. 2011, 92: 983-997. 10.1016/j.apmr.2011.01.006.CrossRefPubMed Eyssen IC, Steultjens MP, Dekker J, Terwee CB: A systematic review of instruments assessing participation: challenges in defining participation. Arch Phys Med Rehabil. 2011, 92: 983-997. 10.1016/j.apmr.2011.01.006.CrossRefPubMed
36.
go back to reference Garin O, Ayuso-Mateos JL, Almansa J, Nieto M, Chatterji S, Vilagut G, Alonso J, Cieza A, Svetskova O, Burger H, Racca V, Francescutti C, Vieta E, Kostanjsek N, Raggi A, Leonardi M, Ferrer M, MHADIE consortium: Validation of the "World Health Organization Disability Assessment Schedule, WHODAS-2" in patients with chronic diseases. Health Qual Life Outcomes. 2010, 8: 51-10.1186/1477-7525-8-51.CrossRefPubMedPubMedCentral Garin O, Ayuso-Mateos JL, Almansa J, Nieto M, Chatterji S, Vilagut G, Alonso J, Cieza A, Svetskova O, Burger H, Racca V, Francescutti C, Vieta E, Kostanjsek N, Raggi A, Leonardi M, Ferrer M, MHADIE consortium: Validation of the "World Health Organization Disability Assessment Schedule, WHODAS-2" in patients with chronic diseases. Health Qual Life Outcomes. 2010, 8: 51-10.1186/1477-7525-8-51.CrossRefPubMedPubMedCentral
37.
go back to reference Noonan VK, Kopec JA, Noreau L, Singer J, Chan A, Mâsse LC, Dvorak MF: Comparing the content of participation instruments using the International Classification of Functioning, Disability and Health. Health Qual Life Outcomes. 2009, 7: 93-10.1186/1477-7525-7-93.CrossRefPubMedPubMedCentral Noonan VK, Kopec JA, Noreau L, Singer J, Chan A, Mâsse LC, Dvorak MF: Comparing the content of participation instruments using the International Classification of Functioning, Disability and Health. Health Qual Life Outcomes. 2009, 7: 93-10.1186/1477-7525-7-93.CrossRefPubMedPubMedCentral
Metadata
Title
Social participation in patients with multiple sclerosis: correlations between disability and economic burden
Authors
Arnaud Kwiatkowski
Jean-Pierre Marissal
Madani Pouyfaucon
Patrick Vermersch
Patrick Hautecoeur
Benoît Dervaux
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Neurology / Issue 1/2014
Electronic ISSN: 1471-2377
DOI
https://doi.org/10.1186/1471-2377-14-115

Other articles of this Issue 1/2014

BMC Neurology 1/2014 Go to the issue