, Volume 26, Issue 10, pp 847–860 | Cite as

Multiple Sclerosis in the UK

Service Use, Costs, Quality of Life and Disability
  • Paul McCrone
  • Margaret Heslin
  • Martin Knapp
  • Paul Bull
  • Alan Thompson
Original Research Article


Background: Multiple sclerosis (MS) is a chronic condition that affects quality of life (QOL), leads to disability and requires ongoing care inputs. Few studies have examined the impact of QOL, disability and demographic characteristics on treatment costs.

Objective: To investigate the links between service use, costs, QOL and disability for people with MS.

Methods: A cross-sectional study was conducted in people with MS who were members of the Multiple Sclerosis Society of Great Britain and Northern Ireland. A questionnaire, consisting of sociodemographic questions, the Client Service Receipt Inventory, EQ-5D and Guy’s Neurological Disability Scale (GNDS), was sent to 4000 members of the Society. Service and lost employment costs were calculated. Regression models were developed to identify the participant characteristics that were associated with costs, QOL and disability. All costs are presented in year 2006–7 values.

Results: Questionnaires were returned by 1942 members (48.9%). The mean (SD) EQ-5D QOL score was 0.41 (0.34), whilst the GNDS disability score was 20.8 (8.9). The mean (SD) service cost over the preceding 6 months was £8397 (£10 404), and most of this (71.6%) was due to informal care. Only a small amount of cost (8.1%) was due to the use of disease-modifying drugs and drugs for spasticity. Lost employment costs amounted to a mean of £4240. Higher costs were associated with higher levels of disability and lower levels of health-related QOL.

Conclusions: This study showed that MS participants had high levels of service use, and that QOL was low in comparison with other conditions. There were significant associations between costs, QOL and disability.


Multiple Sclerosis Expand Disability Status Scale Informal Care Service Cost Secondary Progressive Multiple Sclerosis 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



The authors thank all the people with multiple sclerosis who responded to the survey. The study was funded by the Multiple Sclerosis Society of Great Britain and Northern Ireland. The Society distributed the questionnaire pack to members but played no role in the analysis of data or the writing of the paper.

The authors have no conflicts of interest that are directly relevant to the content of this study.


  1. 1.
    Blumhardt L, Wood C. The economics of multiple sclerosis: a cost of illness study. Br J Med Econ 1996; 10: 99–118Google Scholar
  2. 2.
    Holmes J, Madgwick T, Bates D. The cost of multiple sclerosis. Br J Med Econ 1995; 8: 181–93Google Scholar
  3. 3.
    Henriksson F, Jönsson B. The economic cost of multiple sclerosis in Sweden in 1994. Pharmacoeconomics 1998; 13: 597–606PubMedCrossRefGoogle Scholar
  4. 4.
    Parkin D, McNamee P, Jacoby A, et al. A cost-utility analysis of interferon beta for multiple sclerosis. Health Technol Assess 1998; 2 (4): iii-54PubMedGoogle Scholar
  5. 5.
    Whetten-Goldstein K, Sloan F, Goldstein L, et al. A comprehensive assessment of the cost of multiple sclerosis in the United States. Mult Scler 1998; 4: 419–25PubMedGoogle Scholar
  6. 6.
    Murphy N, Confavreux C, Haas J, et al. Economic evaluation of multiple sclerosis in the UK, Germany and France. Pharmacoeconomics 1998; 13: 607–22PubMedCrossRefGoogle Scholar
  7. 7.
    Kobelt G, Lindgren P, Parkin D, et al. Costs and quality of life in multiple sclerosis: a cross-sectional observational study in the UK [Stockholm School of Economics working paper series in economics and finance]. Stockholm: Stockholm School of Economics, 2000Google Scholar
  8. 8.
    Miltenburger C, Kobelt G. Quality of life and cost of multiple sclerosis. Clin Neurol Neurosur 2002; 104: 272–5CrossRefGoogle Scholar
  9. 9.
    Carton H, Loos R, Pacolet J, et al. Costs of professional care and informal help of severely disabled multiple sclerosis patients in Flanders (Belgium). Arch Pub Health 1997; 55: 239–59Google Scholar
  10. 10.
    Beecham J, Knapp M. Costing psychiatric interventions. In: Thornicroft G, editor. Measuring mental health needs. 2nd ed. London: Gaskell, 2001Google Scholar
  11. 11.
    Williams A. The role of the EuroQoL instrument in QALY calculations. York: Centre for Health Economics, University of York, 1995Google Scholar
  12. 12.
    Dolan P, Gudex C, Kind P, et al. A social tariff for EuroQoL: results from a UK general population survey. York: Centre for Health Economics, University of York, 1995Google Scholar
  13. 13.
    Sharrack B, Hughes R. The Guy’s Neurological Disability Scale (GNDS): a new disability measure for multiple sclerosis. Mult Scler 1999; 5: 223–33PubMedGoogle Scholar
  14. 14.
    Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology 1983; 33: 1444–52PubMedCrossRefGoogle Scholar
  15. 15.
    Curtis L, Netten A. Unit costs of health and social care. Canterbury: Personal Social Services Research Unit, University of Kent, 2004Google Scholar
  16. 16.
    Netten A, Curtis L. Unit costs of health and social care. Canterbury: Personal Social Services Research Unit, University of Kent, 2002Google Scholar
  17. 17.
    Simpson S, Corney R, Fitzgerald P, et al. A randomised controlled trial to evaluate the effectiveness and cost-effectiveness of counselling patients with chronic depression. Health Technol Assess 2000; 4 (36): 1–83PubMedGoogle Scholar
  18. 18.
    McCrone P, Ridsdale L, Darbishire L, et al. Cost-effectiveness of cognitive behavioural therapy, graded exercise and usual care for patients with chronic fatigue in primary care. Psychol Med 2004; 34: 991–9PubMedCrossRefGoogle Scholar
  19. 19.
    Department of Health. National Health Service schedule of reference costs 2004[online]. Available from URL: [Accessed 2005 Jul 1]
  20. 20.
    British Medical Association/Royal Pharmaceutical Society. British National Formulary, 49. London: Pharmaceutical Press, 2005Google Scholar
  21. 21.
    Dobbs C. Patterns of pay: results of the annual survey of hours and earnings 1998 to 2004. Labour Market Trends 2005 Sep[online]. Available from URL: [Accessed 2008 Jun 13]
  22. 22.
    Curtis L. Unit costs of health and social care. Canterbury: Personal Social Services Research Unit, University of Kent, 2007Google Scholar
  23. 23.
    Richards RG, Sampson FC, Beard SM, et al. A review of the natural history and epidemiology of multiple sclerosis: implications for resource allocation and health economic models. Health Technol Assess 2002; 6 (10): 1–73PubMedGoogle Scholar
  24. 24.
    Fox CM, Bensa S, Bray I, et al. The epidemiology of multiple sclerosis in Devon: a comparison of the new and old classification criteria. J Neurol Neurosur Psychiatry 2004; 75: 56–60Google Scholar
  25. 25.
    Kobelt G, Berg J, Lindgren P, et al. Costs and quality of life of patients with multiple sclerosis in Europe. J Neurol Neurosur Psychiatry 2006; 77: 918–26CrossRefGoogle Scholar
  26. 26.
    Brazier J, Roberts J, Tsuchiya A, et al. A comparison of the EQ-5D and SF-6D across seven patient groups. Health Econ 2004; 13: 873–84PubMedCrossRefGoogle Scholar
  27. 27.
    Kind P, Hardman G, Macran S. UK population norms for EQ-5D[Centre for Health Economics discussion paper no. 172]. York: University of York, 1999Google Scholar
  28. 28.
    Hoogervorst ELJ, Eikelenboom MJ, Uitdehaag BMJ, et al. One year changes in disability in multiple sclerosis: neurological examination compared with patient self report. J Neurol Neurosur Psychiatry 2003; 74: 439–42CrossRefGoogle Scholar
  29. 29.
    Hoogervorst EL, van Winsen LM, Eikelenboom MJ, et al. Comparisons of patients self-report, neurological examination, and functional impairment in MS. Neurology 2001; 56: 934–7PubMedCrossRefGoogle Scholar
  30. 30.
    Kobelt G, Berg J, Lindgren P, et al. Costs and quality of life of multiple sclerosis in the United Kingdom. Eur J Health Econ 2006; 7 Suppl. 2: S96-S104CrossRefGoogle Scholar
  31. 31.
    Gottberg K, Einarsson U, Ytterberg C, et al. Health-related quality of life in a population-based sample of people with multiple sclerosis in Stockholm County. Mult Scler 2006; 12: 605–12PubMedCrossRefGoogle Scholar
  32. 32.
    Miller A, Dishon S. Health-related quality of life in multiple sclerosis: the impact of disability, gender and employment status. Qual Life Res 2006; 15: 259–71PubMedCrossRefGoogle Scholar
  33. 33.
    Byford S, Leese M, Knapp M, et al. Comparison of alternative methods of collection of service use data for the economic evaluation of health care interventions. Health Econ 2007; 16: 531–6PubMedCrossRefGoogle Scholar
  34. 34.
    Goldberg RW, Seybolt DC, Lehman A. Reliable self-report of health service use by individuals with serious mental illness. Psychiatr Serv 2002; 53: 879–81PubMedCrossRefGoogle Scholar
  35. 35.
    Calsyn RJ, Allen G, Morse GA, et al. Can you trust self-report data provided by homeless mentally ill individuals? Evaluation Rev 1993; 17: 353–66CrossRefGoogle Scholar
  36. 36.
    Patel A, Rendu A, Moran P, et al. A comparison of two methods of collecting economic data in primary care. Fam Pract 2005; 22: 323–7PubMedCrossRefGoogle Scholar
  37. 37.
    Asche CV, Ho E, Chan B, et al. Economic consequences of multiple sclerosis for Canadians. Acta Neurol Scand 1997; 95: 268–74PubMedCrossRefGoogle Scholar

Copyright information

© Adis Data Information BV 2008

Authors and Affiliations

  • Paul McCrone
    • 1
  • Margaret Heslin
    • 1
  • Martin Knapp
    • 1
    • 2
  • Paul Bull
    • 3
  • Alan Thompson
    • 4
  1. 1.Institute of PsychiatryKing’s College LondonLondonUK
  2. 2.London School of EconomicsLondonUK
  3. 3.School of Health and Related ResearchUniversity of SheffieldSheffieldUK
  4. 4.Institute of NeurologyUniversity College LondonLondonUK

Personalised recommendations