IDEAS home Printed from
MyIDEAS: Log in (now much improved!) to save this paper

Costs and Quality of Life in Multiple Sclerosis A Cross-Sectional Study in the USA

Listed author(s):
  • Kobelt, Gisela


    (Karolinska Institute Stockholm, Sweden, and European Health Economics, France)

  • Berg, Jenny


    (Stocholm Health Economics)

  • Atherley, Debbie

    (University of Washington, USA)

  • Hadjimichael, Olympia

    (School of Medicine, Yale University, and Barrow Neurological Institute, USA)

  • Jönsson, Bengt


    (Dept. of Economics, Stockholm School of Economics)

Registered author(s):

    SUMMARY Treatment of multiple sclerosis (MS) has changed substantially during the past decade, as new biological disease-modifying treatments have been introduced in a field where only symptomatic pharmacological treatment had been available. The new treatments come at a high cost, between $ 8-12,000 per patient and year. Consequently, it must be expected that the part of total costs represented by drugs has increased, from essentially a very minor part in the nineties (2-5%) to a much larger proportion. However, no studies investigating this development from a societal perspective have so far been published. Objective The objective of this study was to investigate the current cost structure in MS and the effect of disease severity on costs and quality of life (utility) for patients treated with the new disease modifying drugs (DMDs) in the US. Methods The study follows closely the methodology used in three previous observational studies in Sweden, the United Kingdom and Germany. It is a descriptive bottom-up prevalence-based cost of illness study. The analysis was performed from the societal perspective and did not investigate costs for different payers. Costs were calculated as mean annual cost per patient in the sample, and mean costs for patients using a given resource. All unit costs are for 2004, or were inflated to 2004 using the CPI. Demographic variables, information on disease severity and disease activity, resource utilization and utility were collected directly from a sub-sample of ~24,000 patients taking part in a regular follow-up since up to 8 years, the North American Committee on Multiple Sclerosis (NARCOMS) Patient Registry. A questionnaire was mailed to a 4,000 randomly selected sample and the target answer rate was 50%. Results 1,989 (49.7%) of patients contacted returned the questionnaire, but 80 of them were returned empty and had to be excluded. This left a sample of 1,909 (47.7%) for analysis. The mean age of the sample was 49 years and three quarters were women. Their age at first symptoms was 30 years, and time since diagnosis was 13 years. 10.5% of patients had primary progressive, 47.6% relapsing-remitting and 33.3% secondary progressive disease. Less than 1% of patients did not answer the question, but 7.6% were unsure. 28.8% of patients indicated to have experienced a relapse during the past 3 months. 34.8% had mild, 42.7% had moderate and 22.1% had severe disease. Slightly less than one third (31.4%) was in early retirement due to MS. Total costs are estimated at $ 47,215 per patient and year. The largest proportions of costs are indirect costs ($ 17,581 or 37.2%) and drugs ($ 18,628 or 39.5%). Of the latter, disease modifying drugs accounted for 86% of total drug cost and 34% of total costs ($ 16,050), while OTC medication amounted to $ 122. Informal care represented 9.8% ($ 4614) and services and investments, which were to a large extent paid for by patients themselves, amounted to $ 2707 per patient (5.7%). Using the new (unpublished) US health status system, the mean utility in the sample was 0.698, with women having higher utility than men (0.709 versus 0.667). Patients who had experienced a relapse in the past 3 months had a utility of 0.648, compared to 0.742 for those who did not. On the absence of published gender and age specific population values in the US, the UK tariff has been used to estimate the age and gender specific utility loss of MS patients compared to the normal population. The loss of quality-adjusted life years (QALYs) was estimated at 0.255 QALY/patient. Using a willingness to pay for a QALY of $ 60000, intangible costs were estimated at $ 15,315. Costs increased and utility decreased with decreasing functional capacity. Patients with mild disease had a cost of $ 32,297 and a utility of 0.824; figures for patients with moderate MS were $ 50,293 and 0.679, and for patients with severe MS $ 64,492 and 0.533. The proportion of bed-ridden patients in the sample (EDSS 8.0 or more) was small compared to the expected prevalence. When the proportion was increased to 4%, costs for patients in the severe group increased slightly to $ 65,173 and utility decreased to 0.479. Thus, it appears that the effect of very severe disease is more pronounced on patients’ quality of life than on costs. Conclusions The objective of this study was to investigate the overall costs for patients treated with the new MS therapies, and cost distribution among different resources after the introduction of the new MS treatments. In view of the high cost of these treatments, our results are not surprising, with MS drugs representing 34% of total costs. When the use of disease modifying drugs is adjusted to the estimated national average (52%), the share of costs represented by these drugs is 21%. The findings are consistent with previous studies into the cost of MS: costs and utilities are significantly correlated with functional capacity (EDSS). This study does not investigate the value of the investment in these treatments. Rather it provides the necessary input into a disease model where costs and utility are linked to disease progression, without treatment, or with different treatments.

    If you experience problems downloading a file, check if you have the proper application to view it first. In case of further problems read the IDEAS help page. Note that these files are not on the IDEAS site. Please be patient as the files may be large.

    File URL:
    Download Restriction: no

    Paper provided by Stockholm School of Economics in its series SSE/EFI Working Paper Series in Economics and Finance with number 594.

    in new window

    Length: 76 pages
    Date of creation: 31 Mar 2005
    Handle: RePEc:hhs:hastef:0594
    Contact details of provider: Postal:
    The Economic Research Institute, Stockholm School of Economics, P.O. Box 6501, 113 83 Stockholm, Sweden

    Phone: +46-(0)8-736 90 00
    Fax: +46-(0)8-31 01 57
    Web page:

    More information through EDIRC

    References listed on IDEAS
    Please report citation or reference errors to , or , if you are the registered author of the cited work, log in to your RePEc Author Service profile, click on "citations" and make appropriate adjustments.:

    in new window

    1. Joseph P. Newhouse, 1998. "US and UK health economics: Two disciplines separated by a common language?," Health Economics, John Wiley & Sons, Ltd., vol. 7(S1), pages 79-92, August.
    Full references (including those not matched with items on IDEAS)

    This item is not listed on Wikipedia, on a reading list or among the top items on IDEAS.

    When requesting a correction, please mention this item's handle: RePEc:hhs:hastef:0594. See general information about how to correct material in RePEc.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: (Helena Lundin)

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If references are entirely missing, you can add them using this form.

    If the full references list an item that is present in RePEc, but the system did not link to it, you can help with this form.

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your profile, as there may be some citations waiting for confirmation.

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    This information is provided to you by IDEAS at the Research Division of the Federal Reserve Bank of St. Louis using RePEc data.