Burden of illness in multiple sclerosis (DEFENSE) study: the costs and quality-of-life of Finnish patients with multiple sclerosis

Abstract

Objective:

Although multiple sclerosis (MS) is one of the most common causes of non-traumatic disability among young adults, no published data on its economic and health-related quality-of-life (HRQoL) burden is available from Finland. The DEFENSE study aimed to estimate the costs and HRQoL of patients with MS (PwMS) in Finland and explore how these variables are influenced by disease severity and relapses.

Methods:

Overall, 553 PwMS registered with the Finnish Neuro Society, a national patient association in Finland, completed a self-administered questionnaire capturing information on demographics, disease characteristics and severity (Expanded Disease Severity Scale [EDSS]), relapses, resource consumption and HRQoL.

Results:

The PwMS had a mean EDSS score of 4.0. Overall, 44.1% had relapsing-remitting form of the disease (RRMS). The mean age was 53.8 years and 55.7% had retired prematurely due to MS. Disease-modifying therapies (DMTs) were used by 42.7% of the study population, and 21.5% across all disease types and severities had experienced relapses during the previous year. The mean total annual cost of MS was €46,994, which increased with advancing disease from €10,835 (EDSS score = 0) to €109,901 (EDSS score = 8–9). The mean utility was 0.644. HRQoL decreased with increasing disease severity. Relapses imposed an additional utility decrement among the PwMS with RRMS and EDSS ≤5 and had a trend-like effect on total costs.

Limitations:

The cross-sectional setting did not allow assessment of the significance of relapses in early MS or the use of DMTs on the prognosis of the disease.

Conclusion:

The study confirms previous findings from other countries regarding a significant disease burden associated with MS and provides, for the first time, published numerical estimates from Finland. Treatments that slow disease progression and help PwMS retain employment for a longer duration have the highest potential to reduce the disease burden associated with MS.

Keywords::

• Multiple sclerosis
• MS
• Burden of illness
• Costs
• Quality of life
• Utilities
• Finland

Transparency

Declaration of funding

The DEFENSE study was supported by Novartis Finland Oy and the Finnish Neuro Society.

Declaration of financial/other relationships

None disclosed. JME peer reviewers on this manuscript also have no relevant financial or other relationships to disclose.

Acknowledgments

The authors would like to thank Anne Dahlberg and Anne Sinkkonen at Finnish Neuro Society for their contribution to data collection, and Arja Vainio at Smerud Medical Research Ab/Oy for study monitoring and oversight. The author’s also acknowledge Rahul Birari (Novartis Healthcare Pvt Ltd) for providing editorial support which comprised of checking content for language, formatting, and referencing, all under the direction of the authors.

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.