New insights into the burden and costs of multiple sclerosis in Europe

Abstract

Background: The current focus in multiple sclerosis (MS) is on early diagnosis and drug intervention, with a view to modifying disease progression. Consequently, healthcare costs have shifted from inpatient care and rehabilitation to outpatient care.

Objectives: This European burden of illness study provides data that can be combined with other evidence to assess whether management approaches provide value to society.

Methods: A cross-sectional study was conducted in 16 countries. Patients reported on their disease, health-related quality of life (HRQoL) and resource consumption. Descriptive analyses were performed by disease severity. Costs are reported from a societal perspective in 2015€ PPP (adjusted for purchasing power parity).

Results: The 16,808 participants had a mean age of 51.5 years, and 52% had relapsing-remitting multiple sclerosis (RRMS). Work capacity declined from 82% to 8%, and utility declined from normal population values to less than zero with advancing disease. Mean costs were 22,800€ PPP in mild, 37,100€ PPP in moderate and 57,500€ PPP in severe disease; healthcare accounted for 68%, 47% and 26%, respectively. Fatigue and cognitive difficulties were reported by 95% and 71% of participants, respectively; both had a significant independent effect on utility.

Conclusion: Costs and utility were highly correlated with disease severity, but resource consumption was heavily influenced by healthcare systems organisation and availability of services.

Keywords: HRQoL; Multiple sclerosis; burden of illness; cognition; costs; fatigue.

Figure 1.

Severity of fatigue, cognitive difficulties and reduced productivity at work, by level of disease severity (mean VAS and CI). Answers to all three questions were reported using a visual analogue scale (VAS) from 0 (no problems) to 10 (severe problems). No imputations were made for missing answers The question on cognition was preceded by a yes/no question about whether participants experienced cognitive difficulties, and patients answering ‘no’ were assigned 0 on the VAS. Answers for productivity were accepted only for participants in employment. Although the severity of fatigue, cognitive difficulties and impact on work productivity increased with increasing EDSS, all factors were present very early in the disease. EDSS: Expanded Disability Status Scale; VAS: visual analogue scale; CI: confidence interval. *Calculated for working patients.

Figure 2.

Proportion of patients and level of problems in the five domains of the EQ-5D, by level of disease severity (N = 15,429). The EQ-5D 3L addresses five domains of HRQoL, with three levels of answers (no problem, some problems and severe problems). The proportion of patients with no problems decreases rapidly with advancing disease severity in all domains except for anxiety/depression, where similar levels of problems were present at all levels of disease severity. EDSS: Expanded Disability Status Scale; EQ-5D 3L: EuroQol Five Dimensions questionnaire with three levels per domain; HRQoL: health-related quality of life.

Figure 3.

Utility scores by level of disease severity (N = 15,429). (a) Utility scores for the total sample by level of disease severity (EDSS). Mean scores and confidence intervals (CIs). (b) Utility scores by country and by level of disease severity EDSS). The EQ-5D is designed to calculate a single score for HRQoL, a preference-based utility, which anchored between full health (a score of 1) and death (a score of 0). In MS, utility decreases steadily from normal population levels in early disease until EDSS 6.5, then declines steeply to values below zero, a state considered worth than death. The seeming flatness of the curve in the mid range of EDSS score results from the non-linearity of the EDSS scale. EDSS: Expanded Disability Status Scale; EQ-5D: EuroQol Five Dimensions questionnaire.

Figure 4.

Use of informal care by patients at different levels of disease severity (N = 7176). In all, 42% of patients require assistance from their families, with the intensity of usage concentrated in the group with severe disease which represented 34% of users (N = 2414). The mildly severe disease group represented 20% (N = 1433) and the moderately severe disease group 46% (N = 3329). Most of the respondents in the severe disease group use family help around the clock. The intensity of usage is, however, also dependent on the availability of community support, family structure and traditions: better community support reduces the need for informal care (e.g. Sweden, Switzerland); families in Mediterranean countries are often larger and more support is available (e.g. Italy, Spain, Portugal). Mild: EDSS 0–3; moderate: EDSS 4–6.5; severe: EDSS 7–9.

Figure 5.

Workforce participation: proportion of patients below retirement age (N = 13,391) employed or self-employed (N = 6769). Workforce participation decreases rapidly with advancing EDSS, from normal population levels at EDSS 0 to only a few patients being able to work at EDSS 9. EDSS: Expanded Disability Status Scale.

Figure 6.

Mean total annual cost per patient by disease severity and resource type, 2015€ PPP (N = 16,808). Results are presented for the main resource categories and by disease severity. Early in the disease, the cost of DMTs dominates, while late in the disease, community services and informal care represent a large proportion of costs. Production losses play a major role in moderate and severe disease. Costs are converted to Euros and adjusted with purchasing power parity according to GDP. EDSS: Expanded Disability Status Scale; PPP: purchasing power parity.

Figure 7.

Mean total annual cost per patient by EDSS score, 2015€ PPP (N = 16,808). (a) Mean total annual costs in the study sample by EDSS score, 2015€ PPP (N = 16,808). Costs are adjusted with purchasing power parity (PPP) and confidence intervals (CIs) calculated with the bootstrap method (1000 replicas). (b) Mean total annual cost per patient by country and by EDSS score, 2015€ PPP (N = 16,808). Total annual costs per patient in early disease are very similar in all countries when adjusted to €PPP, but start to differ at higher EDSS scores. Particularly in severe disease, costs are highly variable between countries according to the provision of services, with Sweden, Denmark and Switzerland providing the most support. EDSS: Expanded Disability Status Scale; PPP: purchasing power parity.