The current focus for the treatment of multiple sclerosis (MS) is on early diagnosis and drug intervention, with a view to modifying disease progression. As a result, healthcare costs have shifted from inpatient care and rehabilitation to outpatient care.
The European burden of illness study set out to provide data that can be combined with other evidence to assess whether management approaches provide value to society.
The study was conducted in 16 countries - Austria, Belgium, Czech Republic, Denmark, France, Germany, Hungary, Italy, Netherlands, Poland, Portugal, Russia, Spain, Sweden, Switzerland and the United Kingdom.
A standard questionnaire was translated and discussed with each local study group to ensure relevance and easy comprehension.
Patients 18 years of age or over were invited to participate by patient organisations, via direct electronic mail, a printed invitation mailed directly or with a regular information bulletin, or the organisations’ websites and social media platforms, whichever was the most feasible and efficient. In all cases, patients could respond either directly on a study-specific internet platform or return a paper questionnaire. All responses were fully anonymous, with no opportunity to verify answers, complete missing information or identify individuals.
The 16,808 participants who took part in the study had a mean age of 51.5 years, and 52% had relapsing–remitting multiple sclerosis (RRMS). People’s ability to work declined from 82-8% as their MS advanced. In addition, their function (utility) also declined from normal population values to less than zero.
Mean costs of resource consumption were related to disease severity, with 22,800€ PPP (Purchasing Power Parity) for respondents with an EDSS of 0-3 (mild), 37,100€ PPP with an EDSS of 4-6.5 (moderate) and 57,500€ PPP with an EDSS of 7-9 (severe), 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.
Researchers concluded that costs and utility were highly correlated with disease severity, but resource consumption was heavily influenced by healthcare systems organisation and availability of services.