Multiple sclerosis 'barometer' reveals wide variation in care across europe

Multiple sclerosis 'barometer' reveals wide variation in care across europe

Brussels, 13 November 2008: Patients with multiple sclerosis (MS) in different countries in the Europe face huge variations in provision of treatment and care, according to results from an MS barometer reported at the European parliament.

The MS barometer is a benchmarking initiative being carried out by the European Multiple Sclerosis Platform (EMSP), an umbrella organisation of national MS societies. It measures the care and services for people with the condition in seven key areas, including access to treatment and therapies, research in MS, employment and job retention and medication coming to the market.

Reporting the first-year findings, Mairead O'Leary, Project Coordinator for the Multiple Sclerosis Information Dividend, the EU funded project collecting information using the MS barometer, explained the rationale: "We needed an accurate picture of MS in Europe, including the number of people diagnosed with the condition, services and treatment availability. The barometer is one of the first steps to giving this picture, allowing us to look at information across different countries."

Figures for 2008 collected in each country by national MS organisations and medical advisory boards showed major differences for the 32 European countries taking part (27 EU member states plus five others). The average score was 156 from a total of 270 points across the seven areas of MS care assessed, but this ranged from a highest score of 240 in Germany down to the lowest of 82 points in Romania.

"The variation is quite startling," commented Ms O'Leary. "There is a lot of room for improvement across a range of MS services, and scope for bringing up the average score."

There was great variability in access to MS treatments and therapies, with an average score of 51 out of 75 points in this area of MS care, ranging from the highest score of 72 points for patients in the Netherlands down to 21 points in Bulgaria. The percentage of patients on disease modifying drugs ranged from 90% in Luxembourg to only 2% in Poland. Provision of outpatient rehabilitation varied from being available to 100% of patients in the UK to 1% in Latvia.

The proportion of MS patients having to take early retirement from their work was greater than 50% in one-third of the countries taking part in the project. However, some countries achieved much lower rates, with fewer than 20% of those with MS having to take early retirement in one in ten of the countries, including Austria and Denmark. "The more invested in the earlier management of MS, the less the societal costs may be in the long term, with people being able to stay in their workplace," suggested Ms O'Leary.

"The MS barometer results will be a significant step in persuading national governments to change their policies. Too many Europeans with MS are being denied the treatment and support they need, when they need it," warned EMSP President Dorothea Pitschnau-Michel.

Christoph Thalheim, Secretary General of the EMSP, explained that information would be collected with the MS Barometer each year to track changes in MS service provision. "We will repeat the survey every year and hope to find positive developments."

Results for 2008 from the MS Barometer are available at //

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Section Issues On Medicine: Disease