Societal costs of MS

Why does MS have such a big impact on employment? #MSBlog #MSResearch

Kobelt et al. Costs and quality of life of patients with multiple sclerosis in Europe. J Neurol Neurosurg Psychiatry. 2006 Aug;77(8):918-26.

OBJECTIVE: To assess overall resource consumption, work capacity and quality of life of MSers with MS in nine European countries.

METHODS: Information on resource consumption related to MS, informal care by relatives, productivity losses and overall quality of life (utility) was collected with a standardised pre-tested questionnaire from 13,186 MSers enrolled in national MS societies or followed up in neurology clinics. Information on disease included disease duration, self-assessed disease severity and relapses. Mean annual costs per patient (Euro, 2005) were estimated from the societal perspective.

RESULTS: The mean age ranged from 45.1 to 53.4 years, and all levels of disease severity were represented. Between 16% and 29% of MSers reported experiencing a relapse in the 3 months preceding data collection. The proportion of MSers in early retirement because of multiple sclerosis ranged from 33% to 45%. The use of direct medical resources (eg, hospitalisation, consultations and drugs) varied considerably across countries, whereas the use of non-medical resources (eg, walking sticks, wheel chairs, modifications to house and car) and services (eg, home care and transportation) was comparable. Informal care use was highly correlated with disease severity, but was further influenced by healthcare systems and family structure. All types of costs increased with worsening disease. The total mean annual costs per MSer (adjusted for gross domestic product purchasing power) were estimated at Euro 18,000 for mild disease (Expanded Disability Status Scale (EDSS) <4.0), Euro 36,500 for moderate disease (EDSS 4.0-6.5) and Euro 62,000 for severe disease (EDSS >7.0). Utility was similar across countries at around 0.70 for a patient with an EDSS of 2.0 and around 0.45 for a patient with an EDSS of 6.5. Intangible costs were estimated at around Euro 13,000 per patient.

The following graph has been taken from the paper to demonstrate the impact of disability on employment.

Figure legend: The proportion of patients employed or on long‐term sick leave is calculated as a percentage of patients aged 65 years. The reduced work capacity particularly at Expanded Disability Status Scale (EDSS) 2–3 compared with EDSS 4 is explained by an increased frequency of relapses in this group and hence a concentration of sick leave. 

“Are you surprised by these figures? I am aware that this is an old paper but it illustrates how devastating MS is on employment. Employment rates drop precipitously with increasing disability. At an EDSS 3.0, a level of disability that is not associated with loss of independence  close to 50% of MSers are unemployed. Why? I suspect this is driven by fatigue, depression, anxiety and cognitive impairment.”

“If you have not done so already can you please take the time to compelet the employment survey below? We have had close to 100 respondents and would like to get over 100 before presenting the results to you. Thank you.”

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • I was lucky to be given a chance to retire early without financial penalty. My health has improved exponentially since stopping work.

  • I am shocked by these findings. I am EDSS 6 (need a stick and can't manage a full day of normal activities) but am still employed on a part-time basis in a senior-level job.

    Work is important to me for a variety of reasons; Financial, Social engagement, intellectual stimulation and sometimes to take my mind off the pain etc. I am climbing the walls with boredom when I am off sick with a relapse.

    It's so short-sighted of company's to either expect MS'ers to work full-time or kick them out. There are plenty of MS'ers on aggressive therapies that are enabling them to live a much fuller life than previously possible. We need more publicity of MS'ers achieving in all areas, not just at the Paralympics.

By Prof G



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