Societal burden of disease progression in multiple sclerosis: implications for future research, policy and practice
Nov 19, 2019
This study looked at the non-clinical impacts of multiple sclerosis (MS) on the individual with MS, their carers and wider society, focusing on disease progression. We used a rapid evidence assessment of relevant academic literature as well as key informant interviews. The study adopted an international view, with specific country focus on Australia, Canada, France, Germany, Italy, Spain, the United Kingdom and the United States.
MS is a chronic, progressive disease of the central nervous system, which affects more than 2.2 million people worldwide. In addition to the health burden on people affected by MS, it is a disease associated with high costs in terms of both medical costs and wider economic costs to society, as well as requiring a high amount of informal care provided at home. RAND Europe undertook a study to understand the non-clinical impacts of MS with specific focus on disease progression. We addressed this question from the perspective of the individual with MS, their carers and broader society using a literature review and key informant interviews. We found that there are a range of impacts of MS on individuals with MS and on their carers and that the majority of the literature focuses on the individual. We concluded that MS is a shared experience between the individual with MS and their carers lived in different ways. We found that the impacts of MS on society are mainly captured as the monetary costs associated with the disease, although there are additional costs that are not widely described or captured in the literature. There is limited literature exploring the range of impacts affected by disease progression, although it is clear that the negative impacts of MS increase with disease progression. Across the countries included in our study, individuals with MS have access to psychosocial support although there is room for improvement on public services. Improved psychosocial support could be provided to carers.
What is the evidence in the peer-reviewed literature on the impact of disease progression in MS?
Impacts of MS on the individual
Impacts of MS on carers and family
Impacts of MS on society
Implications for policy and research
Literature review data extraction template
Participant information sheet and consent form
Interview analysis template