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Research Questions

  1. What are the psychosocial impacts of MS to individuals with MS and their carers?
  2. What is the societal cost associated with MS?
  3. Do the impacts of MS on individuals, their carers or wider society vary according to the stage of the disease?
  4. What support is available to individuals with MS and their carers?

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.

Key Findings

  • There are a range of impacts of MS on individuals with MS and on their carers. However, the majority of the literature focuses on the impact on the individuals with MS.
  • MS is a shared experience between the individual with MS and their carers lived in different ways.
  • The impacts of MS on society are mainly captured as the monetary costs associated with the disease. However, there are additional impacts on society that are not widely described or captured in the literature.
  • There is limited literature exploring the range of impacts affected by disease progression. However, 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

Table of Contents

  • Chapter One

    Introduction

  • Chapter Two

    Methods

  • Chapter Three

    What is the evidence in the peer-reviewed literature on the impact of disease progression in MS?

  • Chapter Four

    Impacts of MS on the individual

  • Chapter Five

    Impacts of MS on carers and family

  • Chapter Six

    Impacts of MS on society

  • Chapter Seven

    Implications for policy and research

  • Annex A

    Literature review data extraction template

  • Annex B

    Interview protocol

  • Annex C

    Participant information sheet and consent form

  • Annex D

    Interview codes

  • Annex E

    Interview analysis template

Research conducted by

The research described in this report was sponsored F. Hoffmann-La Roche and conducted by RAND Europe.

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