Societal burden of disease progression in multiple sclerosis: implications for future research, policy and practice
Researchers sought to identify the broader health, societal and economic impacts of disease progression in multiple sclerosis (MS). They found that MS is associated with high economic costs to society that go beyond costs to the healthcare system, but uncovered limited evidence on the impact of disease progression on patients, carers, and society as a whole.
Multiple sclerosis (MS) is a chronic, progressive disease of the central nervous system with high costs in terms of disability adjusted life years, medical costs and wider economic costs to society. It results in a wide array of physical and mental symptoms, and affects overall quality of life.
People with MS, as well as friends and family who provide informal care, may also suffer from psychosocial issues related to the diagnosis and burdens of MS. These include depression and anxiety, difficulty working, and changes in social functioning.
Although significant progress has been made in terms of treatment options for MS, new technologies and a more comprehensive understanding of the disease has fuelled new consensus statements from clinicians, focusing on the importance of early diagnosis and referral to specialists, access to newer disease modifying therapies sooner after diagnosis, rapid and efficient decision making when switching medications and the importance of lifestyle changes to support brain health. Their statements also make clear that innovation in treatment for MS is still needed.
More comprehensive evidence is required on the range of impacts of disease progression in MS.
RAND Europe was supported and commissioned by Roche to help enrich the evidence base on the broader health, societal and economic impacts of disease progression in MS. The team's goals were to provide an overview of the existing evidence in three main areas:
- The types of impacts of disease progression in MS
- The impact of disease progression in MS on non-clinical outcomes, such as psychosocial outcomes for patients, and their carers and family members
- The wider economic and social impacts of disease progression in MS
This study aimed to be of use to policymakers and others interested in understanding the current status of the evidence around the wider costs to society of the progression of MS.
The study consisted of two phases:
- A review of the literature using a Rapid Evidence Assessment approach to evaluate patient, carer, and societal impacts of disease progression in MS.
- Interviews with key experts to provide an in depth understanding of the societal impact of disease progression in MS, as well as the challenges and opportunities for MS that may help reduce the burden of disease progression.
The impacts of MS are often shared between the patient and the carer, but experienced in different ways.
- People with MS experience fatigue, which can impact their daily lives. It can lead to reduced capacity to work and a reduced ability to participate in society. Despite the challenges the disease brings, people with MS can and increasingly do stay in the workforce. MS is also associated with increased depression and anxiety in patients, and reduced quality of life.
- Informal care (additional care for patients outside of that provided by the healthcare system) generally falls on families, which can lead to caregiver burden such as career disruption and negative impacts on mental wellbeing.
- In general, individuals with MS have access to medical support, however there is a lack of support available to deal with caregiver burden.
MS is associated with high economic costs to society which are varied and go beyond costs to the healthcare system.
The impacts of MS on society are mainly estimated in economic terms, with most of the literature focused on capturing costs to the healthcare system; however MS also has costs associated with lost productivity and informal care time. Other impacts also include disruption of the education of younger patients and lower levels of community engagement.
- Almost half of MS patients receive informal care at an average of 30 hours per week globally.
- The average cost of informal caregiving related to MS in 2015 was €13,092 per year.
- MS is associated with high levels of healthcare costs, ranging from €6,054 in the UK to €24,962 in Spain for treatment of severe MS per person per year.
- Lost productivity accounts for a large amount of the total cost of MS to society through both absenteeism and presenteeism. Annual costs per person range from €14,267 in the UK to €22,630 in Spain for treatment of severe MS.
There is limited evidence on the impact of disease progression on individuals with MS, their carers and society.
- Most of the data and tools available to assess disease progression use only physical aspects, and do not consider mental functioning.
- The available literature suggests that the economic impact of MS increases with disease progression, which can be seen across all European countries where evidence was available.
Implications for policy and research
- It is important that the impacts of MS for both patients and their carers are fully reflected in research, so that policy can be appropriately informed. Going forwards, greater investment in supporting the needs of carers for individuals with MS could support the informal care they provide, as well as supporting the carer as an individual.
- There is a need for additional research examining the psychosocial impact of disease progression to inform decision-making around policy and care choices.