A major UK-wide study led by researchers based in Liverpool has revealed the profound impact of multiple sclerosis (MS) on health-related quality of life, with findings that could reshape how services and resources are allocated for people living with the condition.
Published in Value in Health, the research draws on data from 5,509 people with MS across the UK, making it one of the largest studies of its kind globally.
MS is a chronic neurological condition that can be diagnosed at any age and is a leading cause of disability in young adults. While its physical symptoms are well documented, its broader impact on wellbeing has remained less clearly understood.
To address this, the team used the EQ-5D-5L-a standardised tool for measuring health-related quality of life. Despite its widespread use in clinical trials and public health surveys, its application in MS has been limited, particularly in understanding what constitutes a meaningful change in a person's health status, known as the Minimal Important Change (MIC).
The work forms part of the Trajectories of Outcome in Neurological Conditions-MS (TONiC-MS) study, hosted by The Walton Centre NHS Foundation Trust and supported by academic partners.
The study revealed that:
- People with MS report significantly lower quality of life scores than the general population at every age. For example, men aged 30-34 with MS had scores comparable to healthy men aged 80-84.
- Factors such as progressive MS, cognitive difficulties, fatigue, bladder problems, and stigma were strongly associated with poorer outcomes.
- Less visible influences, including self-efficacy-confidence to complete tasks and produce desired outcomes -also played a significant role.
Importantly, the study calculated MIC values for the first time in MS using patient-reported data. These values varied by MS type, with lower thresholds in progressive MS and higher thresholds among those who had experienced a recent relapse.
The findings highlight the need for healthcare services to:
- Recognise the significant impact of MS on wellbeing across all age groups.
- Tailor support to address both clinical symptoms and psychosocial factors.
- Use MS-specific MIC values when evaluating treatment outcomes and designing services.
The University of Liverpool's Professor Carolyn Young, Clinical Professor of Neurology and lead author of the study, said: "This research would not have been possible without the generosity of thousands of people with MS across the UK who shared their experiences. Their contribution has allowed us to quantify just how deeply MS affects quality of life, and to identify what matters most to patients. We hope these findings will help shape more responsive, compassionate services for people living with MS."
While the study offers unprecedented insight, further work is planned, exploring additional factors and complex interactions. The TONiC-MS study is ongoing, and in late 2025, the team will be inviting existing participants to provide updated information on their experiences.
About the TONiC-MS Study
The TONiC-MS study is part of the wider TONiC initiative-one of the largest investigations into quality of life in neurological conditions worldwide. To date, TONiC has produced over 70 peer-reviewed publications and numerous conference presentations, helping to shape the future of neurological research.
Visit the TONiC study website or explore the FINDeRS-MS portal to learn more.
Click here to read the full study published in Value in Health.
