A UK-wide study revealed the effect of multiple sclerosis on health-related quality of life. The findings could reshape how services and resources are allocated for people living with the disease.

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 effect on wellbeing has remained less clearly understood.

To address this, a University of Liverpool research team used the EQ-5D-5L — a standardized 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. 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.

The study found that:

• People with MS report significantly lower quality of life scores than the general population at every age. For example, men aged 30 to 34 with MS had scores comparable to healthy men aged 80 to 84.
• Factors such as progressive MS, cognitive difficulties, fatigue, bladder problems, and stigma were strongly linked to 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:

• Recognize the significant effect 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.

While the study offers unprecedented insight, further work is planned, exploring additional factors and complex interactions.

The study was published in the journal Value in Health.