How many children and adolescents are living with MS across the world?

MS is a condition that affects children and adolescents as well as adults.  

The Atlas of MS estimates that there are 2.9 million people living with MS worldwide. While it is often thought of as a condition that affects adults, children and adolescents can also develop MS. However, there is limited global information about how many children have pediatric MS or where they live. 

Children and adolescents who develop MS face unique challenges. While they recover from relapses more quickly than adults, they experience relapses more frequently and disability progression occurs at a younger age. Without rapid diagnosis and treatment, this has a huge impact on their quality of life and wellbeing. 

The Atlas of MS has collected data on pediatric MS since 2013. This data has recently been analysed in greater detail to get a clearer picture of its prevalence, and how access to healthcare may influence rates of diagnosis. The findings were recently published in the Journal of Neurology, Neurosurgery & Psychiatry: Worldwide epidemiology of paediatric multiple sclerosis: data from the Multiple Sclerosis International Federation Atlas of MS, third edition. 

What were the main findings? 

The study was led by Associate Professor Grace Gombolay, a pediatric neurologist based at Emory University School of Medicine in the US. The analysis was based on 53 countries that submitted pediatric data to the Atlas of MS during 2020-2022, and estimated that there are over 31,000 children and adolescents living with MS worldwide. This equates to 1.49 cases per 100,000 children. These numbers suggest that pediatric MS is rare; however it is very likely to be underdiagnosed, especially in lower-resource settings, where access to neurologists with MS expertise and diagnostic capabilities is limited. 

‘Our findings shed light on the urgent need for comprehensive data collection, particularly in underrepresented regions. By addressing these gaps, we can take significant steps toward improving outcomes for children living with MS wherever they live in the world,’

Associate Professor Grace Gombolay, Emory University School of Medicine, US and lead author of the study. 

The prevalence of pediatric MS varies considerably across different countries. This variation may be influenced by differences in genetics and the environment, but a major factor could be barriers in accessing diagnosis. In this study, the researchers also compared the prevalence of pediatric MS with the number of child neurologists per country.  

Countries with more neurologists report higher rates of pediatric MS. This suggests that where healthcare systems are better resourced, it is possible to identify and diagnose more cases of pediatric MS. In many lower-income countries, children and adolescents may be undiagnosed or misdiagnosed. 

What are the limitations to this study? 

Of the 125 countries surveyed by the Atlas of MS, only 53 provided information on pediatric MS. In addition, most of the data came from North America, Europe, and parts of Asia, leaving large gaps in what we know about pediatric MS in the rest of the world.  

More countries reported pediatric MS data in 2020 compared to 2013, which is likely due to increasing awareness, better diagnostic tools, and better systems in place for data collection and reporting. However there is an ongoing challenge with reporting data on pediatric MS. Countries define “pediatric” differently, with different age cut-offs at which someone becomes an adult.  

Whilst we recognise that economic, cultural, and legal factors influence the age definition of children globally, we urge the health and research community to adopt a consistent age definition. Defining children as under 18 years, in line with the United Nations Convention on the Rights of the Child and recommendations from the International Pediatric MS Study Group, will enhance our understanding of pediatric MS across the world. 

Why is it important to track cases of pediatric MS? 

This research highlights the need for better global surveillance of pediatric MS. We hope that shining a spotlight on the lack of data will encourage countries to start tracking and reporting on this population.   

Knowing how many people are living with certain health conditions in a country is crucial to ensure that health system resources are in place to diagnose, treat and care for them. Until recently, many people believed that children couldn’t have MS. Data from the Atlas shows that many thousands of children and adolescents across the world have MS, and countries must have plans and resources in place to support them.  

‘Understanding the global prevalence of pediatric MS is critical for improving early diagnosis and treatment. This research emphasises the need for international collaboration to ensure children and adolescents everywhere have access to the care they need.‘

Professor Brenda Banwell, Pediatrician-in-Chief at Johns Hopkins Children’s Center, US, and Chair of MSIF’s International Medical and Scientific Board 

Effective treatments are available for pediatric MS, and as is the case with adults, early treatment with high-efficacy disease modifying therapies (DMTs) reduces the numbers of relapses and disability progression. Although access to MS treatments is challenging in many parts of the world, we hope that the addition of MS treatments onto the WHO’s Essential Medicine List (EML) will be a lever for improving access to treatment. The WHO EML includes medicines for children 12 years and older, so this is relevant for a large part of the pediatric MS population too. With better understanding of the prevalence of pediatric MS, organisations will have the evidence they needed to advocate for improvements to healthcare for all children and adolescents living with MS.