MS onset in childhood: do disease modifying drugs delay long term disability?


16 June 2021

The study in brief

There is growing evidence that for adults with relapsing MS, a combination of earlier diagnosis, more effective disease modifying drugs (DMDs) and a more proactive approach to treatment switching has increased the time that people remain free of long term, permanent disability. Researchers wanted to find out if this was also the case for people whose MS symptoms begin in childhood (before 18 years old).

Italian researchers looked back through data in the Italian MS Registry. They selected medical records for people who had relapsing MS which had begun before they were 18 years old and had been diagnosed for at least three years. The records were split into 4 time periods: children with onset of MS before 1993, from 1993 to 1999, from 2000 to 2006 and from 2007 to 2013. The time to reach disability milestones (EDSS 4, walking difficulties; EDSS 6, use of a walking aid) was compared for each time period.

A total of 3198 people with onset of MS before they were 18 years old were identified. Compared to those with onset of MS before 1993, the risk of reaching disability milestones dropped for each of the subsequent time periods. Overall, the risk of reaching EDSS 4 and EDSS 6 has fallen by 50% to 70% in the most recent time periods.

The authors conclude that increased availability of more effective DMDs approved for under 18s and further improvements to managing treatment will lead to a better prognosis for people with childhood onset of MS.

The study in more detail

Background

There is growing evidence that for adults with relapsing MS, a combination of earlier diagnosis, more effective disease modifying drugs (DMDs) and a more proactive approach to treatment switching has delayed the point at which people develop permanent disability. Researchers wanted to find out if this was also the case for people whose MS symptoms begin in childhood (before 18 years old).

How this study was carried out

Italian researchers looked back through data in the Italian MS Registry which holds medical records of more than 59,000 people with MS. They selected medical records for people who had relapsing MS which had begun before they were 18 years old and had been diagnosed for at least three years. These records were split into 4 time periods: children with onset of MS before 1993, from 1993 to 1999, from 2000 to 2006 and from 2007 to 2013. These time periods were chosen because they roughly correspond with the approval of disease modifying drugs (DMDs) in Italy – beta interferons in 1996-1998; Copaxone in 2002; and Tysabri in 2007.

The time to reach disability milestones (EDSS 4, walking difficulties; EDSS 6, use of a walking aid) was compared for each time period. The researchers also captured details of disease modifying drug treatment and disease activity.

What was found?

A total of 3198 people with onset of MS before they were 18 years old were identified. Compared to those with onset of MS before 1993, the risk of reaching EDSS 4 and 6 dropped for each of the subsequent time periods:

EDSS score of 4

  • 1993 to 1999 risk of 0.70
  • 2000 to 2006 risk of 0.48
  • 2007 to 2013 risk of 0.44

EDSS score of 6

  • 1993 to 1999 risk of 0.72
  • 2000 to 2006 risk of 0.44
  • 2007 to 2013 risk of 0.30

In later time periods, a greater number of people with childhood onset MS took DMDs, especially highly effective drugs. These drugs were also taken at an earlier age and for longer periods; in the 2007 to 2013 time period, people were diagnosed and started DMDs at nearly at same time. Other aspects such as disease activity at onset did not change significantly between the time periods.

For the full set, 69% were women; average age at onset of MS was 15.2 years; age at diagnosis was 22.1 years; time from onset to diagnosis was 3.2 years; follow-up period was 21.8 years; average time to reach EDSS 4 was 31.7 years; average time to reach EDSS 6 was 40.5 years.

What does it mean?

Overall, the risk of reaching disability milestones EDSS 4 (walking difficulties) and EDSS 6 (needing to use a walking aid) has fallen by 50% to 70% in the most recent time periods. A similar reduction in risk of reaching disability milestones has been reported for people with adult onset of MS. The researchers suggest that the gradual decrease in disability risk was due to the increased use of DMDs, especially more effective ones (Gilenya and Tysabri), starting treatment earlier and for a longer time compared with the past.

The authors conclude that increased availability of more effective DMDs approved for under 18s and further improvements to managing treatment will lead to a better prognosis for people with childhood onset of MS.

Baroncini D, Simone M, Iaffaldano P, et al.
Risk of persistent disability in patients with pediatric-onset multiple sclerosis.
JAMA Neurology 2021 May 3:e211008. [Epub ahead of print]

Find out more about childhood MS

Most people are diagnosed with MS between the ages of 20 and 40, but the number of people being diagnosed under the age of 18 is increasing. This is due to better diagnosis through the use of MRI scanning, as well as through increased awareness among health professionals that children can get MS.

The medical term often used for childhood MS is paediatric MS or paediatric onset MS (POMS). MS is rare in children, and difficult to diagnose as there are other conditions that have similar symptoms. This means that it can take some time to get a diagnosis, which may be frustrating or worrying for the whole family.

Research suggests that less than one in every 100 people with MS will experience symptoms before the age of 10 but between two and five in every 100 people experience their first symptoms before the age of 18. Not all of them will have been diagnosed at that age. Adults who are diagnosed may look back and remember certain symptoms they had as a child as being an early part of their MS. A recent estimate would suggest there are about 250 children with MS in the UK and about 50 going through the process of diagnosis.

Read more about childhood MS, how it's diagnosed and treated, ways to help you cope with school and much more on our website.

MSTV is our dedicated YouTube channel for young people affected by MS and features young people talking about living with MS, whether they or their parents have the condition. Videos cover a range of different topics – everything from symptoms to how MS makes you feel.

If you're aged 11 to 17 and have experience of MS – perhaps you have it yourself or know somebody that does and want to raise awareness – there's loads of different ways you could get involved. Visit Talk to us – MSTV to suggest topics you'd like us to cover or volunteer to become an MSTV Young Reporter yourself.

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