Did you know that paediatric-onset multiple sclerosis (POMS) is considered a rare disease? Nestled within the categorical confines of a disease that is in itself already rare, POMS is diagnosed in only 3-10% of MS patients under the age of 18.
On this 28 February 2022 International Rare Disease Day, ECTRIMS takes a look back at the last year of research and patient care advocacy of this rare disease:
A year of new research
Since 2021, several new articles have been published addressing the clinical diagnosis, therapeutic strategies and health-related quality of life (HRQoL) measures for children with MS, including the following:
- This month, new research published in the Multiple Sclerosis Journal highlighted the importance of family-centred care for children with MS, outlining that parental HRQoL mediates the relationship between an MS diagnosis and the HRQoL of children with MS.
- In October 2021 at ECTRIMS Annual Congress, experts released a soon-to-be published joint initiative between ECTRIMS and the European Association of Neurology (EAN) detailing vaccination strategy recommendations for people with MS, including for specialised groups such as children with MS. The full report will be made available later this year.
- Another ECTRIMS 2022 presentation, from researchers in Sweden, details how POMS suffer from cognitive decline more than adult onset MS.
- Also in October at ECTRIMS, researchers from Australia presented new evidence that some specific clinical characteristics, as well as treatment with DMTs, are linked to less future disability for POMS.
- In November 2021, a highly topical report shed light on current international trends in the treatment of MS in children and the impact of the COVID-19 pandemic. Key findings included: (i) Fingolimod and β-interferons are the most frequently used therapies in paediatric MS, (ii) there is a trend of moving from injectables towards highly effective therapies and (iii) the COVID-19 pandemic only slightly affected prescribing patterns in POMS.
- In December 2021, a new study published in Springer dove deep into differential diagnosis, prognosis and disease-modifying treatment (DMTs) for POMS. The key takeaways included confirmation that (i) a significant disparity exists in the availability of DMT options between adult-onset MS and its pediatric counterpart; and (ii) multiple logistical and ethical concerns hinder the development and testing of DMTs for that population.
- In May 2021, researchers in Italy published an in-depth report discussing the current state of the art of POMS therapy, as well as newer therapies (oral and infusion disease-modifying drugs) and those still under review.
Recommendations for caregivers: the need for a specialised approach
Finding the right support for children with MS is important. In an article released today, the European Multiple Sclerosis Platform (EMSP) provided an updated range of recommendations to caregivers of children and adolescents with MS.
“Parents or other carers of children and adolescents living with MS need emotional, informational, and financial support to allow them to support the child’s wellbeing along with their own. Yet across Europe there is a lack of initiatives for them” — EMSP, 28 Feb 2022
EMSP has long advocated that paediatric MS requires a specialised approach. In its most recent MS Barometer report – released in 2020 – it noted that not all countries have appropriate provision of care for paediatric MS. Of the 35 countries participating in the survey, only seven had rare disease management programmes that include paediatric MS.
The report also highlighted three key areas in which the clinical, emotional, educational and practical needs of young people with MS can be quite different to those of adults with MS:
- “Most children and adolescents are diagnosed with relapsing remitting MS, and will have slower disease progression than people who are diagnosed in adulthood.
- As a result of their young age at onset, people with paediatric MS may be relatively younger when their disability progresses than people who are diagnosed as adults.
- Children with MS may have poorer academic performance than their peers, and greater efforts are needed to ensure that they have equal opportunities to learn and develop.”
Diagnosing MS in children is more difficult than in adults, in part because of the prevalence of similar symptoms associated with other childhood disorders. However, thanks to the both advances in technology and increased awareness of childhood MS among neurologists, the number of children falling through the diagnostic MS cracks is declining.
ECTRIMS applauds the efforts made over the last year in enhancing research on this rare disease within the larger world of MS. As always, we will continue to support the MS research and neurological community in strengthening communication and promoting research for the ultimate benefit of all people affected by MS.
ECTRIMS Insights articles are produced with an intent of being a neutral source of information sharing and objective analysis for the MS and neuroscience community. Unless otherwise stated, cited information in our articles does equivocate official endorsement from ECTRIMS.