Recommendations for Caregivers of Paediatric MS
The “Recommendations for Caregivers of Paediatric MS” project aims to identify existing resources and unmet needs for caregivers of paediatric MS patients.
In 2019, EMSP conducted and published the results of a rapid systematic review of the literature regarding the unmet needs of those caring for children and adolescents with MS. The survey, which sought information on the support and resources available to caregivers from national MS societies and experts in paediatric MS, was completed with the aim of gathering useful data that would give greater insight into the levels of service provision for children and adolescents with MS and their carers.
At a workshop in June 2021, EMSP brought together experts and practitioners to discuss the issue of many countries not having an MS registry or, if they do, not including those aged under 18. These participants highlighted the need for more data on the longer-term psycho-social outcomes for children and adolescents with MS, such as cohort studies rather than retrospective evidence, as well as on the experiences for children and adolescents when transitioning from child to adult services in national healthcare systems.
In September and October 2021, our collaboration with the expert group resulted in us updating our Recommendations for Caregivers of Children and Adolescents with MS, which was approved by the group of experts and practitioners.
A Systematic review initiated by EMSP in 2019 identified existing resources and unmet needs for caregivers of paediatric MS patients, which served as a reliable source for the development of the “Recommendations for Caregivers of Paediatric Multiple Sclerosis”. The Recommendations suggest ways to support caregivers so they are better equipped to deal with the challenges as well as ways to healthcare and social support systems could respond to provide better support that would improve the quality of care of the children and adolescents.
We were delighted to have the opportunity to spotlight the Recommendations and promotional materials with thousands of attendees of European Committee for Treatment and Research in Multiple Sclerosis –ECTRIMS- October 2022 in Amsterdam, Netherlands. During this time thousands of people learned about the issues and the responses for caregivers and children with MS and how EMSP were working towards positive changes in the lives of the families impacted by the condition.
The recommendations developed in 2019 were reviewed by an expert group in 2021 and the approved version of the recommendations were announced on 28 February 2022 during Rare Disease Day, Paediatric MS is considered a rare disease, affecting approximately 30,000 children and adolescents in Europe.
On 22 July, during World Brain Day 2022, we dedicated all our channels to children and adolescents with MS and their caregivers, publishing the updated recommendations and promotional video, inviting affected people to take action to raise the issues with their public representatives and the wider public.
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