Our objective is to develop a set of recommendations to improve the support received by caregivers and specialised healthcare professionals and to raise awareness and influence positive change in current systems to improve support for caregivers of paediatric MS across Europe.
Ultimately, our goal is to provide better care for children and adolescents with MS . In 2019, EMSP completed and published its report of the rapid systematic review of the literature into the unmet needs of those who care for children and adolescents with MS. The survey aimed at gathering information on the available supports and resources for caregivers completed by national MS societies and experts in the area of paediatric MS.
In June 2021, EMSP organised a workshop with an expert group discussing the fact that many countries lack an MS registry, and even those that do have a registry do not include those aged under 18. The experts and practitioners who participated in the workshop noted that more information is required on the longer-term social outcomes for children and adolescents living with MS, using cohort studies, rather than retrospective evidence, as well as data on the experiences encountered when transitioning from child to adult services.