In 2018, European Multiple Sclerosis (EMSP) initiated the project “Recommendations for Caregivers of Paediatric MS” that aims at improving the quality of care received by children and young people with MS and address the challenges faced by caregivers.
The International Paediatric MS Study Group states that an increasing number of cases of Multiple Sclerosis (MS) in children and adolescents have been recorded worldwide. Initial symptoms have been seen as early as 13 months old, with diagnosis occurring as young as two years of age. With the increasing number of paediatric MS cases, there is a growing need for the provision of care for children and adolescents with MS. However, due to the recency of an emerging need and lack of data on paediatric MS, there is a vacuum in policy and action regarding how best to support those with caring responsibilities for children and adolescents with MS.
To address the emerging needs, EMSP initiated the “Recommendations for Caregivers of Paediatric MS” project, which will allow:
- To identify existing resources as well as unmet needs for caregivers of the growing number of paediatric MS;
- To agree on a set of recommendations for caregivers and specialised healthcare professionals;
- To raise awareness on the needs of caregivers through inclusion of the recommendations within EMSPs broader campaigning strategy.