Paediatric MS: Our Recommendations for Caregivers

Multiple Sclerosis was once considered a disease occurring exclusively in adulthood, however, there is growing recognition that MS can be diagnosed at any stage of the lifespan, including in early childhood. Due to advances in imaging technologies and other diagnostic procedures, the number of paediatric MS cases is increasing worldwide, with approximately 3-11% of cases of MS now being diagnosed before the age of 18.

Paediatric MS Considered a Rare Disease

In recent years, the number of children and adolescents being diagnosed with multiple sclerosis (i.e. paediatric MS) has increasingly been recognised. A diagnosis of multiple sclerosis (MS) at such a young age can place extra demands on caregivers, who may be required to take on many diverse roles and caring responsibilities. Developing a better understanding and treatment of paediatric MS, as well as supporting and empowering MS carers, have been identified as key priority actions by the European Multiple Sclerosis Platform’s (EMSP).

The 2020 MS Barometer found that there are more than 30,000 cases of paediatric MS in the 22 countries responding to this question. Given estimates on the total population with MS in Europe and the estimated prevalence of paediatric MS, this is highly likely to be an underestimate.

Raising Awareness on Rare Disease Day 2022

On Rare Disease Day 2022, EMSP stands with children with paediatric MS, their parents, caregivers and healthcare professionals. MS is an unpredictable disease that every person will experience differently. Children diagnosed with MS and their caregivers need extra support to deal with the implications of this chronic disease at a young age.

On this ­­Rare Disease Day, help us make an impact for children and adolescent­­­s with MS by sharing our resources on social media. Together, we’re raising awareness by supporting the young people whose lives are massively impacted by MS via talking to others about the condition and the needs of caregivers of children and adolescents living with Multiple Sclerosis.

MS Care for Children in Europe

Not all countries have an appropriate provision of care for paediatric MS. For example, of 35 countries reporting to the survey:

• 25 countries reported that paediatric patients have full access to MS treatments approved in their country
• 19 countries have a specialised clinic for paediatric MS
• 12 countries have clinical guidelines for the treatment of paediatric MS
• 7 countries have rare disease management programmes, policies or plans which include paediatric MS.

Carers face unique challenges and require targeted support

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:

• Just 16 countries provide any social support specific to paediatric MS carers
• Only 18 countries provide child disability allowances.

EMSP Recommendations for Caregivers of Paediatric MS

A Systematic review initiated by EMSP in 2019 identified existing resources and unmet needs for caregivers of paediatric MS patients, which served as a good source for the development of the “Recommendations for Caregivers of Paediatric Multiple Sclerosis”. The aim of the recommendations is to improve care of children and adolescents with multiple sclerosis by ensuring that the caregivers are better equipped to deal with their challenges and the relevant systems provide better support.

The recommendations developed in 2019 were reviewed by an expert group in 2021 and the approved version of the recommendations will be published soon. Stay tuned and follow the EMSP media channels for further updates.