Community awareness that children and young people get arthritis is low.1 This is associated with delays in diagnosis, worse clinical outcomes, and adverse societal factors such as stigma and isolation. Raising awareness of childhood arthritis is crucial in combatting these issues to improve the lives of those living with JIA. An abstract plenary session at the 2024 EULAR congress shared work from Juvenile Arthritis Research – a patient organisation in the UK that is involved in a variety of projects to raise awareness and support JIA patients and their families. These include a variety of formats – from websites and social media campaigns to bookmarks and information packs for schools – as well as large-scale information posters in the windows of a building. It is estimated that over 20,000 vehicles pass these windows every day.
As a result, these initiatives have reached many thousands of people, and generated significant interest. It is hoped that this will prove to be a vital step in reducing delays to diagnosis, as well as lessening the burdens of loneliness and stigma. Crucially, many of these projects are low cost, and the ideas can be replicated in other areas. Presenting, Rebecca Beesley said "taking innovative approaches can deliver key messages to the community, supported by high-quality and verified clinical information."
But awareness and diagnosis is not the end of the battle for childhood arthritis. New research in Italy is exploring the transition from paediatric to adult healthcare – a crucial moment in an adolescent's developmental direction. This was based on a survey of patients aged 14 to 20, and their caregivers.
Presenting the work at EULAR 2024, Matteo Santopietro highlighted that one of the main obstacles that families and patients face in the transition from their paediatric to adult rheumatologist is a lack of clear information about this process. He went on to say "there is often unstructured communication between the two doctors, and a risk of interruptions in therapeutic continuity."
In fact, results showed that up to 30% of caregivers felt they did not have complete information on the transition process. For patients, three critical areas were identified. First, there are bureaucratic aspects that make the transition process excessively long. In addition, patients reported that there was insufficient communication and coordination between their paediatric and adult doctors. And finally, there was an emotional or psychological aspect – including the need to adapt to new medical environments and take increased responsibility for their own health – with patients reporting this made them feel left alone.
Source
Beesley R, Beesley R. Novel and innovative approaches to raising awareness of childhood arthritis. Presented at EULAR 2024; OP0102-PARE.
Ann Rheum Dis 2024; DOI: 10.1136/annrheumdis-2024-eular.845.
Celano A, Santopietro M. The transition from pediatric to adult healthcare: a leap into the dark? Presented at EULAR 2024; OP0172-PARE.
Ann Rheum Dis 2024; DOI: 10.1136/annrheumdis-2024-eular.5941.
References
1. Beesley RP, Beesley RM. Community awareness of childhood arthritis in the UK. Rheumatol Adv Pract 2024;8(1):rkad099.
About EULAR
EULAR is the European umbrella organisation representing scientific societies, health professional associations and organisations for people with rheumatic and musculoskeletal diseases (RMDs). EULAR aims to reduce the impact of RMDs on individuals and society, as well as improve RMD treatments, prevention, and rehabilitation. To this end, EULAR fosters excellence in rheumatology education and research, promotes the translation of research advances into daily care, and advocates for the recognition of the needs of those living with RMDs by EU institutions.
