Tackling challenges in childhood arthritis transition to adult care
Rheumatological diseases can affect people during childhood, the most common being juvenile idiopathic arthritis (JIA). As well as a need to generally raise awareness of childhood arthritis, there is also a crucial need to ensure effective transition for these young patients from pediatric to adult care. EULAR – The European Alliance of Associations for Rheumatology – included sessions on childhood arthritis at its 2024 congress in Vienna.
Community awareness that children and young people get arthritis is low. 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 organization 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 pediatric 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 pediatric 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 pediatric 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.
Beesley, R., et al. (2024) Novel and innovative approaches to raising awareness of childhood arthritis. Annals of the Rheumatic Diseases. doi.org/10.1136/annrheumdis-2024-eular.845.
