Addressing challenges in the transition of childhood arthritis to adult care

Rheumatic diseases can affect people during childhood, with juvenile idiopathic arthritis (JIA) most common. In addition to the need to raise awareness of childhood arthritis in general, there is also a critical need to ensure an effective transition for these young patients from pediatric to adult care. EULAR – The European Alliance of Societies for Rheumatology – included sessions on childhood arthritis at its 2024 conference 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 social factors such as stigma and isolation. Raising awareness about childhood arthritis is vital in combating these issues to improve the lives of those living with JIA. A plenary abstract at the 2024 EULAR conference shared work from Juvenile Arthritis Research – a UK patient organization involved in a variety of projects to raise awareness and support for patients with JIA 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 through these windows every day.

As a result, these initiatives have reached many thousands of people and generated considerable interest. It is hoped that this will prove a vital step in reducing delays in diagnosis, as well as reducing the burden of loneliness and stigma. Importantly, many of these projects are low-cost and the ideas can be replicated in other sectors. Introducing, Rebecca Beesley said “Taking innovative approaches can deliver key messages to the community, supported by high-quality and validated clinical information.”

But awareness and diagnosis are not the end of the battle for childhood arthritis. New research in Italy explores the transition from pediatric to adult health care—a critical moment in an adolescent’s developmental trajectory. This was based on a survey of patients aged 14 to 20 and their carers.

Presenting the work at EULAR 2024, Matteo Santopietro emphasized that one of the main obstacles faced by families and patients in the transition from their pediatric rheumatologist to an adult is the lack of clear information about this process. He went on to say that “there is often unstructured communication between the two doctors, and a risk of interruption of therapeutic continuity.”

In fact, the results showed that up to 30% of caregivers felt they were not fully informed about the transition process. For patients, three critical areas were identified. First, there are bureaucratic aspects that make the transition process too long. In addition, patients reported that there was insufficient communication and coordination between their pediatric and adult physicians. 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 that this made them feel lonely.