Managing the challenges of transitioning pediatric arthritis care to adult care

Rheumatological diseases can affect people already in childhood, and the most common of them is juvenile idiopathic arthritis (JIA). In addition to the need to raise awareness of arthritis in children generally, there is also a key need to ensure the effective transition of these juvenile patients from pediatric to adult care. EULAR – the European Association of Rheumatology Associations – organized sessions on pediatric arthritis at its 2024 congress in Vienna.

Public awareness that children and adolescents have arthritis is low. This is associated with delays in diagnosis, poorer clinical outcomes and adverse social factors such as stigma and isolation. Raising awareness of arthritis in children is crucial to combating these problems and improving the lives of people with JIA. The abstract plenary session of the EULAR 2024 congress presented the work of Juvenile Arthritis Research – a patient organization in the UK that is involved in various projects aimed at raising awareness and supporting 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-format information posters in building windows. It is estimated that over 20,000 vehicles pass through these windows every day.

Thanks to this, these initiatives reached many thousands of people and aroused great interest. We hope this will be a significant step towards reducing delays in diagnosis and reducing the burden of loneliness and stigma. Best of all, many of these projects are inexpensive and the ideas can be replicated in other areas. Presenting, Rebecca Beesley said: “Adopting an inventive approach can deliver key messages to society, supported by high-quality and validated clinical information.”

But awareness and diagnosis are not the end of the fight against childhood arthritis. Fresh research from Italy examines the transition from pediatric to adult healthcare – a key moment in an adolescent’s development journey. This was based on a survey of patients aged 14 to 20 and their carers.

Presenting work at EULAR 2024, Matteo Santopietro emphasized that one of the main obstacles that families and patients face in the transition from pediatric to adult rheumatologist is the lack of clear information about the process. He further added that “unstructured communication often occurs between two doctors, which creates the risk of interruptions in treatment continuity.”

In fact, the results showed that as many as 30% of caregivers felt they did not have complete information about the transition process. For patients, three critical areas were identified. First, there are bureaucratic aspects that make the transition process excessively long. Additionally, patients reported that communication and coordination between their pediatric and adult physicians was inadequate. Finally, there was an emotional or psychological aspect – including the need to adapt to a novel medical environment and take more responsibility for their own health – with patients reporting that this made them feel alone.