Patient and Public Involvement and Engagement (PPIE) is central to the work of the TRICIA consortium, ensuring that the lived experiences of patients and families directly shape our research priorities and clinical approaches. In paediatric rheumatology, understanding these perspectives is particularly vital, especially when exploring sensitive procedures such as synovial biopsy in children with Juvenile Idiopathic Arthritis (JIA).
On Friday 1st December 2023, a focus group with children and young people diagnosed with JIA and their parents was held at The Exchange, Centenary Square, Birmingham. The session explored the acceptability of biopsy procedures under local anaesthetic with sedation, and gathered views on the timing, communication, and practical aspects of undergoing such procedures.
Key Insights from the Focus Group
1. Anxiety and Pain Management
Participants highlighted concerns around pain, anxiety, and past experiences. They stressed the need for honest, age-appropriate explanations, and reassurance about how pain and anxiety will be managed—particularly the use of sedation and what the procedure would feel like.
2. Tailored Information and Education
Families called for better, clearer educational resources. Videos, visual aids, and real-life patient stories were suggested to help demystify the procedure and build confidence in what to expect.
3. Timing and Practical Considerations
There was a strong preference for biopsies to be performed when the joint is less inflamed or more stable. Concerns were raised about additional hospital visits and balancing procedures with school and family life, highlighting the need for careful planning and flexibility.
4. Supporting Research Participation
Despite concerns, there was a clear willingness to take part in research—especially when families understood how their participation could help shape future treatments and improve care for others with JIA.
5. Communication and Trust
Families emphasised the importance of building rapport with the clinical team and maintaining open, honest conversations. Clear explanations, opportunities to ask questions, and summary documents following discussions all helped to build trust and support informed decision-making.
Taking This Work Forward
The TRICIA consortium recognises that meaningful involvement of patients and families is not optional—it is essential. The insights shared in this focus group will directly inform how we design, deliver, and communicate biopsy procedures as part of our research in childhood arthritis.
We are committed to:
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Developing age-appropriate educational materials, including videos.
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Exploring ways to minimise the burden of additional appointments.
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Ensuring clear, empathetic communication around biopsies.
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Embedding this feedback into future clinical protocols and research planning.
This focus group is part of our broader effort to make lived experience a core component of TRICIA’s work—ensuring that our studies are designed with patients and families, not just for them.
We are deeply grateful to all the children, young people, and parents who shared their experiences so openly. Their voices are helping to shape a more compassionate and effective approach to paediatric rheumatology research.
