Patient and Public Involvement and Engagement (PPIE) plays a vital role in shaping healthcare research, particularly in paediatric rheumatology where understanding patient perspectives is crucial for improving care and outcomes. In this article, we present insights gathered from a focus group session conducted with patients diagnosed with Juvenile Idiopathic Arthritis (JIA) and their parents. The session aimed to explore the acceptability of biopsy procedures under local anaesthesia with sedation and discuss the timing and circumstances of such interventions. The focus group session was held on Friday, 1st December 2023, at The Exchange, Centenary Square in Birmingham.
Understanding Patient Perspectives:
The focus group session provided valuable insights into the concerns, preferences, and considerations of patients and parents regarding biopsy procedures in JIA. Participants expressed various concerns, including anxiety about pain, the impact of previous experiences, and the need for clear information and education about the procedure.
Key Insights and Best Practices:
- Addressing Anxiety and Pain Management: Participants emphasised the importance of managing anxiety and pain associated with biopsy procedures. Providing clear information about the procedure, including the use of sedation and potential sensations, can help alleviate anxiety and improve patient experience.
- Tailoring Information and Education: Participants highlighted the need for tailored information and education materials to help patients and parents better understand the procedure. Videos showcasing previous experiences and explaining the process in detail were identified as valuable resources.
- Timing and Circumstances of Biopsy: Discussions revolved around the timing and circumstances of biopsy procedures, with participants expressing preferences for conducting biopsies when the joint is better. Concerns about additional hospital visits and procedures were also raised, emphasising the importance of considering patient and family circumstances.
- Research Participation and Future Treatments: Participants expressed willingness to participate in research studies involving biopsies, particularly if they understood the potential benefits for future treatments and advancements in JIA care.
- Communication and Informed Consent: Building rapport with the medical team and maintaining open, honest communication were identified as essential for enhancing patient trust and facilitating informed consent. Participants valued being contacted about research studies and appreciated summary documents summarising discussions.
The insights gathered from the focus group highlight the importance of PPIE in paediatric rheumatology research, particularly in understanding patient perspectives and preferences regarding biopsy procedures in JIA. By incorporating patient and public input into research design and practice, healthcare professionals can ensure that interventions are acceptable, accessible, and aligned with the needs and priorities of patients and families.
