Improving communication of the concept of 'treat-to target' in childhood lupus: a public and patient (PPI) engagement project involving children and young people

BACKGROUND: A treat-to-target (T2T) approach, where treatment is escalated until a specific target is achieved, and re-escalated if the target is lost, has been proposed as a strategy to improve Childhood Systemic Lupus Erythematosus (cSLE) outcomes. Previous studies involving children and young people (CYP) have identified that the concept of T2T can be difficult to understand by CYP and their families. We aimed to explore the views of CYP participating in existing public and patient involvement (PPI) groups in relation to a proposed animation that is being developed to explain the concept of T2T to CYP who will be eligible for a future cSLE T2T trial. METHODS: An illustrated animation storyboard was developed on PowerPoint, to be used alongside a contemporaneous voiceover to simulate the animation for CYP participating in three existing CYP PPI groups (GenerationR, Lupus UK, and YOUR RHEUM). Mixed methods were used to generate CYP feedback on the resource, including on-line surveys and qualitative topic-guided discussion, noting CYP suggestions for improvement. Changes were made iteratively to the resources. Pre/post workshop questionnaires to assess the impact of the resource on their understanding of T2T were completed anonymously. RESULTS: 40 CYP were consulted; 16/40 (40%) from GenerationR (median age 15-years [IQR 12–15]), 12/40 (30%) from Lupus UK (median age 27-years [IQR 22–30]), and 12/40 (30%) from YOUR RHEUM (median age 17-years [IQR 16–21]). 62% of respondents had an underlying rheumatic condition. Pre-workshop median participant understanding of T2T was 2/10 [IQR 1–4], on a 1–10 scale (1 = “no understanding at all”, 10 = “completely confident in my understanding”). After viewing the resource, participant understanding improved to a median of 9/10 [IQR 8–10], p < 0.0001). Overall, participants felt that the animation greatly improved their understanding of the concept of T2T, making several suggestions for improvement. CONCLUSION: Involvement of CYP in research is crucial to help improve the design/delivery of studies, ensuring relevance to CYP and their families. This manuscript demonstrates the involvement of CYP in the development of an animation that will be integral to a future clinical trial, helping to describe the T2T approach in a comprehensible way to eligible CYP and their families, supporting study recruitment. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41927-022-00300-z.