Objectives Systematic Patient and Public Involvement and Engagement (PPIE ) aimed to discover the views of young people (YP) on informing patients and their families of the risk of systemic disease (systemic lupus erythematous (SLE), inflammatory bowel disease (IBD) and Behcet’s) given specific symptoms and demographics, in a primary care setting. Whilst this research directly informed a cohort study of primary care data assessing the risk of systemic disease in children and young people who presented to primary care with mouth ulcers, the findings are applicable to the wider primary care context.

Methods A multi-phase approach was adopted to address the aim. An initial meeting with eight members of GenR Liverpool (a group for young people interested in contributing to health care research), established important outcomes and language to be used in the project as a whole. Next, an online survey was distributed via social media posts and mailing lists facilitated by various charities involved with each systemic disease (SLE, IBD and Behcet’s). A total of 218 responses provided further insight into the perception of proposed outcomes and language from both patients and parents. Finally, a meeting with six YP involved with YourRheum (a young person’s advisory group for patients with rheumatic conditions) discussed the results of the primary care cohort study in terms of acceptability and dissemination of the findings.

Results In the first phase meeting, YP felt that it may be reassuring and empowering to know the systemic disease risk associated with their symptoms and demographics. However, they stressed that there must be a balance between ‘realistic and scary’ when communicating risk, and that knowledge is only helpful if there is action that can be taken.

In the second phase, ‘red flag’ information and advice on symptomatic treatment were deemed to be most beneficial at the early stages of diagnosis. YP and their parents felt that a risk calculation would: raise awareness of rare conditions; reduce time to diagnosis; allow preparation time; validate presenting symptoms; provide reassurance; and potentially allow earlier action to be taken. Concerns regarding risk calculation in primary care included: oversimplifying complex presentations; causing unnecessary worry; the risk of misdiagnosis; and the potential to demise patients and their families.

In the final phase meeting, results of the primary care mouth ulcer cohort study were presented and it was deemed that since the risk was ‘low’ (in this study) it would be unhelpful to be informed of the exact risk of systemic disease given the presence of mouth ulcers. However, some patients/parents may be reassured. Nevertheless, since the COVID-19 pandemic, YP with experience of long-term health conditions were keen to highlight the mental health impact of being labelled ‘at risk’. YP preferred age- appropriate, positive language, ideally communicated ‘face-to-face’ by consultants, when receiving information about risk.

Conclusions Overall this PPIE research provides insight into the thoughts, feelings and opinions of YP around the risk assessment of systemic disease in primary care. These views must be considered in any aspect of practice that involves early stage diagnosis or uncertainty.