Jasmine Leslie

Objectives: Many childhood-onset chronic conditions continue into adulthood. Life-course research is essential to understand long-term outcomes in these individuals. Parents/guardians consent children into cohort studies and data-linkage with medical records. However, under UK ethics, linkage must stop at age 16 without specific re-consent. This presents challenges, as many young adults have moved, been discharged or changed hospitals. This research aims to understand opinions on contributing data to research studies, particularly continuing to use long-term health outcome data into adulthood. Methods: A Qualtrics survey was developed alongside patient partners and distributed January 2025 via social media, patient partners and national arthritis charities. Ethical approval was granted by the University of Manchester Research Ethics Committee (2024–21972-38819). Results: Fifty-seven adults with childhood-onset arthritis completed the survey; 93% were female, 93% were White, 56% were aged ≥45 years, 46% were diagnosed between 11 and 16 years, and 49% had previously participated in a research study. Overall, 88% reported they would have joined an arthritis research study in childhood, and 79% would consent for study data to link with medical records. Most (95%) participants would join a research study as an adult, and 50% were happy for continued access to medical records after age 16 without explicit re-consent and/or assumed it was already happening. Conclusion: These findings suggest that current consent processes for studies spanning from childhood into adulthood are inadequate. There is a need to re-evaluate consent procedures for life-course research to ensure that paediatric and young people’s research remains a priority, and that young adults with childhood-onset conditions are not unnecessarily excluded from research.

Objectives: JIA affects ∼1–2/2000 children in the UK. Adults with inflammatory arthritis have ∼10% increased malignancy risk. JIA malignancy rates in Nordic data are 3–5/10 000 person years, with conflicting evidence on comparative risk. This study calculated malignancy rates in England of patients with JIA, vs matched controls and general population estimates. Methods: Using UK Primary Care data (CPRD) Aurum, this retrospective cohort study matched patients with JIA (diagnosed <16 years) 4-to-1 with non-JIA controls in England by birth year, gender and practice. Malignancies were identified from (i) NHS-linked hospitalization data and (ii) CPRD read codes. Exposure started at first JIA code date (or matched date for controls), 1 January 2000, or CPRD entry date, whichever was latest. Follow-up continued until end of follow-up of JIA-matched patient (for controls), end of CPRD follow-up, 31 December 2018, first malignancy or death, whichever was first. Cox-proportional hazards models compared malignancy rates. Standardized incidence ratios (SIRs) were calculated against ONS general population estimates by calendar year, age and gender. Results: A total of 3714 patients with JIA and 10 858 matched controls were identified; demographics were similar. Malignancy rates were 6.8 per 10 000 (95% CI: 4.4–10.7) in JIA and 3.1 per 10 000 person years (95% CI: 2.0–4.6) in controls; HR 2.2 (95% CI: 1.2–4.1). Both cohorts had raised SIRs compared with ONS general population estimates. Conclusions: This study found that those with JIA had a doubling risk for malignancies compared with the matched control population. However, it is important to note that malignancy in this JIA patient population is extremely rare with the absolute risk remaining very low.