Quantifying diagnostic intervals and routes to diagnosis for children and young people with cancer in the UK (Childhood Cancer Diagnosis study, CCD): a population-based observational study

Background: Childhood cancer is a global disease burden, with early diagnosis a priority. We quantified diagnostic intervals and referral routes for children and young people (CYP 0-18 years) diagnosed with cancer in the UK. Methods: All CYP diagnosed between September 2020-March 2023 were eligible. Demographic, referral, and symptom data were collected prospectively. Patient interval (PI), diagnostic interval (DI), and total diagnostic interval (TDI) were calculated. Findings: 1957 CYP (mean age 7.4 years, 55% male, 78% white) participated. Median PI, DI, and TDI were 1.1 (IQR 0.1-4.0; range 0-164), 1.7 (IQR 0.4-5.9; range 0-310), and 4.6 weeks (IQR 2.0-11.4; range 0-310), respectively. Intervals were unaffected by sex, ethnicity or deprivation index (IMD). Median TDI was longest in 15-18 years (8.7 weeks, IQR 3.0-17.4) and bone tumours (12.6 weeks, IQR 6.6-23.4) and shortest in under ones (3.7 weeks, IQR 1.0-8.1) and renal tumours (2.3 weeks, IQR 0.9-5.0). 74% (n = 1438) had 1-3 pre-diagnostic healthcare contacts; 67% (n = 1312) presented emergently, with a median of 4.0 (range 0-26) symptoms. CYP with Langerhans Cell Histiocytosis were most likely to have ≥4 visits when compared with leukaemia (adjusted OR 7.48, 95% CI 3.54-15.82), followed by central nervous system, bone, and soft tissue tumours. Interpretation: This study highlights equal access to diagnosis for sex, ethnicity and IMD, but disparities for age and diagnostic groups. These data will inform professional and public health strategies and health policy to accelerate diagnosis for all. Funding: National Institute for Health and Social Care Research (NIHR) DRF-2018-11-ST2-055.