934 60 years of childhood cancer in the West Midlands

BackgroundThe West Midlands Regional Children’s Tumour Registry (WMRCTR) is a specialist paediatric cancer registry. Established in 1984, it records all cases of childhood cancer (including benign CNS tumours) in the West Midlands region which accounts for around 9% of the UK population. The WMRCTR has detailed records of children’s cancers from 1957 onwards. The past 60 years have seen huge improvements in childhood cancer survival with five year survival for many diagnoses now exceeding 90% both nationally and in the West Midlands region.ObjectivesThe West Midlands region has a diverse and multi-ethnic population with wide variations in population structure, density and deprivation. The main objective was to produce an historical overview of childhood cancer incidence and survival rates in the West Midlands region using the detailed information available within the WMRCTR.Methods7913 cases were included; 4411 males and 3502 females (M:F ratio 1:1.3). Cases were aged 0–14 years, resident in the West Midlands with a malignancy/benign CNS tumour diagnosed between 01/01/57 and 31/12/16. International Classification of Childhood Cancer coding was applied. Detailed descriptive statistics for 45 different diagnostic groups and sub-groups were compiled including subsequent malignancies and deaths from all causes. Survival by decade of diagnosis was calculated using Kaplan-Meier survival analysis. Age and sex-specific incidence rates per million and directly age standardised incidence rates were calculated. Vital status was verified against PHE data and the NHS summary care record.ResultsMost diagnoses showed steady survival gains over time. Five year survival from leukaemia was 4.6% [CI 2.6–7.3] between 1957–1966 but 88.5% [CI 84.9–91.3] by 2007–2016 with acute lymphoblastic leukaemia reaching 91.8% [CI 88.1–94.3]. Although not reaching statistical significance, other diagnoses (NHL particularly) showed a decrease in five year survival between recent decades (77.4% [CI 66.4–85.9] during 2007–2016 compared with 85.9% [CI 74.7–92.4] during 1987–1996). Patients with CNS tumours showed improved survival overall. By 2007–2016 five year survival for ependymoma, astrocytoma and medulloblastoma was 95.7% [CI 72.9–99.4], 86.9% [CI 80.3–91.3] and 68.0% [CI 52.0–79.7] respectively. Deaths within 1 year of diagnosis fell from 57.41% to 7.19% over the study period however certain diagnoses showed a notable rise in late mortality. Despite survival rates in excess of 95% for the past two decades, 13% of patients with bilateral retinoblastoma developed a subsequent malignancy with 23.68% of deaths after 20 years. In Hodgkin’s disease, 19.35% of deaths occurred after 20 years with 9% of patients developing a subsequent malignancy.ConclusionsStatistics were comparable to national data with a small number of disease groups requiring further case mix evaluation (notably NHL, neuroblastomas > 1 year and renal tumours). Amongst patient with liver tumours, ependymoma, astrocytoma and medulloblastoma, the prognosis over the last decade is substantially better than equivalent nationally reported outcomes although small numbers and thus wide confidence intervals must be considered. Overall, steady, sustained improvements in survival were seen, attributable to a greater understanding of tumour biology, intensification of multi-agent chemotherapy and new treatments. The importance of follow-up throughout adulthood to monitor for late effects and subsequent malignancies was clearly demonstrated.