Investigating long-term outcomes and cure for children and young people diagnosed with cancer

Survival for children and young adults (CYA) diagnosed with cancer has improved substantially over recent decades, with over 80% currently diagnosed expected to survive at least 5-years. However, survivors are at increased risk of the late effects of their treatment, with many reporting chronic health conditions in later life. The purpose of this project was to investigate cure and long-term health outcomes in CYA with cancer in Yorkshire using data from a population-based cancer registry. The study included 5471 patients diagnosed with a primary tumour in Yorkshire between 1990 and 2011 aged under 30. Statistical cure models were utilised to describe survival trends. These models simultaneously estimate the percentage ‘cured’ and the survival of those ‘uncured’. The percentage cured is a summary of long-term survival while the median survival time of the uncured provides important information on those who are not long-term survivors. Generally for most diagnostic groups there was an improvement in survival over time which was mainly driven by an increase in the proportion of patients cured rather than an increase in the survival of the uncured. Long-term morbidity was assessed via linkage to hospital admission data for respiratory and cardiovascular disease and subsequent tumours obtained from cancer registrations. Long-term CYA had increased risk of each of these outcomes compared to the general population. Analysis incorporating the cumulative burden of all subsequent neoplasms and all respiratory and cardiovascular hospitalisations combined found that by age 40, an individual experienced an average of 2 of these events, mainly driven by hospitalisations for respiratory conditions. Findings from this study provide an evidence base to aid risk-stratification for the long-term follow-up care for this high risk population.