PANCARESURFUP · PanCare Childhood and Adolescent Cancer Survivor Care and Follow-up Studies

Over the last 40 years, treatment for childhood and adolescent cancer has improved greatly; 5- year survival after childhood cancer is now 80% in developed countries. Approximately 1 individual in 750 of young adults is now a childhood cancer survivor. Epidemiologic data on the number of European childhood cancer long-term survivors are not available, but estimates suggest a number between 300,000 and 500,000. However, significant differences in both survival and services for long-term follow-up exist across Europe. Recent research from North America has shown that the frequency of late complications continues to rise as the length of follow-up increases with, so far, no evidence of a plateau of incidence. Some late complications of treatment lead to chronic ill health or disability, and thereby constitute a significant burden both on individuals and families, and on health services and society. However, there is considerable opportunity for early identification and appropriate management of complications to improve the survivors’ health and quality of life, and to maximise efficient use of health services. PanCareSurFup proposes an integrated group of research and service projects to meet these needs. PanCareSurFup will, through cooperation with existing registries and databases, collect data on the risks of complications of cancer treatments to create a retrospective European cohort. Using this cohort research will centre on cardiac toxicity, second cancers and late mortality, with service projects based on a study of models of follow-up and transition to adult care. PanCareSurFup will describe risks of complications of treatment received. Risk prediction and guidelines for care and education will be based on our research and existing evidence, and tailored for each country. The expected benefit is to provide every European childhood cancer survivor with better access to care and better long-term health.