It is estimated there are around two million people in the UK today who are “living with and beyond” cancer. Macmillan Cancer Support and the National Cancer Intelligence Network are working in partnership to better understand this survivorship population. Children, teenagers and young adults (CTYA) have different needs to other sections of the cancer survivorship population. Children may experience effects from treatment on their physical growth, fertility, academic achievement, family life, emotions and social relationships; they may also go on to develop second cancers.
By analysing national patient-level datasets, our project aims to identify the characteristics and needs of the CTYA cancer population to provide a richer picture of cancer experiences and help improve care and outcomes.
We have produced 20-year limited duration cancer prevalence analysis for people aged 0-24, first diagnosed with cancer between 1991 and 2010. This study segments these data by cancer type, age, sex, time since diagnosis, UK, sub-national areas, deprivation quintiles and multiple tumours.
Based on the period 1991-2010, there are more than 26,500 individuals living with and beyond cancer in the UK who were diagnosed as children, or as teenagers and young adults; 54% are male. Almost 10,000 were diagnosed as children (0-14) and over 16,500 between the ages of 15 and 24. Of those aged 0-24 at the end of 2010 over half have been living with and beyond cancer for five years or more. Further results by cancer type and care pathways will be presented.
Our analysis provides a new and more granular understanding of the CTYA cancer survivorship population in the UK. This should prove useful for commissioners, as well as healthcare, social care and educational providers, to understand and support the optimisation and personalisation of services for younger people diagnosed with cancer.