Teenage and Young Adult Cancer Survivor Study (TYACSS)

The Department of Health, the National Institute for Health and Clinical Excellence and the National Cancer Research Institute have all identified a need and priority for accurate information concerning the risk of adverse health outcomes among survivors of cancer diagnosed in teenage and young adulthood.

A large population-based investigation addressing a wide spectrum of fatal and non-fatal adverse health outcomes will provide an evidence base of importance for: counselling, educating and empowering survivors; creating and updating guidelines for clinical follow-up; preparing “survivorship care plans”; educating health care professionals; evaluating proposals for future treatment protocols from a risk as well as benefit perspective; assessing potential recalls to clinic of subgroups at substantially increased risk; providing a basis for more detailed aetiological studies.

The objectives of the research are to establish a database of almost 300,000 individuals diagnosed with cancer aged 15 to 39 years, in England and Wales, between 1971 and 2006. This database would be used to investigate the observed and expected risks of: specific causes of death, specific types of subsequent primary cancer and specific types of non-cancer morbidity (including cardiovascular, pulmonary, urological, hepatic and endocrine conditions). Evidence for the cure of specific types of cancer would also be assessed.

Record linkages between the established database and the national death and cancer registries, the Hospital Episode Statistics (HES) for England, the Patient Episode Database for Wales (PEDW) in Wales and the Myocardial Ischaemia National Audit Project (MINAP) will be undertaken.

From such linkages it will be possible to identify subgroups of patients (defined in terms of type of cancer, age at treatment, calendar year of diagnosis, period of follow-up, attained age and sex) at a substantially increased risk of specific adverse health outcomes.

The study, funded by Cancer Research UK in 2010, will be the first comprehensive investigation of fatal and non-fatal serious adverse health outcomes of cancer treatment in teenagers and young adults and the population-based design and large sample size would undoubtedly lead to a landmark contribution.