Mike Hawkins - Overview
A national population-based cohort study has been established relating to the 18,000 individuals who survived at least 5 years after being diagnosed with childhood cancer in Britain between 1940 and 1991 inclusive. Initially the 14,000 survivors aged at least 16 years will be sent a postal questionnaire, by their general practitioner on behalf of the study, to determine whether any elements of the anti-cancer treatment which they received may have increased their risk of developing adverse health outcomes. Such adverse health outcomes include cardiac, pulmonary, intestinal renal, hepatic and fertility problems. Outcomes of all pregnancies will be ascertained and the risk of adverse pregnancy outcome investigated in relation to elements of treatment received for childhood cancer. Other areas explored with the questionnaire include self-evaluated health status (SF-36), extent of use of health services, educational attainment, occupational status, smoking and alcohol consumption, and any problems encountered obtaining medical or life insurance. Information concerning the occurrence of cancer, congenital anomalies or genetic disease in all first degree relatives will be sought with the questionnaire.
To complement the adverse health outcome data collected with the postal questionnaire survey, information on treatment received for childhood cancer will be obtained from clinical trial co-ordinators and the original treatment hospitals. Obtaining treatment information will be carried out in close co-operation with the 20 United Kingdom Children’s Cancer Study Group treatment centres which are distributed throughout Britain. For the purposes of cohort analyses summary treatment information will be obtained on all survivors. Detailed treatment information will be obtained in subsequent nested case-control studies of those adverse health outcomes which are identified as occurring in excess in the cohort analyses.
This national population-based study should provide an unrivalled source of reliable and unbiased information for: counselling survivors and their families, planning clinical long-term follow-up strategies of survivors with knowledge of which groups of survivors are at greatest risk of adverse health outcomes, and deciding on future treatment protocols with knowledge of the long-term risks as well as survival benefits of previous treatments.
The British Childhood Cancer Survivor Study was approved by MREC and every LREC in Britain.