British Childhood Cancer Survivor Study (BCCSS)

In September 2006 there were 15086 (83.9%) alive and aged at least 16 years, 115 (0.6%) alive and aged under 16 years and 2780 (15.5%) who have died subsequent to surviving at least 5 years. The study methodology for the BCCSS involves sending a self-completion postal questionnaire to each survivor aged at least 16 years via their primary care physician to obtain, among other things, measures of adverse health and social outcomes and family history information. Crude measures of treatment are available from most individuals within the cohort. The general objectives are to obtain estimates of the risk of particular adverse health outcomes occurring among survivors and their offspring and to investigate variation of such risks in relation to several factors including types of childhood cancer and its treatment.

a) To investigate long-term survival and the risk of death subsequent to 5-year survival from specific causes in relation to type of childhood cancer and its treatment. In particular, to compare observed mortality from specific causes of deaths with that expected from the general population.

b) To determine the risks and causes of second primary neoplasms. Cohort studies will address absolute risks and nested case-control studies will address aetiological questions.

c) To investigate the risk of cardiac, pulmonary, renal, hepatic, intestinal and other major organ toxicity in relation to types of childhood cancer and its treatment.

d) To explore the fertility of survivors in relation to types of childhood cancer and its treatment. In particular, to evaluate the risk of premature menopause in specific subgroups of female survivors

e) To assess the risk of adverse outcomes of pregnancy, among female survivors and wives/partners of male survivors, in relation to type of childhood cancer and its treatment. Including recognised miscarriages, induced abortion, stillbirth, low birth weight and congenital anomaly.

f) To monitor the health of the cohort of offspring of survivors. In particular, to compare the observed numbers of deaths from specific causes and the incident number of specific types of cancer with the corresponding numbers expected from the general population.

g) To clarify aggregations of cancer in families affected by childhood cancer. In particular, compare observed numbers of cancers of specific types in first degree relatives with those expected from the general population.

h) To determine the extent of use of health services by survivors and compare it with that expected from the general population.

i) Compare the extent and quantity of smoking and drinking among survivors with that expected from the general population.

j) Compare the educational attainment and occupational status of survivors with those expected from the general population.

k) Compare the self-evaluated health status (SF-36) of survivors with that expected from the general population.

l) Compare the observed patterns of marriage among survivors with that expected from the general population.

m) Quantify the extent and nature of obstacles encountered by survivors in obtaining life and medical insurance.