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British Childhood Cancer Survivor Study (BCCSS)
Britain's own survivor cohort, built on national registration rather than on hospital volunteers, which is why it can follow people for half a century and count deaths that nobody reported. Its central finding is that what kills survivors changes with time: recurrence early, second cancers and heart disease late.
Also called: BCCSS
Overview
The BCCSS was established at the University of Birmingham by Mike Hawkins in 1998, funded by Cancer Research UK and the Kay Kendall Leukaemia Fund. Its original cohort was every person diagnosed with childhood cancer in Britain between 1940 and 1991 who survived at least five years: 17,981 people, assembled from national registration so that mortality and second cancers could be counted without anyone having to volunteer. A postal questionnaire sent through primary care physicians reached 14,836 eligible survivors and 10,483 returned it completed, 71 per cent of those eligible and 79 per cent of the 13,211 actually mailed by their doctor. The design paper describes it as "the largest available population-based cohort of childhood cancer survivors to have included investigation of a wide spectrum of adverse outcomes".
The 2010 mortality analysis followed those 17,981 survivors to the end of 2006. There were 3,049 deaths, 11 times the number expected, a standardised mortality ratio of 10.7 (95 per cent confidence interval 10.3 to 11.1). The ratio fell with time but was still threefold higher than expected 45 years from diagnosis (2.5 to 3.9). The important result is what changes underneath that. The absolute excess risk of death from recurrence fell from 97 extra deaths per 10,000 person-years (92 to 101) at 5 to 14 years from diagnosis to 8 (3 to 22) beyond 45 years. Over the same periods the excess from second primary cancers rose from 8 (7 to 10) to 58 (38 to 90) and from circulatory causes from 2 (2 to 3) to 29 (16 to 56). Beyond 45 years from diagnosis, recurrence accounted for 7 per cent of the excess deaths and second primary cancers and circulatory deaths together for 77 per cent.
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The 2016 extension covered 34,489 five-year survivors diagnosed from 1940 to 2006 and followed to 28 February 2014. There were 4,475 deaths, 9.1 times expected (8.9 to 9.4), which is 64.2 excess deaths per 10,000 person-years (62.1 to 66.3). Survivors treated during 1990 to 2006 experienced 30 per cent of the excess number of deaths experienced by those treated before 1970, with the decline being 30 per cent for recurrence or progression and 60 per cent for non-neoplastic causes. Among survivors aged 50 to 59, subsequent primary neoplasms accounted for 41 per cent of excess deaths and circulatory conditions for 22 per cent; among those aged 60 or more the figures were 31 and 37 per cent. The authors state the practical consequence plainly: for survivors aged 60 or more, "circulatory disease overtakes subsequent primary neoplasms as the leading cause of excess mortality".
The limits are those of registration data. Non-fatal illness is captured only by questionnaire, so the chronic-condition prevalences that SJLIFE measures by examination are not available here; and a cohort beginning in 1940 carries treatments nobody uses now, which is exactly why the trend by era is the most useful thing in it.
Holds
Population-based cohort of five-year survivors of childhood cancer in Britain, linked to national death and cancer registration, with questionnaire data on health and social outcomes.
Licence
Access by application to the Centre for Childhood Cancer Survivor Studies
Maintainer
Centre for Childhood Cancer Survivor Studies, University of Birmingham
Notes
top- A cohort that begins in 1940 describes treatments long abandoned. The figures by treatment era, not the overall ones, are what apply to a child treated today.
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