The British Childhood Cancer Survivor Study: Objectives, methods, population structure, response rates and initial descriptive information

Michael Hawkins, Emma Lancashire, David Winter, Clare Frobisher, Raoul Reulen, AJ Taylor, M C G Stevens, M Jenney

    Research output: Contribution to journalArticlepeer-review

    143 Citations (Scopus)

    Abstract

    BACKGROUND: In Britain 75% of individuals diagnosed with childhood cancer survive at least 5 years. The British Childhood Cancer Survivor Study was established to determine the risks of adverse health and social outcomes among survivors. To be eligible individuals were diagnosed with childhood cancer in Britain between 1940 and 1991 and survived at least 5 years. The entire cohort of 17,981 form the basis of population-based studies of late mortality and the risks/causes of second malignant neoplasms using national registration systems. METHODS: A postal questionnaire was sent to survivors who were alive and aged at least 16 years via their primary care physician. RESULTS: Of the 14,836 survivors eligible to receive a questionnaire, 10,483 (71%) returned it completed. Of the 13,211 who were mailed a questionnaire by their primary care physician 10,483 (79%) returned it completed. Outline treatment information concerning initial radiotherapy, chemotherapy and surgery is available. CONCLUSIONS: This is the largest available population-based cohort of childhood cancer survivors to have included investigation of a wide spectrum of adverse outcomes (the risk of which might be increased as a result of childhood cancer or its treatment). The study should provide useful information for counselling survivors, planning long-term clinical follow-up and evaluating the long-term risks likely to be associated with proposed treatment strategies.
    Original languageEnglish
    Pages (from-to)1018-1025
    Number of pages8
    JournalPediatric Blood & Cancer
    Volume50
    Issue number5
    Early online date11 Sept 2007
    DOIs
    Publication statusPublished - 1 May 2008

    Keywords

    • survivorship
    • childhood cancer
    • cancer survivors
    • late effects
    • quality of life
    • outcomes research

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