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Value of database linkage: are patients at risk of familial colorectal cancer being referred for genetic counselling and testing?

Authors

  • C. Wong,

    1. 1 Bio 21:MMIM Project, Melbourne, 2Ludwig Institute for Cancer Research Melbourne, Departments of 3Medical Oncology, 4Surgery and 5Colorectal Medicine and Genetics, Royal Melbourne Hospital and 6Department of Surgery Western Hospital, Melbourne, Victoria, Australia
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  • 1 P. Gibbs,

    1. 1 Bio 21:MMIM Project, Melbourne, 2Ludwig Institute for Cancer Research Melbourne, Departments of 3Medical Oncology, 4Surgery and 5Colorectal Medicine and Genetics, Royal Melbourne Hospital and 6Department of Surgery Western Hospital, Melbourne, Victoria, Australia
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  • 2,3 J. Johns,

    1. 1 Bio 21:MMIM Project, Melbourne, 2Ludwig Institute for Cancer Research Melbourne, Departments of 3Medical Oncology, 4Surgery and 5Colorectal Medicine and Genetics, Royal Melbourne Hospital and 6Department of Surgery Western Hospital, Melbourne, Victoria, Australia
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  • 1 I. Jones,

    1. 1 Bio 21:MMIM Project, Melbourne, 2Ludwig Institute for Cancer Research Melbourne, Departments of 3Medical Oncology, 4Surgery and 5Colorectal Medicine and Genetics, Royal Melbourne Hospital and 6Department of Surgery Western Hospital, Melbourne, Victoria, Australia
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  • 4 I. Faragher,

    1. 1 Bio 21:MMIM Project, Melbourne, 2Ludwig Institute for Cancer Research Melbourne, Departments of 3Medical Oncology, 4Surgery and 5Colorectal Medicine and Genetics, Royal Melbourne Hospital and 6Department of Surgery Western Hospital, Melbourne, Victoria, Australia
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  • 6 E. Lynch,

    1. 1 Bio 21:MMIM Project, Melbourne, 2Ludwig Institute for Cancer Research Melbourne, Departments of 3Medical Oncology, 4Surgery and 5Colorectal Medicine and Genetics, Royal Melbourne Hospital and 6Department of Surgery Western Hospital, Melbourne, Victoria, Australia
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  • 5 F. Macrae,

    1. 1 Bio 21:MMIM Project, Melbourne, 2Ludwig Institute for Cancer Research Melbourne, Departments of 3Medical Oncology, 4Surgery and 5Colorectal Medicine and Genetics, Royal Melbourne Hospital and 6Department of Surgery Western Hospital, Melbourne, Victoria, Australia
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  • and 5 L. Lipton 2,3

    Corresponding author
    1. 1 Bio 21:MMIM Project, Melbourne, 2Ludwig Institute for Cancer Research Melbourne, Departments of 3Medical Oncology, 4Surgery and 5Colorectal Medicine and Genetics, Royal Melbourne Hospital and 6Department of Surgery Western Hospital, Melbourne, Victoria, Australia
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  • Funding: Christine Wong was funded by Bio21 and the Molecular Medicine Informatics Model (MIMM) through the Undergraduate Research Opportunities Programme. MIMM receives funding from the Department of Education Science and Training (DEST) and the Department of Industry, Innovation and Regional Development (DIIRD) (see http://mmim.ssg.org.au).

    Potential conflicts of interest: None

Lara R. Lipton, Department of Medical Oncology Royal Melbourne Hospital, Grattan Street, Parkville, Vic. 3050, Australia.
Email: lara.lipton@mh.org.au

Abstract

Background:  Unique research opportunities are being created in an era of increasingly sophisticated data collection and data linkage. There are Familial Cancer Clinics (FCC) to counsel patients and families about risk reduction strategies and to carry out genetic testing where appropriate. There is currently no objective evidence as to whether appropriate patients are being referred to the FCC.

Methods:  Using a unique resource, the BIO21:MMIM informatics platform, we were able to link data from a prospective colorectal cancer (CRC) database at four Melbourne hospitals with the FCC database for the 4-year period from 2002 to 2005. We determined the number of patients that, on the basis of at least one risk factor suggestive of hereditary CRC, could have been considered for FCC referral, the number that was referred and the number that attended.

Results:  Of the 829 new diagnoses of CRC 228 (27.5%) would potentially have benefited from FCC referral. Of these, 50 persons (21.9%) were referred and 32 (14.0%) attended. The highest referral rates were in young, early-stage CRC patients with a family history and the lowest in late-stage and multiple-polyp patients. Patient sex, language and insurance status did not influence referral or attendance.

Conclusion:  The database linkage capability provided by MMIM has enabled us to carry out a unique study. The results suggest that the rate of appropriate FCC referral is low, that certain subgroups are at particular risk of non-referral and that many referred patients do not ultimately attend. Interventions that increase referral rates and encourage attendance need to be considered.

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