An Internal Performance Assessment of CancerGene Connect: An Electronic Tool to Streamline, Measure and Improve the Genetic Counseling Process
OBJECTIVES To determine the accuracy of prostate cancer reports and completeness of the family history provided by unaffected men with a family history of prostate cancer. A positive family history is associated with increased prostate cancer risk and could influence surveillance recommendations and patient selection for genetic testing in the future. However, the accuracy of prostate cancer reports and completeness of the family history provided by unaffected men is poorly understood. METHODS Eligible respondents were ascertained through participation in a population-based study of prostate cancer. The family history was collected by questionnaire and compared with the verified research pedigree. Information about the family history was also independently collected from spouses. A standard statistical method was used to determine the variables associated with accuracy and failure to report cases. RESULTS A total of 154 unaffected men (51%) responded. Most (82%) reports of prostate cancer cases were verified. Overall, 63% reported a family history that precisely matched the verified family history. The respondents' wives contributed little additional information. Age and degree of relationship to an affected person were associated with both accuracy and completeness of the family history. Verification altered the empirical risk category of 29% of the respondents; however, most (93%) remained at increased risk. CONCLUSIONS Unaffected men with a family history of prostate cancer generally provide a reliable family history. We conclude that surveillance advice can be reasonably based on a man's reported family history. However, the identification of certain high-risk individuals, which may be relevant for selection for genetic testing in the future, requires more extensive ascertainment of the family history.