Despite advances in identifying genetic markers of high risk patients and the availability of genetic testing, it remains challenging to efficiently identify women who are at hereditary risk and to manage their care appropriately. HughesRiskApps, an open-source family history collection, risk assessment, and Clinical Decision Support (CDS) software package, was developed to address the shortcomings in our ability to identify and treat the high risk population. This system is designed for use in primary care clinics, breast centers, and cancer risk clinics to collect family history and risk information and provide the necessary CDS to increase quality of care and efficiency. This paper reports on the first implementation of HughesRiskApps in the community hospital setting. HughesRiskApps was implemented at the Newton-Wellesley Hospital. Between April 1, 2007 and March 31, 2008, 32,966 analyses were performed on 25,763 individuals. Within this population, 915 (3.6%) individuals were found to be eligible for risk assessment and possible genetic testing based on the 10% risk of mutation threshold. During the first year of implementation, physicians and patients have fully accepted the system, and 3.6% of patients assessed have been referred to risk assessment and consideration of genetic testing. These early results indicate that the number of patients identified for risk assessment has increased dramatically and that the care of these patients is more efficient and likely more effective.
The self-reporting of cancer history is becoming increasingly important, as it frequently guides medical decision-making. We studied the accuracy of personal cancer history using a self-administered questionnaire, comparing the results with the Tumor Registry at our institution. Among 39,662 records, we identified 3614 women with a single cancer in the Tumor Registry who reported none or one cancer on their questionnaire. The sensitivity in self-reporting cancers was 85.7%, ranging from 92.1% for breast cancer to 42.9% for leukemia. The accuracy for breast cancer and Hodgkin's Lymphoma was significantly better than other cancers (p=0.00027, CI: 1.4-3.88). Analysis of patient's characteristics showed that Caucasians reported breast cancer more accurately than Asian/Pacific Islanders (p=0.008), and those with Jewish ancestry more accurately than non-Jewish (p=0.0435). These results will help us to improve data collection and thus improve medical decision-making.
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