Documenting a cancer patient’s family history of cancer is important in establishing risk for primary and secondary cancer and identifying individuals who may be candidates for genetic counseling and genetic testing. Prior studies have demonstrated low rates of family history documentation and low referral rates for genetic counseling and genetic testing.
In 2011, ASCO’s Quality Oncology Practice Initiative (QOPI) pilot tested new measures to evaluate the practice of family history taking and referral for genetic counseling and testing in patients with either breast cancer or colorectal cancer – cancers that have a strong family history component.
QOPI is a national quality assessment and improvement program involving more than 750 registered oncology practices across the country that is designed to measure care provided in outpatient oncology practices against evidence-based and expert consensus care recommendations, and therefore inform quality improvement activities.
In this study, researchers assessed the documentation of a complete family history (first- and second-degree relatives and documentation of age at cancer diagnosis), referral for genetic counseling or genetic testing, and outcomes of this referral.
“An accurate family history and appropriate referral to genetic testing has important implications for the treatment and follow-up of patients, as well as for their family members,” said lead study author Marie Wood, MD, professor of medicine, director of the Familial Cancer Program and deputy director of hematology/oncology at University of Vermont, in Burlington, VT.
“We found that community oncologists were better at documenting family history information than we thought they would be, but there is room for improvement.”
In the study, 213 practices participated and looked through 10,466 patient charts.
Findings were 77 percent of patient charts included first-degree family histories of cancer, and 61 percent documented second-degree histories as well. However, less than a third of the patient charts documented the ages at cancer diagnosis of relatives.
22 percent of all patients were referred for genetic counseling or genetic testing. Of patients with hereditary risk (defined by selected risk guidelines) 52 percent of breast cancer and 26 percent colorectal cancer patients were referred for counseling or testing.
When genetic testing was performed by the practice, consent was documented 77.7 percent of the time and results were discussed with 78.8 percent of patients. It is generally recognized that the standard three-generation family history takes an hour to complete with the help of a qualified genetic counselor. That is too long to be feasible in community oncology practices, Dr. Wood said.
ASCO’s Cancer Prevention Committee is working to define standard family history questions for oncologists to ask and to raise awareness of the importance of taking a family history so that patients with the strongest family histories are referred for genetic testing.
Eventually, the hope is that a shorter and easier to implement standard family history would be developed.