Every day, oncology clinicians are asked to do more with less. What I mean by this is, reimbursement for many services has gone down or is inadequate, and physicians are asked to do more during a patient visit with less time available. Yesterday I had the wonderful opportunity to present to a local oncology department in partnership with the hospital’s genetic counselor, regarding the importance of capturing comprehensive family history to identify patients appropriate for further cancer risk assessment and genetic testing.
When dealing with a cancer diagnosis, most patients are concerned about treating the cancer in front of them. Many do not know that their cancer might be different. It might be a type of cancer that is a small proportion of all cancers: it might be part of a hereditary cancer syndrome. Hereditary cancer is different and without a diagnostic genetic test, it can go misdiagnosed.
Patients with hereditary cancer carry greatly elevated risks for a second cancer, over the general population. One might argue that all patients who are appropriate for further evaluation (genetic counseling and genetic testing), will be identified via their personal diagnosis. While that statement is grossly inaccurate, it would be fair to argue that the type and age of a patient’s diagnosis can be a major indicator that further risk assessment may be appropriate. In many cases, however, a comprehensive cancer family history is required to determine if the patient is appropriate for further evaluation and assessment. Gathering a cancer family history might seem like a no brainer, but data suggests that gathering a comprehensive cancer family history is actually quite a challenge in an oncology setting.
The American Society of Clinical Oncology published an expert statement in March 2014 that provides a framework for identifying patients with a predisposition to hereditary cancer and how to interpret the information collected in the context of the patient’s diagnosis. Of particular interest in the paper was the section on barriers to capturing a comprehensive family history. Patient barriers included such items as a lack of knowledge regarding family history, small families, and fear of cancer family history information. Physician barriers included inadequate family history sections available in electronic health records (EHR), no adoption of the American Health Information Community core data set within EHR, and cumbersome paper tracking tools.
ASCO‘s recommendations for a Minimum Adequate Cancer Family History include the following information:
- History on BOTH Maternal and Paternal side (Remember most hereditary cancer syndromes are autosomal dominant, not sex-linked. That means you have an equal chance to inherit a damaged gene from either parent.)
- First Degree Relatives Cancer History
- Second Degree Relatives Cancer History
- Each cancer case in the family history should include:
- Age at Diagnosis
- Type of Primary Cancer
- Results of any genetic testing of family members
ASCO further recommends that cancer family history is updated periodically when the oncologist and patient make key decisions about treatment and survivorship. These points include:
- The end of the first phase of therapy
- The time of post-treatment summary
- Beginning of post-treatment survivorship
Updating family history is important, because one new diagnosis may be the different between seeing a suspicious pattern in a family, or that rare cancer that jumps out at a healthcare provider and leads to a hereditary cancer diagnosis. As we roll into October, well-known for its nomination as Breast Cancer Awareness Month, I would encourage you to ask about your family history. Write it down, and on Thanksgiving, ask again. After all, ever since 2004, the Surgeon General has nominated Thanksgiving to be “National Family History Day.”