New Cancer Family History Guidance From ASCO

A new set of recommendations are now available for oncologists on how to collect and utilize the cancer family history of a recently diagnosed cancer patient. The recommendations were released by the American Society of Clinical Oncology (ASCO) and are published in the Journal of Clinical Oncology. This is the first guidance specifically on how oncologists can use family history information to assess whether the patient may have a hereditary form of cancer and to identify those who may have a hereditary predisposition to cancer. The guidelines also review how to refer those patients to appropriate genetic testing and counseling.

The guidelines outline the need for the collection of both an adequate amount of cancer family history and the patient’s own cancer history to establish whether the cancer is indeed hereditary.

“Identifying those patients with cancer who have an inherited cancer predisposition syndrome has significant benefit both to the patient and to at-risk relatives,” wrote Karen H. Lu, MD, of the University of Texas MD Anderson Cancer Center in Houston, Kevin S. Hughes, MD, medical director of the Bermuda Cancer Genetics and Risk Assessment Clinic at Massachusetts General Hospital in Boston, and co-authors. The knowledge of whether a cancer is hereditary can affect both the short- and long-term treatment and cancer care management, said the authors.

An important part of collecting and assessing cancer family history is to identify family members at risk who may then require specific screenings and/or prevention strategies, depending on the cancer and mutation inherited.

It is estimated that approximately 5% to 10% of cancers have a hereditary component. The guidelines provide a recommendation on the minimum amount of information on cancer family history required to make an accurate assessment. Cancer family history can be difficult to obtain and collecting this type of information remains a barrier, the guidelines state. The ASCO Cancer Genetics Subcommittee states that the best way to address this barrier is to 1) define a minimum cancer family history, 2) provide guidance regarding interpretation and next steps, and 3) identify current barriers to accurate family history taking and interpretation, as a way to clarify how best to go about the data collection process.

The minimum family history that should be obtained, according to the ASCO recommendations, are the family history of cancer in first-degree relatives (parents, children, and full siblings) and in second-degree relatives (grandparents, aunts/uncles, nieces/nephews, grandchildren, and half siblings). For each relative, the type of cancer, the person’s age at diagnosis for each primary cancer, and whether the relative is from the maternal or paternal line should be recorded. This family history should be recorded upon diagnosis and updated periodically throughout the patient’s care.

A comprehensive family history would consist of three generations of information, but it should be emphasized that this may not be obtained or known, and that the most important histories are of close family members.

Patients should also be asked about prior genetic testing or any known hereditary cancer predisposition syndrome.

The ASCO guidelines also provide recommendations on how to evaluate the family history. For example, younger age of cancer onset; multiple relatives affected with cancer on the same side of the family; and multiple primary tumors, particularly in the same organ, in one relative are all red flags that there may be a hereditary predisposition to cancer in the family.

The guidelines also provide information on the types of cancer genetic screenings available.

The ASCO guidelines outline barriers to obtaining an adequate cancer family history and provide ways to overcome these barriers. For example, while clinicians may lack the expertise and tools needed to collect and analyze family history, the increasing prevalence of electronic health records may be able to mitigate these obstacles if these records included a family history section collected for the patient. The authors encourage the development of specific health records software for the storage and interpretation of family histories to improve payer policies and reimbursement. The authors also acknowledge that time barriers, as well as payer policy barriers, may exist for genetic counseling and testing.

The guidelines also list easily accessible family history collection resources and online tools to assist the clinician, such as CancerGene and the National Society of Genetic Counselors.

“The recommendations described are designed to provide guidance to oncology providers on what constitutes the minimum family history that should be collected for every patient with cancer, as well as to provide the next steps for integration of risk assessment and genetic testing into clinical practice,” concluded the authors.

In a pilot study published concurrently with the ASCO guidelines, Marie E. Wood, MD, of the University of Vermont, and colleagues assessed the quality of cancer family history and referral for genetic counseling and testing among oncology practices. The pilot test study is part of ASCO’s Quality Oncology Practice Initiative (QOPI). The study found that there were low rates of cancer family history recordings. They also found low rates of referrals for those with breast or colorectal cancers, although referral rates for counseling were higher for those patients with breast cancer.

The study showed that of the 10,466 colorectal cancer and breast cancer patients with a first-degree family member with cancer, 77.4% had this information as part of their medical records, and for those with a second-degree family member with cancer, 61.5% of the patients had this in their medical records.