The American Society of Clinical Oncology has issued the first specific recommendations for oncologists on taking a cancer family history for each new cancer patient.
The recommendations, published as a Special Article now available online ahead of print in the Journal of Clinical Oncology (DOI:10.1200/JCO.2013.50.9257), are designed to help oncologists identify patients with a predisposition to hereditary cancer; refer appropriate patients for genetic testing and counseling; select individualized treatment options for these patients; and personalize their surveillance and survivorship plans.
But, as the new report makes clear, there are a number of specific barriers to thorough cancer family history taking that need to be addressed.
ASCO President Clifford A. Hudis, MD, Chief of the Breast Cancer Medicine Service at Memorial Sloan-Kettering Cancer Center, said he considers an adequate family history key to identifying patients whose cancer may be associated with inherited genetic factors. In a telephone interview, he said that although taking a family history has always been an important part of medicine, it has not been specifically tailored.
“For medical students taking histories, it's all or nothing. Thus, the nice thing about the ASCO position is that it tells you what's enough and what's the minimum.”
The ASCO recommendations represent a marriage of new high-tech tools and the traditional family history taking that all physicians learn, in order to make important genetic links about patients and mine new molecular databases to improve care.
Up to 10 percent of all newly diagnosed cancers are genetically inherited, the guidelines note, which recommend that a minimum adequate family history for a cancer patient be defined as a family history of cancer in both first-degree relatives (parents, children, and full siblings) and second-degree relatives (grandparents, aunts, uncles, nieces, nephews, grandchildren, and half siblings).
For each of the patient's relatives with cancer, the following should be recorded and the information updated periodically:
- The type of primary cancer;
- The person's age at diagnosis for each primary cancer; and
- The lineage (maternal and/or paternal).
As part of the history taking, the new recommendations state that patients should be asked if there is a known hereditary cancer predisposition syndrome or if there has been prior genetic testing in any relative; they should also be asked for any relevant information on family ethnicity—for example: those of Ashkenazi Jewish ancestry have a higher risk of BRCA1 and BRCA2 mutations compared with those in the general population. Therefore, according to the recommendations, women with breast and/or ovarian cancer should be specifically asked if they have any Jewish ancestry on their mother's or father's side. If the answer is yes, the physician's decision to order genetic testing and counseling for these women will be influenced by their answers.
In a related article (Wood et al: JCO doi: 10.1200/JCO.2013.51.4661), a report on an ASCO pilot test of quality measures, part of ASCO's Quality Oncology Practice Initiative (QOPI), found that among breast and colorectal patients with a first-degree family history of cancer, 79.8 percent overall were documented with this information in their medical chart. For those with a second-degree family history of cancer, 64.6 percent overall were documented.
In this pilot study, which examined 212 U.S. practices completing measures on medical records for 10,466 patients, documentation and referral were greater for breast cancer patients than for those with colorectal cancer.
The authors of the QOPI pilot study, which is believed to be the largest and most geographically diverse study of its kind to date, note that prior studies have identified low rates of complete cancer family history taking and documentation, and state that their study shows there is much room for improvement. Specifically, study participants did not do well in identifying the age at cancer diagnosis of individuals, and a complete cancer family history was collected for less than 40 percent of patients with breast or colorectal cancer.
Information for patients is available at cancer.net/genetics on ASCO's patient site, including an infographic and a downloadable three-page family history questionnaire (cancer.net/sites/cancer.net/files/cancer_family_history_questionnaire.pdf).
The recommendations also note specific current barriers:
1. Patients' incomplete knowledge of their own health histories: Patients may be aware that a second-degree relative had cancer, for example, but they may not know what kind it was or the age of the relative when diagnosed. “That's a notorious problem for all of us,” Hudis said about patients' incomplete memories or lack of knowledge.
2. The second barrier is that physicians themselves may believe they lack the expertise or tools to collect and analyze patient data on cancer risk. For example, in one recent study of 143 surveyed clinicians cited in the new special report, only 1.7 percent showed confidence in their ability to interpret cancer risk from family history and make appropriate preventive, screening, and treatment recommendations (Sussner et al: Genetics in Medicine 2011;13:785–793).
The ASCO report contains a table of family history collection resources and tools from several organizations, including the U.S. Department of Health and Human Services, the National Institutes of Health, the American Medical Association, and the National Archives.
ASCO has pledged to conduct educational efforts aimed at increasing the ability of oncologists and other health professionals to interpret family history and recommend the best follow-up care. Also planned are educational efforts on the uses and limitations of genetic profiling in assessing cancer risk, including the controversial area of direct-to-consumer tests.
The report also notes that while the electronic health record could be a valuable tool for taking cancer family history, as of now it is not adequate: “Existing electronic health systems lack the functionality needed to capture adequate family history data, and dissimilar programs are unable to easily exchange information.”
Asked if he thinks the electronic health record (EHR) has the capacity for cancer family history taking, Hudis said, “Sure it does. The capacity is there; it depends on how it's recorded.”
Still, the ASCO guidelines note that because of the wide variety of EHR platforms used by both clinicians and patients, interoperability of available tools such as My Family Health Portrait and physician office applications can present a stumbling block. The ability to exchange information on family cancer history could be especially critical if the patient moves or has a health crisis while traveling.
ASCO notes that it supports the development of electronic health record platforms that contain the core information needed for an adequate cancer family history, risk assessment models, and interoperability features.
3. The third barrier pertains to a lack of clinician time and how oncologists taking cancer family histories should be reimbursed for their time: “Clinicians are increasingly asked to do more with less time and insufficient reimbursement,” the report notes. “The process of cancer risk assessment and counseling is time consuming, and it is not clear how best to bill for this service.”
But Hudis emphasized that oncologists “need to take the time and effort to put into this.”
Asked if physician assistants could help in cancer family history taking, he said, “I think that physician assistants and physician extenders are playing an ever more important part in oncology practices,” although how they are used is up to each individual practice. As for reimbursement, “payer policies are not firmly established,” the recommendations note. “Clarification of these policies is critical because of concerns about adequate reimbursement, which presents a barrier to the provision of preventive services, such as counseling for inherited risk.”
Hudis said that although ASCO has not addressed specific reimbursement issues, cancer family history taking might be incorporated into the cognitive part of patient assessment. The report notes that new scientific findings on a predisposition to cancer will only increase the demands on oncologists: “In addition, as cancer risk assessment and risk reduction become more complex, the burden on oncologists to fully explain these issues to patients will also intensify.”
‘Value in Societal Investment’
In his comments for this article, Hudis said, “There's value in our societal investment in this.” In addition, in a statement accompanying the report, he noted: “An increase in reimbursement for this service would help providers—many of whom are already time-challenged by the current fee-for-service reimbursement structure – devote the additional time needed to perform this important component of high-quality cancer care.”
ASCO has set goals of developing an oncology workforce capable of identifying and caring for people at increased genetic risk of cancer, and expanding access to high-quality care for patients and families affected by hereditary cancer syndromes.