Patient Reports of Cancer in Family May Be Wrong

Patient Reports of Family Cancer History Are Often Inaccurate

Getting an accurate family history of cancer from individuals is important for doctors who make recommendations about cancer screening and prevention strategies based, in part, on this information. But, until now, clinicians have lacked good evidence about the reliability of these histories. A study published online May 11 in the Journal of the National Cancer Institute shows that when people in the general population are asked about the history of specific cancer types in their family their responses are often inaccurate.

Dr. Phuong Mai of NCI’s Division of Cancer Epidemiology and Genetics and her colleagues investigated the reliability of reported family histories for the four most common cancers in adults: breast, colorectal, lung, and prostate. Overall, the researchers found that reports of no family history of cancer were highly accurate, but the accuracy of reports of specific cancers among relatives was low to moderate and varied by cancer type. Accuracy was highest for breast cancer, lowest for colorectal cancer, and better overall for first-degree relatives than second-degree relatives.

An accurate family history is important because some cancer screening and prevention recommendations are based on a person’s risk level, which is determined in part by family history, noted Dr. Mai. Inaccurate histories can lead to incorrect risk estimates, which may result in unnecessary screening for some people and not enough for others.

The study, begun by Dr. Louise Wideroff, who was part of NCI’s Division of Cancer Control and Population Sciences until recently, used information from the 2001 Connecticut Family Health Study, a random telephone survey of households in Connecticut. In the survey, 1,019 Connecticut residents reported on the history of various cancers in a total of 20,578 first- and second-degree relatives.

The researchers then tried to confirm reported cancer cases for a randomly selected subset of 2,605 of those relatives using a number of data resources, including state cancer registries, Medicare databases, the National Death Index, death certificates, and health care facility records, as well as through direct interviews with the relatives or with proxies for those who had died.

“We would strongly encourage people to learn as much as possible about their family history [of disease], cancer or otherwise, and take initiative to collect and preserve these valuable records,” said Dr. Mai. “And clinicians need to be aware that when patients report that cancers have occurred in their family, it might require additional validation.”

Confirming diagnoses, however, can be time-consuming, expensive, and difficult. In the future such validation may be facilitated by the availability of electronic medical records, Dr. Mai noted.

Physicians need to approach patients’ family history information “with healthy skepticism,” wrote Drs. Rachel Freedman and Judy Garber of the Dana-Farber Cancer Institute in an accompanying editorial. “Although we should thoughtfully listen to our patients’ histories, we must listen even harder to what they ‘could’ be telling us, especially when specific information could influence their care and the care of their relatives,” they concluded.

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