FP Researchers Help Test Family History Tool

People who learn they're at high risk for a disease just might be more motivated to change their behaviors to avoid getting the illness than those who know they have a lower risk. This theory is part of what the AAFP National Research Network and other groups are testing in a study on a Web-based family history tool.

"This is the first evaluative study of the family history tool in the field," Paula Yoon, Sc.D., M.P.H., an epidemiologist in the CDC Office of Genomics and Disease Prevention, said in an interview at AAFP headquarters in Leawood, Kan., where she led a meeting on the research project May 3-4. The CDC office is coordinating work with the tool, which targets patients' familial risk for six conditions: diabetes; heart disease; stroke; and breast, ovarian and colorectal cancers.

"We want to be able to analyze (patients') behavior change data within the different categories of risk (weak, moderate and strong), and we've hypothesized that people who learn they have a strong familial risk might be more motivated to make behavior changes" than those with less risk, said Yoon.

The study has two branches. Patients in the immediate intervention group complete the tool's family history risk assessment and receive personalized information about their risk levels and tailored prevention messages. Six months later, these patients update their risk assessments, receive updated prevention advice and complete follow-up surveys.

By comparison, patients in the delayed intervention group complete a risk assessment that is more oriented to the individual than the family and receive standardized public health messages. Six months later, these patients complete the tool's family-oriented assessments that the immediate intervention group began with, receive personalized risk information and tailored prevention messages, and complete follow-up surveys.

For both groups, the risk assessments become part of their patient records. Physicians in the study may confer with patients about the assessments, will record preventive and diagnostic services patients receive, and may consult with a geneticist on the research staff if they have questions about referring patients for genetic counseling. After the practice-based phase of the study is completed, researchers will interview physicians about the value of the family history risk assessment tool.

"We'll modify the tool and add new diseases," said Yoon. "We're waiting to see the results of this study."

Yoon zeroed in on disease prevention messages. "As we measure the impact of the tool on patients, we need to look at each of the six diseases and how people react to the preventive messages. We also need to measure things like worry and risk perception," said Yoon. "It's a lot of trying to get at where people stand in terms of their ability to do something about preventing a disease. You look at their 'before' and 'after' behaviors" relative to using the family history assessment tool.

AAFP's National Research Network is a subcontractor to the family medicine department at Case Western Reserve University School of Medicine, Cleveland, one of three CDC grant recipients for the study.

Physicians in the study are enrolling healthy patients ages 35 to 65 in the project; about 6,000 patients are expected to participate. Through the National Research Network, 27 family physicians in 24 family medicine practices are already engaged in the study, and patients in about 15 of those practices had begun using the family history tool by early May. The network will receive $550,000 from the CDC for the project, from which participating patients and practices will receive minimal payments (up to $20 for each of the patients and from $2,500 to $3,500 for the practices).

The study is seeking to enroll two more practices. To apply, contact Jennifer Kappus, a research associate for the network, at (800) 274-2237, Ext. 3174, or jkappus@aafp.org.

The family history tool is part of the CDC's Family History Public Health Initiative. After the current study is completed, other testing will be done, the tool will be revised, and then the public will be able to use it. In the meantime, physicians may want to encourage patients to use "My Family Health Portrait," a Web-based program posted online in November.