After receiving a cancer diagnosis, navigating the pathways of existing treatments can be complicated. But recently developed genetic tests for tumors have added a new layer of complexity to the cancer recovery process. Tumor genetic testing, also known as tumor genomic profiling or TGP, can help doctors find a targeted approach to treating cancerous tumors, but the testing also reveals a wealth of information about an individual’s genetic code, including what other cancers he or she is susceptible to. Some may see this additional information as a boon, but others may find it overwhelming in an already difficult time. Knowing the potential consequences of tumor genomic profiling prior to receiving the test, therefore, is extremely important.
Dr. Sarah Bass, associate professor and director of the Risk Communication Lab at Temple University College of Public Health, and Dr. Michael Hall, a gastrointestinal oncologist and clinical cancer geneticist at Fox Chase Cancer Center, are currently working to make this fraught decision process easier. Drs. Bass and Hall have received a five-year, $1.4 million grant from the American Cancer Society (ACS) to create and test decision aids that help African-American patients, a population that tends to have low health literacy, make more informed decisions about tumor genetic testing. In addition to Dr. Bass and Dr. Hall, the study team includes co-investigators Dr. Jingwei Wu, assistant professor of epidemiology and biostatistics at Temple, and Dr. Mary Daly, a medical oncologist and expert in cancer genetics from Fox Chase Cancer Center.
Tumor genetic testing has become widely available in the short time the tests have been on the market — the FDA approved a number of tumor genetic tests just last year. But that brief time period has not allowed for a widespread understanding of the implications of testing results. “One difficult aspect of tumor testing is that it also reveals information about hereditary risks for cancer,” says Dr. Hall. “While some patients embrace this ‘extra’ information (and see it as ‘two for one’ deal), there are many patients who want information focused on treatment and find the secondary hereditary information difficult to understand and distracting.”
In the formative portion of the study, researchers will use perceptual mapping, a commercial marketing technique, to identify cancer patients’ most pressing concerns about tumor genetic testing. The team will then create guides featuring targeted messaging to help patients determine what matters most to them and how to decide whether genetic testing is right for them. Using those findings, the researchers will also create training materials for oncologists. Both will be available digitally via desktop and mobile websites or delivered via email.
For patients, the hope is that the guides help decrease “decisional conflict” — the amount of stress and uncertainty that a patient faces when making a major choice about how to proceed with their treatment. For oncologists, the study aims to increase their ability to effectively talk with patients about tumor genetic testing. “We want patients to understand what options they have with tumor genomic profiling,” says Dr. Bass. “We want to figure out how providers can best communicate the implications of these tests. We’re asking: Can we help increase how informed patients feel so that they can make a decision that’s best for them?”