Understanding patient preferences, values can help overcome barriers to genomic profiling
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Key takeaways:
- Mistrust is a key barrier when discussing tumor genomic profiling with African American patients with cancer.
- Oncologists should give patients time to understand and ask questions before ordering testing.
Michael J. Hall, MD, MS, FASCO, must occasionally remind himself not everyone holds genetics research in the high esteem he does.
He recalled a middle-aged African American patient with colon cancer on whom he wanted to conduct tumor genomic testing to obtain a molecular profile for his tumor.
Hall viewed the test as standard of care, but the man did not.
The patient wondered whether Hall wanted to conduct the testing as part of some study. Hall tried to assuage his unease during the visit but could not.
“Someone who sits on my side of the fence can sometimes walk into a room like that — kind of bold and blind — and think that everyone agrees that genetics and genomics are the greatest things in the world, and they don’t,” Hall, chair of the department of genetics and co-leader of the cancer prevention and control program at Fox Chase Cancer Center, told Healio.
The two talked through the patient’s concerns over the next few visits and the man eventually underwent the recommended testing, but he still serves as a reminder that not everyone has a positive view on such testing and its role in cancer treatment.
Many oncologists have experienced difficulties discussing tumor genomic profiling with their patients, particularly African American individuals.
Through interviews with oncologists and an online survey, Hall and colleagues discovered discrimination concerns, medical mistrust, family dynamics and poor awareness as barriers to conducting genetic testing among African American individuals with cancer, according to study findings published in BMC Cancer.
More education for clinicians about how to communicate the importance of this type of testing could be useful to support better discussions with patients and increase awareness and understanding of hereditary risks among African American patients, investigators concluded.
“Talking about genetics and genomics is really tricky,” Hall said. “Add in hereditary risks, mistrust, time constraints and minimal training in genetics communication with underserved populations for physicians in residency and fellowship, and you have a perfect storm of high information complexity and high barriers to delivery and comprehension.”
‘Potential source of discrimination’
Tumor genomic profiling has become an integral part of cancer care over the past several years. More than 75% of oncologists who responded to a 2017 survey said they used it in their practice, according to background information provided by researchers.
The testing does not just identify tumor-specific mutations for targeted treatment. It also can find hereditary secondary mutations, such as those in BRCA1/BRCA2 or mutations associated with Lynch syndrome. These secondary mutations occur in 10% to 15% of cases, according to study investigators.
African American individuals experience higher rates of multiple myeloma and colorectal, prostate, lung, hepatobiliary and stomach cancers, in addition to higher cancer-related mortality.
Germline genetic testing could help screen African American individuals for cancer risks, but this testing usually is accompanied by genetic counseling support. In contrast, counseling rarely is done before tumor genomic testing.
Risks such as long-term disability and life insurance discrimination are emphasized in germline genetic testing, but they are unlikely to be addressed in an oncology clinic prior to a tumor genomic profile being sent.
“People are averse to being discriminated against and they see germline genetic testing as a potential source of discrimination,” Hall said. “People have high thresholds for privacy. Not being well informed that these kinds of hereditary findings may come out of this tumor testing does not sit well with some patients.”
Hall and colleagues wanted to assess how these concerns impacted oncologists’ ability to discuss tumor genomic profiling with patients.
They conducted 22-item interviews with 10 oncologists (mean age, 41 years; 60% women; 40% Black/African American; 30% white), 70% of whom had 10 or fewer years of experience. They sent 84-item surveys to 50 other oncologists (mean age, 45 years; 66% men; 52% white, 36% Asian), half of whom had at least 11 to 20 years of professional experience.
‘Suspicion and hesitancy’
Interviewees noted several barriers to communicating with at-risk populations, such as African American patients. These included socio-economic factors, mistrust of genetics and health care overall, privacy and discrimination fears, and understanding of genetics.
“There is a lack of trust of the health care system,” one interviewee said. “I have some patients from the African American population who say, ‘Is this because I have good insurance? Is this because you are paid more if you do this?’ I think the level of suspicion and hesitancy exists in this patient population, and it’s different from other patient populations.”
Most respondents agreed these considerations should be accounted for when discussing tumor genetic profiling.
Another interviewee acknowledged that — despite a duty to provide equitable care to all patients — physicians should be situationally aware of the historical and cultural influences that may factor into decision-making.
“When an African American patient says ‘I don’t want to do it,’ you really need to ask why not, because it really can go back to these historical aspects where they’re afraid they will be discriminated against in some way,” the interviewee said.
From the survey, researchers found more medical oncologists believed barriers existed for tumor genomic profiling than surgical or radiation oncologists (P = .029), and oncologists who use tumor genomic profiling less frequently in their practice agreed more strongly that concerns of African American patients should be addressed (P = .042).
Additionally, oncologists with less than 10 years of experience more frequently agreed to the importance of awareness of African American patients’ concerns over privacy and mistrust.
“Whether this reflected having had more recent training in their schooling, perhaps [early career oncologists] also had greater awareness and sensitivity to such issues, we’re not certain,” Hall said. “But the differences were consistent in the data.”
Patient-focused education
The interview and survey responses suggest that oncologists should acknowledge barriers when discussing tumor genetic profiling and possibly adjust their approach.
“When you’re considering ordering these tests, make sure that you have spent time informing the patient about what the test is, why you’re doing it, what the potential risks are and what type of information may come out of it,” Hall said. “Then, rather than making assumptions, actually spend time exploring and making sure you understand what the preferences and values are of the patient in front of you.”
Hall emphasized patients should be informed if a tumor genomic profile is being sent so they have a chance to ask questions — especially about possible hereditary findings — and oncologists should not try to expedite tumor genomic profiling on the spot if a patient is still hesitant or needs more information. Rather, oncologists should allow a patient time to discuss it with their family or a genetic counselor if they wish.
Educating oncologists about these barriers also can address patients’ worries.
“Docs are largely a group who love to learn new things and how to practice better,” Hall said. “Educational supports — especially those that are convenient, short, and rewarding — are a great way to bring them up to speed on this important nuanced area of oncology and genetics.”
Hall and colleagues presented results of a randomized pilot trial at last year’s ASCO Annual Meeting that evaluated the effectiveness of an educational tool for oncologists called GenePilotPro (GPP).
Study results showed the online training video improved oncologists’ confidence when discussing tumor genomic profiling with African American patients, but tests in larger, randomized trials are needed to make it part of regular education, Hall said.
“It is only one side of the coin to educate the [physicians],” he added. “We would also, down the line, want to see if patients were able to benefit from this, as well. Do they have more favorable views about their decisions or their provider interactions after their [physician] uses GPP? Do they learn more, or see their [physicians] as more understanding, empathetic or aware? Finally, do African American patients feel their values and choices are reflected and respected in their medical and genetic testing decisions? It is these patient-centered outcomes that are the most important.”
For more information:
Michael J. Hall, MD, MS, FASCO, can be reached at michael.hall@fccc.edu.
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