NEW YORK – Veterans, particularly those who self-identified as Black, were more likely to get germline genetic cancer testing within an in-person nurse-led program at a Veterans Affairs medical center than through a telehealth genetics program, a study has found.
The Corporal Michael J. Crescenz Veterans Affairs Medical Center in Philadelphia historically provided genetics consultations through a centralized telegenetics program operated out of Salt Lake City. However, as of October 2020, the medical center launched an on-site cancer genetic testing and counseling service staffed with an advanced practice nurse geneticist and a medical oncologist with cancer genetics expertise.
Telegenetics programs are often touted as a way to mitigate the pressures placed on genetics services given the growth in testing rates in recent years and the relative dearth of genetics expertise to discern appropriate testing and provide counseling. Randomized studies have shown that testing rates are similar between telegenetics and in-person services. However, researchers led by Kara Maxwell, a medical oncologist who leads the Corporal Michael J. Crescenz Veterans Affairs Medical Center’s on-site genetics program, conducted a real-world comparison of test completion rates within the telegenetics and on-site program and explored if there were any disparities in uptake according to self-identified race or ethnicity.
For more than a year, Maxwell and colleagues tracked genetic testing completion rates for patients seen through the in-person program and compared that to the testing rates at the medical center’s telehealth genetics program. They published the results of their study in JCO Precision Oncology earlier this month.
“Many VA sites are dealing with how to work with their existing infrastructures to handle the larger volume of recommended genetic testing,” said Maxwell, who is also an assistant professor of medicine and genetics at the University of Pennsylvania Perelman School of Medicine.
She noted that recent National Comprehensive Cancer Network guideline updates that recommend germline testing for all patients with breast, ovarian, pancreatic, and prostate cancer have increased the usage of germline testing at the VA and put more strain on the telegenetics program.
“We recognized that the [genetic testing] volume increase was going to be very difficult for the centralized telegenetics service to handle and that the acuity now is much greater because germline genetic testing is not just about identifying people at future risk or informing family members, but it’s used for treatment decisions that you might want to make in a relatively short time span,” she added.
Maxwell and her team studied testing rates for 16 months since the launch of the on-site consult service in 2020. During that time, there were 108 patient consults at the on-site VA medical center program and 130 through the telehealth program. More than half of the 238 consults in total were for patients who self-identified as non-Hispanic Black. Overall, 117 veterans underwent germline testing after a consultation within either genetics service.
The on-site program identified patients for genetic testing by provider referral, tumor board referral, and review of prior incomplete genetic consults by the nurse geneticist. The nurse then reached out to these patients for an in-person or phone consultation to discuss current medical and family history, the pros and cons of testing, discussion of the patient’s values and preferences, and the veteran’s service history and potential exposures. Genetic testing at the point-of-care could then be provided after the test order was approved by pathologists.
In the telegenetics program, however, genetic counseling happens only over the phone and testing kits are mailed to the patient’s home to be completed at their convenience.
In a univariate analysis of germline testing completion rates, patients who were seen by the on-site genetics service were more than three times likely to ultimately get tested compared to those who were counseled through the centralized telehealth genetics service. In multivariate analysis, there was also a higher likelihood that veterans seen through the in-person service would get tested, but this association was statistically significant when researchers homed in on Black patients, who had a nearly five times higher likelihood of test completion when seen on-site than when receiving telegenetics consults.
Maxwell noted that the on-site program was especially useful for older veterans who needed genetic testing. The patients who were seen by the on-site program were older, more likely to be male, more likely to be referred because of a personal cancer history, and more likely to be referred by an oncology service than those who used the telegenetics program.
“Many of our veterans weren’t very technologically savvy, or even if they were, the added burden of trying to make a telegenetics appointment wasn’t being very successful,” she explained. “In a lower resource area and in an urban setting, we thought this on-site, point-of-care model would work a lot better.”
These findings are important because even though telegenetics services can be useful in expanding testing and counseling access, studies have also shown that they can widen access disparities in older, homeless, and non-white patients. For example, a study among nearly 25,000 VA patients showed that Black patients were less likely to complete consultations through telehealth programs.
“Prior evidence has demonstrated that racial disparities in genetics care persist in the telehealth setting within the VA,” Maxwell and colleagues wrote in their paper. “Importantly, our findings suggest that the presence of an on-site genetics service can potentially mitigate these disparities, while effectively increasing the proportion of completed genetic testing for patients regardless of racial or ethnic background.”
However, on-site programs have their share of challenges at a time when genetics experts are in short supply. “There are very few licensed genetic counselors employed in the VA,” Maxwell said, noting that her VA medical center has no licensed genetic counselors on staff. A 2020 analysis of germline genetic testing capabilities in the VA found there were only 1 to 2 genetics professionals per 1 million enrollees, with an even lower proportion in community VA clinics.
To address the limited availability of licensed genetic counselors at the VA, Maxwell’s team had to identify another group of healthcare professionals to help run the on-site genetics program. “For a number of years, nurses have increased their competency and capacity for doing genetic testing,” she said, noting that there’s now an International Society of Nurses in Genetics dedicated to genomic healthcare and many nursing programs are teaching genetics. “We thought, what a perfect way to utilize a workforce that’s already in existence and, with not too intensive training, add [genetic testing] to the practice for an oncology nurse.”
The researchers also created an educational program on genetics for VA oncology nurses through the same grant that funded the on-site testing effort. In the first year, the program provided genetics training to more than 150 oncology nurses throughout the VA system, Maxwell said.
The program gives nurses enough of a genomics primer so they can talk to oncology patients about genetic testing and has encouraged nurses who want a deeper knowledgebase to pursue more advanced genetics education, Maxwell said.
The structure of the genetics program also frees up genetic counselors to focus on patients who have germline pathogenic variants detected. In the study, 14 veterans (12 percent) tested positive for a pathogenic variant and 27 veterans (23 percent) had a variant of uncertain significance.
“We want to be able to use our genetic counselors to help those that have an identified mutation and help them get their families tested, while the other patients may not need to see a genetic counselor,” Maxwell said. “That’s the thought process in dividing the labor.”
Beyond the VA, there are many efforts underway to improve cancer patients’ access to genetic testing and counseling. Toward this end, many health systems are experimenting with telehealth approaches in this area, such as phone-based education, online genetic counseling platforms, and chatbots.
However, Maxwell suggested that it is easier for a person to discuss with a trusted healthcare professional the reasons they might need genetic testing or what the test results might mean for their or their relatives’ health. Point-of-care testing can also be added to existing appointments for patients, which may help increase follow through compared to mailing genetic test kits to patients’ homes, Maxwell said.
“With genetics, the preconceived notions or fears or the ideas that people have about genetics makes it really hard to convey in a non-in-person setting,” she said. “For our specific population, it was important to have a relationship with the clinician that’s approaching you about the genetics. If the oncologist says this [genetic test] is important for you, your family, and your care, then the patient’s more likely to engage.”