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Research shows face-to-face genetics counseling overcomes barriers to proceeding with genetic testing and increases chances of catching cancer early

Research funded by the Prostate Cancer Foundation (PCF) has found that when patients receive in-person genetics counseling instead of virtual telehealth consultation, they are more likely to complete full germline genetic testing.

Clinical laboratory professionals have long been aware, at least anecdotally, that when physicians hand medical laboratory test orders to patients, a high percentage do not follow through and provide blood specimens for testing.

According to a PCF press release, with an on-site genetics counseling program “genetic testing occurs at the time of the consult,” whereas “with the telegenetics model, testing kits are mailed to the veteran’s home to be completed later, which can be a significant barrier, particularly for veterans with unstable housing. Researchers also explain that a face-to-face interaction with a trusted healthcare provider may be a better forum for having psychosocially complex genetic counseling discussions than telemedicine.”

This insight may be useful for genetic testing labs that can arrange for personal counseling of patients whose physician has recommended a complete full germline genetic test. Those labs would likely see a higher proportion of genetic test referrals convert into actual tests because more patients would decide to proceed.

The researchers published their findings in the journal JCO Oncology Practice, titled, “On-Site Nurse-Led Cancer Genetics Program Increases Cancer Genetic Testing Completion in Black Veterans.”

“Without a doubt, telemedicine has many benefits, but this research shows that when it comes to genetic counseling and testing, in-person consults are most impactful,” Howard R. Soule, PhD, PCF Executive Vice President and Chief Science Officer, said in the press release.

Prostate Cancer Foundation Executive Vice President and Chief Science Officer Howard R. Soule, PhD said in-person counseling for genetic testing is more effective than a telehealth consult. Clinical laboratories are familiar with the problem of patients not following through on doctors’ orders for lab testing. (Photo copyright: Prostate Cancer Foundation.)

Study Methodology and Results

The PCF conducted its retrospective study on 238 patients at the Corporal Michael J. Crescenz Veterans Department of Veterans Affairs Medical Center in Philadelphia. Oncologist Kara Maxwell, MD, PhD, Assistant Professor of Medicine at the University of Pennsylvania Perelman School of Medicine, led the study.

Germline genetic testing identifies inherited mutations that may be linked to cancer. In at-risk individuals, it plays a role in secondary screening, and it is also an element in treating prostate and other cancers.

The patients in the study were referred for cancer genetics services between October 1, 2020, and February 28, 2022, the JCO Oncology Practice paper noted. About two-thirds (65%) were referred due to a personal history of cancer and 26% due to family history of cancer. More than half self-identified as Black.

Among the 238 patients, 130 received telehealth genetic counseling compared with 108 who were counseled onsite. A total of 117 patients in the study underwent the genetic testing.

The researchers found that among all patients in the study, those who received on-site counseling had a 3.2-fold higher likelihood of completing the genetic testing compared with the telehealth service. Among the patients who self-identified as Black, the likelihood was 4.8-fold higher. The study also found that those who received on-site counseling were less likely to miss follow-up care.

The study noted some demographic differences between the two groups: Veterans seen onsite had a median age of 71 and 92% were male. Among those who received telegenetics counselling, the median age was 57 and 58% were male.

Barriers to Genetic Testing

“Barriers to genetic testing—such as lack of access to cancer genetic services and an overall shortage of genetics service providers, both within and outside of the VA—translate to missed opportunities to diagnose cancer earlier, identify at risk family members, and offer precision oncology treatment,” the press release states.

Citing previous studies, the researchers noted that barriers to completion of genetic testing “have been magnified among racial minorities, even in cases for which there is a clear indication for testing, or if the testing is provided free of cost.”

One goal of the study, the researchers wrote, was to determine if on-site consultation could help overcome those barriers.

These consultations “can be complex encounters, and for patients with active cancer, they occur during a stressful period of their care,” the researchers wrote. The consults should include “the benefits and limitations of testing, different types of test results, and the risk of psychological impact of test results.”

Possible Explanations for Genetic Test Completion Rates

The researchers pointed to several possible explanations for the differences in testing rates. The on-site genetics nurse “has flexibility to see patients in the same physical space as their oncology follow-up or treatment visits.” The study found that this led to better attendance at appointments.

In addition, those patients received testing during the consultation. However, patients who underwent genetics counselling received their testing kits by mail. “This time delay allows for multiple intervening factors that could affect the completion of genetic testing,” the researchers wrote.

The researchers also suggested that patients may be more inclined to trust providers with whom they have face-to-face interactions.

“Our findings suggest that the presence of an on-site genetics service can potentially mitigate [racial] disparities, while effectively increasing the proportion of completed [genetic tests] for patients regardless of racial or ethnic background,” they wrote.

“Although telegenetics has greatly expanded access to genetics evaluations, it is possible that a face-to-face interaction with a provider onsite may be a better method for delivery of genetics consultations, given the inherent complexity in these encounters, particularly in the veteran population,” the researchers noted in JCO Oncology Practice. “It is imperative to optimize these interactions and facilitate genetics services follow-up, as the ultimate results from testing—if indicated—have profound implications on matters that are important to patients.”

Though the PCF study is confined to genetic testing and does not encompass all clinical laboratory testing, those with experience in medical laboratories know a high percentage of patients do not complete doctor-ordered lab tests.

“Going as far back as the 1990s, there has been recognition among pathologists and clinical laboratory managers that, as a rule of thumb, for every 100 lab test orders a doctor hands to patients, only 60% of those patients come in and provide a blood specimen,” said Robert Michel, Editor-in-Chief of Dark Daily and its sister publication The Dark Report. “To my knowledge, there’s never been a published study about this aspect of clinical laboratory testing that has appeared in a peer-reviewed medical journal.

“Over the years, fear of needles was believed to be one reason why some patients accept a lab test order from their physician but do not take the next step of providing a specimen to a clinical lab,” Michel added. “Today, with high-deductible health plans and expensive genetic tests, cost would be another reason why patients might decline to go forward with lab tests ordered by their physicians.”

—Stephen Beale

Related Information:

On-Site Genetic Testing Consults Lead to Higher Testing Completion Rate, Finds PCF-Backed Study

Prostate Cancer Foundation-Funded Study Sheds Light on Improving Access to Precision Oncology Care for US Veterans with Prostate Cancer

On-Site Nurse-Led Cancer Genetics Program Increases Cancer Genetic Testing Completion in Black Veterans