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Alternative Genetic Counseling Approach Leads to Higher Patient Satisfaction, Study Suggests

NEW YORK — A different approach to genetic counseling focused on better communication and psychosocial aspects led to higher patient satisfaction with their genetic counselor relationship, according to results from a randomized trial presented at the National Society of Genetic Counselors annual meeting.

In a conference presentation on Sunday, Laura Amendola, a genetic counselor at Illumina who was previously associated with the University of Washington, noted that ineffective communication can contribute to disparities in healthcare. She pointed to a previous study from Galen Joseph and her group at the University of California, San Francisco that found that discussions between genetic counselors and patients about germline cancer panel testing could be suboptimal for historically underserved populations.

"We know that access to genomic information is increasing, so it raises the opportunity for us at this time to consider different approaches to care delivery [for] our increasingly diverse populations that are undergoing testing," Amendola said.

As part of the Cancer Health Assessments Reaching Many study — which examined how clinical exome sequencing affects care in diverse populations — Amendola and her colleagues conducted a randomized trial of a communication model that focuses on being accessible, relational, inclusive, and actionable, or ARIA. While they uncovered few differences in individuals' understanding of their results or what they needed to do next between the ARIA and usual-care arms of the study, they noted that individuals in the ARIA group reported better satisfaction with their genetic counselor.

While an ARIA-model approach to genetic counseling and a typical genetic counseling session both include similar elements — for instance, taking family history or disclosing results — they implement these in different ways. The ARIA approach places greater emphasis on communication and psychosocial counseling, for example, and relies on more simplified and concrete language to convey the same information.

For instance, when counseling someone with a pathogenic BRCA1 or BRCA2 variant, genetic counselors might usually provide a range of risks for the various cancer types associated with those variants. But under the ARIA model, Amendola said, genetic counselors would instead discuss more specifically how the risk of breast cancer was 1 in 10 for someone without the variant but 8 in 10 for someone with that finding.

"That's not perfectly accurate information," Amendola said. "But the goal is to show that the chance of cancer is higher and the patient needs to change their care."

Her team examined how well this approach worked within the CHARM study, focusing on the 761 patients to whom results were returned. The patients were randomized to undergo either standard or ARIA-based genetic counseling and were surveyed about their experiences. Of those, 643 individuals responded to a survey directly after the disclosure of their results.

With these surveys, Amendola and her colleagues gauged recall of the results, perceived understanding of the results, and satisfaction with counseling, comparing those items between the arms of the study.

Participants in both the ARIA and the usual-care arms had high, accurate recall of their cancer genetic testing results, with 94 percent and 97 percent correct recall, respectively. Participants in both arms likewise had high recall of whether their secondary findings were normal or not.

Additionally, both arms of the study had high perceived understanding of their results based on a five-question measure that asked, for example, what they needed to do and what the results meant for their families.

A difference arose, though, on measures of genetic counseling satisfaction. Both arms of the study had similar results based on the good and poor communication score assessments. The good communication score was based on items from the Patient Assessment of Communication Effectiveness scale, such as "I felt comfortable asking questions," while the poor communication score was based on items such as "I received too much information" or "it was hard to ask questions."

A genetic counseling score, meanwhile, was based on items like "I felt listened to" or "I was treated with respect." In that area, the ARIA arm performed better.

"Our hypothesis, and I think our hope, in developing and implementing the model was that we would see more accuracy and better understanding in that ARIA model," Amendola said. "But … given the high overall satisfaction, the positive impact, and engagement evaluation for genetic counseling, it's not a huge surprise [that we did not]."

Interview-based qualitative analysis, though, indicated that the individuals undergoing counseling noticed whether ARIA-type elements were present, suggesting that the approach could affect patient engagement.

Amendola noted that the study had a number of limitations, including that the counseling was conducted only after testing as well as over the phone, which may have limited the ability to build rapport.

Further subgroup studies and other analyses plan to explore whether there were differences between the arms of the study based on variables like health literacy and education, or based on patients having a pathogenic or a variant of unknown significance, she added.