NASHVILLE, Tenn. – Nov. 19, 2022 – People from underserved populations are as likely to complete a visit with a genetic counselor in person as by telephone, suggests interim data from a study whose lead investigator was awarded a Jane Engelberg Memorial Fellowship (JEMF). The interim report is being presented at the National Society of Genetic Counselors (NSGC) 41st Annual Conference.

“We are about halfway through the study and the main surprise right now – although it’s a snapshot – is that visit completion rate is so close between groups,” said Sara Pirzadeh-Miller, MS, CGC, the 2021 recipient of the fellowship, lead author of the study and associate director of the Cancer Genetics Program at UT Southwestern Medical Center – Simmons Comprehensive Cancer Center, Dallas. “We thought we’d be seeing a skew towards the telephone group having higher completion.”

The researchers are comparing: knowledge; satisfaction; measure of informed choice; visit completion; and testing completion for patients at two safety-net hospitals who are referred for cancer genetic counseling: 100 patients are randomized to the in-person genetic counseling (IPGC) group and 100 are randomized to the telephone genetic counseling (TGC) groups. Pirzadeh-Miller hypothesized that patients in both groups will have equivalent knowledge and satisfaction, that visit completion will be greater in the telephone group but testing completion will be lower.

The visit-completion results could shift as more patients are enrolled, and it’s too early to determine the other outcomes, she notes. The data analysis will be completed by the end of summer 2023.

“My team is thrilled that the JEMF has given our group the opportunity to bring national attention to and study of this area of need,” said Pirzadeh-Miller. “Demonstrating outcomes of genetic counseling in all patient populations with consideration of the service delivery model is critical and a strategic initiative in our profession.”

The JEMF is a highly prestigious award of the National Society of Genetic Counselors that is funded by the Engelberg Foundation. The award was established to promote the professional development of individual counselors and to improve the practice of genetic counseling by providing support for the scholarly investigation of any aspect of the profession.

The 2020 JEMF awardee, Chenery Lowe, ScM, PhD, CGC, assistant scientist in the Department of Health, Behavior & Society at Johns Hopkins Bloomberg School of Public Health, Baltimore, studied 36 genetic counseling students to inform development of competency-based methods and tools to assess and teach their patient-centered communication skills. The two-year study is complete, one manuscript has been accepted by the Journal of Genetic Counseling and the results will be presented at NSGC. High level results include:

• During standardized patient sessions conducted after completing the training, the students used more emotionally responsive communication. They were also much more likely to use teach-back, a skill that is associated with better patient adherence, knowledge, self-efficacy, and other important outcomes.
• Using more of the targeted communication skills during the session was associated with higher standardized patient satisfaction with communication during the session.
• Student communication tended to be more patient-centered during sessions with White standardized patients compared to sessions with Black standardized patients.

This year’s JEMF winner is Lisa Schwartz, EdD, MS, CGC, of George Washington University, for her study exploring genetic counselors’ professional identity, focusing on the diversity of roles and professional development.

Note to editors: Media interested in viewing study abstracts, interviewing authors and/or attending sessions at the NSGC Annual Conference can contact NSGC’s PR team at 630-344-2009 or NSGCPR@pcipr.com.

About the National Society of Genetic Counselors

NSGC is the leading voice, authority and advocate for the genetic counseling profession. Membership represents 5,000 masters-level health professionals, who are committed to ensuring that the public has access to genetic counseling and genetic testing. For more information, visit www.nsgc.org.