Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health

Abstract

Information on patients’ preferences is essential to guide the development of more efficient genomic counseling service delivery models. We examined patient preferences in the context of use of a post-test genomic counseling framework on patients (n = 44) with chronic disease receiving online test reports for eight different diseases and one drug-response result. We also explored patients’ disease risk awareness, recall of test report information, and confidence in knowing what to do with their test results. Prior to the post-test genomic counseling session, all participants viewed at least one test report; 81.6% of available test reports were reviewed in total. Participants requested more phone (36) than in-person counseling sessions (8), and phone sessions were shorter (mean 29.1 min; range 12–75 min) than in-person sessions (mean 52.8 min; range 23–85 min). A total of 182 test reports were discussed over the course of 44 counseling sessions (mean 4.13, range 1–9). Thirty-six (81.8%) participants requested assessment for additional medical/family history concerns. In exploring patient experiences of disease risk awareness and recall, no significant differences were identified in comparison to those of participants (n = 199) that had received in-person post-test genomic counseling in a parent study randomized controlled trial (RCT). In summary, a novel post-test genomic counseling framework allowed for a tailored approach to counseling based on the participants’ predetermined choices.

Scaling Genetic Counseling in the Genomics Era

“…One approach has been to implement delivery models that improve genetic counselor efficiency. Offering group pretest genetic counseling and providing a choice of phone results disclosure both save time for genetic counselors (24,88). The addition of genetic counseling assistants to the medical genetics clinic team is another way to increase genetic counselors' efficiency by enabling genetic counselors to work at the top of their scope of practice and focus primarily on direct patient care (35,72).…”

“…Genetic counseling-related initiatives to reduce access disparities include some of the service delivery approaches discussed above (79,88) that reduce the need for patients to travel and attend in-person counseling visits. For example, a study investigating the efficacy of video counseling specifically targeted toward Latinx patients at risk for hereditary cancer identified overall patient satisfaction (42).…”

Genetic counseling for consumer‐driven whole exome and whole genome sequencing: A commentary on early experiences

“…Genetic counselor training and resources are needed for those who want to incorporate this type of consultation into their current practice or into a new service provision model (Hooker et al, 2014;Ramos & Weissman, 2018;Sturm et al, 2018). Currently, few counselors offer this service, according to the NSGC Find A Genetic Counselor Resource.…”

Patient decision support resources inform decisions about cancer susceptibility genetic testing and risk management: a systematic review of patient impact and experience

“…There are two contexts in which patient resources could be relevant to support decisions regarding genetic cancer susceptibility: i) pre-genetic testing (29): to support patients making a decision about whether to have a genetic test, either with or without a diagnosis of cancer (30). ii) post-genetic testing: to complement shared decision-making with a healthcare professional for patients identified to have a genetic cancer susceptibility, and their relatives (31, 32).…”