Journal Article

Evaluation of mailed results versus telephone disclosure of normal cancer genetic test results in a low-risk underserved population

Joseph, Galen, Kauffman, Tia L, Leo, Michael C, Shuster, Elizabeth, Zepp, Jamilyn M, Ezzell Hunter, Jessica, Biesecker, Barbara B, Goddard, Katrina A B, Gilmore, Marian J, Rolf, Bradley, Amendola, Laura M, Wilfond, Benjamin S

2024

Overview

Abstract Scalable models for result disclosure are needed to ensure large-scale access to genomics services. Research evaluating alternatives to genetic counseling suggests effectiveness; however, it is unknown whether these findings are generalizable across populations. We assessed whether a letter is non-inferior to telephone genetic counseling to inform participants with no personal or family history of cancer of their normal results. Data were collected via self-report surveys before and after result disclosure (at 1 and 6 months) in a study sample enriched for individuals from underserved populations. Primary outcomes were subjective understanding of results (global and aggregated) and test-related feelings, ascertained via three subscales (uncertainty, negative emotions, and positive feelings) of the Feelings About genomiC Testing Results (FACToR) measure. Secondary outcomes related to satisfaction with communication. Non-inferiority tests compared outcomes among disclosure methods. Communication by letter was inferior in terms of global subjective understanding of results (at 1 month) and non-inferior to telephoned results (at 6 months). Letter was non-inferior to telephone for aggregated understanding (at 6 months). Letter was superior (at 1 month) to telephone on the uncertainty FACToR subscale. Letter was non-inferior to telephone on the positive-feelings FACToR subscale (at 6 months). Letter was non-inferior to telephone for satisfaction with mode of result delivery and genetic test results. Communication via letter was inferior to telephone in communicating the “right amount of information.” The use of written communication to relay normal results to low-risk individuals is a promising strategy that may improve the efficiency of care delivery. We report results of a non-inferiority study evaluating a mailed letter for genetic test-result disclosure, as opposed to a telephone call, in a diverse population. This analysis provides evidence of the acceptability of a mailed letter for disclosing normal genetic test results in low-risk individuals. Lay Summary Genetic counseling services delivered in the usual way—during clinic visits—can take up a lot of time for patients and genetic counselors. Alternatives to this practice have been studied among genetic counseling patients to spare genetic counselors’ time and expand access and flexibility for patients. Yet, in these studies, the participants have lacked diversity. So, it is not known how these research findings pertain to all populations. In this study, we looked at the use of an alternative care model, a mailed letter, for sharing normal genetic test results with study participants from underserved populations. We tested whether patients viewed the mailed letter as no worse than a telephone conversation with a genetic counselor, which has been shown to be well received by patients. We learned that study participants felt they understood their results, were not distressed to receive the results, and were satisfied with how their results were delivered. Lastly, we found that participants were more satisfied with the amount of information provided about their test results during the telephone conversation compared with the mailed letter. This study provides new information about different ways to deliver test results to individuals receiving genetic services.

• Publisher: Oxford University Press
• Subject: Cancer / Communication / Diagnosis / Evaluation / Genetic counseling / Genetic screening / Original Research / Telemedicine / Verbal communication