Enter Note Done


G. Joseph1, M. C. Leo2, B. B. Biesecker3, L. Riddle1, C. Guerra1, L. Amendola4, M. J. Gilmore2, J. M. Zepp2, B. Rolf4, K. P. Anderson5, S. Okuyama-Sasaki5, M. Caruncho1, J. E. Hunter2, E. M. Keast2, T. L. Kauffman2, N. M. Lindberg2, A. A. Reyes2, G. P. Jarvik6, B. S. Wilfond7, K. A. Goddard8; 1Univ. of California San Francisco, San Francisco, CA, 2Kaiser Permanente Ctr. for Hlth.Res., Portland, OR, 3RTI Intl., Washington, DC, 4Univ. of Washington, Seattle, WA, 5Denver Hlth.Ambulatory Care Services, Denver, CO, 6Univ Washington Med Ctr., Seattle, WA, 7Seattle Children's Res. Inst., Seattle, WA, 8Kaiser Permanente Northwest, Portland, OR

Background. Barriers to effective communication in genetic counseling include high oral literacy demand, dominance of informational vs. psychosocial counseling dialogue, and limited provision of valued information. Prior research with historically underserved patients found that ineffective communication contributed to poor understanding and limited engagement. Methods. Within the NIH CSER consortium CHARM study, which recruited historically underserved populations, we assessed ARIA (Accessible, Relational, Inclusive and Actionable), an evidence-based genetic counseling communication model. ARIA is designed to increase accessibility of genetic counseling (GC) for all patients regardless of prior genetics knowledge or literacy level, and requires in-depth training of GCs in specific communication skills. We conducted a pragmatic randomized controlled trial to compare usual care (UC) GC to ARIA for the return of exome sequencing results in participants ages 18-49. We hypothesized that ARIA would be more effective in achieving satisfaction with communication and increasing essential knowledge. Two GCs were assigned to each arm for the duration of the trial. Study participants were randomized 1:1 and were blinded to the type of counseling they received. Results. Participants (353 ARIA; 344 UC) had a mean age of 34.6 (SD=8.2); 71% were female, 44% were low income, and 15% preferred Spanish. Almost 20% had marginal or inadequate health literacy. Preliminary analyses indicate that participants in both arms were highly satisfied, with high agreement on being treated with sensitivity and respect (100% UC vs 99% ARIA), feeling listened to (99% UC vs 98% ARIA), getting clear, understandable information (98% UC vs ARIA 97%), and feeling comfortable asking questions and voicing concerns (96% in UC vs 98% in ARIA). 97% of participants with normal cancer results recalled their results correctly vs. 90% with VUS results vs. 89% with abnormal results. 90% with normal additional finding results were accurate while patients with abnormal additional findings were more likely to recall results correctly if the result was medically actionable (88%) than if not (17%). Mean cancer genetics knowledge for both groups was high at baseline (81% accuracy UC, 78% ARIA) and showed a small increase from baseline to follow-up for both groups (+3% UC, +4% ARIA). Conclusions. Communication satisfaction appears to be similar between arms; inferential testing of the outcomes is in progress. Although knowledge was high, participants’ recall of their results appeared to be similar between arms but may have varied by type and actionability of the result.
Session Type
Ethical‚ Legal‚ Social Issues/Diversity‚ Equity and Inclusion
Genetic Counseling‚ ELSI‚ Education‚ and Health Services Research