Abstract
Abstract Purpose: Genetic counseling (GC) and testing for hereditary breast/ovarian cancer (HBOC) is concentrated in elite medical centers and not offered in most public hospitals despite comparable risk across income levels. GC may be extended remotely by phone or video to patients in low resource settings, but the benefits and harms of these modes for these patients are unknown. Methods: We conducted a multicenter partially randomized preference noninferiority trial in 3 public hospitals to compare the effectiveness of 3 GC modes (in-person, phone, video) among 679 diverse patients at high-risk for HBOC. To answer some of our most important questions (e.g. How engaged are patients with counselors and how does that affect outcomes? What about the GC affects key message recall? How do patients' life/health contexts affect GC impact? How do these dynamics differ by GC mode?), we compiled 23 case studies (CS) for a multifaceted understanding of patient context, intended to reveal influences that may be subtle, complex, and not accessible from individual self-report. The main trial outcome was presented at AACR 2020; here we report the case studies methods and findings. CS participants had consented to audio-recording their GC sessions; agreed to be contacted for further research during the final trial survey; and had been offered genetic testing but did not have results at the time of the in-depth CS interview. An iterative analytic process integrated and summarized qualitative and quantitative data from surveys, interviews, genetic counselor reflections and audio recordings for each case including: patient demographics, health literacy rating, GC mode; GC session duration, key points, and engagement; genetic counselor reflections; interview highlights; general conclusions about that case; conclusions based on mode; patient quotes; and an integrated conclusion from all the data elements. Results: Our randomized trial produced equivalent outcomes across 3 GC modes. But our case studies revealed critical differences including higher quality engagement and trust-building via in-person and video counseling compared with phone, where distractions and brevity were common. While more patients opted for the convenience of phone, and for many it was their only option due to work and other demands, those counseled by phone were least likely to complete genetic testing when it was offered. Patients in all modes struggled with information recall. Conclusions: GC by phone is an important source of access for low-income patients but research should strive for higher quality. GC by video holds promise but availability is a concern. For both remote modes, easy access to testing is required. Strategies to improve information recall are needed in all modes. Research using quantitative cognitive ascertainment should include mixed methods for a more multifaceted in-depth exploration that yields rich real-world insights. Citation Format: Rena J. Pasick, Claudia Guerra, Selina R. Flores, Galen Joseph. Blending research paradigms and methods to compare 3 modes of cancer genetic counseling with diverse public hospital patients: Insights from case studies [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-051.
Published Version
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