Genetic testing in endometrial cancer (GenEC): A study on the patient experience with MSK-IMPACT.

Abstract

e22635 Background: Guidelines recommend consideration of genetic testing (GT) for patients with endometrial cancer (EC); however, real-world uptake varies, and data are limited on the patient experience. We aimed to measure uptake of GT in EC and survey patient perspectives. Methods: All patients with newly diagnosed EC eligible for tumor-normal targeted sequencing via MSK-IMPACT were prospectively tracked and invited to complete surveys, regardless of GT acceptance. Clinical and demographic data were abstracted. Surveys included investigator-designed items assessing GT knowledge, GT information sources, and experiences with GT decision-making, and a validated 7-item Medical Mistrust Index (MMI). This study was approved under MSK IRB X25-012. Results: We identified 50 patients with newly diagnosed EC between 09/25/2025 – 12/5/2025. Median age was 65 years (range, 29 – 86) and 22 (44%) patients had stage I disease. Patients identified as White (n=29, 58%), Black (n=7, 14%), Asian (n=5, 10%), and other/missing (n=9, 18%), and 47 (94%) patients selected English as primary language. Overall, 43 (86%) patients consented to MSK-IMPACT GT, 4 (8%) declined, and 3 (6%) were undecided. Of 50 patients, 15 (30%) completed the survey, and all consented to GT. All patients had high school level or above education, and 2 patients reported a history of anxiety/depression. Of the 15 patients, 67% reported being somewhat or very knowledgeable about GT prior to their visit, while 33% had no prior knowledge. Patients reported getting information on GT from multiple sources, including another provider (n=7, 47%), online (n=6, 40%), family/friends (n=3, 27%), other (n=3, 20%), and social media (n=1, 7%). After the medical visit, 67% patients reported improved understanding of GT and 53% felt hopeful. Most patients felt they received enough information to decide on GT (n=11, 73%) and that GT discussions were understandable (n=11, 73%). Of the 15 respondents, 3 (20%) reported some difficulty trusting healthcare providers in a single question regarding mistrust, and the median MMI score was 2.3, indicating a low level of medical mistrust overall. MMI questions with the highest mistrust rates were about “patients have sometimes been deceived or misled by healthcare organizations” (8 patients agreed, 53%) and “healthcare organizations have sometimes done harmful experiments on patients without their knowledge” (8 patients agreed, 53%). Conclusions: There was high uptake of GT among patients with newly diagnosed EC. Most patients reported prior knowledge of GT and felt adequately informed by their provider to make decisions on GT. Although there was a low level of medical mistrust among patients who answered surveys, this represented a small group who all consented to GT. Further surveys and semi-structured interviews are ongoing to better characterize the patient experience, particularly among those who decline GT.