A Mixed-Methods Approach to Assessing Barriers and Facilitators to Cancer Genetics Care in Black and Latino/a Individuals Impacted by Pancreatic Cancer: The Racial/ethnic Equity in GENetic Education, Risk Assessment, and TEsting (REGENERATE) Study.

Abstract

Purpose: Pancreatic ductal adenocarcinoma (PDAC) disproportionately impacts Black and Latino/a communities, who are less likely to receive genetic counseling/testing referrals, hindering early cancer detection/prevention access. This study aims to determine the barriers/facilitators to PDAC genetics care/surveillance among Black and Latino/a populations.

Methods: This is a concurrent mixed-methods study that utilized electronic surveys and semi-structured focus groups/in-depth interviews (02/14/2022-12/21/2022). This was a volunteer sample of Black or Latino/a general participants with a personal or family history of PDAC and community leaders serving these groups. Participants discussed barriers/facilitators to PDAC cancer genetics care/surveillance. Health literacy, cancer worry, medical trust, and inherited cancer risk were assessed using electronic surveys. Discussions were recorded, transcribed, and analyzed using a content analysis approach. Chi-square tests, two-sample t-tests, and one-way analysis of variance were used to evaluate survey data using R v4.3.2.

Results: 55 participants (n = 27 general participants, 28 leaders) completed surveys. 27 (49%) self-identified as Black and 23 (42%) as Latino/a. Leaders (74%) reported higher levels of perceived medical mistrust among their communities than general participants (Trust in Physician Scale mean/SD 29.9/4.2 vs. 38.4/5.2, p < 0.001; Medical Mistrust Index = 18.8/4.2 vs. 24.4/3.6; p < 0.001, respectively). General participants self-reported higher digital health seeking capabilities than leaders' perception of that skillset (p < 0.001). 24 of these participants completed a focus group/in-depth interview, emphasizing informed discussions with a trusted/established provider.

Conclusions: Individuals impacted by PDAC are open to genetics care and desire resources to promote PDAC surveillance. It is also crucial that leaders and providers be engaged to facilitate access to this care.