Racial, Ethnic, and Sex-based Disparities among High-risk Individuals Undergoing Pancreatic Cancer Surveillance

Abstract

Since its inception two years ago, the international, multicenter Pancreatic Cancer Early Detection (PRECEDE) Consortium has enrolled high-risk individuals (HRI) undergoing pancreatic ductal adenocarcinoma (PDAC) surveillance. Herein we aim to evaluate enrollment disparities in PRECEDE. Data on HRIs enrolled between May 2020 and March 2022 were collected, with HRIs defined as participants enrolled in PRECEDE meeting guideline-based criteria for PDAC surveillance. Of 1,273 HRIs enrolled, 1,113 were eligible for inclusion, with 47.2% meeting familial pancreatic cancer criteria without a known pathogenic variant (PV) and the remainder having a pathogenic variant in a PDAC-risk gene (CDKN2A, STK11, PRSS1, BRCA1, BRCA2, PALB2, ATM, MLH1, MSH2, MSH6, PMS2, or EPCAM). Study participants were predominantly from the United States (82.7%), the most common age range at enrollment was 60–69 years (37.4%), and a non-PDAC cancer was present in 32.4%. There were racial/ethnic- and sex-based disparities among enrolled subjects, as the majority of participants were female (65.9%) and self-reported white (87.7%), with only 2.9% having Hispanic ethnicity. While more than 97% of participants consented to utilize imaging data and biosamples for research, there was no difference in rate of consent based on race/ethnicity, sex, or age, thereby demonstrating uniform participation in research activities among all subgroups after enrollment. Ensuring that diversity of HRIs in PDAC surveillance programs mirrors the communities served by participating centers is important. Substantial racial/ethnic- and sex-based disparities persist among recently enrolled HRIs undergoing PDAC surveillance, and therefore reducing these disparities will be a major focus of the PRECEDE Consortium moving forward. Prevention Relevance: Pancreatic cancer surveillance is critical to decreasing pancreatic cancer mortality; therefore, it is important that pancreatic cancer surveillance studies enroll diverse patients. We demonstrate that substantial racial/ethnic- and sex-based disparities exist amongst enrollment in the international PRECEDE consortium, highlighting the dire need for future efforts to reduce these disparities. See related Spotlight, p. 305

The Pancreatic Cancer Early Detection (PRECEDE) Study is a Global Effort to Drive Early Detection: Baseline Imaging Findings in High-Risk Individuals

“…PRECEDE is committed to increasing participant diversity and equity in access to PC surveillance. 33 Our interim analysis showed that participants are overwhelmingly non-Hispanic White (89%). To increase enrollment diversity, we are onboarding centers that historically serve marginalized populations.…”

Germline mutations of homologous recombination genes and clinical outcomes in pancreatic cancer: a multicenter study in Taiwan

“…However, germline variants in other genes may be rare, making it challenging to assess their impacts in a cohort of this size. A larger-scale nationwide or international collaboration program, such as the PRECEDE Consortium [ 44 ], is needed to address this issue.…”

Potential Health Disparities in the Early Detection and Prevention of Pancreatic Cancer

“…Reasons for lack of participation in clinical research studies among African Americans include historical medical distrust of the research community, fear of research, and lack of information [ 23 ]. Racial disparity has also been revealed for high-risk individuals (genetic susceptibility or family history of pancreatic cancer) undergoing surveillance for pancreatic cancer through the Pancreatic Cancer Early Detection (PRECEDE) consortium; specifically, 87.7% of high-risk individuals self-identified as White, and only 2% as Black (total 1113 subjects) [ 24 ]. To our knowledge, this is the first study to document racial disparity in the management of patients with pancreatic cysts.…”