Assessment of barriers to pancreatic cancer surveillance in high-risk individuals

Individuals with increased familial or genetic risk of pancreatic cancer (PC) may be recommended to undergo regular PC surveillance. Genetic counselors are often involved in discussions about PC surveillance for high-risk individuals (HRIs); however, barriers to HRIs' participation in PC surveillance are not well characterized. This study aimed to identify reasons that HRIs cease, defer, or do not commence recommended PC surveillance through telephone interviews. Participants either had prior annual PC surveillance with no surveillance completion in ≥2 years, had a ≥2-year period without surveillance completion, or had not completed an initial surveillance imaging study 3 months after it was ordered. Fifty telephone interviews were analyzed using directed content analysis. Twenty interviewees had familial PC (34.5%) and 38 (65.5%) had a pathogenic variant associated with increased PC risk, with BRCA2 being the most common (N = 15, 25.9%). Interviewees were 74.1% women and 93.1% White with a median age of 63.0 years. Logistical barriers (N = 11, 34.4%), different healthcare professional recommendations (N = 9, 28.1%), other health issues (N = 8, 25.0%), and difficulty recalling surveillance recommendations (N = 8, 25.0%) were the top reasons for ceasing or deferring PC surveillance. Difficulty recalling surveillance recommendations (N = 5, 27.8%), cost (N = 4, 22.2%), and invasiveness of procedures (N = 4, 22.2%) were the top reasons for not commencing PC surveillance. Other reasons included the COVID-19 pandemic, moving from the service delivery area, cost, concerns about imaging studies, nonmedical life events, and fear. Several barriers identified in this study were consistent with barriers faced in screening for other more common cancers. These results demonstrate the need for targeted strategies to reduce PC surveillance barriers for HRIs. Furthermore, given that HRIs face multiple barriers to PC surveillance, it is important that cancer genetics professionals familiarize themselves with these barriers to reduce their impact and to facilitate recommended PC surveillance among HRIs.