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Cancer genetics
Original research
Risk perception and surveillance uptake in individuals at increased risk for pancreatic ductal adenocarcinoma
  1. Denis Nguyen1,
  2. Ophir Gilad2,
  3. Christine M Drogan2,
  4. Zoe Eilers2,
  5. Chuanhong Liao3,
  6. Sonia S Kupfer2
  1. 1 Pritzker School of Medicine, University of Chicago, Chicago, Illinois, USA
  2. 2 Section of Gastroenterology, Hepatology and Nutrition, Department of Medicine, University of Chicago, Chicago, Illinois, USA
  3. 3 Department of Public Health Sciences, University of Chicago, Chicago, Illinois, USA
  1. Correspondence to Dr Sonia S Kupfer, Section of Gastroenterology Hepatology and Nutrition, University of Chicago, Chicago, IL 60637, USA; skupfer{at}bsd.uchicago.edu

Abstract

Background Surveillance for pancreatic ductal adenocarcinoma (PDAC) is recommended for high-risk individuals with genetic variants in PDAC-associated genes and/or family history. Surveillance uptake and adherence may depend on the perception of PDAC risk and cancer worry. We aimed to determine PDAC risk perception in at-risk individuals and assess factors associated with PDAC surveillance uptake.

Methods At-risk individuals identified from a prospective academic registry were sent a survey electronically. PDAC risk perception, cancer worry and surveillance uptake were surveyed. Factors associated with increased risk perception and surveillance were assessed. Five-year PDAC risk was calculated using the PancPRO risk assessment model, and correlation with subjective risk assessment was assessed.

Results The overall survey response rate was 34% (279/816). The median perceived PDAC risk was twofold (IQR 1–4) above respondents’ estimates of general population risk. Factors significantly associated with higher perceived PDAC risk included non-Hispanic white race, post-graduate education level, PDAC-affected first-degree relative, genetic variants and lack of personal cancer history. Cancer worry had a very weak correlation across PDAC risk estimates (r=0.16). No correlation between perceived PDAC risk and 5-year calculated PDAC risk was found. Older age, having a first-degree relative with PDAC, meeting with a medical provider about PDAC cancer risk and awareness of surveillance modalities were significant predictors of undergoing PDAC surveillance.

Conclusions Individuals at risk for PDAC do not report risk perception that correlates with calculated risk. This presents an opportunity for counselling of at-risk patients to individualise management and improve surveillance uptake for eligible individuals.

  • pancreatic diseases
  • population characteristics

Data availability statement

Data are available upon reasonable request.

https://doi.org/10.1136/jmg-2023-109539

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    Data availability statement

    Data are available upon reasonable request.

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    Footnotes

    • Twitter @christinedrogan

    • DN and OG contributed equally.

    • Presented at Portions of this manuscript were presented at Digestive Disease Week 2022, San Diego, California, 21–24 May 2022.

    • Contributors DN and OG: formal analysis; writing—original draft, review and editing. CMD: conceptualisation; resources; writing—review and editing. ZE: resources and data curation; writing—review and editing. CL: formal analysis; writing—review and editing. SSK: conceptualisation; writing—review and editing; supervision. Guarantor of the study: SSK.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.