Decision-making in Screening Positive Participants Who Follow Up with Colonoscopy in the Dutch Colorectal Cancer Screening Programme: A Mixed-Method Study

Objective To explore worry and decision-making processes used by faecal immunochemical test (FIT)-positive participants in the Dutch national screening programme for colorectal cancer. Methods A mixed-methods study consisting of 22 semi-structured interviews in FIT-positive participants who underwent the recommended colonoscopy within 4-6 months after the FIT result, followed by a widespread questionnaire in a larger target population (N = 1495). Results In the interviews, we recognised two different decision-making processes. The first is an affective heuristic decision process where the decision to participate is made instantly and is paired with high-risk perception, worry and (severe) emotional turmoil. The second is a more time-consuming analytical decision process in which participants describe discussing options with others. In the questionnaire, high levels of cancer worry (CWS > 9) were reported by 34% of respondents. Decisional difficulties were reported by 15% of respondents, and 34% of respondents reported discussing the positive FIT result with their GP. Individuals with high levels of cancer worry contacted their GP less often than those with low levels. Conclusions The Dutch two-step screening programme may result in high levels of cancer worry in a non-cancer population. More research is needed to monitor worry and its role in decision-making in cancer screening, as well as ways to facilitate decision-making for participants.