Abstract

Background: The success of pancreatic cancer (PC) surveillance depends to a large extent on the commitment of participants to adhere to the repeated follow-up investigations. Though the results of our recently conducted retrospective study showed that the burden of PC surveillance is acceptable, a prospective assessment was warranted to document the mental and psychological impact of PC screening. We aimed to investigate possible changes in cancer worries and levels of anxiety and depression in high-risk individuals participating in a PC surveillance program. Methods Eligible for this prospective questionnaire study were high-risk individuals participating in our multicenter nationwide endoscopic ultrasound (EUS)-MRI-based PC-surveillance study. High-risk individuals were those with a strong family history of PC or carriers of PC-prone gene mutations. Questionnaires, administered both before (pretest) and after (posttest) the baseline PC screening investigations, assessed concerns about developing cancer (CancerWorry Scale), and levels of anxiety and depression (Hospital Anxiety and Depression scale). Results Of the 54 high-risk individuals, 47 (87%) completed both the pretest and posttest questionnaires (38% male, mean age= 52 yr., range 20-74 yrs.). Of these, 44 participated in the PC screening and 3 declined. All participants underwent both EUS and MRI. Prior to undergoing PC screening, 36% of the participants reported being fearful about undergoing EUS, whereas 5% was fearful about the MRI. After screening, 2.3% of all participants feared the next EUS (p<.001) and 2.3% the next MRI. The mean level of depression was significantly higher prior to screening as compared to after screening (p<.001). However, the number of participants with clinical levels of anxiety and/ or depression was low (n=5) and remained stable over time. Prior to, as well as after screening the most frequently reported worries were about the possibility of developing cancer themselves (29% at both time points) and the chance that relatives would develop cancer (19% and 21%, respectively). The 3 individuals who did not undergo screening indicated that they were not very fearful of the MRI or EUS. They also had low levels of anxiety, depression and cancer worries. Conclusion: The results of this prospective study indicate that: (1) the expected burden of EUS is higher than the actual experienced burden; and that (2) mean levels of anxiety, depression and cancer worries are not significantly influenced by participating in the PC screening program. This finding is of great importance for this group that is at high risk of developing pancreatic cancer and might benefit from participation in a life-long repeated PC surveillance program.

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