Exploring the psychological burden in a pancreatic cancer surveillance programme based on high-risk individuals: a Swedish cross-sectional study

Abstract

Introduction: Pancreatic cancer, an aggressive cancer that presents with few or unspecific symptoms, has a poor prognosis. Thus, diagnosis at an early stage is vital for survival and a chance for curative treatment. Therefore, surveillance programmes for high-risk individuals are of the utmost importance. However, data on the psychological burden among participants in these programmes are limited.

Aims: This study aimed to investigate the psychological burden for participants in a pancreatic cancer surveillance programme and explore whether the psychological burden was related to the individual's risk level for pancreatic cancer.

Methods: This single-centre cross-sectional study investigated cancer worry, anxiety, coping and perceived physical and mental health using a digital questionnaire, including the following instruments: Cancer Worry Scale (CWS), State-Trait Anxiety Inventory (STAI), 13-Item Sense of Coherence and 12-Item Short-Form Survey. The invited participants (n=413) were healthy individuals with an increased risk of pancreatic cancer enrolled in a pancreatic cancer surveillance programme.

Results: The results indicated high cancer worry among respondents (n=78) with high scores on CWS (mean, 16.45). The majority (69.3%) had scores indicating high cancer worry (≥14). Anxiety was not equally high among respondents (mean STAI-T, 35.13; STAI-S, 35.9). Female sex and younger age were significantly correlated with higher cancer worry and anxiety (p < 0.001). Outcomes in coping and perceived health were similar to those of the normal population.

Conclusions: Cancer worry is particularly high among participants. No correlation was found between the risk level and psychological burden.

Keywords: Cancer genetics; Mass Screening; Pancreatic disease.