Assessment of Psychological Burden in Individuals with Hereditary Risk of Pancreatic Cancer Under Surveillance: Evaluation of Distress 3 Years After Enrollment.

Abstract

Background: Pancreatic cancer (PC) remains one of the deadliest malignancies, with long-term survival often reliant on early detection through surgery and chemotherapy. Unfortunately, the late-stage presentation of the disease contributes to its poor prognosis, leading to an increased focus on surveillance for high-risk individuals (HRIs) to facilitate earlier diagnosis. Despite the growing implementation of such programmes globally, there is a lack of longitudinal studies examining the benefits of PC surveillance, particularly regarding the well-being of participants. The study aimed to evaluate the distress experienced by HRIs 3-years after engaging in PC screening at Verona Pancreas Institute and to describe which participant characteristics contributed to the increase in stress. Methods: This is a longitudinal follow-up (FU) of a previously published cohort. HRIs with heredo-familial predisposition undergoing PC surveillance with MRCP and a clinical visit were re-evaluated from 2019 to 2023 in the same psychological assessment using Perceived Stress Scale (PSS), General Self-Efficacy Scale (GSES), Coping Orientation to Problems Experienced (COPE) and The Scale of Perceived Social Support (MSPSS) 3 years after the baseline assessment. The FU assessments were conducted by a clinical psychologist via telephone after the radiological and clinical evaluations were made. Results: Of the 54 HRIs initially evaluated, ten did not respond to phone contacts. The remaining 44 HRIs, of whom 29 (65.9%) were female, with a mean age of 56.1 years (SD = 10.2), agreed to participate in a FU psychological assessment. After 3 years, the participant exhibited an increase in stress levels (PSS-T0 mean 14.8; T1 mean 16.9), a decrease in problem-solving abilities (GSES-from 32.02 to 28.09, p < 0.01), a deterioration in adaptive capacity to the situation (COPE total score from 64.0 to 61.39, p = 0.05), and a reduction in perceived social support (MSPSS-T0: 4.59; T1: 4.27, p = 0.02). A significant decrease was also observed in the use of denial (from 2.84 to 2.32; p = 0.02). Based on the psychological characteristics of the 44 HRIs, stratified according to PSS reassessed at FU, 3 distinct clusters were identified: (a) Normal Stress (32% of the sample): HRIs with a PSS score < 14; (b) Stable Clinical Stress (46% of the sample): HRIs with PSS at FU > 14 and PSS at baseline > 14; (c) New Clinical Stress (22% of the sample): HRIs with PSS at FU > 14 and PSS at baseline < 14. After 3 years of surveillance for PC, 67% of the total study sample (Stable Clinical Stress group and New Clinical Stress group) exhibited high perceived stress. Over the course of the 3 years, 7 HRIs (15.9%) lost a family member due to PC. Conclusions: The data suggest the need to include psychological care pathways within the surveillance programmes. These insights can enhance existing literature and aid in creating comprehensive surveillance programmes for PC, addressing all care aspects, including mental health.