Factors associated with cancer worries in individuals participating in annual pancreatic cancer surveillance

Ingrid C.A.W Konings,Marianne A Kuenen,Eveline M.A Bleiker,Paul Fockens,Marco J Bruno,Ellen M.A Smets,Cora M Aalfs,Anja Wagner,Margreet G.E.M Ausems,Femme Harinck,Jeanin E Van Hooft,Jacobien M Kieffer,Frank P Vleggaar,Jan-Werner Poley,Anja Van Rens,Grace N Sidharta

doi:10.1007/s10689-016-9930-4

Abstract

It is important to adequately and timely identify individuals with cancer worries amongst participants in a pancreatic ductal adenocarcinoma (PDAC) surveillance program, because they could benefit from psychosocial support to decrease distress. Therefore, the aim of this study was to assess both psychosocial and clinical factors associated with cancer worries. High-risk individuals participating in PDAC-surveillance were invited to annually complete a cancer worry scale (CWS) questionnaire which was sent after counseling by the clinical geneticist (T0), after intake for participation in PDAC-surveillance (T1), and then annually after every MRI and endoscopic ultrasonography (EUS) (T2 and further). Analyses were performed to identify factors associated with cancer worries in the second year of surveillance (T3). We found a significant intra-individual decrease in cancer worries (β = −0.84, P < 0.001), nevertheless, 33 % of individuals had a CWS-score ≥14 at T3. We found one factor significantly associated with cancer worries at T3: having a family member affected by PDAC <50 years of age (β = 0.22, P = 0.03). The detection of a cystic lesion, a shortened surveillance interval, or undergoing pancreatic surgery did not lead to more cancer worries (P = 0.163, P = 0.33, and P = 0.53, respectively). In conclusion, this study identified ‘a family history of PDAC <50 years of age’ as the only predictor of cancer worries experienced after 2 years of surveillance in individuals at high risk of developing PDAC. This knowledge could help clinicians to timely identify individuals ‘at risk’ for high levels of cancer worries who would likely benefit from psychosocial support.

Highlights

Pancreatic ductal adenocarcinoma (PDAC) is a deadly disease: despite its relatively low incidence of 10–12 new cases per 100,000 persons/year [1,2,3], pancreatic ductal adenocarcinoma (PDAC) is ranked among the top five causes of cancer-related deaths [4, 5]
It is important to adequately and timely identify individuals with cancer worries amongst participants in a pancreatic ductal adenocarcinoma (PDAC) surveillance program, because they could benefit from psychosocial support to decrease distress
Two specific groups of individuals are considered to be at high risk of developing PDAC: (1) mutation carriers of hereditary syndromes that increase the risk of developing PDAC, and (2) individuals without a known gene mutation but who have a strong family history of PDAC [familial pancreatic cancer (FPC)]

Summary

Introduction

Pancreatic ductal adenocarcinoma (PDAC) is a deadly disease: despite its relatively low incidence of 10–12 new cases per 100,000 persons/year [1,2,3], PDAC is ranked among the top five causes of cancer-related deaths [4, 5]. Two specific groups of individuals are considered to be at high risk of developing PDAC: (1) mutation carriers of hereditary syndromes that increase the risk of developing PDAC (i.e. carriers of mutations in the CDKN2A, BRCA1, BRCA2 or TP53 gene, and individuals with Peutz–Jeghers or Lynch syndrome), and (2) individuals without a known gene mutation but who have a strong family history of PDAC [familial pancreatic cancer (FPC)] In these individuals, the risk of developing PDAC can be up to 75-fold higher than in the general population [6,7,8,9,10,11,12,13]

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