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

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.

Psychological distress and quality of life following positive fecal occult blood testing in colorectal cancer screening

“…Previous studies in CRC 20 and prostate cancer survivors 32 both showed that one in four had high levels of worry of cancer recurrence (CWS ≥ 14 in eight‐item CWS), with a median of 5.1 and 7.5 years after surgery, respectively 20 . Although the CWS has been validated for cancer survivors, it has also been used to measure worry about the risk of developing cancer among participants in a cancer surveillance program 33 . The cutoff point ≥10, based on a Dutch validation study in cancer patients and survivors, has led to our conclusion that there was a high level (17%) of cancer‐specific worry up to 6 months in patients with no malignant lesions.…”

Fear of recurrence among older breast, ovarian, endometrial, and colorectal cancer survivors: Findings from the WHI LILAC study

“…18,19 In addition, the CWS’s clinical cutoff scores are empirically based. In its development, the CWS assessed sensitivity, specificity, and positive and negative predictive values at each cutoff point against 2 items of the Cancer Acceptance Scale.…”

Relationship between individual and family characteristics and psychosocial factors in persons with familial pancreatic cancer

“…Overall, 21% of the sample reported sustained moderate to elevated distress . The same research team reports in a similar study that 33% of individuals undergoing pancreatic cancer surveillance experienced cancer worry, especially those with a family history of early‐onset pancreatic cancer . Two other prospective studies have been completed in a sample of unaffected individuals with high pancreatic cancer risk.…”

“…6 The same research team reports in a similar study that 33% of individuals undergoing pancreatic cancer surveillance experienced cancer worry, especially those with a family history of early-onset pancreatic cancer. 7 Two other prospective studies have been completed in a sample of unaffected individuals with high pancreatic cancer risk. In these 2 studies, distress, cancer worry, and risk perception were measured 3 months 8 and 1 year following genetic counseling and screening.…”