Patient-reported burden of intensified surveillance and surgery in high-risk individuals under pancreatic cancer surveillance

Abstract

In high-risk individuals participating in a pancreatic cancer surveillance program, worrisome features warrant for intensified surveillance or, occasionally, surgery. Our objectives were to determine the patient-reported burden of intensified surveillance and/or surgery, and to assess post-operative quality of life and opinion of surgery. Participants in our pancreatic cancer surveillance program completed questionnaires including the Cancer Worry Scale (CWS) and the Hospital Anxiety and Depression Scale (HADS). For individuals who underwent intensified surveillance, questionnaires before, during, and ≥ 3 weeks after were analyzed. In addition, subjects who underwent intensified surveillance in the past 3 years or underwent surgery at any time, were invited for an interview, that included the Short-Form 12 (SF-12). A total of 31 high-risk individuals were studied. During the intensified surveillance period, median CWS scores were higher (14, IQR 7), as compared to before (12, IQR 9, P = 0.007) and after (11, IQR 7, P = 0.014), but eventually returned back to baseline (P = 0.823). Median HADS scores were low: 5 (IQR 6) for anxiety and 3 (IQR 5) for depression, and they were unaffected by the intensified surveillance period. Of the 10 operated patients, 1 (10%) developed diabetes and 7 (70%) pancreatic exocrine insufficiency. The interviews yielded median quality-of-life scores comparable to the general population. Also, after surgery, patients' attitudes towards surveillance were unchanged (5/10, 50%) or became more positive (4/10, 40%). Although patients were aware of the (sometimes benign) pathological outcome, when asked if surgery had been justified, only 20% (2/10) disagreed, and all would again have chosen to undergo surgery. In conclusion, in individuals at high risk for pancreatic cancer, intensified surveillance temporarily increased cancer worries, without affecting general anxiety or depression. Although pancreatic surgery led to substantial co-morbidity, quality of life was similar to the general population, and surgery did not negatively affect the attitude towards surveillance.

Health-related quality of life and anxiety levels among patients under surveillance for intraductal papillary mucinous neoplasm

“…In another Italian study comparing surgically treated IPMN patients to IPMN patients undergoing follow-up, patients being followed felt less healthy and experienced more anxiety and stress than surgical patients [ 9 ]. This result differed from a Dutch study [ 10 ], which found that high-risk individuals under pancreatic cancer surveillance only temporarily exhibited increased cancer worries and, in the long term, surveillance reduced their concern and provided a sense of certainty. Their study was conducted on patients at a higher risk for pancreatic cancer, however, not on IPMN patients.…”

The additive value of CA19.9 monitoring in a pancreatic cyst surveillance program

“…Thus, false positive outcomes are common, as our results show. Also, we established that this often leads to an intensified follow‐up regimen, which could cause harm due to unnecessary diagnostic procedures (such as EUS/FNA) and psychological distress 17–19 . Moreover, in the current study, 45% of operated individuals underwent surgery for benign disease, while we know that pancreatic surgery is associated with substantial grade III‐IV (Clavien‐Dindo) morbidity (4%–31%) and mortality (2%–6%) 20–24 …”

Surveillance of Individuals at High Risk of Developing Pancreatic Cancer

“…Finally, we have yet to be able to analyze data at a patient level, and we have not been able to evaluate and quantify the perception of HRIs under surveillance toward surgery, balancing the weight of undergoing a possibly unnecessary physical harm (the greatest being for total pancreatectomy, that impact adversely and somehow irreversibly the quality of life, 55 in this series occurring in 13.7% of cases), with the psychological burden of the repeated examinations of the follow-up for a preneoplastic lesion, already reported for HRI undergoing pancreatic cancer surveillance. 56 In conclusion, surgical resection of low-yield lesions not considered CAPS guidelines goals may occur in a small subset of HRIs undergoing pancreatic cancer surveillance. Such lesions may be deemed to have been resected before they turn into cancer, eventually reducing risks, but they may also have never become malignant.…”

“…Also, despite extensive efforts to avoid duplication, we cannot exclude that CAPS-based studies may partially include overlapping populations. Finally, we have yet to be able to analyze data at a patient level, and we have not been able to evaluate and quantify the perception of HRIs under surveillance toward surgery, balancing the weight of undergoing a possibly unnecessary physical harm (the greatest being for total pancreatectomy, that impact adversely and somehow irreversibly the quality of life, 55 in this series occurring in 13.7% of cases), with the psychological burden of the repeated examinations of the follow-up for a preneoplastic lesion, already reported for HRI undergoing pancreatic cancer surveillance 56 …”