• CDKN2A
• cancer surveillance
• cancer worry
• genomic medicine
• hereditary cancer syndrome
• hereditary melanoma
• hereditary pancreatic cancer
• molecular genetics
• psychological distress
• quality of life

• Humans
• Quality of Life/psychology
• Male
• Middle Aged
• Female
• Germ-Line Mutation
• Adult
• Psychological Distress
• Cyclin-Dependent Kinase Inhibitor p16/genetics
• Pancreatic Neoplasms/genetics
• Pancreatic Neoplasms/psychology
• Melanoma/genetics
• Melanoma/psychology
• Aged
• Skin Neoplasms/genetics
• Skin Neoplasms/psychology

• Endoscopic ultrasonography
• Endoscopic ultrasound
• High-risk individuals
• Pancreatic cancer
• Screening
• Surveillance

• Humans
• Endosonography/methods
• Pancreatic Neoplasms/diagnostic imaging
• Carcinoma, Pancreatic Ductal/diagnostic imaging
• Carcinoma, Pancreatic Ductal/pathology
• Early Detection of Cancer/methods
• Magnetic Resonance Imaging/methods
• Cholangiopancreatography, Magnetic Resonance/methods

• anxiety
• cancer
• cancer precursor
• depression
• mental health
• oncology
• ptsd
• trauma

• Anxiety/diagnosis
• Early Detection of Cancer
• Humans
• Mental Health
• Neoplasms/diagnosis
• Quality of Life
• Stress Disorders, Post-Traumatic/psychology

• Familial risk
• Pancreatic cancer
• Risk perception

• Family
• Genetic Predisposition to Disease
• Humans
• Pancreatic Neoplasms/epidemiology
• Pancreatic Neoplasms/genetics
• Siblings
• Pancreatic Neoplasms

• U01 CA210138 NCI NIH HHS
• P50 CA102701 NCI NIH HHS
• P20 CA102701 NCI NIH HHS
• R01 CA097075 NCI NIH HHS
• P30 CA015083 NCI NIH HHS
• R01 CA154517 NCI NIH HHS

• Endoscopic ultrasound
• Impact of events scale
• Pancreatic cancer screening
• Psychological consequences questionnaire

• Familial
• High-risk individuals
• Italy
• Pancreatic cancer
• Surveillance

• Adult
• Aged
• Carcinoma, Pancreatic Ductal/genetics
• Carcinoma, Pancreatic Ductal/prevention & control
• Case-Control Studies
• Cohort Studies
• Female
• Genetic Predisposition to Disease
• Germ-Line Mutation
• Humans
• Italy
• Male
• Middle Aged
• Pancreatic Neoplasms/genetics
• Pancreatic Neoplasms/prevention & control
• Pedigree
• Registries
• Risk Assessment

• cancer
• cancer worries
• coping strategies
• emotional impact
• high-risk individuals
• oncology
• pancreatic cancer
• psychological burden
• surveillance

• Adaptation, Psychological
• Adult
• Anxiety/psychology
• Attitude to Health
• Early Detection of Cancer/psychology
• Female
• Humans
• Male
• Middle Aged
• Pancreatic Neoplasms/diagnosis
• Pancreatic Neoplasms/psychology
• Prospective Studies
• Social Support
• Stress, Psychological/psychology
• Surveys and Questionnaires
• Young Adult

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.

• Pancreatic cancer
• Patient-reported outcome measures
• Psychology
• Quality of life
• Resection
• Surveillance

• EUS
• EUS-FNA
• pancreatic cancer screening
• pancreatic cystic lesions
• quality of life

Pancreatic cancer (PC) is an aggressive disease with a dismal 5-year survival rate. Surveillance of high-risk individuals is hoped to improve survival outcomes by detection of precursor lesions or early-stage malignancy.

Since 2011, a national high-risk cohort recruited through St Vincent’s Hospital, Sydney, has undergone prospective PC screening incorporating annual endoscopic ultrasound, formal genetic counselling and mutation analysis as appropriate. PancPRO, a Bayesian PC risk assessment model, was used to estimate 5-year and lifetime PC risks for familial pancreatic cancer (FPC) participants and this was compared to their perceived chance of pancreatic and other cancers. Genetic counselling guidelines were developed to improve consistency. Follow-up questionnaires were used to assess the role of genetic counselling and testing.

We describe the Australian PC screening program design and recruitment strategy and the results of the first 102 individuals who have completed at least one-year of follow-up. Seventy-nine participants met the FPC criteria (≥ two first-degree relatives affected), 22 individuals had both a BRCA2 pathogenic variant and a close relative with PC and one had a clinical diagnosis of Peutz-Jeghers syndrome. Participants reported a high perceived chance of developing PC regardless of their genetic testing status. PancPRO reported FPC participants’ mean 5-year and lifetime PC risks as 1.81% (range 0.2–3.2%) and 10.17% (range 2.4–14.4%), respectively. Participants’ perceived PC chance did not correlate with their PancPRO 5-year (r = − 0.17, p = 0.128) and lifetime PC risks (r = 0.19, p = 0.091). Two-thirds felt that current genetic testing would help them, and 91% of tested participants were glad to have undergone genetic testing. Overall, 79% of participants found genetic counselling to be helpful, and 88% reported they would recommend counselling to their relatives.

Participants reported multiple benefits of genetic counselling and testing but continue to seek greater clarification about their individual PC risk. Extension of PancPRO is required to enable personalised PC risk assessment for all high-risk sub-groups. More detailed discussion of PC risk for BRCA2 pathogenic variant carriers, providing a written summary in all cases and a plan for genetics review were identified as areas for improvement.

• Endoscopic ultrasound
• Genetic counselling
• PancPRO
• Pancreatic cancer screening
• Personalised risk assessment

There is an increasing global interest in screening programs aiming to detect pancreatic cancer (PC) in an early and potentially curable stage. Concerns still remain as to whether screening would confer any survival benefit. Another approach to evaluate the benefits of the pancreatic screening programs would be to consider its impact on the quality of life of the individuals who at risk of developing cancer. The aim of this systematic review was to investigate the current knowledge regarding the psychological impact of participation in routine screening for PC.

A systematic literature search was carried out in January 2018 in three major databases which are as follows: PubMed, Scopus, and Web of Science. Cross-sectional and prospective studies evaluating the psychological aspects of screening in high-risk individuals were included in the study. For each study, the following data were recorded: name of first author, year of publication, study design, study population, aims, screening protocol, outcomes and instruments, main results, and summary of findings.

Six cohort studies and one cross-sectional study that addressed the psychological aspects of PC screening were included in the analysis. Overall, studies have shown that high-risk individuals have positive psychological outcomes from participating in PC screening programs.

Although screening might not always be reassuring, it may improve individuals’ quality of life, and this should be an important aspect when considering PC screening.

• EUS
• pancreatic cancer
• quality of life
• screening

Pancreatic cancer screening is recommended to individuals at risk (IAR) of familial pancreatic cancer (FPC) families, but little is known about the acceptance of such screening programs. Thus, the acceptance and psychological aspects of a controlled FPC screening program was evaluated.

IAR of FPC families underwent comprehensive counseling by a geneticist and pancreatologist prior to the proposed screening. Participating IAR, IAR who discontinued screening and IAR who never participated in the screening program were invited to complete questionnaires to assess the motivation for participating in surveillance, cancer worries, structural distress and experiences with participation. Questionnaires were completed anonymously to receive most accurate answers.

Of 286 IAR to whom pancreatic ductal adenocarcinoma (PDAC) screening was recommended, 139 (48.6%) IAR regularly participated (group 1), 49 (17.1%) IAR (group 2) discontinued screening after median 1 (1–10) screening visits and 98 (34.2%) IAR (group 3) never underwent screening. The overall response rate of questionnaires was 67% (189/286) with rates of 100% (139 of 139 IAR), 49% (29 of 49 IAR) and 23.4% (23 of 98 IAR) for groups 1, 2 and 3, respectively. At least 93% of IAR felt adequately informed about the screening program after initial counseling. However, only 38.8% received knowledge of or the recommendation for PDAC screening by physicians. The reported cancer-related distress and the fear of investigations were highest in group 1, but acceptably low in all three groups. The main reasons to discontinue or not to participate in screening were the time efforts and travel costs (groups 2 and 3 48,7%).

Less than 50% of IAR regularly participate in a proposed PDAC screening program, although the associated psychological burden is quite low. Physicians should be educated about high risk PDAC groups and screening recommendations. Time and travel efforts must be reduced to encourage more IAR to participate in a recommended screening.

• Acceptance of screening
• Familial pancreatic cancer
• Psychological aspects of screening
• Screening program

• Familial pancreatic cancer
• Hereditary tumor syndromes
• High-risk individuals
• International Cancer of the Pancreas Screening Consortium
• Intraductal papillary mucinous neoplasm
• Mucinous cystic neoplasm
• Pancreatectomy
• Pancreatic intraepithelial ­neoplasia
• Peutz-Jeghers syndrome
• Screening

• Carcinoma, Pancreatic Ductal/diagnosis
• Carcinoma, Pancreatic Ductal/genetics
• Carcinoma, Pancreatic Ductal/pathology
• Carcinoma, Pancreatic Ductal/therapy
• Early Detection of Cancer
• Humans
• Pancreatic Neoplasms/diagnosis
• Pancreatic Neoplasms/genetics
• Pancreatic Neoplasms/pathology
• Pancreatic Neoplasms/therapy
• Phenotype

• cancer
• oncology
• pancreatic cancer risk
• patient reported outcomes
• psychosocial

The instrument called “Hospital Anxiety and Depression Scale” (HADS) is frequently used to evaluate anxious and depressive symptomatology in patients who receive Cancer Genetic Counseling (CGC). However, this instrument cannot identify all of the psychosocial factors, such as the antecedents of the patients’ emotional states or their concerns. The objective of the present research was to compare cases detected with psychosocial alterations by means of HADS and a Psychological Health Interview (PHI).

A transversal analytical design was used. One hundred ten participants were included (97.3% females and 2.7% males). The average age was 45 years ±10 years.

The PHI identified twice the amount of participants with psychosocial alterations than did HADS, which only detected 43% of these participants.

The results of our study suggest that the PHI should be applied in addition to HADS to identify participants who would require psychological support due to recurrent concerns.

• Anxiety
• Breast cancer
• Cancer genetic counseling
• Depression scale
• Psychological Health Interview

Familial pancreatic cancer (FPC) is broadly defined as two first-degree-relatives with pancreatic cancer (PC) and accounts for 4%-10% of PC. Several genetic syndromes, including Peutz-Jeghers syndrome, hereditary pancreatitis, hereditary breast-ovarian cancer syndrome (HBOC), Lynch syndrome, and familial adenomatous polyposis (FAP), also have increased risks of PC, but the narrowest definition of FPC excludes these known syndromes. When compared with other familial tumors, proven genetic alterations are limited to a small proportion (< 20%) and the familial aggregation is usually modest. However, an ethnic deviation (Ashkenazi Jewish > Caucasian) and a younger onset are common also in FPC. In European countries, “anticipation” is reported in FPC families, as with other hereditary syndromes; a trend toward younger age and worse prognosis is recognized in the late years. The resected pancreases of FPC kindred often show multiple pancreatic intraepithelial neoplasia (PanIN) foci, with various K-ras mutations, similar to colorectal polyposis seen in the FAP patients. As with HBOC patients, a patient who is a BRCA mutation carrier with unresectable pancreatic cancer (accounting for 0%-19% of FPC patients) demonstrated better outcome following platinum and Poly (ADP-ribose) polymerase inhibitor treatment. Western countries have established FPC registries since the 1990s and several surveillance projects for high-risk individuals are now ongoing to detect early PCs. Improvement in lifestyle habits, including non-smoking, is recommended for individuals at risk. In Japan, the FPC study group was initiated in 2013 and the Japanese FPC registry was established in 2014 by the Japan Pancreas Society.

• familial pancreatic cancer
• registry
• high risk
• genetic
• surveillance

• Antineoplastic Agents/therapeutic use
• BRCA1 Protein/genetics
• BRCA2 Protein/genetics
• Carcinoma/diagnosis
• Carcinoma/epidemiology
• Carcinoma/genetics
• Carcinoma/therapy
• Early Detection of Cancer/methods
• Europe/epidemiology
• Genetic Predisposition to Disease
• Humans
• Incidence
• Japan/epidemiology
• Mutation
• Pancreatectomy
• Pancreatic Neoplasms/diagnosis
• Pancreatic Neoplasms/epidemiology
• Pancreatic Neoplasms/genetics
• Pancreatic Neoplasms/therapy
• Risk Factors
• United States/epidemiology

• Lynch syndrome
• familial gastrointestinal cancer
• genetic testing
• multigene panel testing

• Pancreatic cancer risk
• Patient reported experience
• Qualitative research

Pancreatic cancer (PancCa) is recognized as a component of many well-described hereditary cancer syndromes. Minimal research has focused on patient needs and experiences living with this risk.

To understand the meaning and experience of living with familial PancCa risk and to explore experiences related to screening and prevention of PancCa.

Participants underwent semi-structured, in-depth interviews. Adults without PancCa and who met familial or hereditary risk criteria were eligible. Thematic analysis was completed on the transcripts in order to identify patterns, consistencies, and differences. Narrative review of existing literature related to women living with hereditary breast and ovarian cancer (HBOC) risk was completed to explore similarities and differences between published findings and our current findings.

Nineteen individuals (9 male, 10 female) participated. Major themes addressed participants’ family experiences with PancCa and PancCa death and the associated grief from the experiences. Family experiences impacted how participants interpreted and approached their own cancer risk and participated in the cancer screening program. Participants wanted to control their cancer risk and sought information and resources to prevent PancCa or PancCa related death. Distress related to risk was not described as constant but occurred around salient time points.

Study results begin to describe the lived experience of individuals with PancCa risk. Through this research we have uncovered important variables to further understand, measure, and intervene upon in future research. Distress related to risk was not described as ongoing, but occurred around specific and salient time points that brought risk to the forefront. Individuals with familial PancCa risk may have a unique experience compared to other hereditary cancer syndromes due to the high mortality of the disease and uncertainty related to prevention and early detection outcomes.

• Pancreatic cancer risk
• Patient reported experience
• Qualitative research

• Early Detection of Cancer
• Family
• Genetic Counseling
• Genetic Predisposition to Disease
• Humans
• Pancreatic Neoplasms/diagnosis
• Pancreatic Neoplasms/genetics
• Pancreatic Neoplasms/pathology
• Pancreatic Neoplasms/psychology
• Risk Factors
• Pancreatic Neoplasms