Limited data exist on the changes in the epidemiology of pancreatic cancer and outcomes over the last decades in population-based cohorts. We aimed to compare the incidence of pancreatic cancer, diagnostic, treatment and survival among patients diagnosed over the period 1986-2009.

A retrospective, nationwide, population-based study. All patients diagnosed with pancreatic cancer in Iceland in two periods, 1986-1997 (P1) and 1998-2009 (P2) were identified through the Icelandic Cancer Registry and relevant clinical information obtained from medical records.

A total of 645 patients were identified, 296 in P1 and 349 in P2 (NS). The incidence during P1 was 6.8 per 100,000 inhabitants and 6.2 during P2 (NS). Among biopsy-proven cancers, adenocarcinoma was diagnosed in 89% of the cases in P1 and in P2 in 93% of the cases. Overall 38 (14%) in P1 underwent resection and 22 (7%) in P2 (p < .0004). Patients diagnosed in P2 had longer survival at 6 months (p = .015, log-rank test) and one year (p = .0206) after diagnosis. A total of 4/296 (1.4%) in P1 survived more than 5 years and 3/349 (0.9%) in P2 (NS).

The incidence among patients with pancreatic cancer in Iceland did not show major changes during the last 20 years. Diagnostic approach has changed considerably demonstrating more patients that are not 'resectable'. Survival rate at 6 months and one year has improved over the last two decades whereas the 5-year prognosis has not improved.

Cancer of the pancreas remains one of the deadliest cancer types. Based on the GLOBOCAN 2012 estimates, pancreatic cancer causes more than 331000 deaths per year, ranking as the seventh leading cause of cancer death in both sexes together. Globally, about 338000 people had pancreatic cancer in 2012, making it the 11th most common cancer. The highest incidence and mortality rates of pancreatic cancer are found in developed countries. Trends for pancreatic cancer incidence and mortality varied considerably in the world. A known cause of pancreatic cancer is tobacco smoking. This risk factor is likely to explain some of the international variations and gender differences. The overall five-year survival rate is about 6% (ranges from 2% to 9%), but this vary very small between developed and developing countries. To date, the causes of pancreatic cancer are still insufficiently known, although certain risk factors have been identified, such as smoking, obesity, genetics, diabetes, diet, inactivity. There are no current screening recommendations for pancreatic cancer, so primary prevention is of utmost importance. A better understanding of the etiology and identifying the risk factors is essential for the primary prevention of this disease.

The purpose of this study was to assess the overall burden of pancreatic cancer in Europe, with a focus on survival time in a real-world setting, and the overall healthy life lost to the disease.

Real-world data were retrieved from peer-reviewed, observational studies identified by an electronic search. We performed two de novo analyses: a proportional shortfall analysis to quantify the proportion of healthy life lost to pancreatic cancer and an estimation of the aggregate life-years lost annually in Europe.

Ninety-one studies were included. The median, age-standardised incidence of pancreatic cancer per 100,000 was 7.6 in men and 4.9 in women. Overall median survival from diagnosis was 4.6 months; median survival was 2.8-5.7 months in patients with metastatic disease. The proportional shortfall analysis showed that pancreatic cancer results in a 98 % loss of healthy life, with a life expectancy at diagnosis of 4.6 months compared to 15.1 years for an age-matched healthy population. Annually, 610,000-915,000 quality-adjusted life-years (QALYs) are lost to pancreatic cancer in Europe. Patients had significantly lower scores on validated health-related quality of life instruments versus population norms.

To the best of our knowledge, this is the first study to systematically review real-world overall survival and patient outcomes of pancreatic cancer patients in Europe outside the context of clinical trials. Our findings confirm the poor prognosis and short survival reported by national studies. Pancreatic cancer is a substantial burden in Europe, with nearly a million aggregate life-years lost annually and almost complete loss of healthy life in affected individuals.

Upper gastrointestinal cancer is associated with a poor prognosis. The multidimensional problems of incurable patients require close monitoring and frequent support, which cannot sufficiently be provided during conventional one to two month follow-up visits to the outpatient clinic.

To compare nurse-led follow-up at home with conventional medical follow-up in the outpatient clinic for patients with incurable primary or recurrent esophageal, pancreatic, or hepatobiliary cancer.

Patients were randomized to nurse-led follow-up at home or conventional medical follow-up in the outpatient clinic. Outcome parameters were quality of life (QoL), patient satisfaction, and health care consumption, measured by different questionnaires at one and a half and four months after randomization. As well, cost analyses were done for both follow-up strategies in the first four months.

In total, 138 patients were randomized, of which 66 (48%) were evaluable. At baseline, both groups were similar with respect to clinical and sociodemographic characteristics and health-related QoL. Patients in the nurse-led follow-up group were significantly more satisfied with the visits, whereas QoL and health care consumption within the first four months were comparable between the two groups. Nurse-led follow-up was less expensive than conventional medical follow-up. However, the total costs for the first four months of follow-up in this study were higher in the nurse-led follow-up group because of a higher frequency of visits.

The results suggest that conventional medical follow-up is interchangeable with nurse-led follow-up. A cost utility study is necessary to determine the preferred frequency and duration of the home visits.

Pancreatic cancer (PC) is associated with a dismal prognosis. Few studies have examined characteristics and outcome in an unselected population-based cohort of PC patients. Therefore, we investigated patient baseline characteristics, therapy choices and survival in a complete cohort of patients with PC.

All cases diagnosed with PC between 2007 and 2009 in the Region of Southern Denmark (pop: 1,200,000) were prospectively registered. Patient characteristics including performance status, information about haematology, liver function and therapy were retrieved from patient charts, and used to compare differently treated and untreated groups.

Six-hundred-eighteen cases were registered as PC; 25 of which did not have adenocarcinomas. Patients were divided in 3 clinical groups based on initial therapy; group 1: resection (n=64), group 2: chemotherapy or chemo-radiotherapy (n=191), group 3: no tumour directed therapy (n=324). Median survival (mOS) (95% confidence interval (CI)) in the three groups was 25.7 months (18-30), 8.1 months (7.0-9.5) and 1.1 months (1.0-1.3) respectively. Three percent of patients participated in clinical trials. An evaluation of baseline factors prognostic value suggested that treated patients differed significantly from non-treated patients.

This study reports survival in treated groups comparable to results obtained from clinical trials with highly selected patients. However the majority of patients with PC do not receive cancer directed therapy. This group was significantly different in several baseline factors, which could suggest a different biology. Improving the outcome of PC patients calls for research into the large group of untreated patients, as only a minority of patients receive cancer directed therapy.