[Results of pancreatic surgery from the perspective of patients: a cross-sectional study of the support group "Arbeitskreis der Pankreatektomierten e. V."].

Background:  The support group "Arbeitskreis der Pankreatektomierten e. V. (AdP)" was founded in 1976 and is the largest group of individuals affected by pancreatic disease in Germany. Members of the AdP support patients with pancreatic disease. This patient-initiated, cross-sectional study intends to present the results of pancreatic surgery from the perspective of patients.

Methods:  Since March the 3 rd, 2018, members of the AdP received a questionnaire with eleven categories of questions concerning their medical history. This data was gathered in a medical database and analysed.

Results:  625 members were operated upon, with 57.5 % receiving pancreaticoduodenectomy, 15.5 % distal pancreatectomy, 23.2 % total pancreatectomy, and 4.0 % another or unknown operation. 37.9 % were diagnosed with pancreatic cancer, 38.2 % with another type of pancreatic tumour, 25 % with pancreatitis, 4 % with autoimmune pancreatitis and 2.7 % with other rare entities.82 patients of 237 pancreatic cancer patients survived more than 5 years. 24.5 % of the 237 patients reported have a second primary malignancy and 13.9 % have close family members with pancreatic cancer.Weight loss after pancreatic surgery was dependant on the type of operation with the greatest after pancreatectomy (17.8 ± 9.5 kg). The prevalence of diabetes was 54.1 %, the incidence of new onset perioperative diabetes 33.3 %. 91.5 % needed pancreatic enzyme replacement therapy, on average 189 417 IE/day. The reported quality of life was independent from type of surgery received.

Conclusion:  Following complex pancreatic surgery, patients are confronted with daily lifelong challenges. AdP members offering their shared experiences offer meaningful support to newly affected patients. Individuals affected by pancreatic disease could be an important but underutilised resource to studying these diseases.