Symptoms and life changes after total pancreatectomy : a qualitative study

• BACKGROUND: Total pancreatectomy (TP) is a major surgical procedure that involves lifelong exocrine and endocrine pancreatic insufficiency. Qualitative evidence is sparse regarding patients' experiences after the operation. The aim of this study was to explore patients' experiences of symptoms that occur after TP and how these symptoms affect their health and life situations.METHODS: A qualitative design with prospective consecutive sampling and an inductive thematic analysis was used. Semistructured interviews were postoperatively performed at 6-9 months with 20 patients undergoing TP in two university hospitals in Sweden.RESULTS: Two main themes emerged from the analysis: "Changes in everyday life" and "Psychological journey". Patients experienced symptoms related to diabetes as the major life change after the operation, and they were also limited by symptoms of exocrine insufficiency, difficulties with food intake and physical weakness. In the psychological journey that patients underwent, the support received from family, friends and the health care system was important. Moreover, patients experienced a general need for more extensive information, especially regarding diabetes.CONCLUSION: Patients experience a lack of sufficient support and education after TP, particularly concerning their diabetes. Further efforts should be undertaken to improve information and the organization of diabetes care for this patient group.

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