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Patient-Reported Outcomes and Quality of Life in Pancreatic Cancer

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Textbook of Pancreatic Cancer

Abstract

Since early stages are mostly asymptomatic, pancreatic cancer is often advanced by the time of diagnosis, which is associated with a poor prognosis and a very low 5-year-survival rate. Patients suffer from a range of debilitating symptoms, including pain, gastrointestinal symptoms, weight and appetite loss, jaundice and nausea and vomiting. Available treatment options have only limited capacities to prolong patients’ survival, which is why the patients’ quality of life is of utmost importance when it comes to treatment decisions and evaluating the impact of medical interventions. The gold standard to assess the patients’ quality of life is to capture their perspective of their health status by means of patient-reported outcomes. Those are self-reported statements, which come directly from the patient and are usually assessed using validated questionnaires. To measure the quality of life of pancreatic cancer patients, the most commonly used questionnaires are the EORTC-QLQ C30 and the diagnosis specific module QLQ-PAN26 and the FACT-Hep. Integrating routine assessments of quality of life offers several benefits like improved communication between health care professionals and patients, better treatment continuity or facilitation of patient-centred and tailored disease management. However, the implementation of quality of life assessments into the daily clinical routine remains a challenge. Software systems to assess, process and store patients’ quality of life electronically is one major advance new computer technology added to this field. Linking patients’ scores with sound medical information, contact details of health services and self-management advice can further foster the engagement of patients in their own health care. An increased research focus on making quality of life data actionable in routine care will help to promote their use for shared-decision making and individualized treatment.

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Acknowledgments

Icons used within Fig. 75.4 made by Freepik from www.flaticon.com.

Conflicts of interest: Bernhard Holzner holds intellectual property rights of the CHES software. The other authors do not state any conflict of interest.

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Wintner, L.M., Sztankay, M., Holzner, B. (2021). Patient-Reported Outcomes and Quality of Life in Pancreatic Cancer. In: Søreide, K., Stättner, S. (eds) Textbook of Pancreatic Cancer. Springer, Cham. https://doi.org/10.1007/978-3-030-53786-9_75

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