Patient reported outcomes and quality of life

Patients with pancreatic cancer usually have a very poor prognosis and have a 5-year overall survival rate of less than 9%. Although treatment options often depend on the stage of the disease, most therapies include chemotherapy, radiation, and surgery; all of which come with their associated toxicities. Technological advancements paired with better nutrition and aggressive supportive care have resulted in greater overall survival times and have reduced treatment related toxicities, which in turn have improved patient quality of life. In this chapter, we outline the importance of including quality of life outcomes in clinical trials involving pancreatic cancer patients. We also review the currently available quality of life measures and how they are being incorporated in patient care to help better manage patient symptoms and navigate treatment decisions. We also discuss specific clinical trials and how they have incorporated quality of life measures to assess different treatments regimens. Future trials evaluating biomarker driven treatments should utilize patient reported quality of life measures and compare them to physician reported toxicity measures to assist in determining true efficacy as they rarely have enough power to show significant overall survival differences. Recently, more modern approaches to monitoring quality of life and patient reported symptoms, such as wearable activity trackers, can provide instantaneous data in real time throughout a patients' trajectory of care. Although these new technologies can provide robust amounts of data, they come with their own challenges and risks if they are not properly monitored.