Understanding the Experiences of Patients With Pancreatic Cancer: Quantitative Analysis of the Pancreatic Cancer Action Network Patient Registry.

Background: The Pancreatic Cancer Action Network (PanCAN) established its Patient Registry to gather real-world data from patients with pancreatic cancer and their caregivers, related to their diagnosis, symptoms and symptom management, treatments, and more. Results from version 2 of the PanCAN Registry are presented here. Objective: We sought to gather and evaluate patient-reported outcomes data inputted into the PanCAN Patient Registry from December 2020 to January 2024. Statistical analyses were used to identify findings from a relatively small sample size (271 participants, as defined by people who filled out the Basics survey of the PanCAN Registry). Methods: Participation in the PanCAN Patient Registry was voluntary, and participants filled out an electronic consent form before joining the registry. Participants were identified through the PanCAN Patient Services Help Line or navigated to the registry directly via the PanCAN website. Data analysis took place via bivariate analysis using the chi-square test for categorical variables. Statistical significance was defined as a P value of <.05, with P values between .05 and .1 considered marginally significant, and P values >.1 considered insignificant. Results: Pain was reported by 186 out of the 207 (89.9%) PanCAN Patient Registry participants who filled out the pain-related questions in the General Assessment survey. We observed a marginally significant (P=.06) difference between the reporting of pain by patients aged younger than 65 years (86/92, 93.5%) and those aged 65 years or older (66/78, 84.6%). Depression was also a common condition experienced by patients with pancreatic cancer, with 64/103 (62.1%) indicating that they were experiencing or had experienced depression during the course of their illness. A trend suggested that depression was more frequently reported among the subset of patients who also reported pain (53/80, 66.3%) compared with those who did not report pain (5/13, 38.5%; P=.07). Conclusions: The use of patient-reported outcomes and real-world data for patients with pancreatic cancer has the potential to have direct impact on clinical practice. Through a relatively small sampling of patients, trends were identified that suggest a higher reporting of pain amongst patients in a younger age group as well as concurrence of pain and depression. These findings underscore the importance of a multidisciplinary team of health care professionals addressing patients' needs beyond the treatment of their cancer.