Priority Rankings of Patient-Reported Outcomes for Pancreatic Ductal Adenocarcinoma: A Comparison of Patient and Physician Perspectives

Abstract

Background: Pancreatic ductal adenocarcinoma (PDAC) is associated with high symptom burden. However, treatment decisions currently depend heavily on physician interpretation of clinical parameters and may not consider patients’ health preferences. The NIH Patient-Reported Outcomes Measurement Information System (PROMIS) initiative standardized a set of patient-reported outcomes for use in chronic diseases. This study identifies preference rankings among patients with PDAC and physicians for PROMIS domains and compares the priorities of patients and their providers. Methods: We condensed the 96 NIH PROMIS adult domains into 31 domains and created a Maximum Difference Scaling questionnaire. Domain preference scores were generated from the responses of patients with PDAC and physicians, which were compared using Maximum Difference Scaling software across demographic and clinical variables. Results: Participants included 135 patients with PDAC (53% male; median age, 68 years) and 54 physicians (76% male; median years of experience, 10). Patients selected physical functioning (PF) as their top priority, whereas physicians identified pain as most important. PF, ability to perform activities of daily living, and symptom management were within the top 5 domains for both patients and physicians, and varied only slightly across age, sex, and ethnicity. However, several domains were ranked significantly higher by patients than by physicians, including but not limited to PF; ability to do things for yourself, family, and friends; ability to interact with others to obtain help; and sleep quality. Physicians ranked pain, anxiety, and depression higher than patients did. Conclusions: Our findings suggest that patients with PDAC value PF and engaging in daily and social activities the most, whereas physicians prioritize symptoms such as pain. Patient-reported outcomes need to become more integrated into PDAC care and research to better identify unmet patient needs, inform treatment decisions, and develop therapies that address outcomes valued by patients.

Phase I trial of Bermekimab with nanoliposomal irinotecan and 5-fluorouracil/folinic acid in advanced pancreatic ductal adenocarcinoma

“…However, these measures were easy to implement in our outpatient clinic and the information gathered could help evaluate the effects of our interventions—intended or otherwise. We have previously noted that physical function and the autonomy to perform daily and social activities is highly prioritized in pancreatic cancer patients 60 . Further development of our measures for patient performance are therefore needed.…”

Feasibility and efficacy of enteral tube feeding on weight stability, lean body mass, and patient‐reported outcomes in pancreatic cancer cachexia

“…[16][17][18][19] We have also shown that physical function was ranked as highest among NIH PROMIS PROs in a survey of pancreatic cancer patients and physicians. 20 Thus, the use of nutritional support may provide additional benefit for the overall quality of life and physical function in this group of patients. These findings should be replicated in future trials and further explored in the presence of a control group.…”

Living with Metastatic Cancer: A Roadmap for Future Research

“…Data from metavivors come primarily from subgroup analyses of adverse events (AEs) reported on clinical trials. Predisposing factors for PROs represent a significant knowledge gap, as it is well-established that clinician-rated AEs underestimate the frequency and severity of patient-reported symptoms by as much as 50% [ 28 , 29 , 30 , 31 ]. Nevertheless, available data regarding subgroup differences in AEs suggest potential avenues for PRO research.…”