PanCAN-authored Paper Explores Pain and Depression in Patients with Pancreatic Cancer

A new PanCAN-authored paper uses feedback provided by patients with pancreatic cancer to identify trends in reporting pain.

Among the key findings: Pain is more likely to be reported by pancreatic cancer patients who are younger than 65. And patients experiencing pain are also more likely to report feeling depressed.

It's important to listen to patients and learn from their experiences, said co-first author and PanCAN Director of Scientific Research and Communication Allison Rosenzweig, PhD.

"We can improve quality of life and outcomes by using findings like these to improve the care patients receive," she said. "I'm grateful to the team for all of their work on this publication and to the patients and families who graciously offered their insights."

The paper, published in the Journal of Participatory Medicine, analyzed responses from 272 patients in PanCAN's Patient Registry, an online resource that invited patients with pancreatic cancer or their caregivers to fill out surveys and share their experiences. Participation was voluntary and required informed consent. For this paper, the research team looked at responses to questions related to pain and depression. Key findings include:

• Nearly 90% of respondents reported pain within the previous seven days. There was no difference based on sex; approximately 90% of both male and female respondents reported pain.
• In those aged younger than 65 years, 93.5% reported experiencing some pain over the previous seven days. A lower percentage, 84.6%, of individuals aged 65 years and above reported experiencing pain.
• Depression was common for patients with pancreatic cancer, with 62.1% stating that they were experiencing or had experienced depression during the course of their illness.
• Depression was more frequently reported among patients who also reported pain (66.3%) compared with those who did not report pain.

Taken together, these patterns led the authors to highlight the importance of a "multidisciplinary team of healthcare professionals addressing patients' needs beyond the treatment of their cancer."

"Patients are telling us what they are experiencing," Rosenzweig said. "Pain and depression have real consequences. Healthcare systems can use this information to create programs to support patients and meet their needs as they go through treatment for pancreatic cancer."

The authors recommend that healthcare providers pay particular attention to discussing and managing pain experienced by patients who have a younger onset of pancreatic cancer. Also, since patients in an older age group may still experience pain but not report it as frequently as their younger counterparts, they also suggest that all patients with pancreatic cancer have access to specialized pain management.

Given the co-occurrence of pain and depression, and the long-established link between pancreatic cancer and depression, the paper points to mental health support as critical for all patients.

Part of PanCAN's aim with the Registry and related publications is to help the pancreatic cancer community understand the "Right Track" for any patient with pancreatic cancer, which includes the right team, right tests and right treatment, and encourages patients to share data at every opportunity. This framework can help inform decision-making while navigating this challenging diagnosis.

Next up: PanCAN plans to look at data from the Registry related to patients of diverse racial and ethnic backgrounds in order to learn more about individual patient experiences and any barriers to high quality and equitable care. The data from the Patient Registry will also be made available to the broader research community to analyze and expand upon the findings.

Authors on the paper include: PanCAN Director of Scientific Research and Communications Allison Rosenzweig; PanCAN Patient Services Manager Sydney Rathjens; PanCAN Director of Data Science and Informatics Kawther Abdilleh; PanCAN Senior Director of Data and Analytics Dennis Ladnier; PanCAN Senior Director of Patient Services Fatima Zelada-Arenas; PanCAN Chief Business Officer Sudheer Doss and PanCAN Chief Science Advisor Lynn Matrisian.