Navigating pain and appetite challenges in palliative care for pancreatic cancer: insights from a national, longitudinal consecutive cohort study

Purpose: Pancreatic cancer poses significant challenges in symptom management. Many people have intractable pain and anorexia which is often not amenable to current available options for palliation. This study aims to outline the longitudinal patterns and assess the burden of distress related to pain and appetite experienced by individuals with pancreatic cancer in people referred to Australian palliative care services. Methods: Consecutive national cohort study using point-of-care data on symptom distress in people referred to specialist palliative care services. Results: From 2013 to 2022, information from 20,558 care episodes involving 15,536 people with pancreatic cancer referred to 203 palliative care services nationally were included. Similar numbers of people were admitted to inpatient and community services, with 69% and 60% reporting distress due to pain and appetite, respectively. Distress extended to sleeping (79%, 82%), nausea (83%, 85%), bowels (80%, 83%), breathing (70%, 77%) and fatigue (77%, 77%) for pain and appetite, respectively. Strongest associations were with psychological/spiritual issues (inpatient OR 1.78, 95% CI 1.66–1.90) and pain severity (community OR 1.51, 95% CI 1.42–1.60) for appetite-related distress and pain severity (inpatient OR 1.60, 95% CI 1.49–1.72; community OR 1.35, 95% CI 1.27–1.44) for pain distress. Trends within the cohort revealed increased mild appetite-related distress (+ 10%) and decreased moderate (- 22%) and severe (- 11%) distress, with similar trends for pain. Conclusion: This study underscores prevalent distress in people with pancreatic cancer in Australian palliative care, highlighting the need for optimised referrals and strategies targeting pain severity, appetite-related concerns and psychological and spiritual aspects for improved care outcomes.