Understanding pain and appetite distress in pancreatic cancer: Findings from a national palliative care study

An article written by Dr Mariana Sousa, Chancellor's Postdoctoral Research Fellow IMPACCT, University of Technology Sydney

Caring for someone with pancreatic cancer who has palliative care needs can be incredibly challenging. Among the many difficulties, pain and loss of appetite are often the most persistent and distressing symptoms for both patients and their families. But how common are these issues, and what can we learn from people’s lived experiences in palliative care?

We explored these questions in a large national study involving over 15,000 people with pancreatic cancer referred to Australian palliative care services between 2013 and 2022. [1] Drawing on data from over 20,000 episodes of care, across both inpatient and community settings, we gained valuable insights into how symptom-related distress is experienced, and how it changes over time.

Pain and appetite: more than physical symptoms

Our findings reinforce what many palliative care clinicians already observe in practice: distress related to pain and appetite loss is highly prevalent. Nearly 70% of patients reported pain-related distress, while 60% experienced distress related to appetite, Importantly, these symptoms rarely occur in isolation. Those with appetite-related distress were also more likely to report issues with sleep, fatigue, nausea, bowel function, and breathlessness. Psychological and spiritual distress was also closely associated, particularly in inpatient settings, where appetite-related distress was nearly twice as likely in those experiencing emotional or spiritual challenges.

Shifting patterns over time

One encouraging trend did emerge from the data. Over the ten-year study period, we observed a reduction in severe distress levels. For example, moderate appetite-related distress decreased by 22% and severe distress by 11%, with similar patterns observed for pain. This may indicate that people are being referred earlier for palliative care or that care strategies are evolving to meet patient needs. At the same time, however, mild distress became more common. Nonetheless, the fact remains: distress is high, persistent, and multi-dimensional for people with pancreatic cancer, and we need to do more.

Where do we go from here?

This study highlights the continued need for timely and integrated palliative care for people with pancreatic cancer. Symptom distress, especially related to pain and appetite, remains a significant burden, often intertwined with psychological, spiritual, and functional concerns. Addressing these symptoms effectively requires more than just clinical management. It calls for a comprehensive approach that supports the whole person and their family. For healthcare professionals, service providers, and policymakers, the message is clear: we must continue to strengthen early referral pathways, promote multidisciplinary care, and adapt our services based on patient-centred data to ensure we are truly meeting the needs of this vulnerable group.

Reference:

1. Sousa MS, Garcia MV, Blanchard M, Daveson B, Currow D, Khan NN, et al. Navigating pain and appetite challenges in palliative care for pancreatic cancer: Insights from a national, longitudinal consecutive cohort study. Support Care Cancer. 2025;33(5):365.

Author

Dr Mariana Sousa MD, PhD

Chancellor's Postdoctoral Research Fellow

IMPACCT, University of Technology Sydney