Managing recurrent, residual or metastatic disease

Evidence summary and stakeholder input

The following is a summary of the findings from the evidence gathering activities and stakeholder consultations undertaken to inform development of the Roadmap. For more information on the development of the Roadmap see the About page.

Last updated: 31 March 2022

Evidence summary

People with pancreatic cancer who present with recurrent, residual or metastatic disease should be managed by a multidisciplinary team (MDT) and offered timely referral to appropriate physical, practical and emotional support.

An analysis of the Upper Gastrointestinal Cancer Registry (UGICR) found that over half of all people with pancreatic cancer were diagnosed with metastatic disease. Only 41% of these people were presented to a multidisciplinary team meeting (MDM) and very few received treatment. 

Palliative care input is associated with better supportive care and quality of life in people with advanced cancer including pancreatic cancer.¹ Early integration of specialist palliative care is acceptable, feasible, and results in better quality of life for people with pancreatic cancer.²𝄒³ Early integration of palliative care needs to focus on the specific needs of patients and their carers, and opportunities exist to use validated needs assessment tools to identify unmet palliative care needs⁴ and provide concurrent cancer care and palliative care close to a person’s place of residence.⁵𝄒⁶

Data from the UGICR identified that 94% of people with metastatic disease were referred to palliative care. Those that were referred to palliative care were younger, of higher socioeconomic status, and were more likely from regional or remote areas. Current UGICR data were unable to identify the proportion of patients with metastatic disease being palliated, the therapies received for recurrent or residual disease, or the timing of referral for palliative care. 

Inclusion of palliative care physicians and supportive care staff in MDTs/ MDMs, and improving referral pathways to these services, have also been identified as important aspects of pancreatic cancer care.

Stakeholder input

The following is a summary of the findings from the stakeholder consultations undertaken to inform development of the Roadmap. For more information on the development of the Roadmap see the About page. 

Remoteness and limited access to oncology specialists were raised by Indigenous stakeholders noting that access to treatment for managing recurrent, residual or metastatic disease may be governed by availability, not best-practice care.

The need for palliative care specialists to be part of the multidisciplinary pancreatic care team was also raised by stakeholders.

Stakeholders highlighted the importance of timely discussion of goals of care with patients across the care continuum, and early referral to palliative care, noting the variation in availability and timing of palliative care, gaps in available palliative care workforce, and the need to strengthen the involvement of palliative care trained nurses and GPs in the provision of palliative care, particularly in rural areas.

Early involvement of palliative care concurrent with active treatment was also supported by stakeholders, along with the provision of culturally appropriate palliative care delivered as close to home as possible, and consideration of unique end-of-life needs for Aboriginal and Torres Strait Islander people and other priority population groups.

The development of palliative care options that are able to accommodate the cultural, linguistic, and spiritual requirements of CALD communities and individuals was raised by stakeholders.

A limited understanding among Indigenous communities and health professionals about the role of palliative care was highlighted. Opportunities to enhance understanding by Aboriginal and Torres Strait Islander people of the benefits of palliative care, and the engagement and education of CALD communities about the value of palliative care beyond its application at the very end-of-life were raised.

The importance of patient management and place of care whilst awaiting palliative care was also raised along with the importance of provision of information to patients and families to help plan for what to expect at end-of-life. Dedicated palliative care spaces for Aboriginal and Torres Strait Islander people in mainstream hospital and cancer care settings, and the importance of palliative care being extended beyond a patient’s death, to provide support for grieving Aboriginal and Torres Strait Islander families and carers was also highlighted.

The need to develop better support frameworks for palliative and end-of-life care and integration of palliative care services as a standard part of the care pathway was raised, with stakeholders supporting the development of an agreed national palliative care pathway for pancreatic cancer. The national pathway should outline and drive strategies to facilitate processes and outcomes that are critical for pancreatic cancer.

Key priority areas, strategies and activities 

Each key priority area has supporting strategies and associated activities for implementation in the short, medium or long term that have been identified to achieve the priority.