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
Signs, symptoms and presentation
Evidence summary
The signs and symptoms associated with pancreatic cancer can be non-specific and common to a range of benign and malignant conditions, and include jaundice, back or upper abdominal pain, weight loss, loss of appetite, nausea and vomiting, fatigue and new onset diabetes. However, few distinctive signs or symptoms appear until the cancer is well advanced, making early detection difficult. As a result, 80-85% of people presenting with signs and symptoms of pancreatic cancer have locally advanced or metastatic disease.¹
Stakeholder input
Limited community and health professional awareness about pancreatic cancer signs and symptoms was raised across stakeholder engagement initiatives, and the importance of raising public awareness and increasing knowledge and education for health professionals was highlighted.
The generic nature of symptoms, the masking of symptoms by other co-morbidities, language barriers, and low levels of health literacy can all contribute to a reluctance of some consumers to present to their general practitioner (GP) even when symptoms are acute.
This potential reluctance needs to be addressed through more effective community education and engagement. Tailored community-led campaigns developed and delivered in partnership with community organisations, can support the provision of culturally appropriate information to increase awareness of signs and symptoms among CALD and Aboriginal and Torres Strait Islander population groups, support self-determination, and increase confidence and capacity to engage with health services, leading to the earlier presentation and detection of pancreatic cancer.
Strong partnerships between community members and culturally safe health services can also create a safe environment for people to present in a more timely manner, and models of community-based care navigation were also raised as enablers to presentation, investigations and referral.
In addition, developing and trialling awareness messages and education activities with GPs including those working in Aboriginal Community Controlled Health Organisations (ACCHOs) and using tools to help GPs consider symptoms of pancreatic cancer can also support early detection.
Assessment and initial referral
Evidence summary
While a range of guidance exists around managing initial investigation and referral, strengthening this guidance and providing general practitioners (GPs) with streamlined processes to support timely investigation and referral can assist to address potential diagnostic delays.
Data from the Upper Gastrointestinal Cancer Registry (UGICR) indicate that 97% of patients are referred to a specialist (surgeon, medical oncologist, or radiation oncologist); however age-related variations were observed, with only 11.2% aged 85 or over referred to a specialist. Data on timeframes for referral were not available.
Opportunities exist to ensure that GPs facilitate timely referral to high-volume pancreatic cancer centres, for further assessment and treatment planning if pancreatic cancer is suspected.
Stakeholder input
Limited health professional awareness about appropriate investigation and referral pathways for pancreatic cancer was raised. Disparities in availability of diagnostic tests and specialist referral, and the importance of equity of access to diagnostic tests, referral pathways and subsequent treatment, especially for those in rural and regional areas, were highlighted.
Implementation of decision support tools to prompt timely referral for diagnostic tests based on specific symptoms and combinations of symptoms, was supported.
To assist with culturally competent and effective care, it was also considered beneficial for referring GPs to provide more comprehensive information in the referral process, such as information on the cultural background of the patient, the social context specific to cancer management, as well as other background information such as duration of residence in Australia.
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.
