Pancreatic cancer is difficult to diagnose, and many people report that it took a long time to receive their diagnosis. This delay can be distressing, and might also influence how long people live after their diagnosis.
The Pancreatic Cancer Pathways to Diagnosis Study (the Pathways Study) aims to talk to people who have been diagnosed with pancreatic cancer to gain a detailed understanding of the ways in which Australians reach their diagnosis. This will help us to develop strategies to help future patients receive their diagnosis quickly.
The specific aims are to:
- Identify the early signs and symptoms of pancreatic cancer.
- Understand the journey from first symptoms to diagnosis, including factors such as the number of visits to the general practitioner and the number of investigations.
- Determine patient and health-system characteristics that might influence how quickly people are diagnosed.
- Evaluate the consequences of diagnostic delay in Australia, including the mental and financial impact, and overall disease outcomes.
Pathways Study - Discovering the pathways to diagnosis
What does participation involve?
- Completing a questionnaire, on a paper form or online. The questionnaire asks about factors such as education and lifestyle, and also includes an assessment of how people have adjusted to their diagnosis of pancreatic cancer.
- Taking part in an interview, either by telephone or using zoom videoconferencing. In the interview we will ask detailed information about symptoms, and the pathway to diagnosis.
Participants will be given the option of allowing the research team to access their medical records, but this is not required in order to take part in the Pathways Study.
Who can take part?
If you have been diagnosed with pancreatic cancer within the past 6 months you are eligible to take part. If you would like to take part, but you would prefer a family member or friend to answer questions on your behalf, that is also OK.
Are there any benefits of taking part?
There are no direct benefits for participants in the Pathways Study, although some people appreciate the opportunity to tell their story and share their experiences. There is also value in feeling that you are helping other people in the future.
There is no payment for taking part in the Pathways Study, but we will offer you a $20 eVoucher as a small thank you for taking the time to help this research.
Are there any harms of taking part?
This project involves completing one questionnaire and taking part in one interview, so the harms are minimal. It is possible that some people might find talking about their journey to diagnosis distressing. We will make sure that participants are aware of support services and, if needed and with permission, we will let participants’ general practitioners know of their need for support.
Who are the Pathways Study investigators?
The study is being led by Professor Rachel Neale at the QIMR Berghofer Medical Research Institute.
There are doctors and scientists participating from Australia and New Zealand.