Table 3.

Priorities identified by consumer focus groups

Theme 1	Theme 2	Theme 3	Theme 4
Diagnosis of pancreatic cancer	Research into disease aetiology	Better information about pancreatic cancer	Quality of pancreatic cancer care
Need for earlier diagnosis ….there’s a high priority for early detection and an increased focus on symptoms	What is the role of enzymes and diet …some more research needs to be done in regard to what role enzymes play	More information on signs/symptoms What I really think we need, like breast cancer and ovarian people, is that people have to know what the symptoms are.	Need to research different treatment alternatives I would really like to have the medical system embrace a little bit more of alternative medicine
The non-specific nature of symptoms delays diagnosis I had nothing specific to give them, but I knew something was wrong	Better use pathology specimens I don’t know what they do with the organs that have been removed when they’ve finished their testing, but perhaps they could look a bit further into those	Identify and meet information needs of patients and doctors I told him [the doctor] I had had a Whipple procedure. He had never heard of a Whipple procedure and this is a doctor	Defining good quality care This is what I want—quality care. With all the drugs and the ups and the downs, there’s not a lot of quality there
		More information on treatment options I was at no time given an option because I was so shocked and my type of pancreatic cancer is so different and very rare	The role of psycho-social support I believe that anybody who has been diagnosed with cancer should have their next appointment, as soon as possible, with a counsellor
Develop simpler and faster diagnostic tests––preferably blood tests		All available treatment options need to be presented Some people might even decide to go overseas for treatment and to try different things…There are many other alternatives.	Providing palliative care in rural areas I still don’t really understand what that [palliative care] means and nobody has actually explained that to me…
Screen high-risk individuals …can we research to have a diagnosis earlier, such as some mandatory procedure for people over 50?		How doctors break bad news When the actual first diagnosis was given to us, we had an unfortunate experience as it was rather brutal. My wife was told to get her affairs in order. That’s not treating the individual as a whole person. We just felt very badly let down	Changing doctors’ negative attitudes I’d like to see the medical profession change their attitudes towards pancreatic cancer, as in people can survive and it’s not the end of the world