These are startling statistics: in 2016 there will be 3123 Australians diagnosed with pancreatic cancer and 2823 deaths from the disease. Only one in five survives to a year after diagnosis and the five-year survival rate is 6 per cent. It is Australia's 10th most common cancer and yet there has been little progress in improving survival over the last 15 years. This incidence is increasing, and not just because we have an ageing population or have improved diagnosis. More Australians are getting pancreatic cancer, and dying from it, and we don't know why.
A study published last month in the Medical Journal of Australia (MJA) revealed that, in Queensland and New South Wales, a review of pancreatic cancer patient care reveals that quality of care, and survival rate, is poorer in rural and socioeconomically disadvantaged areas. Put simply, a diagnosis of pancreatic cancer is not good news. Even less so if you don't live in a nice metropolitan suburb.
![Cancer registries work on a very simple premise: if we don't know what's not working, how can we fix it and make it better.](/web/20161206190305im_/http://www.theage.com.au/content/dam/images/g/r/4/5/i/5/image.related.articleLeadwide.620x349.gt3wy9.png/1480902405804.jpg)
At the weekend the National Health and Medical Research Council announced almost half a billion dollars to medical researchers nationally though their project grants, including a $1.7 million project grant to the development of a national pancreatic cancer registry which, with seed funding from the federal Department of Health and PanCare, will collect data on how Australians diagnosed with pancreatic cancer fare in the health system.
A diagnosis of pancreatic cancer is often greeted with a largely nihilistic response from doctors. The MJA study, for instance, found that too few patients on diagnosis are offered tailored pain relief and nutritional support. Pancreatic cancer is particularly insidious as it makes the patient feel nauseous and in constant pain. Alleviating these symptoms make for a stronger, and likely longer living, person.
What we have learned from the recently published MJA study is that – across Queensland and New South Wales at least – only one-third of patients have their treatment discussed by a multidisciplinary team of specialists including surgeons, radiologists, oncologists, gastroenterologists, specialist nurses and dieticians.
So much is unknown about this disease. How many more people would live past the 12-month mark if they had access to a multidisciplinary team, which is considered globally as best practice? What if more people were offered access to clinical trials? The MJA study found that only 7 per cent of patients in NSW were being given this alternative.
The advantage of a national pancreatic cancer registry is more than being able to highlight where the system lets its pancreatic cancer patients down. It allows hospitals and clinicians to benchmark their cases against those who are achieving good results. The registry will collate ongoing national figures for stage at presentation, models of care, quality of care and – importantly – will collect information from the patients and their families on whether their needs have been met.
Australia is a world leader in population-based cancer registries. The Victorian prostate cancer registry started in 2009 and has been active in providing statistics on care and outcome back to the state's hospitals.
The registry has revealed up to a two-fold variation in management of prostate cancer across regions of Victoria. Importantly, the registry has led to a statewide reduction in surgical intervention in patients at low risk of their disease spreading. This translates into actual dollars, many of them, being saved in the healthcare system. In the middle of this year a national prostate cancer registry was launched, thanks in large part to funding from Movember.
Cancer registries work on a very simple premise: if we don't know what's not working, how can we fix it and make it better.
The NHMRC funding for a national pancreatic cancer registry is great news on so many fronts: costs, quality of life for patients and families and outcomes. And if it can change the overarching response from clinicians, when they diagnose a patient with pancreatic cancer, that this is not necessarily a death sentence, that there is much to offer the patient other than bad news – then the registry will have achieved a great result.
Sue Evans is associate professor at Monash University's department of epidemiology and preventive medicine.
0 comments
New User? Sign up