Prostate cancer is the most commonly diagnosed cancer in Australian men, with over 18,000 new cases each year. Men in Australia have a 1 in 5 chance of being diagnosed before the age of 85 and a 1 in 25 chance of dying from prostate cancer. This makes prostate cancer more common than any other type of cancer and more lethal than most other cancer types. Furthermore, the Australian Institute of Health and Welfare predict that incidence will increase by 50% by 2020. The high incidence, associated mortality and growing population burden make prostate cancer a health care priority in Australia. Prostate cancer treatments are varied and include: deferred treatment (active surveillance), watchful waiting, radical prostatectomy, radiotherapy or androgen deprivation therapy (ADT). The South Australian Prostate Cancer Clinical Outcome Collaborative (SA-PCCOC) is tracking men with prostate cancer across the state in order to compare outcomes of each treatment type. This research will provide an evidence base to help select the best treatment - in terms of survival and quality of life - for each man diagnosed with prostate cancer.
What we aim to achieve
US clinical cancer registries have played a very important role in improving treatment for prostate cancer, but not yet for Australian men. Our prostate cancer clinical data repository set up in South Australia in 1998 covers all prostate cancers treated in SA public hospitals, and most from private hospitals and practitioners. This gives us a powerful research tool to understand the clinical course of prostate cancer among South Australian men and identify treatment approaches, critical points to intervene and monitor the quality of treatment care amongst SA prostate cancer patients. This type of research is called clinical outcomes research and requires expertise in urology, epidemiology, biostatistics, data management and data acquisition. It also requires a team of researchers and a large number of patients followed over a considerable interval, so it takes a long time for data repositories to mature to the point they can yield useful results.
We have now reached and exceeded that point with the SA-PCCOC database, now having over 10,000 patients enrolled from the three major public hospitals (QEH, RAH,FMC/RGH) treating prostate cancer and the major private practices and hospitals. A test called PSA (prostate specific antigen) is the way progress of the cancer is followed in these patients. We now have 70,000 PSA results for our patients to follow the progress of their care. We also collect patient reported outcomes (PRO) measures– relating to their symptoms, side effects and quality of life.
Where a clinician has no feedback on his own outcomes, he does not have the data he needs to improve them. Our aim is to provide every clinician treating men with prostate cancer in SA, access to his own data on his own patients via an internet portal
This research will ensure that each patient with prostate cancer receives the best treatment possible in terms of survival and quality of life.
Our next steps and milestones
Infrastructure support for SA-PCCOC will be used to implement automated and efficient data collection tools to enable complete population coverage.
Large, high quality registries such as SA-PCCOC require considerable expense to prospectively, collect and maintain longitudinal data completeness. Manual collection in particular is very time consuming and costly.
At SA-PCCOC we are progressively collecting more of our data electronically from the primary sources, and are leaders in this field. Electronic data collection is more efficient and less costly thus ensuring longer term financial viability by reducing basic collection overheads.
More over, automated file dumps at prescribed time intervals, means our data will be updated more quickly and at more regular intervals, and thus reduce the time delay between reporting and entry to our database. Accordingly, the data in SA-PCCOC will more closely reflect the actual “real time” data and overall characteristics of the population.
Additionally as stated above, our aim is to provide every clinician treating men with prostate cancer in SA, a “report card” on his/her own data on his/her own patients which can be accessed electronically.
What motivates me
Research is the main way forward when it comes to improving the treatments we offer to patients with cancer.
Laboratory research often takes many, many years to translate into clinical practice.
Clinical outcomes research, particularly using high quality registries such as ours, can lead to patient care improvements in much shorter time frames, particularly once the registry is established and mature, as is the case with SA-PCCOC.
It’s been said…
SCIENCE tells us what we CAN DO
GUIDELINES tell us what we SHOULD DO
REGISTRIES tell us what we ARE ACTUALLY DOING !
Unlike the majority of treatment recommendations, developed from data sets which come from large, highly specialised, single centre, “ivory tower” academic institutions in the United States or Europe, SA-PCCOC provides support to the decision making processes of local physicians, policy makers and patients through the study of clinical, economic, and health related Quality of Life outcomes in men with prostate cancer treated in real world community settings, and more importantly, results specifically relevant to Australian prostate cancer patients and their carers.
Outcomes research can have an immediate impact, by alerting clinical staff where results are not as good as expected, or model those that exceed the average. It can also be instrumental in speeding up the translation of new treatment approaches into clinical practice and can potentially improve outcomes in a much shorter time frame compared to laboratory research.
My message to supporters
We are very thankful for the contribution of the Beat Cancer Project towards SA-PCCOC. This funding helps to track the outcomes of men with prostate cancer across SA and to develop clinical tools ensuring that newly diagnosed men receive the best treatment possible.