Registries are a very important part of our health sector. A good national registry can reveal real-life patterns of diagnosis, treatments and outcomes. Registries can also detect variation, where care might be sub-optimal. Funded by The Movember Foundation, the Prostate Cancer Outcomes Registry - Australia and New Zealand (PCOR-ANZ) now celebrates its 4th year of operation. This week’s blog summarises the annual report of this registry.
PCOR-ANZ stands for Prostate Cancer Outcomes Registry - Australia and New Zealand. This valuable initiative is funded by The Movember Foundation and run through Monash University. Numerous state governments, research institutes, hospitals and pharmaceutical companies have also contributed to the costs of data collection. The PCOR-ANZ systematically collects clinical and patient-reported outcomes data. Collecting this data allows them to report on what type of men are getting prostate cancer, what treatments they have and how they are coping during their prostate cancer journey.
Registries in South Australia and Victoria have been collecting data on prostate cancer outcomes for about 10 years. The four-year old PCOR-ANZ combines the previous state-based registries into a national registry together with New Zealand data. Not all men diagnosed in Australia are covered by the registry yet. The PCOR-ANZ is growing in size by gradually incorporating more and more health providers. The aim is to achieve at least 90% coverage or all diagnosed men.
The registry is notified when a new man is diagnosed through a participating hospital or clinic. These men are contacted for permission to collect data. Only a small percentage of men opt-out. Data are then collected on their details of diagnosis and treatments. After 12 months, each man is asked to complete a survey to report on how they are coping with health issues such as continence and sexuality.
Whose data is reported on, in the 2018 report?
In 2018, the PCOR-ANZ celebrated 4 years of operation. There are 218 sites that are gathering information across the two countries. Data from 53,322 diagnosed men through 293 clinicians is included in the registry. 59% of public hospitals are participating, and 41% of private hospitals. 2.7% of men who were asked if they consented to their records being in the study chose to opt-out. Men can opt-out at any time, by calling 1800 771 410 (Australia) or 0800 008 436 (NZ).
Information in this annual report represents historical data from men in SA and VIC (2008 to 2016) and national data from 2015 onwards. This research blog concentrates on data from men diagnosed in 2015 and 2016. From 2015 to 2016, the PCOR-ANZ captured data from 36% of men diagnosed with prostate cancer in all of Australia and NZ. The researchers’ overall aim is to gather data on 90% of all men with prostate cancer. The existing data are still enough to see interesting patterns and detect deviations from normal outcomes. By looking at this data, we can get a snap-shot of who is being diagnosed with prostate cancer, what treatments they are using and some of the outcomes from these treatments.
We expect that what is seen for these men (36% of the total) will be similar to the patterns for all Australian and NZ men with prostate cancer. However, we should remember that the registry does not have complete coverage in most areas. Their coverage is biased towards capturing men diagnosed and treated in large, metropolitan hospitals. This will change in the future, and the data will become more “representative” of all diagnosed men.
Who was diagnosed in 2015-2016?
The PCOR-VIC have records from 14,016 men diagnosed in the 2015-2016 time-period. Their average age was 67 years at diagnosis. Their average PSA reading was 7.2 ng/ml at the time of diagnosis. More than half (62%) were diagnosed after a TRUS biopsy. 32% had Gleason 7 (3+4) and 48% were considered intermediate risk.
How were these men diagnosed?
Most of the men (62%) were diagnosed by transrectal ultrasound-guided (TRUS) biopsy. 23% of men were diagnosed with transperineal (TP) biopsy. Since about 2012, the use of TP biopsies has rapidly increased. 10% were diagnosed by TURP, a procedure for men with an enlarged prostate. Older men, over 80 years of age, were most likely to be diagnosed this way.
It was very interesting to see that transperineal biopsies (TP) were commonly performed in VIC and TAS, but rare in NT, ACT and NSW. Only 1% of 2015-2016 diagnoses in NSW were done by TP biopsy. The reasons for this are unclear. But this could be affected by some bias in the coverage of data in the states that are newer to the registry, such as NSW. Once we have much more complete coverage, the numbers might tell a different story.
What treatments did these men choose?
Overall, 43% of these men had surgery to remove their prostate. But their management and treatment choices differed depending on the risk category of the cancer. Men with a low-risk diagnosis were far more likely to start with active surveillance. Surgery was the most popular initial treatment for men with intermediate-risk (62%) or high-risk disease (47%).
Some men are diagnosed with locally advanced disease (called very high-risk in this report). These men were most likely to start with radiotherapy (55%). But this is only a small proportion of the men diagnosed, just 1%. Men who were diagnosed with metastatic tumours in their pelvic lymph nodes (regional risk) were more likely to start with radiotherapy. These were only 2% of diagnosed men. 6% of men were diagnosed at the metastatic stage, with tumours in distant regions such as bones, lungs or liver. These men were most likely to start their treatment with hormone therapy (androgen deprivation therapy, ADT).
Unfortunately, active surveillance and watchful waiting needed to be combined for this analysis. The report states that this was due to some “ambiguity between treatment patterns and outcomes between metropolitan and other areas”.
Patient-reported outcomes
Measuring patient-reported outcomes gives a voice to men with prostate cancer. Rather than relying on numbers from medical reports, this data comes from interviews with these men. Staff from the PCOR-ANZ interviewed men using well-accepted surveys to gauge how urinary, bowel and sexual side issues were affecting their lives.
Urinary problems
Urinary problems often occur after treatment for prostate cancer. While it takes time, many men recover reasonable urinary control.
By 12 months after initial treatment, men were asked: “overall, how big a problem has your urinary function been for you during the last 4 weeks?” The results below show urinary function for men diagnosed in 2015-2016 by 12 months after diagnosis. Urinary issues affected men even if they chose active surveillance. This may be due age, or perhaps some symptoms of the cancer. Men who were treated with surgery, radiotherapy or ADT were slightly more likely to have urinary problems by 12 months than those who chose active surveillance, however the differences were not dramatic.
Bowel problems
Men were asked “overall, how big a problem has your bowel function been for you during the last 4 weeks?” This survey was given 12 months after diagnosis. Bowel problems were most likely to occur in men who had EBRT (external beam radiotherapy). Men who chose active surveillance also experienced bowel problems, indicating that some men of this age had bowel problems that were unrelated to prostate cancer treatment.
Sexual problems
Sexual problems are often the most-reported issue after prostate cancer treatment. 12 months after diagnosis, these men were asked: “overall, how big a problem has your sexual function been for you during the last 4 weeks?”
Men who had surgery were most likely to report problems with sex by 12 months after surgery. Men who chose active surveillance or radiotherapy also reported sexual issues. The issues reported for men who chose active surveillance show that many men of this age experience sexual issues that are unrelated to their treatment for prostate cancer. It’s clear from this data that surgery has a strong effect on men’s ability to have sex 12 months after their diagnosis.
Curiously, men who were treated with ADT alone reported the least problem with sex. This may be because ADT suppresses sexual desire. So the associated decrease in sexual function is not considered to be a “problem” by these men. But we don’t yet know the reasons for this interesting pattern.
Improving care for men with prostate cancer
An important goal of the PCOR-ANZ is to improve the quality of care provided to men with prostate cancer. The administrators of the registry engage with the clinical community. They provide confidential quality-of-care reports to participating hospitals and clinicians. These are 218 public and private hospitals and 293 treating clinicians who have registered with PCOR-ANZ. Reports to these people can highlight variations in care and help the health sector to improve the care they are providing for prostate cancer.
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