Population‐based prostate cancer outcomes registries – what have we learned and where are we heading?

The Australia and New Zealand Prostate Cancer Outcomes Registry (PCOR-ANZ) has now entered its ninth year of operation since establishment in 2015 1. The PCOR-ANZ represents a unique, huge, and rich dataset which can, and should, be optimally utilised to monitor, benchmark, and improve the quality of prostate cancer care in Australia and New Zealand (ANZ) 2. The PCOR-ANZ 2023 Annual Report was recently published, detailing the activities for the period of 2015–2021 3. Here, we provide a summary of key findings and plans moving forward. Between January 2015 and December 2021, there were 92 167 people with new prostate cancer diagnosis from across ANZ registered in the PCOR-ANZ. This represents an estimated 59% population coverage in Australia and 78% population coverage in New Zealand in 2021 (overall 62% population coverage bi-nationally). Over the reporting period, there was an increase in the proportion of people diagnosed with prostate cancer who reside in rural and remote areas in Australia. This likely reflects an increase in participation of rural and remote institutions. We anticipate that the population coverage of the PCOR-ANZ will further increase with the establishment of the PCOR in Western Australia (PCOR-WA) in 2024. There has been a shift in the proportion of people diagnosed with different National Comprehensive Cancer Network (NCCN) risk groups over time. Notably, there was a decrease in proportion of people with low-risk prostate cancer (from 21% in 2015 to 17% in 2021), with a concomitant small increase in other NCCN risk groups. There has also been a shift in the methods of prostate biopsy, with the vast majority now performed via transperineal approach (73% in 2021) instead of transrectal approach (72% in 2015). This, we believe, is one of the highest rates of transperineal prostate biopsy internationally, although there is still large variation across the population 4. There has been a change in patterns of management across NCCN risk groups, largely aligning with international guidelines and recommendations (Fig. 1). The proportion of people with low-risk prostate cancer managed with active surveillance increased from 66% (789/1202) in 2015 to 80% (1646/2070) in 2021, although large variation across the population was observed 5. There was also a change in the management of node-positive prostate cancer (i.e., regional disease) over time, with increasing availability of novel imaging modalities, new radiation therapy technologies and systemic therapies. In particular, the proportion of people with node-positive prostate cancer who received radiation therapy combined with androgen-deprivation therapy increased from 33% (41/126) in 2015 to 52% (255/493) in 2021. This pattern of practice will likely evolve in the coming years as new evidence is being generated and published. Patient-reported outcomes measures (PROMs) continue to be a key area of focus for the PCOR-ANZ, as the data collected is useful to inform people with prostate cancer on the risk-benefits of the different treatment modalities. PROMs are collected 12 months after diagnosis (in people who did not have active treatment), or 12 months after treatment (in people who have active treatment). Baseline PROMs are only collected in a few jurisdictions. The PROMs completion rate across the reporting period was ~50%. Nonetheless, to our knowledge, this represents one of the largest population-based PROMs collected in people with prostate cancer. PROMs were collected using different methods across jurisdictions, either through letters, e-mails, or telephone calls, and this may have influenced the observed variations in PROMs completion rate across jurisdictions. Among people who completed the Expanded Prostate Cancer Index Composite-26 (EPIC-26) questionnaire, sexual function appears to be most adversely affected, with 38% (16 204/42 641) reporting moderate–big bother relating to overall sexual function. Comparatively lower proportions of people reported moderate–big bother in urinary function (10%, 4408/44 261) and bowel function (5%, 2123/44 296). When we look at selected questions from the EPIC-26 questionnaire, it is notable that 31% (6603/21 303) of people who had surgery reported using at least one urinary pad per day, compared to 7% (761/10 378) of people who had radiation therapy, and 5% (458/9949) of people on observation. Reflecting on the past 9 years has allowed us to identify opportunities for improvement, in terms of the current operation of the PCOR-ANZ and processes to optimise the use of PCOR-ANZ data to improve outcomes for people with prostate cancer. Within the PCOR-ANZ, we continue to explore avenues to capture baseline PROMs to allow for more meaningful interpretation of post-treatment PROMs. Within the recently developed PCOR-ANZ database platform, we are hoping to provide clinicians and institutions, who are the loci for change in many aspects of prostate cancer care, with a timelier view of the outcomes experienced by the people they are looking after. We are also working on better understanding and addressing potentially unwarranted variations or disparities in prostate cancer care. In order for us to garner more insights into the long-term outcomes, there is also a need to build capacity for long-term follow-up of people with prostate cancer registered in the PCOR-ANZ. By promoting the PCOR-ANZ in clinical forums and increasing its visibility among various clinical specialty groups such as the Urological Society of Australia and New Zealand (USANZ), we aim to encourage the use of PCOR-ANZ data by a wider range of clinicians, researchers, patients, health policy makers and health funding agencies. To expand on the use of PCOR-ANZ data, we are also strengthening collaborations with cooperative trial groups such as the Australia and New Zealand Urogenital and Prostate Cancer Trials Group (ANZUP) to explore opportunities to develop registry-based clinical trials, building upon the existing infrastructure within the PCOR-ANZ. Internationally, we are hoping to be able to benchmark the outcomes of people with prostate cancer in ANZ with international groups such as the UK National Prostate Cancer Audit 6. Moving forwards, there is no doubt that there are opportunities and potentials aplenty to utilise and leverage the treasure trove of PCOR-ANZ data to make meaningful improvement in outcomes for people with prostate cancer in ANZ. The authors would like to acknowledge Movember for funding the establishment and ongoing operation of the PCOR-ANZ. The authors declare no conflicts of interest.