Patterns of care for prostate cancer treatment and improving outcomes – are national registries the answer?

Abstract

The Prostate Cancer Outcomes Registry of Australia and New Zealand (PCOR-ANZ) has now been in operation for 6 years and has recently published a report providing details of activity for the period 2015–2017. The full report can be found here [1]. The PCOR-ANZ aims to provide feedback to clinicians, healthcare organisations, and patients in a manner to encourage, guide and measure improvement in care; act as a resource for research; and detailed unbiased description of the patterns of presentations, care, and outcomes across Australia and New Zealand. The summary of these provided by the PCOR-ANZ on a bi-national basis is unparalleled and we describe this here. The Registry has enrolled 67 570 men with prostate cancer from 244 sites in Australia and New Zealand (132 public, 112 private, 337 clinicians). The PCOR-ANZ registry operates under the Monash University Health Research Ethics Committee (HREC) primary certificate of approval number 21 692, which includes opt-out consent for participants. In the reporting period (2015–2017) population coverage of 54% was achieved based on incidence estimates for the period. This represents an increase on the last period (36%, 2016), but still short of the targeted coverage of ≥90%. Potential bias introduced through less than population coverage in the Registry to date should be acknowledged. Opt-out from the registry remains low (3%). Increased population coverage and low opt-out rates provide a data collection framework that is approaching a true representation of all men treated for prostate cancer and also means that the benefits of the Registry are offered to the maximum number of patients, clinicians, and policy makers. The Registry captures data relating to patient demographic characteristics, diagnosis, clinical details, treatment choices, and most importantly patient-reported outcomes, providing a picture of the prostate cancer journey for the 12 months commencing at diagnosis. In 2015–2017, the age at which men were diagnosed with prostate cancer remained stable (mean 67.7 years), although the method by which men were diagnosed appears to be changing. In 2017, 50% of men were diagnosed by TRUS biopsy, as opposed to 63% in 2015. In contrast, the proportion of men diagnosed by transperineal biopsy increased (38% in 2017 compared with 24% in 2015). We anticipate further increases in transperineal biopsy given the benefits of reduced post-biopsy sepsis, a severe adverse event sometimes seen after TRUS biopsy [2]; pending proposed changes to the Medicare Benefits Scheme to ensure it is adequately reimbursed; and availability of services. At the time of diagnosis, men most commonly receive a pathological International Society of Urological Pathology (ISUP) grade group of 1–2 (57% in 2017), a proportion that has remained constant since 2015. The National Comprehensive Cancer Network (NCCN) risk group ‘intermediate’ is also most commonly assigned across the region, although there is variation between jurisdictions, e.g. 44% of men were diagnosed with intermediate-risk disease in New Zealand, and 58% in New South Wales. Overall, radical prostatectomy remained the most common treatment type accounting for 50% of men with a treatment type allocated within the registry (11 289/22 456) across all risk groups. Two-thirds of men with low-risk disease had no record of immediate radical treatment, 65% of men with intermediate-risk disease had surgery, 84% of men with high-risk disease received treatment with curative intent, and 67% of men with metastatic disease were treated with androgen-deprivation therapy/chemotherapy. Treatment options varied across jurisdictions covered by the Registry (Fig. 1). Patient-reported outcomes are collected by PCOR-ANZ 12 months after the first recorded prostate cancer treatment using the Expanded Prostate cancer Index Composite-26 (EPIC-26) instrument [3]. The instrument measures both function and bother across domains commonly reported by men to be affected after prostate cancer treatment. One limitation particularly relevant for sexual function is the lack of pre-treatment data for statistical adjustment. Men in PCOR-ANZ experienced highest levels of bother in the sexual domain, particularly after surgery (56%). The bowel domain was much less likely to bother men after any treatment type, although men treated with radiotherapy were most likely to experience moderate or big bother at 12 months after treatment (9%). Functional outcomes overall were poorest in the sexual domain compared to other domains; median (interquartile range [IQR]) score: 20 (12.5–54.2), 85.9 (78.7–85.9), 91.5 (66.8–100) and 93.8 (87.5–100) for domains of sexual, bowel, urinary incontinence and urinary irritation, respectively. The PCOR-ANZ registry data are significant for all clinicians managing men with prostate cancer in Australia and New Zealand, particularly as quality indicator reporting commences. Patients in the region trust healthcare providers to manage their prostate cancer, and this reporting mechanism is a key driver for registries achieving improvement in routine care [4, 5]. Previous work via a Delphi process, has clarified 12 indicators for quality of care for prostate cancer, with further indicators relating to radiation oncology under development [6]. These indicators form the basis of reports provided to clinicians and institutes, and provide a national benchmark for the service they deliver. For the reporting period, the national average approaches aspirational targets set by the PCOR-ANZ Steering Committee for most indicators. Others require improvement particularly documentation of clinical T category at diagnosis, the rate of positive surgical margins in patients with intermediate/high-risk prostate cancer and patient-reported sexual bother 12 months after surgery. These data provide for the first time a regional picture of the quality of care delivered, highlighting areas that require our collective attention. The PCOR-ANZ is committed to expanding the number of clinicians contributing to the registry and receiving quality indicator reports, and also continuing to work with USANZ to ensure systems are in place for clinicians and institutes to improve the outcomes they achieve. The PCOR-ANZ welcomes data requests relating to research projects that aim to improve prostate cancer outcomes in the region. All authors declare no conflicts of interest.