The development and future for a population-based prostate cancer quality outcomes registry in Australia and New Zealand

Jeremy L. Millar*, Nupur Nag, Kim Moretti, Michael O'Callaghan, Sue Evans

*Cancer Council Victoria, Cancer Council Australia, Monash University, & Alfred Health

AOS4-6 | Scientific studies Track 2 - Closing the gap: quality cancer treatment and diagnosis for all

Level 1 Level 2

• Level 3 – Level 4

– Level 5 – Level 6

– Level 7

4066 men diagnosed in Victoria 2014 Australian prostate cancer incidence highest in the world (IARC) Most common cancer in men Most economically costly internal cancer One on five will die from the cancer

? Pathological grade ? TNM staging

? PSA ? Insured private care

? Treatment or treatment location

760 deaths Two fold variation across geographic regions

Co-morbidities Patient-reported outcomes, QoL

SA-PCCOC Commenced 1998 Institution based NSW PCOS

Cohort study Commenced 2002 Included PROMs

PCR-Vic From 2009 Population based PROMs in followup

PCHORU formed from SA & Vic collaboration From 2014 Aligned datasets on IDHOM standard Funded by Movember Foundation

Regional variation in presentation

Level 1 Level 2

• Level 3 – Level 4

– Level 5 – Level 6

– Level 7 Metro Melbourne

Distribution of NCCN risk groups determines prognosis

Gippsland Region

Northern Region

South-west Region

Level 1 Level 2

• Level 3 – Level 4

– Level 5 – Level 6

– Level 7 Increasing active surveillance in low-risk men Decreasing use of RT in all groups Increasing use of surgery in Intermediate and high risk

Changes in treatment patterns over time

Quality of Life over time by treatment mode

Level 1 Level 2

• Level 3 – Level 4

– Level 5 – Level 6

– Level 7

Sexual Bother Bowel Bother

Feedback to units and clinicians

6 monthly summary reports Designed to inform & provoke change Work at unit and individual level Graphs to benchmark riskadjusted peers

For example, funnel plots of margin rates by risk group

TrueNTH project Identification of poor QoL outliers Allow systematic intervention to help

Clinician feedback on outlying patients May identify unrecognized problems

Registry tracks quality metrics over time Tracks system-wide improvement

PCOR-ANZ

Support for development and proposal 2013

Federated model developed 2014 – State-based jurisdictions & Monash University central data – Opt off consent – Data items ICHOM with commitment to baseline

New Zealand joined in 2015

Launched 2016 with commitment to 90% coverage across ANZ

All Australian & New Zealand states and territories starting to accrue patients

2016 PCOR-Compare and Reduce Variation – Movember-funded – Internatioanal initiative led by Monash and UCLA – Dozens of academic units across Europe, UK, North America & Australasia – Use standard ICHOM datasets to propel quality improvement

Funded by grants from Movember