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Medicine, Nursing and Health Sciences NSW Prostate Clinical Cancer Registry (NSW PCCR) Prostate Cancer Outcomes Registry Australia and New Zealand (PCOR-ANZ) A/Prof Jeremy Millar Clinical Lead, Victorian PCR; Director Radiation Oncology AlfredHealth July 2015 Medicine, Nursing and Health Sciences Clinical Trial Vs Clinical Registry vs Database REGISTRY CLINICAL TRIAL “Data-base” Population coverage/broad inclusion Controlled group (age, diagnosis, and exclusion criteria demographics) Specific group covered by institution or organisation but otherwise maybe uncontrolled Observational Randomized, often interventional Observational Life long monitoring Set time frame Until money or enthusiasm runs out Capacity to benchmark against other sites/clinicians Trouble benchmarking due to selection biases etc Enables wider extrapolation of results Not generalizable, but used for internal QA Good Pharmacoepidemiological Practice (‘GPP’) Good Clinical Practice (‘GCP’) and Good Laboratory Practice (‘GLP’). Organisational-specific Ethics committee approval is required Ethics committee approval is required Depending on use, generally yes Medicine, Nursing and Health Sciences • Monitor patterns of care • Stimulate competition • Provide early warning of deteriorating outcomes • Monitor appropriateness of treatment • Identify deficiencies in access to treatment • Identify variation in treatment or in outcomes • Dataspine for extended research Medicine, Nursing and Health Sciences Early work & Movember backing “Men living with prostate cancer have the treatment and care needed to be physically and mentally well” 2003 – ongoing: Movember Foundation has raised over AUD500 million in 21 countries 1998: SA-PCCOC 2009: VIC-PCR 2013: PCOR-ANZ binational initiative funded by Movember Foundation Medicine, Nursing and Health Sciences PCOR-ANZ Objectives • Monitor, benchmark and publicly report on prostate cancer treatment and care. • Provide risk adjusted, evidence based data to clinicians, hospitals and decision makers on prostate cancer management • Foster improved quality of treatment and care for men diagnosed with prostate cancer • Foster research leading to improvement in care and survival; ideally enabling comparisons across countries. Medicine, Nursing and Health Sciences PCOR-ANZ Governance • Within the operating principles established by the Australian Commission for Safety and Quality in Healthcare. • All project matters are governed by the PCORANZ Steering Committee. Medicine, Nursing and Health Sciences Endorsement by Professional Societies • Urological Society of Australia & New Zealand (USANZ) • Medical Oncology Group of Australia (MOGA) Incorporated • Royal Australian & New Zealand College of Radiologists (RANZCR). Medicine, Nursing and Health Sciences Local Responsibilities • Liaise with local HREC • Obtain PROMs, according to Protocol (aim >90% response rate) • Organise data collection • Undertake local audit, including data accuracy and completeness • Submit data to PCOR-ANZ • Review and provide feedback to Custodians on routine data quality reports received. • Provide input to Steering Committee deliberations as required (eg. data access policies, data reporting). Medicine, Nursing and Health Sciences Participant Recruitment NSW Cancer Institute notifies Registry of newly diagnosed prostate cancer case (Pt UR, Last Name, First Name, DOB) Hospital Medical record accessed to retrieve Address Explanatory Statement sent to eligible participants. Period of 2/52 elapses Participants "opt-off” by telephoning 1800 no. No further information collected Participants included in the Registry Participants phoned at residence @ 12/12 Quality of life and treatment outcomes recorded Clinical data collected for each treatment from Medical Record Medicine, Nursing and Health Sciences Reporting - Quality Indicator Set • • • • • • • Patient risk group (Low, Intermediate, High) Patient age Treatment Clinician Hospital hospital type (private/public) ICS Medicine, Nursing and Health Sciences Victorian Prostate Cancer Registry Medicine, Nursing and Health Sciences PCOR-VIC Quality Indicator Set Medicine, Nursing and Health Sciences Risk Assessment Tools • CAPRA-UCLA • Age, PSA at diagnosis, Gleason score (primary/secondary), Clinical stage, % positive cassettes • D’Amico • Clinical stage, PSA at diagnosis, Gleason score (total) Categorises men into Low, Intermediate, or High risk of biochemical recurrence, metastases and prostate cancer death Medicine, Nursing and Health Sciences Standard Reporting Medicine, Nursing and Health Sciences Standard Reporting Risk-adjusted, jurisdiction-based 80 % positive margins-INTERMEDIATE risk 60 60 40 20 40 20 your result your result 0 0 0 100 200 Number of Cases 300 20 40 60 80 Number of Cases 100 120 Medicine, Nursing and Health Sciences Time Series Analysis - RASPRT • Process control charts are displayed using NCCN categorises : High, Intermediate, Low risk of biochemical recurrence, metastases and prostate cancer death. • Provides opportunity for hospitals to see performance over time. Medicine, Nursing and Health Sciences Age distribution Medicine, Nursing and Health Sciences Variation with location of diagnosis Medicine, Nursing and Health Sciences PSA distribution overall Medicine, Nursing and Health Sciences PSA variation by private/public Medicine, Nursing and Health Sciences Grade distribution Medicine, Nursing and Health Sciences Grade variation public/private Medicine, Nursing and Health Sciences Risk grouping Medicine, Nursing and Health Sciences Variation public/private Medicine, Nursing and Health Sciences Surgery is the most common treatment Medicine, Nursing and Health Sciences Change in pattern-of-care, 1993-2014 AD/CT No treatment AS Prostatectomy EBRT LDR BT other 60 50 40 30 20 10 0 1993 2010 2014 Sources 1993 data: Frydenberg MJA 2000 2010 data: Evans MJA 2013 Medicine, Nursing and Health Sciences EBRT more common as age increases Medicine, Nursing and Health Sciences EBRT not common in low risk disease Medicine, Nursing and Health Sciences And does not depend on metro/regional Medicine, Nursing and Health Sciences AS becoming more common in LR Medicine, Nursing and Health Sciences Overall robots have nearly won… Medicine, Nursing and Health Sciences Robots win in private! Medicine, Nursing and Health Sciences Peer-reviewed Publications 1. Weerakoon M, Papa N, Lawrentschuk N, Evans SM, Millar J, Frydenberg M, Bolton D, Murphy D (2014). The current use of Active Surveillance in an Australian cohort of men: a pattern of care analysis from the Victorian Prostate Cancer Registry. BJU Int. (under review). 2. Evans S, Loff B, Cameron P (2013). Clinical registries: the urgent need to address ethical hurdles. Med J Aust; 198:134-5. 3. Evans SM, Millar JL, Davis ID, Murphy DG, Bolton DM, Giles GG, et al (2013). Patterns of care for men diagnosed with prostate cancer in Victoria from 2008 to 2011. Med J Aust; 198(10):540–5. 4. Evans SM, Millar JL, Frydenberg M, Murphy DG, Davis ID, Spelman T, Bolton DM, Giles GG, Dean J, Costello AJ, Frauman AG, Kearns PA, Day L, Daniels C, McNeil JJ (2013). Positive surgical margins: rate, contributing factors and impact on further treatment: findings from the Prostate Cancer Registry. BJU Int. Oct 15. doi: 10.1111/bju.12509. [Epub ahead of print] 5. Evans SM, Millar JL, Wood JM, Davis ID, Bolton D, Giles GG, Frydenberg M, Frauman A, Costello A, McNeil JJ (2013). The Prostate Cancer Registry: monitoring patterns and quality of care for men diagnosed with prostate cancer. BJU Int. Apr; 111(4 Pt B):E158-66. doi: 10.1111/j.1464410X.2012.11530.x. 6. Ilic D, Evans SM, Murphy D, Frydenberg, M. (2012). Laparoscopic versus open prostatectomy for the treatment of localised prostate cancer. (Protocol) Cochrane Collaboration; Issue 2. Medicine, Nursing and Health Sciences Challenges • Recruitment • Public/private hospital based • Pathology companies • Cancer registry • Consent • Clinician • Patient • Institution Medicine, Nursing and Health Sciences JOIN US! • Receive confidential reports detailing patterns of treatment and quality indicator findings • Earn Continuing Medical Education (CME) points that count towards your annual Continuing Professional Development (CPD) • Be entitled to display a poster and brochures demonstrating your participation in this important quality assurance activity • Be part of a binational effort to monitor and improve prostate cancer health outcomes. NSW Prostate Clinical Cancer Registry Status Update ● Full ethical approval from NSW Population and Health Services Research Ethics Committee (March 2015) ● Initial sites confirmed – 4 public, 5 private ● Additional 9 sites identified and are in the process of being engaged ● Target: 90% coverage of the patient population in NSW over the next two years ● Awaiting database from Monash University – customised copy of the Victorian Prostate Cancer Registry platform ● Will commence case-ascertainment and data collection on receipt of agreements with initial sites Page 41 NSW PCCR Information & Contacts ● Website: nsw-prostate-registry.cancerinstitute.org.au ● Email: [email protected] ● Hotline: 1800 992 028 ● Principal Investigators: ● ● Professor David Currow (Lead Investigator) ● Adjunct Associate Professor Andrew Brooks (Lead Clinician) Coordinator ● ● Serina Teuss ([email protected] or 02 8374 5607) PCOR-ANZ ● Custodian A/Prof Sue Evans, [email protected] • Program Manager Dr Nupur Nag, [email protected] Page 42