Transcript APCCR Steering Committee Monday April 28th Cancer Institute NSW

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
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NSW PCCR Information & Contacts
●
Website: nsw-prostate-registry.cancerinstitute.org.au
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Email: [email protected]
●
Hotline: 1800 992 028
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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
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Custodian A/Prof Sue Evans, [email protected]
•
Program Manager Dr Nupur Nag, [email protected]
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