Prostate Cancer Registry: an update

Prostate Cancer Registry: an update Sue Evans on behalf of the PCR Steering Committee Registry Special Interest Group 10 August 2012

Acknowledgements PCR Project coordinators Julie Wood (metro) Joanne Dean (regional) Susan McKenna (follow up) PCR Project officers Joannie McPhee (Cabrini/Gippsland) Fanny Sampurno (CAPTIV project officer) Dina Farjou (Epworth) Lisa Selbie (PMc) Christine Sherwell (Barwon) Research assistants and follow up staff Nathan, Prishanti, Anna, Katherine, Diana, Melissa 2

Five year survival after CaP diagnosis 3

PCR goals To provide information on patterns of care following diagnosis of prostate cancer To monitor quality of care for men diagnosed with prostate cancer To provide a platform for further research of prostate cancer 4

Minimum dataset Cancer Council Medical Records Patient Demographic information -name, DOB, UR number Pathology Results - Gleason, TMN stage, date of biopsy Post surgery biopsy results Patient s Medicare number, address, phone number, e-mail address, preferred language Next of Kin Details PSA levels including before subsequent treatments Clinical TMN staging Treatment details - Provider details - Radiotherapy - Surgery - Androgen Deprivation - Chemotherapy Confirmation of treatment General health QoL Disease-specific QoL 5

PCR: site recruitment 33 sites across Victoria 85% capture of newly diagnosed cases of CaP yellow 100% opt in by clinicians in recruited hospitals 6

PCR: patient recruitment to July 2012 Collecting data since late 2009 6573 notifications imported 1224 ineligible 5312 letters sent Opt off rate 1.69% 7

PCR results to March 2011 (with follow up to March 2012) Prostate cancer notifications assessed for eligibility (n=3268) 15% ineligible Assessed as eligible (n=2794) 62% diagnosed prior to site commencement date 23% diagnosed at nonrecruiting hospital Patient recruited (n=2742) 6% not pathologically confirmed CaP 5% delay in getting consent from clinician Treatment data collected (n=2729 3% died prior to recruitment EXCLUDED DUE TO INELIGIBLITY (n=474) OPT OFF (n=52 or 1.9% of eligible population) MEDICAL RECORDS UNAVAILABLE (n=13 or 0.5% of eligible population) LOSS TO FOLLOW UP (n=709 or 25.4% of eligible population) 12 month follow up (n=2033)* 8

PCR results to March 2011 (with follow up to March 2012) Prostate cancer notifications assessed for eligibility (n=3268) EXCLUDED DUE TO INELIGIBLITY (n=474) 25% LTFU at 12 months Assessed as eligible (n=2794) 9% delay in notification from hospital 5% unable to contact 4% non-english speaking Patient recruited (n=2742) 3% diagnosed at nonrecruiting hospital (RT) 2% not interested (data retained for 100% of pts) Treatment data collected (n=2729 2% dementia/hearing impaired/ too unwell OPT OFF (n=52 or 1.9% of eligible population) MEDICAL RECORDS UNAVAILABLE (n=13 or 0.5% of eligible population) LOSS TO FOLLOW UP (n=709 or 25.4% of eligible population) 12 month follow up (n=2033)* 9

Characteristics of patients Characteristics Value Hospital Public Metropolitan 1383 (50.6%) 2647 (96.55%) Age at diagnosis <55 yrs 55-<65yrs 65- <75yrs 75- <85yrs 85+ 288 (10.5%) 967 (35.3%) 1055 (38.5%) 367 (13.3%) 64 (2.3%) Mean age = 62y PSA level at diagnosis 10ng/mL 10.1-20ng/mL >20ng/mL Not assessed 1856 (67.7%) 423 (15.5%) 279 (10.2%) 184 (6.7%) Median PSA 6.8 10

Characteristics Patients by NCCN risk of disease progression category (n=2742) Clinically localised: low risk 769 Clinically localised: intermediate risk Clinically localised: high risk 591 1190 94% Locally advanced: very high risk Metastatic disease TBD 35 93 74 0 200 400 600 800 1000 1200 1400 11

Treatment Management Clinically localised disease Locally Metastatic TBD TOTAL advanced disease (likely disease low risk) Low Int risk High Total Very high risk risk risk No treatment 324 181 66 577 6 5 17 599 (21.8%) RP (w/out 281 572 167 1,023 2 10 9 1041 (38.0) EBRT) RP (with 13 92 55 160 6 2 0 168 (6.1%) EBRT) EBRT 44 226 181 453 15 24 6 496 (18.1%) LDR 94 87 1 183 0 2 1 185 (6.7%) EBRT+HDR 0 30 42 72 2 0 1 75 (2.7%) ADT 6 15 85 106 3 49 0 158 (5.7%) Mono HDR 2 1 1 4 1 0 0 5 (0.2%) TBD 1 0 1 2 0 1 12 15 (0.5%) TOTAL 765 1204 599 2580 35 93 46 2742 (100%) 12

Treatment Management Clinically localised disease Locally Metastatic TBD TOTAL advanced disease (likely disease low risk) Low Int risk High Total Very high risk risk risk No treatment 324 181 66 577 6 5 17 599 (21.8%) RP (w/out EBRT) RP (with EBRT) 42% of low-risk patients have surveillance 281 572 167 1,023 2 10 9 1041 (38.0) 13 92 55 160 6 2 0 168 (6.1%) 36.7% of low-risk patients have RP EBRT 44 226 181 453 15 24 6 496 (18.1%) LDR 94 87 1 183 0 2 1 185 (6.7%) EBRT+HDR 0 30 42 72 2 0 1 75 (2.7%) ADT 6 15 85 106 3 49 0 158 (5.7%) Mono HDR 2 1 1 4 1 0 0 5 (0.2%) TBD 1 0 1 2 0 1 12 15 (0.5%) TOTAL 765 1204 599 2580 35 93 46 2742 (100%) 14

Men with low risk disease are 4 times Never less has has likely evidence than their on on patterns US patterns of counterparts care of care and appropriateness and 1 to appropriateness receive active of testing of been treatment so important been so important 1. Cooperberg et al. JCO 2010.28(7):1117-23 15

Monitoring patterns of care NCCN risk category at baseline and treatment provided Data on File: Prostate Cancer Registry 2012 16

Monitoring patterns of care NCCN risk category at baseline and treatment provided ORP = 69% RARP = 21% LRP = 8% Data on File: Prostate Cancer Registry 2012 17

Patterns of care Open radical prostatectomy in private and public hospitals ORP Private N=559 Public N=182 Age at surgery yrs (SD) 62.4 (6.7) 60.7 years (6.5) P<0.001 Risk category Low risk disease Intermediate risk disease High risk disease V High/Advanced disease Positive margins present Urinary bother post diagnosis N(response rate) Mean score* Sexual bother post diagnosis N(response rate) Mean score* 127 (22.9) 319 (57.6) 101 (18.2) 7 (1.3) 38 (20.9) 97 (53.3) 42 (23.1) 5 (2.7) Sig p=0.204 156/511 (30.5%) 68/177 (38.4%) P=0.054 439 (79.2%) 75.2 (30.1) 439 (79.2%) 36.4 (40.1) 131 (72.0%) 66.6 (31.7) P=0.001 131 (72.0%) 28.5 (37.7) P=0.001 18

Change in patterns of care 1993* to 2009-2012 25 Median PSA at diagnosis (µg/l) 73 72 Median age at diagnosis 20 71 70 15 69 68 10 67 66 5 65 64 0 1993 2012 63 1993 2012 *Source: Frydenberg et al MJA 2000; 172:270-274 21

Change in patterns of care 1993* to 2009-2012 % localised disease Diagnosis by screening/trus 100% 100% 80% 80% 60% 60% 40% 40% 20% 20% 0% 1993 2012 0% 1993 2012 *Source: Frydenberg et al MJA 2000; 172:270-274 22

Change in patterns of care 1993* to 2009-2012 100% 80% 60% 40% 20% 0% Received curative treatment in first 12 months 1993 2012 Extrapolating PCR data to statewidelevel data there has been a 7-fold increase in RP from 280 cases in 1993 to 2180 cases in 2010. 23

Change in patterns of care 1993* to 2009-2012 1400 1200 1000 800 600 1993* 2008-2011 400 200 0 ADT/CT No Rx RP EBRT LDR BT Other BT *Source: Frydenberg et al MJA 2000; 172:270-274 24

Monitoring patterns of care PSA level at diagnosis: METRO vs RURAL PRIVATE vs PUBLIC Metro Regional/rural public Private PSA_Dx 0 5 10 15 20 25 PSA_Dx 0 5 10 15 20 25 excludes outside values Graphs by Metro & Regional hospitals excludes outside values excludes outside values Graphs by Public and private excludes outside values PSA at diagnosis by hospital location metro/regional PSA at diagnosis by type of hospital (public/ private) 25

Monitoring quality of care - indicators Mortality rate Positive margins Documentation of ct stage in medical record Treatment for men with high risk disease No treatment for men with very low risk disease Treatment failure Biochemical recurrence at 24 months Quality of life SF12, urine, bowel and sexual bother at 12 & 24 months 26

Monitoring quality of care Mortality rates according to hospitals 30 mortality rate 20 10 0 8 3 45 6 1 2 0 500 1000 1500 Number of Cases Mortality rate (unadjusted) 27

Monitoring quality of care Positive margins 100 50 40 % +ve margin in low risk group 80 60 40 20 3 % positive margins 30 20 1 6 3 2 0 58 1 6 0 50 100 Number of Cases Positive margins (low risk group) 2 10 50 100 150 200 250 300 Number of Cases Positive margins (unadjusted) 28

Monitoring quality of care Positive margins % positive margins 50 40 30 20 10 1 6 3 50 100 150 200 250 300 Number of Cases 2 % +ve margin in INTERMEDIATE risk group 100 80 60 40 20 0 84 1 3 6 0 100 200 300 400 Number of Cases Positive margins (intermediate risk group) 2 Positive margins (unadjusted) 29

Monitoring quality of care Positive margins 50 40 % positive margins 30 20 1 6 3 2 Positive margins (high risk group) 40 10 50 100 150 200 250 300 Number of Cases Positive margins (unadjusted) % +ve margin in HIGH risk group 30 20 10 1 3 6 2 0 20 40 60 80 100 120 Number of Cases 30

Monitoring quality of care Sexual BOTHER according to primary treatment approach 12 months post diagnosis RP EBRT LDR DT/Chemo No Rx Big problem Moderate problem Very small/small problem No problem 0% 20% 40% 60% 80% 100% 31

A platform for further research Current research projects Data linkage with biobanks Radiation treatment regimen for men in high risk group for disease progression Delphi approach to prostate-cancer specific clinical indicators Survivorship project Outcomes according to type of RP (robot, lap open) Distance to treatment for men diagnosed in regional sites Correlation b/n biopsy and RP Gleason score Incidence of infection post biopsy CAPTIV project: Active surveillance project Movember national registry initiative 32

Potential for research Linkage of standardised clinical data with tissue 33

Steering Committee A/Prof Jeremy Millar (Alfred Health / Monash Uni) Prof John McNeil (Monash University) A/Prof Damien Bolton (Austin Health) A/Prof Ian Davis (Monash) Mr Max Shub (Consumer rep) A/Prof Declan Murphy (Peter Mac, Epworth) Prof Anthony Costello (Melbourne Health, APCC) A/Prof Mark Frydenberg (Monash University, Epworth and Cabrini Health) Prof Albert Frauman (Austin Health) Prof Graham Giles (Cancer Council of Victoria) Dr Sue Evans (Monash University) Mr Paul Kearns (Geelong; Regional Rep) Ms Linda Nolte (Victorian Department of Health) Colin O Brien (consumer rep) 34

Acknowledgements PCR staff (again) Participating medical staff and their practice managers/ office personnel Funding bodies PCFA Cancer Australia Victorian Department of Health Australian Prostate Cancer Consortium, Epworth Healthcare 35