Prostate Cancer Registry: an update · Prostate cancer notifications assessed for eligibility (n=3268) Assessed as eligible (n=2794) ... Locally advanced: very high risk Clinically

www.monash.edu.au

Prostate Cancer Registry: an update Sue Evans on behalf of the PCR Steering Committee

Registry Special Interest Group 10 August 2012

www.monash.edu.au 2

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

www.monash.edu.au 3

Five year survival after CaP diagnosis

www.monash.edu.au 4

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

www.monash.edu.au 5

Minimum dataset

Cancer Council Medical Records Patient

Demographic information -name, DOB, UR number

Patient’s Medicare number, address, phone number, e-mail address, preferred language

Confirmation of treatment

Next of Kin Details General health QoL

PSA levels including before subsequent treatments

Disease-specific QoL

Pathology Results - Gleason, TMN stage, date of biopsy

Clinical TMN staging

Post surgery biopsy results Treatment details - Provider details - Radiotherapy - Surgery - Androgen Deprivation - Chemotherapy

www.monash.edu.au 6

PCR: site recruitment

• 33 sites across Victoria

• 85% capture of newly diagnosed cases of CaP yellow

• 100% opt in by clinicians in recruited hospitals

www.monash.edu.au 7

PCR: patient recruitment to July 2012

• Collecting data since late 2009 • 6573 notifications imported • 1224 ineligible • 5312 letters sent • Opt off rate 1.69%

www.monash.edu.au 8

PCR results to March 2011 (with follow up to March 2012)

Prostate cancer notifications assessed for

eligibility (n=3268)

Assessed as eligible (n=2794)

Treatment data collected (n=2729

LOSS TO FOLLOW UP (n=709 or 25.4% of eligible population)

EXCLUDED DUE TO INELIGIBLITY (n=474)

12 month follow up (n=2033)*

OPT OFF (n=52 or 1.9% of eligible population)

Patient recruited (n=2742)

MEDICAL RECORDS UNAVAILABLE (n=13 or 0.5% of eligible population)

• 15% ineligible • 62% diagnosed prior to site

commencement date • 23% diagnosed at non-

recruiting hospital • 6% not pathologically

confirmed CaP • 5% delay in getting consent

from clinician • 3% died prior to recruitment

www.monash.edu.au 9

PCR results to March 2011 (with follow up to March 2012)

Prostate cancer notifications assessed for

eligibility (n=3268)

Assessed as eligible (n=2794)

Treatment data collected (n=2729

LOSS TO FOLLOW UP (n=709 or 25.4% of eligible population)

EXCLUDED DUE TO INELIGIBLITY (n=474)

12 month follow up (n=2033)*

OPT OFF (n=52 or 1.9% of eligible population)

Patient recruited (n=2742)

MEDICAL RECORDS UNAVAILABLE (n=13 or 0.5% of eligible population)

• 25% LTFU at 12 months • 9% delay in notification from

hospital • 5% unable to contact • 4% non-English speaking • 3% diagnosed at non-

recruiting hospital (RT) • 2% not interested (data

retained for 100% of pts) • 2% dementia/hearing

impaired/ too unwell

www.monash.edu.au 10

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%)

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%)

Mean age = 62y

Median PSA 6.8


Characteristics Patients by NCCN risk of disease progression category (n=2742)

74

93

35

591

1190

769

0 200 400 600 800 1000 1200 1400

TBD

Metastatic disease

Locally advanced: very high risk

Clinically localised: high risk

Clinically localised: intermediate risk

Clinically localised: low risk

94%


Treatment Management Clinically localised disease Locally

advanced

disease

Metastatic

disease

TBD

(likely

low risk)

TOTAL

Low

risk

Int risk High

risk

Total Very high

risk

No treatment 324 181 66 577 6 5 17 599 (21.8%)

RP (w/out

EBRT)

281 572 167 1,023 2 10 9 1041 (38.0)

RP (with

EBRT)

13 92 55 160 6 2 0 168 (6.1%)

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%)



advanced

disease

Metastatic

disease

TBD

(likely

low risk)

TOTAL

Low

risk

Int risk High

risk

Total Very high

risk

No treatment 324 181 66 577 6 5 17 599 (21.8%)

RP (w/out

EBRT)

281 572 167 1,023 2 10 9 1041 (38.0)

RP (with

EBRT)

13 92 55 160 6 2 0 168 (6.1%)

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%)



advanced

disease

Metastatic

disease

TBD

(likely

low risk)

TOTAL

Low

risk

Int risk High

risk

Total Very high

risk

No treatment 324 181 66 577 6 5 17 599 (21.8%)

RP (w/out

EBRT)

281 572 167 1,023 2 10 9 1041 (38.0)

RP (with

EBRT)

13 92 55 160 6 2 0 168 (6.1%)

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%)

42% of low-risk patients have surveillance

36.7% of low-risk patients have RP


Men with low risk disease are 4 times less likely than their US counterparts1 to receive active treatment 1. Cooperberg et al. JCO 2010.28(7):1117-23

• Never has evidence on patterns of care and appropriateness of treatment been so important

“Never has evidence on patterns of care and appropriateness of testing been so important”


Monitoring patterns of care NCCN risk category at baseline and treatment provided

Data on File: Prostate Cancer Registry 2012


Monitoring patterns of care NCCN risk category at baseline and treatment provided

Data on File: Prostate Cancer Registry 2012

ORP = 69% RARP = 21% LRP = 8%


Patterns of care Open radical prostatectomy in private and public hospitals

ORP Private

N=559 Public N=182

Sig

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

127 (22.9) 319 (57.6) 101 (18.2) 7 (1.3)

38 (20.9) 97 (53.3) 42 (23.1) 5 (2.7)

p=0.204

Positive margins present 156/511 (30.5%) 68/177 (38.4%) P=0.054

Urinary bother post diagnosis N(response rate)

Mean score*

439 (79.2%) 75.2 (30.1)

131 (72.0%) 66.6 (31.7)

P=0.001 Sexual bother post diagnosis

N(response rate) Mean score*

439 (79.2%) 36.4 (40.1)

131 (72.0%) 28.5 (37.7)

P=0.001



ORP Private

N=559 Public N=182

Sig




127 (22.9) 319 (57.6) 101 (18.2) 7 (1.3)

38 (20.9) 97 (53.3) 42 (23.1) 5 (2.7)

p=0.204



Mean score*

439 (79.2%) 75.2 (30.1)

131 (72.0%) 66.6 (31.7)



439 (79.2%) 36.4 (40.1)

131 (72.0%) 28.5 (37.7)

P=0.001



ORP Private

N=559 Public N=182

Sig




127 (22.9) 319 (57.6) 101 (18.2) 7 (1.3)

38 (20.9) 97 (53.3) 42 (23.1) 5 (2.7)

p=0.204



Mean score*

439 (79.2%) 75.2 (30.1)

131 (72.0%) 66.6 (31.7)



439 (79.2%) 36.4 (40.1)

131 (72.0%) 28.5 (37.7)

P=0.001


Change in patterns of care 1993* to 2009-2012

0

5

10

15

20

25

1993 2012

Median PSA at diagnosis (µg/L)

63

64

65

66

67

68

69

70

71

72

73

1993 2012

Median age at diagnosis

*Source: Frydenberg et al MJA 2000; 172:270-274


0%

20%

40%

60%

80%

100%

1993 2012

% localised disease

0%

20%

40%

60%

80%

100%

1993 2012

Diagnosis by screening/TRUS




• Extrapolating PCR data to statewide-level data there has been a ≈ 7-fold increase in RP from 280 cases in 1993 to 2180 cases in 2010.

•


0%

20%

40%

60%

80%

100%

1993 2012

Received curative treatment in first 12 months


0

200

400

600

800

1000

1200

1400

ADT/CT No Rx RP EBRT LDR BT Other BT

1993*

2008-2011




05

10

15

20

25

excludes outside values excludes outside values

Metro Regional/rural

PS

A_

Dx

Graphs by Metro & Regional hospitals0

51

01

52

02

5excludes outside values excludes outside values

public Private

PS

A_

Dx

Graphs by Public and private

Monitoring patterns of care PSA level at diagnosis: METRO vs RURAL PRIVATE vs PUBLIC

PSA at diagnosis by hospital location metro/regional

PSA at diagnosis by type of hospital (public/ private)


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


1 23

45 6

8

0

10

20

30

mor

talit

y ra

te

0 500 1000 1500Number of Cases

Monitoring quality of care Mortality rates according to hospitals

Mortality rate (unadjusted)


Monitoring quality of care Positive margins

1

2

3

6

10

20

30

40

50

% p

ositi

ve m

argi

ns

50 100 150 200 250 300Number of Cases

Positive margins (unadjusted)

12

3

56

80

20

40

60

80

100

% +

ve m

argi

n in

low

risk

gro

up

0 50 100Number of Cases

Positive margins (low risk group)



1

2

3

6

10

20

30

40

50

% p

ositi

ve m

argi

ns

50 100 150 200 250 300Number of Cases


12

3

4

6

80

20

40

60

80

100

% +

ve m

argi

n in

INTE

RM

ED

IATE

risk

gro

up

0 100 200 300 400Number of Cases

Positive margins (intermediate risk group)



1

2

3

6

10

20

30

40

50

% p

ositi

ve m

argi

ns

50 100 150 200 250 300Number of Cases


1

2

3

6

0

10

20

30

40

% +

ve m

argi

n in

HIG

H ri

sk g

roup

20 40 60 80 100 120Number of Cases

Positive margins (high risk group)


Monitoring quality of care Sexual BOTHER according to primary treatment approach 12 months post diagnosis

0% 20% 40% 60% 80% 100%

No Rx

ADT/Chemo

LDR

EBRT

RP Big problem

Moderate problem

Very small/Small problem No problem


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


Potential for research Linkage of standardised clinical data with tissue


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)


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

Prostate Cancer Registry: an update · Prostate cancer notifications assessed for eligibility (n=3268) Assessed as eligible (n=2794) ... Locally advanced: very high risk Clinically

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