Focus project: NSW Prostate Clinical Cancer Registry

What is the NSW PCCR?

The NSW Prostate Clinical Cancer Registry (PCCR) is a opt-out clinical registry, established to improve the quality of care and outcomes for men diagnosed with and treated for prostate cancer in NSW. Participation by hospitals, cancer centres and specialists is voluntary and, as of July 2020, it is estimated to have coverage of >60% of the patient population in NSW.

The registry aims to gain population coverage, defined as 80% or greater over time. It is managed by the Cancer Institute NSW, in collaboration with the NSW Agency for Clinical Innovation and Monash University.

Prostate cancer accounts for 27.7% of all new cancers diagnosed among NSW males.[51] Population data are needed to identify trends, assess differences in outcomes and ensure delivery of the best possible health services to men with prostate cancer.

Aims

  • Increase use of best-practice guidelines for prostate cancer treatment
  • Assess patterns of care
  • Reduce variation in treatment and outcomes
  • Identify factors that predict treatment outcomes
  • Provide information to patients about the risks and benefits of specific approaches to prostate cancer treatment
  • Support research.

What does participation involve and what are the benefits?

Clinicians and institutions can help by assisting with the identification of men living with prostate cancer. This will allow the PCCR to contact patients to invite them to participate.

Since commencing recruitment in 2016, the PCCR has grown to cover 60% of the eligible NSW population. More than 9,000 men have registered, with an opt-out rate of 5.3%.

The PCCR will continue to increase its coverage of the population and gather information that will help to better understand how prostate cancer is managed in NSW. This year’s report includes the first insights from data collected in the PCCR from participating NSW sites and clinicians.

Earlier this year, the Movember Foundation published an annual report reflecting data collected across participating sites across Australia and New Zealand.

Data collected

The PCCR captures demographic, diagnosis, treatment, quality of life and mortality data for men with biopsy-diagnosed prostate cancer from 1 January 2015 onwards, diagnosed or treated at participating sites.

Supported by

The NSW PCCR is the NSW arm of the Prostate Cancer Outcomes Registry Australia and New Zealand (PCOR-ANZ), funded by the Movember Foundation with support from the Cancer Institute NSW in this state. PCOR-ANZ is also supported by:

  • Cancer Institute NSW
  • NSW Agency for Clinical Innovation (ACI)
  • Australian and New Zealand Urogenital and Prostate Cancer Trials Group (ANZUP)
  • Faculty of Radiation Oncology Genito-Urinary Group (FROGG)
  • Medical Oncology Group of Australia (MOGA)
  • Prostate Cancer Foundation of Australia (PCFA)
  • The Royal Australian and New Zealand College of Radiologists (RANZCR)
  • The Urological Society of Australia and New Zealand (USANZ)
  • Royal College of Pathologists Australia (RCPA)
  • Société Internationale d’Urologie (SIU).

The Cancer Institute NSW would like to acknowledge the contribution of all clinicians, hospitals and institutions who have agreed to participate in this quality initiative. We would also like to thank the PCCR Steering Committee, NSW Agency of Clinical Innovation, Monash University and the Movember Foundation for their ongoing support and guidance.

Participating public sites

Local health district (LHD) or specialty health network Hospital
Central Coast LHD Gosford Hospital, Wyong Hospital
Hunter New England LHD Armidale Hospital, Belmont Hospital, Calvary Mater Newcastle Hospital, John Hunter Hospital (Royal Newcastle Centre), Maitland Hospital, Manning Rural Referral Hospital, Tamworth Hospital
Illawarra Shoalhaven LHD Shoalhaven District Memorial Hospital, Wollongong Hospital
Mid North Coast LHD Coffs Harbour Base Hospital, Port Macquarie Base Hospital
Murrumbidgee LHD Griffith Base Hospital, Wagga Wagga Base Hospital, Young Hospital
Nepean Blue Mountains LHD Nepean Hospital
Northern New South Wales LHD Grafton Base Hospital, Lismore Hospital
Northern Sydney LHD Royal North Shore Hospital
South Eastern Sydney LHD Prince of Wales Hospital, St George Hospital
St Vincent's Health Network Sydney St Vincent’s Hospital Sydney
South Western Sydney LHD Bankstown-Lidcombe Hospital, Campbelltown Hospital, Liverpool Hospital
Western NSW LHD Bathurst Base Hospital, Cobar District Hospital, Coonabarabran District Hospital, Dubbo Hospital, Mudgee District Hospital, Orange Health Service, Walgett Health Service
Western Sydney LHD Blacktown Hospital, Westmead Hospital

Participating private sites

  • Sydney Adventist Hospital
  • Riverina Cancer Care Centre
  • St Vincent’s Prostate Cancer Centre (St Vincent’s Clinic), Garvan Institute of Medical Research
  • Macquarie University Hospital
  • Chris O’Brien Lifehouse
  • St Vincent’s Private Hospital

First treatment type after diagnosis, by proportion of the National Comprehensive Cancer Network (NCCN) risk category, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

Key finding:

  • The majority of men undertaking surgery and radiotherapy or any form of androgen deprivation therapy are usually at high/very high risk or metastatic at diagnosis

First treatment type after diagnosis, by proportion of the National Comprehensive Cancer Network (NCCN) risk category, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

N=Number of men diagnosed with prostate cancer on the PCCR with a valid NCCN risk category.

*  Diagnosed between January 2015 and October 2018.

Notes:

1. Data source: NSW Prostate Clinical Cancer Registry (PCCR).

2. Treatment is defined as the first treatment after diagnosis with the exception where a patient has received surgery combination with other treatments, or androgen deprivation therapy in combination with radiotherapy. Patients with surgery combined with other treatments have been grouped according to their treatment patterns. Treatments where androgen deprivation therapy was provided in combination with radiotherapy have been classified as radiotherapy.

3. Treatments occurring outside of 15 months from date of diagnosis were excluded.

4. Patients classified as "Other treatment" in the PCCR, or treatments types with less than 15 patients were grouped into "Other treatment type".

5. The number of men included in this analysis, represent an estimated 20% of men diagnosed with prostate cancer between January 2015 and October 2018.

Proportion of patient-reported outcome measures for bowel function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

Key finding:

  • 90% of total men undergoing any treatment type for bowel cancer experience no problem with bowel function.

Proportion of patient-reported outcome measures for bowel function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

N= Number of men answering bowel function outcome questions after treatment

* Diagnosed between January 2015 and October 2018. 

Notes:

1. Data source: NSW Prostate Clinical Cancer Registry (PCCR).

2. Treatment is defined as the first treatment after diagnosis with the exception where a patient has received surgery combination with other treatments, or androgen deprivation therapy in combination with radiotherapy. Patients with surgery combined with other treatments have been grouped according to their treatment patterns. Treatments where androgen deprivation therapy was provided in combination with radiotherapy have been classified as radiotherapy.

3. Treatments occurring outside of 15 months from date of diagnosis were excluded.

4. All post treatment patient-reported outcome measures are captured 12–15 months post the date of diagnosis, except for prostatectomy, radiotherapy, brachytherapy, whole-gland ablation, and focal gland ablation which are measured 12–15 months from the date of treatments.

5. The number of men included in this analysis, represent an estimated 10% of men diagnosed with prostate cancer between January 2015 and October 2018.

Proportional change in patient-reported outcome measures for bowel function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

Key findings:

  • 77% of total men reported no change in their bowel function after treatment.

Proportional change in patient-reported outcome measures for bowel function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

N= Number of men answering bowel function outcome questions after treatment

* Diagnosed between January 2015 and October 2018. 

Notes:

1. Data source: NSW Prostate Clinical Cancer Registry (PCCR).

2. Treatment is defined as the first treatment after diagnosis with the exception where a patient has received surgery combination with other treatments, or androgen deprivation therapy in combination with radiotherapy. Patients with surgery combined with other treatments have been grouped according to their treatment patterns. Treatments where androgen deprivation therapy was provided in combination with radiotherapy have been classified as radiotherapy.

3. Treatments occurring outside of 15 months from date of diagnosis were excluded.

4. All post treatment patient-reported outcome measures are captured 12–15 months post the date of diagnosis, except for prostatectomy, radiotherapy, brachytherapy, whole-gland ablation, and focal gland ablation which are measured 12–15 months from the date of treatments.

5. The number of men included in this analysis, represent an estimated 10% of men diagnosed with prostate cancer between January 2015 and October 2018.

Proportion of patient-reported outcome measures for sexual function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

Key finding:

  • At least 70% of total men reported poor to very poor sexual function within each treatment type, except for active surveillance, brachytherapy, and other treatment type.

Proportion of patient-reported outcome measures for sexual function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

N= Number of men answering bowel function outcome questions after treatment

* Diagnosed between January 2015 and October 2018. 

Notes:

1. Data source: NSW Prostate Clinical Cancer Registry (PCCR).

2. Treatment is defined as the first treatment after diagnosis with the exception where a patient has received surgery combination with other treatments, or androgen deprivation therapy in combination with radiotherapy. Patients with surgery combined with other treatments have been grouped according to their treatment patterns. Treatments where androgen deprivation therapy was provided in combination with radiotherapy have been classified as radiotherapy.

3. Treatments occurring outside of 15 months from date of diagnosis were excluded.

4. All post treatment patient-reported outcome measures are captured 12–15 months post the date of diagnosis, except for prostatectomy, radiotherapy, brachytherapy, whole-gland ablation, and focal gland ablation which are measured 12–15 months from the date of treatments.

5. The number of men included in this analysis, represent an estimated 10% of men diagnosed with prostate cancer between January 2015 and October 2018.

Proportional change in patient-reported outcome measures for sexual function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

Key finding:

  • Men having surgery only, surgery and radiotherapy or surgery with androgen deprivation therapy reported the highest proportion of worsening of sexual function ranging between 84% to 87%.

Proportional change in patient-reported outcome measures for sexual function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

N= Number of men answering bowel function outcome questions after treatment

* Diagnosed between January 2015 and October 2018. 

Notes:

1. Data source: NSW Prostate Clinical Cancer Registry (PCCR).

2. Treatment is defined as the first treatment after diagnosis with the exception where a patient has received surgery combination with other treatments, or androgen deprivation therapy in combination with radiotherapy. Patients with surgery combined with other treatments have been grouped according to their treatment patterns. Treatments where androgen deprivation therapy was provided in combination with radiotherapy have been classified as radiotherapy.

3. Treatments occurring outside of 15 months from date of diagnosis were excluded.

4. All post treatment patient-reported outcome measures are captured 12–15 months post the date of diagnosis, except for prostatectomy, radiotherapy, brachytherapy, whole-gland ablation, and focal gland ablation which are measured 12–15 months from the date of treatments.

5. The number of men included in this analysis, represent an estimated 10% of men diagnosed with prostate cancer between January 2015 and October 2018.

Proportion of patient-reported outcome measures for urinary function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

Key finding:

  • 55% of men reported to have total control of their urinary function and 33% reported occasional dribbling after treatment.

Proportion of patient-reported outcome measures for urinary function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

N= Number of men answering bowel function outcome questions after treatment

* Diagnosed between January 2015 and October 2018. 

Notes:

1. Data source: NSW Prostate Clinical Cancer Registry (PCCR).

2. Treatment is defined as the first treatment after diagnosis with the exception where a patient has received surgery combination with other treatments, or androgen deprivation therapy in combination with radiotherapy. Patients with surgery combined with other treatments have been grouped according to their treatment patterns. Treatments where androgen deprivation therapy was provided in combination with radiotherapy have been classified as radiotherapy.

3. Treatments occurring outside of 15 months from date of diagnosis were excluded.

4.All post treatment patient-reported outcome measures are captured 12–15 months post the date of diagnosis, except for prostatectomy, radiotherapy, brachytherapy, whole-gland ablation, and focal gland ablation which are measured 12–15 months from the date of treatments.

5.The number of men included in this analysis, represent an estimated 10% of men diagnosed with prostate cancer between January 2015 and October 2018.

Proportional change in patient-reported outcome measures for urinary function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

Key finding:

  • Within most treatment types, more than half of men had reported to have no change in urinary function after treatment.

Proportional change in patient-reported outcome measures for urinary function after treatment, by treatment type, for men registered on the NSW Prostate Clinical Cancer Registry (PCCR), January 2015–October 2018*

N= Number of men answering bowel function outcome questions after treatment

* Diagnosed between January 2015 and October 2018. 

Notes:

1. Data source: NSW Prostate Clinical Cancer Registry (PCCR).

2. Treatment is defined as the first treatment after diagnosis with the exception where a patient has received surgery combination with other treatments, or androgen deprivation therapy in combination with radiotherapy. Patients with surgery combined with other treatments have been grouped according to their treatment patterns. Treatments where androgen deprivation therapy was provided in combination with radiotherapy have been classified as radiotherapy.

3. Treatments occurring outside of 15 months from date of diagnosis were excluded.

4. All post treatment patient-reported outcome measures are captured 12–15 months post the date of diagnosis, except for prostatectomy, radiotherapy, brachytherapy, whole-gland ablation, and focal gland ablation which are measured 12–15 months from the date of treatments.

5. The number of men included in this analysis, represent an estimated 10% of men diagnosed with prostate cancer between January 2015 and October 2018.