The NSW Prostate Cancer Care and Outcomes Study

This is a study of Prostate Cancer Care Outcomes. It aims to describe the patterns of care for 2000 men diagnosed with prostate cancer and then to quantify the medium and long-term outcomes of care for prostate cancer, together with patients’ supportive care needs, quality of life, treatment preferences and coping mechanisms. A sub-study is also looking at the association between Vitamin D and prostate cancer outcomes.

The study was funded by the Department of Veterans Affairs and the National Health and Medical Research Council (NHMRC).

The aim was to describe the effects of different management approaches, three and five years after diagnosis, on the quality of life of men, particularly through reduction in incontinence and impotency and describing differentials in prostate cancer recurrence and survival after prostatectomy, radiotherapy, or hormonal therapy.

This study is unique as it draws its sample from a population base, has a longitudinal approach to the collection of self-reported outcomes and contains a control population of 500 men age- and postcode-frequency matched to the cases.

The longer-term aim of this study will be to measure of 10 and 15-year survival to 2012-2017 by matching cases with the death register.

 

Study Personnel

Chief Investigator
Professor Bruce Armstrong

School of Public Health, University of Sydney

Project Staff
A/Prof  David Smith

Research Fellow, Cancer Research Division, The Cancer Council NSW

In addition to the researchers at Sydney University and The Cancer Council NSW, input from urologists, medical oncologists, radiation oncologists and researchers in the areas of social sciences and health economics are involved in aspects of research design, data collection, analysis, interpretation and manuscript preparation.

 

Latest Study News

 In 2013, Prof Smith was an author on a publication providing baseline data about rates of erectile dysfunction (ED) in Australian men, over the age of 45. The study also looked at lifestyle factors which seem to predispose men to suffering from ED. This work will allow PCOS researchers to identify the extent to which treatment for prostate cancer affects this issue. From this publication, an infographic was developed for GPs, to explain the lifestyle choices men can make to lower their risk of ED. You can view this infographic below.

 

Click here for a larger version of the poster

Associate Professor David Smith, also have a presentation about this issue in 2013, which can be viewed below.

 

Aims of the Study

The aim is to find out, for example, whether men who choose to have one type of treatment do better than men who choose to have another type of treatment. This will enable us to find out the benefits and side effects of different treatments to inform men who are diagnosed with prostate cancer in the future about their options for treatment.

We also aimed to:

  1. Describe the unmet supportive care needs of men with prostate cancer and demonstrate ways to improve the needs of prostate cancer patients
  2. Describe the coping styles of men with prostate cancer
  3. Determine the preferences that men have for different treatment options
  4. Undertake an economic analysis of the costs to the health system of prostate cancer.

Study Protocol

The researchers asked two groups of men to take part:

  1. Men aged less than 70 years who were newly diagnosed with prostate cancer between October 2000 and October 2002. The men must have been living in New South Wales when they were diagnosed, their doctor must have agreed that it was appropriate for them to participate and they must consent to being involved.
  2. A sample of men in the general community who did not have prostate cancer. These men will help measure “normal” health status in a group of men of similar age to those with prostate cancer.

There are several parts to the study, and men were free to decide whether or not they took part in some or all of these. If a man agreed to participate:

  1. Men were asked to give a telephone interview about quality of life just prior to diagnosis for cases or current quality of life for controls. A repeat set of questions were subsequently asked at 1,2,3 and 5 years after diagnosis. During the interview men are asked questions about their general health and well being, and a set of specific questions about their urinary, bowel and sexual function. The questionnaire, the UCLA Prostate Cancer Index, has been adapted from a measure used in similar international studies. A self-completed written questionnaire for patients asked questions about the coping styles that they may have used since their diagnosis or their unmet supportive care needs.
  2. Men were asked for consent to allow researchers to access information from medical records relating to prostate cancer, and also for them to obtain information from Medicare about future Prostate Specific Antigen (PSA) tests or other procedures relating to treatment for prostate cancer.

Some 64% of all eligible cases and 63% of controls, originally approached, consented to the study. At five years post diagnosis 80% of cases remained in the study and were interviewed about their quality of life.

Recruitment of just over 2100 men with prostate cancer (cases) and 495 men without prostate cancer (controls) occurred between September 2000 and September 2002.

  • 2483 men completed an initial interview
  • 2359 men completed a 1 year interview
  • 2240 men completed a 2 year interview
  • 1731 men completed a 3 year interview (cases only)
  • 1993 men completed a 5 year interview.

For all consenting men data from Medicare were obtained in 2009. These data will be used to determine the longer term patterns of care and costs of care for prostate cancer.

Prostate Cancer Outcomes Study Data Sources

Prostate Cancer Outcomes Study Data Sources

Supportive Care Needs Survey

We surveyed the Supportive Care Needs of the first 1000 men with prostate cancer in the study. These men were asked about supportive care needs. We found that generally men had lower levels of supportive care needs than other cancer patient groups. However, younger men, those who had a radical prostatectomy and those with lower levels of education tended to have greater unmet needs than other men. The two areas where greatest need was identified included helping men with psychological issues (like worrying about test results, feeling anxious and uncertainty about the future) and with sexuality issues (like being given help about how to deal with changes in sexual feelings or sexual relationships). More information about this part of the study can be found in the following paper:

Smith DP, Supramaniam R, King MT, Ward J, Berry M, Armstrong BK. Age, health, and education determine supportive care needs of men younger than 70 years with prostate cancer. J Clin Oncol. 2007 Jun 20;25(18):2560-6.

Preferences for Treatment Side Effects

A sub-sample of 422 men involved in the main study were asked to voluntarily participate in an additional telephone interview, where they were asked about their treatment preferences for treatment options for prostate cancer. As the information obtained from them was from the patients’ perspective, and for cases (men with prostate cancer), it was informed by personal experiences of treatment. This new research will be an important contribution towards further informing the decision making of men diagnosed with prostate cancer in the future.

Prostate Cancer and Vitamin D

The study also generated a nested case-control study within the cohort, (PCOSun) in which data from men in this study and from a similar study in Queensland will be pooled to determine whether an association between Vitamin D, UV-exposure and prostate cancer recurrence exists. Blood was collected in 2007 from over 1180 men in the study and will be analysed to look at the relationship between sun-exposure, circulating levels of Vitamin D and risk of recurrence and survival. Follow up for this part of the study is due to occur through to 2011-2012.

Three Year Quality of Life Outcomes for Men with Localised Prostate Cancer

At three years post diagnosis we released the first results on men’s quality of life after treatment. Of the 1642 men with localised disease we found that in general their overall physical and mental function at three years was no different to population controls. However, compared to controls sexual function was worse in all treatment groups. While 21% of men who had a radical prostatectomy were impotent before their diagnosis 77% were impotent three years after treatment. Bowel function was most compromised in men having external beam radiotherapy and urinary function poorest in those having a radical prostatectomy.

Smith DP, King MT, Egger S, Berry MP, Stricker PD, Cozzi P, Ward J, O’Connell DL, Armstrong BK. Quality of life three years after diagnosis of localised prostate cancer: population based cohort study. BMJ. 2009 Nov 27;339:b4817. doi: 10.1136/bmj.b4817.

This paper can be fully accessed here:

http://www.bmj.com/cgi/content/full/bmj.b4817

If you would like more information about the study e-mail the co-ordinator David Smith at: dsmith@nswcc.org.au

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