Prostate cancer awareness: lessons from men who haven’t been diagnosed.

[Wendy_Winnall]

Men living in outside metropolitan areas in Australia have a higher risk of dying from prostate cancer. There is some evidence that these men are being diagnosed at a later stage, with more advanced prostate cancer. This could be improved by better awareness of prostate cancer in the countryside. A new Australian study has interviewed undiagnosed men to hear their perspectives on prostate cancer. This study has uncovered barriers to prostate cancer awareness and early detection for Australian men.

Why are prostate cancer outcomes worse in the countryside?

Men living in regional or rural areas have around 24% higher risk of dying from prostate cancer than their urban counterparts. This terrible statistic tells us that our health systems are failing men in the countryside. Some of the reasons for this difference are thought to be limited access to health services, GPs and specialists. It’s also thought that men living in the countryside are reluctant to talk to their GPs about matters such as prostate cancer. The vast distances between communities in Australia poses a significant challenge to providing the same quality health care to reginal men as is to metropolitan men.

Some research has been done to try to understand why outcomes are worse in the countryside. A 2016 study of a region of Victoria with poor prostate cancer outcomes uncovered some interesting results. The regional men were more likely to be diagnosed at an older age than metropolitan men. They were also more likely to be diagnosed with higher risk or advanced disease. There was a longer time period between diagnosis and treatment for these men, which may also have contributed to differences in survival.

There probably are multiple reasons why these differences are detected. We know that health is generally worse in the countryside compared to the cities. This may put men in the country at greater risk of prostate cancer, or in poorer general health once diagnosed with prostate cancer. There are certainly improvements needed in the access to healthcare outside of capital cities. There may also be cultural issues at play. There is some evidence that men in the countryside are having less PSA tests to catch prostate cancer early. This would be consistent with a greater proportion of high-risk and advanced prostate cancer seen in some regional areas than metropolitan.

Case-finding for early diagnosis

One important issue is how prostate cancer is diagnosed in different regions of Australia. Case-finding and screening for prostate cancer refer to use of a PSA test by a man with no symptoms, resulting in early diagnosis of the cancer. This differs from incidental detection. Incidental detection refers to detection of prostate cancer through procedures such as TURP, for men with an enlarged prostate, or by testing men who have symptoms of prostate cancer. Early detection of prostate cancer is useful for treating the cancer before it has a chance to spread.

There are differences between case-finding and screening. Screening refers to clinicians and health services actively encouraging PSA tests for men at risk of prostate cancer (over 50 years, or younger if they have a family history). But case-finding refers to GPs recommending PSA tests according to their own “patient profiling”. There is not much research to tell us how men and their GP discuss PSA tests in Australia. Are the men more likely to bring up the subject and insist on a test, or are they more likely to wait until it’s mentioned by the patient?

Most cases of prostate cancer in Australia are diagnosed after a PSA test of a man with no symptoms. So one way or another, prostate cancer is most often caught early. However, this is obviously not working so well in the countryside, where men more likely to be diagnosed with advanced prostate cancer. Why this might be happening is one issue explored in a new Australian study.

Qualitative research to understand prostate cancer awareness

An Australian research group led by Prof Sue Evans has completed a project now published in an international journal. Their research aims to understand the perspectives of men who have not been diagnosed with prostate cancer. They used in-depth interviews with undiagnosed men in metropolitan and regional South Australia. They hoped that interviews with undiagnosed men could shed light on why men living in the countryside tended to have worse outcomes than men in capital cities.

This study design is known as qualitative research. Rather than generate data in terms of numbers and statistics, qualitative research explores personal opinions, perspectives and motivations. The researchers used semi-structured interviews. Men who were interviewed were able to elaborate at length on their opinions and experiences.

Fifteen men from South Australia were interviewed about their thoughts on prostate cancer awareness, case-finding and early diagnosis. 10 of the men came from metropolitan regions and 5 from regional areas (cities and towns in the countryside). They were between 40 and 80 years of age. The researchers didn’t directly compared men living in cities to countryside. They sought the opinions of all the men as to why the country and city experiences might be different.

From the in-depth interviews, 5 themes arose:

1. Addressing prostate health

Some of the men who were interviewed knew a lot about prostate cancer, but others knew very little about the subject. Some of the men admitted that they only went to the doctor when they were “really sick”, rather than to discuss early diagnosis. Others reported that they never discussed prostate cancer because they didn’t have a family history of it.

Some of the men discussed the symptoms of prostate cancer and believed that they didn’t need care about their prostate health until they had symptoms. However, they were usually were mistaken as to what these symptoms actually are.

2. Experiences with and expectations of GPs

About half the men reported good relationships with their GPs. Others had issues with trust, expectations and how much they participated in decision-making. Some of the men had been motivated to ask their GP about prostate checks. Two reported their GP being surprised that they had brought it up. These men persisted with their GPs until they were tested.

The interviews indicated that men’s experiences with their GPs typically influenced their later expectations. Many felt that they did not have a consistent family GP. Men saw good GPs as those who were quickly able to identify the cause of their problems, who were approachable, listened well and gave them options rather than orders.

3. Differences in care between regional and metropolitan areas

The descriptions of care in regional areas were notably different to metropolitan. Regional doctors were reported to be more elusive. They were described as mostly from non-Australian backgrounds and had higher turn-over rates. A difficulty in understanding the accents of these doctors was reported by men in regional areas. Men from both the city and country thought that access to health care in the country would be difficult. One regional man described the long waiting times between having a test and getting the results.

Some men in both groups considered that country men have different characteristics compared to city men. Country men were viewed as stoic and self-sufficient, but less likely to see a doctor.

4. Achieving early diagnosis

This is an important topic. If we want to improve that rates of prostate cancer detection at early stages, we need to know from men who are not diagnosed – what would influence them to get their prostate health checked?

Men reported that their GP’s attitude and pro-activity was important, as well as government support and creating awareness by providing information. There was also an expectation that GPs should initiate the discussion about prostate health. One man said that men hardly ever go to their GP for a check-up, so GPs need to be opportunistic in offering prostate checks. Some participants felt that the government should play a role in reminding men to get their prostate checked. Others felt that early diagnosis was up to each individual to pursue.

Some men felt that passive information, such as leaflets and TV ads, were ineffective. Sport-themed men’s health events were viewed as having a higher impact for men‘s health awareness.

One man from regional Australia told the interviewers that: “The government sends out (a letter) when you turn 50, I’ve always just got that, but I haven’t even opened it”.

5. Australian masculinity

The interviewed men had differing views on masculinity. Most men described the average Australian man as one who would brush aside their health concerns.

For men who aren’t directly affected by prostate cancer, speaking about it with friends and family was reported as uncommon. Some reported that they were less likely to raise the issue of prostate cancer due to denial, rather than embarrassment about the issue. Men reported a stigma attached to the prostate and its association with the digital rectal exam (finger test). Men reported many jokes were told about this test.

Men with a family member or friend with prostate cancer seemed more resistant to the “masculine norms” regarding awareness. Some of the men were part of Rotary or Men’s Sheds groups. They were more likely to have had conversations about men’s health within these groups. They considered this “safe” environment important for discussions on such topics.

These interviews were conducted with men living in metropolitan and regional areas. Regional areas are towns and cities outside of our capitals. The researchers really wanted to hear from men living in rural and remote areas. These are men living outside of country towns and cities. They tried to recruit such men for their study via social media, community clubs, Rotary clubs, libraries, Men’s Sheds, GP clinics and shopping centre adverts throughout regional and rural South Australia. Unfortunately, no rural men volunteered for the interviews. This demonstrates one of the many barriers in providing better quality health care to men in rural areas – it’s difficult to hear from these rural men themselves as to what they need.

A lack of consistent approaches to prostate cancer detection in GP appointments seemed to be an issue for the men in these interviews. Men often expected that GPs should bring up the issue. They were more likely to see their GP if they had a problem, rather than for a check-up. Many believed that the GP should be opportunistic in recommending a prostate check. However, the approach of GPs is not necessarily consistent with this expectation.

There is a need for clarity on how GPs should be talking to men about the possibility of PSA tests. The Royal Australasian College of General Practitioners (RACGP) discourages “screening” (actively recommending PSA tests) unless a man requests it. But these interviews indicate that men are reticent to request it. This may be even more apparent in regional areas, where men have less PSA tests compared to metropolitan centres.

In 2016, PCFA and Cancer Council Australia reviewed the research evidence and released updated guidelines for the early detection of prostate cancer. Our recommendation to health professionals is that they offer support to men considering a PSA test. We recommend tests every 2 years from the age of 50, but starting earlier if he has a family history. Men should have a discussion with their doctor about the benefits and harms of PSA testing and make a decision about whether or not to be PSA-tested for prostate cancer based on this discussion. However, our guidelines do not make recommendations about how GPs should bring up the topic within their practice.

To raise awareness to the Australian public early detection of prostate cancer, we have regular “Get checked” campaigns. All is needed is a blood test, not a finger test.