Twenty-eight men were interviewed between September 2003 and March 2004. One or more men in each of the six recruitment groups. For data protection reasons, GPs only provided names of those men who were willing to participate. Four response sheets were received from men declining to take part; however, the details of those men who were invited to participate and either declined or did not return their consent sheets were not known.
There was an imbalance in the number of men in each of the six clinical groups, with group 2 (normal PSA result) disproportionately represented by 11 of the 28 men. This was because the researcher was unaware of the clinical characteristics of the men prior to interview. A significant number of men with normal PSA results were interviewed before those with different clinical characteristics were identified. The other imbalance lay in group 1 (men who declined the PSA test) as difficulties were encountered in recruiting for this particular group. However, thematic saturation was attained for the sample as a whole. The majority of the men interviewed (21/28) had urinary symptoms when they initially presented to their GPs. Numerous medical issues, many unconnected with PSA and/or prostate problems, were raised during the interviews. This may have been due to the interviewer being a GP, but it may also be a reflection of the complexity of the PSA question. No medical advice was imparted during the interviews and, if concerns or questions arose, the men were advised to contact their own GP.
Theme 1. The decision-making context
Outside the formal healthcare setting, two important contextual factors influenced the men's awareness of PSA issues: their social networks and the media.
Men's social networks
The men's social networks, specifically their family and friends, were found to have a strong influence on PSA testing decisions:
‘So my brother, who's 3 years older than myself, and I'm 74 in a week's time, had this prostate trouble, back about 10 years ago from now. He kept onto me to get a test and I said, “What do I need a test for? I've got no problems”. He said that it could be hidden and you don't know it's there. So he badgered me for quite a long time. At the end of the day I said: “Ok, I'll go and have a blood test”.' (Group 5, man 23)
Direct advice from individuals within the networks was important, as in this example, where the daughter's status, as a healthcare professional, added to the legitimacy of her opinions:
‘Because I was noticing that I was going to the toilet quite a lot in the night, and because my daughter is a state registered nurse, and if I've got any problems regarding my health, I always ask her. And she advised me to go to the doctor immediately. So he sent me for the PSA test.’ (Group 2, man 7, U)
Change in the men's social networks could have a significant effect, for example, the arrival of a new neighbour:
‘We had a neighbour move in just below us, and he told us that he'd actually had prostate cancer, and that he'd had an operation which apparently cured it; and since, has had no more problems. He said that it showed up by having what's known as a PSA test, which I knew nothing about, so I asked the local doctor and he said, yes it was possible to have the test.’ (Group 2, man 9)
Another influential factor on testing was the potential effect of the men's decisions on their social networks:
‘I know I am elderly, and I can't expect to live many years longer, but I don't want to leave my wife on her own, so I'm going to hang on to life for as long as I can.' (Group 5, man 21, U)
Media influences
It was clear that some of the men had been exposed to significant media coverage of PSA/prostate issues:
‘There was a lot of stuff in the press at the time about how easy it was to detect early prostate problems, through a PSA test.’ (Group 4, man 18)
Of the different media, the newspapers seemed to be particularly important:
‘Well, quite a few articles appear in the press from time to time. The two main newspapers I read are the Telegraph and the Times — sometimes I read the two, sometimes just the one. Also I got a couple of textbooks, books on prostate problems.’ (Group 5, man 24)
There was only one example of using the internet as a source of information, and this had been accessed by the man's son:
‘I had got all the information to read from what my son had taken from the internet.’ (Group 5, man 22, U)
There no example in the interviews of the media directly influencing men to have a PSA test. There was, however, evidence of an effect on the men's knowledge, as in the case of one man who subscribed to a general periodical:
‘I knew quite a bit about the prostate. I'd subscribed to Reader's Digest for a long time, and it covered the matter completely.’ (Group 4, man 19, U)
And from his reading, the man had gleaned an understanding of some of the uncertainties of the PSA test:
‘I'd read various articles concerning prostate cancer and the anonymity of it really. The PSA test is the only way of catching it and even that is not infallible, as you know.’ (Group 5, man 24)
Finally there was the effect of media celebrities, as exemplified by one man relating his raised PSA to the experience of a popular singer/comedian, who was born in his city:
‘I was worried to put it lightly. Hearing about people like Sir Harry Secombe—he died because of prostate cancer — and that sort of thing goes through your mind.’ (Group 4, man 20, U)
It is difficult to differentiate the effect of information relating to prostate cancer from that relating to PSA testing. This is particularly so as half of these quotations in this section on media influences are from men with prostate cancer:
Theme 2. The locus of decision making
There was little evidence that the decision-making process relating to the PSA test was patient-centred. The following example illustrates doctor-centric decision making:
‘I know my doctor very well. He's been treating me now since I left the army. He suggested a blood test, and I said fine. He didn't have to go into the details.’ (Group 2, man 3, U)
The acceptance of this passive role seemed to be reliant on a high level of trust, as illustrated by the same man's use of a religious metaphor:
‘Well I suppose it's like going into a church. You put your umbrella in the corner and let the priest get on with it quite frankly. I've never really been one for criticising doctors. We seem to live in this world of litigation where they can hardly get on with their job as it is. So I tend to leave the expert to do their job. I explain what's wrong with me, and I hope and trust that if they're well qualified, that I'm going to get the right treatment.’ (Group 2, man 3, U)
Only one man in this study declined the PSA test. Nevertheless, his decision could not be described as being an active, patient-centred one:
‘She gave me a leaflet to read about the PSA test that we are talking about now. I just haven't been back to the doctors since. No, no reason whatsoever really on why I haven't been back. I've not thought of any real reason to have the test.’ (Group 1, man 1, U)
In contrast, the following quote is from a man who was unusual in firmly leading the decision-making process, partly as he was clearly influenced by a significant event within his social network:
‘I went and asked for it. Because a friend of mine had died, through prostate cancer, and I being roughly the same age, I thought I would go and have a check up myself.’ (Group 4, man 16, U)
Theme 3. Uncertainties of the PSA test
The uncertainties that related to the PSA testing process are described in terms of three sub-themes: ‘pre-test’ uncertainty; ‘post-test’ uncertainty; and the effects of these uncertainties.
Pre-test uncertainty
The uncertainty of the PSA test, both in terms of its validity and the broad range of subsequent outcomes, was an issue faced by a number of the men before the test:
‘He did explain that although the test would find out whether I had prostate cancer, it wasn't the be all and end all as far as the test was concerned. In other words if I came up as clear, there still may be some signs there, which I thought was a little strange at the time.’ (Group 2, man 9)
Furthermore, the men differed in their understanding of these uncertainties. In general, understanding was poor:
‘I didn't even know, until now, that it was called the PSA. All I understood was that it was a blood test, which should confirm whether there was cancer in the prostate or not.’ (Group 2, man 2, U)
Other men, however, did demonstrate a level of understanding, albeit with hindsight in the interview:
‘It's a ‘maybe’ test. Maybe you have, maybe you haven't.’ (Group 4, man 19, U)
Moreover, this man was able to recollect a metaphor that is used to explain to patients how individual prostate cancers differ from each other in their aggressiveness:
‘I then read about the pussy cat and the tiger type of cancers: you've got the pussy cat type where it's better left alone, and the tiger type then of course, needing strong action immediately, or at least an eye kept on it.’ (Group 6b, man 27,U)
One of the main challenges for the men was to understand the PSA test's poor specificity for both benign and cancerous prostate conditions. This man demonstrated some understanding:
‘I don't think one blood test alone would be sufficient to determine whether I have got prostate cancer, or a prostate problem. I think there'd have to be something else to balance it up.’ (Group 2, man 3, U)
In contrast, the man who made the following comment clearly experienced difficulties, and seemed to attribute this shortcoming to a lack of information:
‘I think my principal ignorance was that I actually thought that most of the problems that were detected were to do with having an enlarged prostate in some benign fashion. I really didn't think it was all about having prostate cancer. I hadn't realised that at all, I have to say. So maybe I didn't get myself properly briefed, but nobody told me that either.’ (Group 4, man 18)
Men's different desires for information, particularly from their doctors, seemed to contribute to their varied understanding of uncertainties prior to the PSA test. On the one hand some clearly wanted information, as in this case, where the man's healthcare background may also have been a contributory factor:
‘I asked the doctor different things, and as I worked in a hospital anyway, I found out as much as I could about it.’ (Group 4, man 20, U)
On the other hand, the following man seemed to prefer a relative degree of ignorance:
‘I don't want to know to be quite honest with you. All they do is take the blood, and they tell me a number — four or five, and I say “is that alright?” and they say “yes” and I'm quite happy about that.’ (Group 3, man 13, U)
While it is difficult in many cases to assess, from the men's recollections, what information was imparted by the GPs, it is probably true to say that if information was given, it varied in its detail. Some patients received very little information, as in this case:
‘I received no information, other than what I knew and read about myself.’ (Group 6a, man 25)
In contrast, the following man's GP attempted to explain the uncertainties relating to PSA testing, albeit with some difficulty:
‘Well they apparently see if you've got cancer. I don't know really. He tried to put me in the picture the best he could.’ (Group 2, man 7, U)
Post-test uncertainty
The PSA test result did not always resolve the uncertainty, even if it was ‘normal’:
‘Nobody suggested that there should be a test every 12 months or 2 years. I thought that maybe I should go back every 12 months, but I don't know what the time scale should be.’ (Group 2, man 9)
Repeated PSA testing could occur, particularly if the initial result was raised:
‘There were more than one test, because the first one was marginally high, and the second one was slightly higher. So there were two tests, maybe three. I can't remember. It went on for a fair while, being a bit high.’ (Group 4, man 18)
A raised PSA opened the possibility of cancer. It also revealed different approaches, by doctors, to managing the uncertainty. In this case, the GP gave a fairly balanced view and a clear recommendation on the best course of action:
‘The doctor said that although the level was raised, I didn't necessarily have cancer, but that it was best to find out whether or not.’ (Group 4, man 20, U)
In contrast, the doctor of the following man took a far more reassuring, although arguably more risk-laden approach:
‘The doctor decided that it was fairly high, but nothing to worry about.’ (Group 5, man 23)
One consequence of this diagnostic uncertainty was the need for further investigations, specifically prostate biopsies. Even then, the situation could remain unclear:
‘He arranged for a biopsy to be done and that was clear. So it was further monitored and up it went again, so back I went for another biopsy, and that was also clear. Monitored again and up it went again and I said to him, look, do you think I could have a third biopsy?’ (Group 5, man 24)
And, in the event of a diagnosis of prostate cancer, further uncertainty was generated, in terms of outlook, as described by this man:
‘The urologist explained that I did have cancer; suggested that I have hormone treatment and he explained that at my age the onset of cancer was likely to be slow, but that it may suddenly shoot out. He wasn't certain where I came on the curve, and that would appear on the tests that he would give me from time to time.’ (Group 5, man 21, U)
Effect of uncertainty
The uncertainties of the PSA testing process could generate considerable disaffection among the men:
‘What I don't like is the delay. The process of the system. During the 6 month period, could I develop cancer? If I could, something should have been done earlier.’ (Group 2, man 8, U)
After the test a raised PSA could generate further anxiety, as in this case, where the man made an immediate diagnostic assumption of prostate cancer and turned his thoughts to the issue of life expectancy:
‘Extremely worried. In fact I was shaken rigid, as I never thought that I'd have cancer there. I'd had some exposure to sunlight and that sort of thing, and had cancerous things on my ear and there were other things removed from my body, but certainly never dreamt that I would have cancer of the prostate. I may have been told something, but to be quite honest when I knew what it was I was just horrified, and I walked out thinking, ‘How long?’, because, with it being so high and I had seen things on the internet that a PSA of around 20 was not good. To think I got double this. I was very worried.’ (Group 5, man 22, U)
Regret was this man's reaction to the testing process, and he clearly laid out a message for other men:
‘I think in retrospect, I wish I hadn't. I would say, get very well briefed on what happens if the result of the test is borderline or potentially problematic. Be sure you know what you are letting yourself in for.’ (Group 4, man 18)
