‘It's a maybe test’: men's experiences of prostate specific antigen testing in primary care

Analysis of themes

From the two thematic networks (before and after the PSA test), three themes were identified: the decision making context; the locus of decision making; and uncertainty related to the PSA test.

At the end of each quotation, the interviewed man's corresponding clinical group and identifier number is shown. The presence of urological symptoms at presentation is indicated by the letter ‘U’.

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.

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.

Summary of main findings

Uncertainty was a theme that ran through the experiences of the men interviewed. It related not only to the test itself but also to further investigations and treatments, causing significant anxiety and sometimes regret. Men's opinions about the PSA test, and their subsequent experiences, were found to be influenced by their social networks and by the media. From the evidence available, the decision-making process did not, in general, seem to be patient-centred, apart from a small group of men whose decisions could be described as patient-led.

Strengths and limitations of the study

The methodology used in this study (semi-structured interviews) was appropriate to generate hypotheses from a low evidence base. Verbatim transcriptions were undertaken and selected quotations were not edited. There was independent analysis of the data and concordance in the identification of themes. The choice of setting, South and Mid Wales, allowed men to be recruited from GP practices whose patients represent a range of socioeconomic groups. Furthermore, the men formed a representative sample in terms of the clinical outcomes related to PSA testing in primary care. The men were made aware at the beginning of the interviews that the interviewer was both a researcher and a GP. While this knowledge may have been helpful in allowing the men to feel comfortable in a traditional patient–GP setting, thereby facilitating discussions about health-related matters, this knowledge may have had an impact on the data. Specifically, the men may have felt obliged to align their views with what they perceived to be the established medical standpoint, for instance offering a more positive opinion on PSA testing than they would have done otherwise.

The transcripts from the interviews represent men's accounts of the events surrounding their healthcare experience. These accounts are subject to men's recollections and their interpretations of those recollections, both of which may have been particularly affected by the time gap between the PSA test and the interview. The transcripts may not have been entirely faithful to the spoken word: for instance, an interpretation may have been made of sentencing and words such as ‘um’ and pauses may have been removed.

The imbalance in the number of men in each clinical group means that thematic saturation cannot be claimed for each individual group. The challenges involved in attaining such a sample would have been considerable. The study GPs, who were not compensated for their involvement, were asked to identify men who had either undergone PSA testing or considered and declined PSA testing. Their information systems did not allow a more sophisticated sampling strategy to be undertaken easily. For instance, it was not possible to specify, for those who underwent PSA testing, how long ago they had the test. Furthermore, it was not possible to ensure that the men represented a desired broad range of socioeconomic groups. The researcher, therefore, was unaware of the men's clinical details until the commencement of the interview. Arguably, the men could have been asked about some of these details by the researcher when they were phoned to arrange the interview. However, entering into such a discussion may not only have prejudiced the subsequent interview but also caused anxiety for the men, particularly those who were uncertain about their PSA result.

A large number of men with normal PSA results were interviewed before the experiences of those with other clinical outcomes were captured (see Table 1). The recruitment, or sampling strategy, was therefore prospective rather than purposive, and it would have been preferable to interview more men who declined the test and men from ethnic minorities, as all of the interviewed men were ‘White British’. This is notable in the context of prostate cancer as the prevalence of the disease is relatively high in men of African and African–Caribbean extraction. Finally, it would have been preferable to interview more men who did not have urological symptoms on initial presentation and whose concerns centred on prostate cancer. Nonetheless, as is evident in the transcripts, it is to be noted that men can present to their GP with both problems.

Comparison with existing literature

Two other qualitative studies have looked at PSA testing. Chapple et al, looked at a group of 52 men with suspected or confirmed prostate cancer and found that while they remembered having their PSA test, they remembered far less about receiving any information before testing.7 In contrast, this study recruited a group of men with a range of clinical outcomes, many without prostate cancer, and exclusively from primary care. In the other qualitative study,4 part of the larger ProtecT study, men were invited to a nurse-led clinic in general practice where they were given information about the PSA test and prostate cancer and asked to provide consent for the blood test; those with abnormal results were then invited for further investigations. The authors found that changes to the way treatment options were presented improved recruitment to the study.4 However, this tells us relatively little about the natural event of PSA testing, particularly in primary care.

This study's findings on the decision-making context is in agreement with other work on urological symptoms in primary care, albeit in the context of lower urinary tract symptoms and not specifically PSA testing. Wolters et al, found that men with lower urinary tract symptoms who consulted a GP were more likely to have received advice from both their social networks and the media than those who did not seek advice. Moreover, men were more likely to see their GPs if they believed that he or she could address their symptoms.8 Uncertainty has been described by other commentators as a key element of clinical situations. A paper by Edwards et al, described a three-level model of uncertainty in clinical encounters: first, collective (professional) uncertainty; second, individual (clinician) uncertainty; and third, stochastic uncertainty — the irreducible chance elements for all conditions.11 The relevance of this model — certainly the first two levels of the model — to the PSA context is supported by this study, specifically by the inconclusiveness of the process and also by further components, as described in the current analysis, that relate to understanding of the uncertainty and the effect of the uncertainty.

Implications for clinical practice and future research

The finding that PSA testing is surrounded by issues of uncertainty imposes new obligations on clinicians. This involves embracing more patient-centred consultation styles in addition to the specific techniques drawn from the frameworks of shared-decision making, risk communication, and evidence-based patient choice.12^,13 Moreover, comprehensive communication is crucial for men to make ‘informed choices’, as envisioned in the PCRMP, currently being implemented throughout the UK.6 The challenge, is considerable, as is evident in other aspects of general practice, in particular the ordering of ‘tests’, where the implementation of shared decision making has been found to be difficult.14

Information designed for men needs to explain the multitude of uncertainties, both before and after the PSA test, and these uncertainties need to be discussed. Furthermore, recognition is needed that men's decision-making contexts are both rich and varied. Men do not rely solely on their doctors' opinions, important as they often are as reported here. They are also influenced, often strongly, by their extended social networks and by the media. Policymakers must therefore respond accordingly and recognise that PSA information does not start and finish in the doctor's consulting room. Paper decision aids, for instance, could be made available in a range of public places such as community centres and libraries. The greatest possibilities, however, are afforded by the internet. Notwithstanding the real issue of equity of internet access, web-based PSA information could facilitate the decision-making process for men, with or without the help of their doctors.15

At present, the range of experiences encountered by men who consider PSA tests in primary care is not fully understood. While this sample may well reflect existing primary care practice in the UK, more research is needed on the experiences of men with raised PSA tests, those who decline the test, and men from ethnic minorities. Improved use of specific computer codes in primary care will help in this respect. This would also allow the development of PSA information that was both balanced and culturally sensitive.