Papers

Why men with prostate cancer want wider access to prostate specific antigen testing: qualitative study

Alison Chapple, senior research fellow ^a, Sue Ziebland, senior research fellow ^b, Sasha Shepperd, university research lecturer ^a, Rachel Miller, honorary research fellow ^a, Andrew Herxheimer, emeritus fellow, UK Cochrane Centre ^a, Ann McPherson, research lecturer ^a. 

^a DIPEx, Department of Primary Health Care, University of Oxford, Institute of Health Sciences, Oxford OX3 7LF, ^b Cancer Research UK General Practice Research Group, Department of Primary Health Care, University of Oxford

Correspondence to: A Chapple
alison.chapple{at}dphpc.ox.ac.uk

	Abstract

Top Abstract Introduction Method Results Discussion References

Objectives: To explore the attitudes of men with confirmed or suspected prostate cancer to testing for prostate specific antigen.
Design: Qualitative interview study with a purposive sample.
Setting: Great Britain.
Participants: 52 men with suspected or confirmed prostate cancer, recruited through general practitioners, urologists, patient support groups, and charities.
Results: Almost all men remembered their prostate specific antigen test but recalled being given little information beforehand. Arguments in favour of increased access to testing included the belief that early diagnosis would reduce mortality, improve quality of life, and save the NHS money. Men also thought that a national screening programme should be available because symptoms can be ambiguous, screening for cancer is responsible health behaviour, and screening would encourage men to be tested. Four men who opposed a screening programme had gathered information alerting them to uncertainty about the benefits of treatment, and two regretted that they had been tested. Others thought that access to testing is restricted in the United Kingdom because of a lack of government backing, concerns about the accuracy of the test, and a lack of resources.
Conclusions: The few men in this study who subscribed to the argument that evidence of the benefits of treatment is a prerequisite for a screening programme did not want to see screening introduced. Men who proposed an alternative set of principles for testing gave reasons that did not all relate to overoptimism about the benefits of early diagnosis. People who plan services and people who respond to requests for testing need to understand men's perspectives and concerns.

What is already known on this topic The media report enthusiasm for both testing and screening for prostate specific antigen among men with prostate cancer Relatively little is known about men's experiences of such testing What this study adds The study helps to explain why most men with prostate cancer strongly advocate prostate specific antigen testing and screening It also shows that many men are ill prepared for test results and for the possible iatrogenic effects of treatment

	Introduction

Top Abstract Introduction Method Results Discussion References

A screening programme is justified if the screening test is accurate and effective treatment is available. Screening for prostate cancer cannot be justified while uncertainty remains about whether early detection and treatment of saves lives.^1-3 However, support groups for men with prostate cancer and much of the media do not question the benefit of screening and rarely mention the lack of evidence supporting open access to testing for prostate specific antigen. ^{4 5}

Participation by women in the existing national screening programmes for breast cancer and cervical cancer has been presented as responsible health behaviour,⁶ and its benefits are thought to include detecting disease at an earlier and more treatable stage. In several countries men are similarly encouraged to have a prostate specific antigen test on the grounds that screening for prostate cancer represents good preventive health care,^7-9 particularly in the context of an increasing incidence of prostate cancer. These arguments are especially powerful when expressed by men with prostate cancer and, combined with the attention from the media on screening for prostate cancer, explain why pressure for such screening has gained widespread popular support. ^{1 8 10} Men may find it contradictory that they are being encouraged to pay more attention to their health yet a prostate specific antigen screening programme has not been established in the United Kingdom.¹¹

Concern has been expressed that men receive little or no information before having a prostate specific antigen test.⁷ Although men who have received reliable information on screening are less inclined to request the test, many men continue to request it.¹² Men with prostate cancer clearly do not represent all men who might seek a prostate specific antigen test, but as "cancer survivors" their views command attention and have influence through the media. Their perspective is therefore important in helping to define what information men need when considering a prostate specific antigen test.

	Method

Top Abstract Introduction Method Results Discussion References

Sample
Having obtained ethics committee approval, we invited men with suspected or confirmed prostate cancer to be interviewed for DIPEx (database of individual patients' experience of illness).¹³ With their informed consent, we interviewed 52 men from throughout Great Britain. Men described many aspects of their experience of illness, but here we report only what they said about prostate specific antigen testing. Purposive sampling ensured a wide range of experiences and views.¹⁴ We included men who had prostate specific antigen tests because of their symptoms, men who received a diagnosis after routine private health checks, and participants in UK trials that included prostate specific antigen testing. Interviewing continued until the sample included men at different stages of diagnosis with experience of a wide range of treatments and until no new themes emerged from the data. We recruited men through general practitioners, urologists, patient support groups, and charities. The table shows the characteristics of the sample.

Interviews
All but three men were interviewed in their homes, between September 2000 and January 2001. One of the authors (AC), a medical sociologist, conducted almost all the interviews. The interviewer asked the men to tell their story, from when they first noticed their symptoms or had a prostate specific antigen test, with prompts about specific issues. Almost all the men discussed the prostate specific antigen test, because most were asked about the information they had received before having it. As interviewing progressed it became apparent that some men were concerned about the lack of routine testing for prostate specific antigen, and later interviews explored this issue. Almost half the men specifically discussed this subject. All interviews were audiotaped and lasted one to three hours.

Analysis
Respondents reviewed full transcripts. Subsequent data analysis involved examining sections of the interviews thematically across the whole dataset as well as in the context of each man's interview.¹⁵ We expected to find that prostate specific antigen tests were undertaken without much previous information, but the other themes discussed below emerged during data collection.¹⁶ Inter-rater reliability scores were not developed, as interviews were relatively unstructured,¹⁷ but two authors (AC, SZ) regularly discussed coding and results.

	Results

Top Abstract Introduction Method Results Discussion References

The results of the thematic analysis are described under broad headings and illustrated with extracts from the most apposite interviews.

Lack of information about the implications of the test
More than three quarters of the men we interviewed had consulted their general practitioner because of urinary symptoms, and almost all remembered having had a prostate specific antigen test. Men without urinary symptoms who had had tests included four who were temporarily living overseas and two who were offered tests as part of a trial. Others had been tested as part of company or private health checks or during investigations for seemingly unrelated problems.

Men who had had tests during investigation of urinary symptoms might be expected to have a different experience and perspective from those who were offered a routine test. However, whether or not they had presented with symptoms, men recalled being given little information at the time of the test. Although some men remembered being told that the test was not accurate, the implications of the test were usually discussed only after the result had been found to be abnormal (box 1).

Men diagnosed with prostate cancer may be relieved that the cancer has been identified and treated and may be disinclined to question how much information they were given. However, men without pretest symptoms may be more likely to question the level of information they received. For example, one man (P26) believed himself to be healthy before he had the test. His prostatectomy caused impotence, urinary symptoms, and other problems. Although he concluded that he was glad he had had the test, he felt that he should have been given more information, and at one point in the interview he seemed ambivalent about the consequences of his test:

"I now (wonder) what if I hadn't had a PSA test, what if I didn't know about the PSA? My quality of life, I've no doubt, would have been much greater than what I've experienced in the past six years. But having not had the benefit of a PSA test, how do I know then what my current situation would have been? Would it have been `Sorry, too late' and . . . I've heard so many fellow patients saying `God, I wish I'd had an early PSA.' On the other hand, I've missed my quality of life, but would I have missed my life now if I hadn't had a PSA?" (P26, PSA test as part of trial offered by his general practitioner)

Reasons for recommending testing
All but four men (discussed later) who discussed routine PSA testing were keen to see others, including their own friends and sons, have a prostate specific antigen test. Their reasons included the following (boxes 2 and 3).

Views about why prostate specific antigen screening is not yet available
Some of the men who favoured screening thought a programme had not been implemented in the United Kingdom because the government had taken bad advice, was reluctant to fund screening, and lacked resources to treat the men who would be identified with prostate cancer. Concerns about the accuracy of the test were mentioned but not considered a convincing deterrent: "I believe that the PSA test, for all its weaknesses, and I understand those, men should have [them]. It's outrageous to suggest to men that they shouldn't have one . . . I think the government is completely wrong, and I'm afraid to say that a lot of it is to do with trying to save resources." (P27)

Men who are not in favour of a screening programme
Four men said that they were against national screening for prostate cancer; two had had a prostate specific antigen test as part of a health check, and the other two had been tested after seeing their doctor with symptoms. The interviewer explored the perspectives of these men and sought explanations for their atypical responses.¹⁹

One man who had seen an American educational video about prostate specific antigen testing, which demonstrates uncertainty about the treatment options for men with prostate cancer, concluded that "To go to total screening would terrify so many people that you would cause a lot more harm than good . . . It shouldn't be done until you've got a guaranteed test and an assured treatment." (P33, tested during investigation of symptoms, had prostatectomy)

Another man, who had been influenced by a doctor in his family, thought that only men at high risk should be tested: "I think to screen the whole of the male population, and then simply say to them `Well, actually we are not quite sure what to do about it,' is probably not terribly helpful to people, and for a lot of people might be quite destabilising." (P49, tested during investigation of symptoms, watchful waiting)

The remaining two men had been found to have raised prostate specific antigen readings when routinely tested, and both regretted having had the test. One, who was 74 years old, had had a routine prenuptial test in the United States. He decided, after asking medical friends and getting a second opinion, that treatment was too invasive and decided on watchful waiting: "I had read up on things, and I was terrified of either incontinence or lack of sex. . . Basically I wish I hadn't known. I would have happily lived on in ignorance." (P22)

The other man was 61 years old and had had a routine test when living in the United States. Although his prostate specific antigen concentration was raised, cancer was not diagnosed. He became intensely anxious and expected to die. After searching the internet he concluded that surgery was akin to "butchery" and said he would prefer a shorter good quality life to living with probable incontinence and impotence: "I wish I had never had the very first PSA test . . . I think my principal point is really that it requires very informed consent in the same way that patients have to give informed consent to an HIV test. People should be taken through the worst case scenarios and see how they would cope with that." (P03, routine test, no cancer confirmed).

Notably, whereas men who recommended screening compared the prostate specific antigen test to screening for breast and cervical cancer in women, the two men who regretted their routine tests emphasised that men seeking a prostate specific antigen test should have pretest counselling, as used for HIV testing.

	Discussion

Top Abstract Introduction Method Results Discussion References

This study looks at testing for prostate specific antigen from the unique viewpoint of men with suspected or confirmed prostate cancer. We present the data as themes, and not as relative frequencies, because qualitative studies cannot represent the wider population numerically.²⁰ The sample was selected to represent the widest practical range of experiences of men with prostate cancer. Over half of our volunteers were well educated white men; interviews with more manual workers and more men from other ethnic groups might have identified additional issues.

Although we did identify misunderstandings, including optimism about the benefits of early diagnosis, men with prostate cancer who advocate screening are not simply uninformed. We suggest that many of these men are following a different set of principles from those intended to guide screening programmes,²¹ and men who advocated screening did not dwell on the lack of a clear treatment choice. The four men who opposed screening knew that there was no treatment proved to be effective, and crucially they accepted that this was a deterrent to screening. Epidemiological data indicate that screening for prostate cancer has serious disadvantages, including inaccurate testing, lack of evidence that treatment reduces mortality, and serious adverse effects of treatment.²²

It is no surprise that men believe that prostate specific antigen testing offers health benefits. Several men, particularly members of support groups and users of the internet, cited the "positive" effects of screening programmes in the United States and Austria. However, they may not have been aware of the serious limitations of these data, such as the problem of lead time bias.²³ Many men with prostate cancer suspect that official reluctance to encourage a national programme is prompted by cost concerns and a misunderstanding of the evidence. The fact that prostate specific antigen testing is offered routinely to men with private health insurance in the United Kingdom may promote the notion that it is valuable.

General practitioners in the United Kingdom have been advised to ensure that men who have a prostate specific antigen test are making an informed choice.²⁴ A key component of this information should be the uncertainty about the benefits and risks of treatment. However, arguments based on principles such as the "right to information" about one's health, equality, and the "imperative to avoid regret" will persuade some men to have the test, even if they understand that no treatment is known to prolong life. An additional argument for screening, which may persuade even those who know that the research evidence is inadequate, is that a screening programme would raise the profile of the condition and thus enhance the probability of developing effective treatments. Policy makers and politicians, as well as doctors, need to understand why people want wider access to prostate specific antigen testing, so that they can find better ways of communicating information about risk.

	Acknowledgments

We thank the men who took part in the interviews, the people who helped to recruit volunteers, and Jane Melia for useful comments on an earlier draft of this paper. Pamela Baker and Janet Caldwell gave invaluable help with administrative matters.

Contributors: AC interviewed most of the men for this study and analysed the data in collaboration with SZ. AMcP and AH had the original idea for the wider DIPEx project, and SZ, RM, and SS have been involved in the project since it began. AC drafted the paper; all the authors contributed to the subsequent drafts and final version. AC and SZ will act as guarantors for the work.

	Footnotes

Editorial by Thornton

Funding: National Screening Committee.

Competing interests: None declared.

	References

Top Abstract Introduction Method Results Discussion References

1.	Barry M. Prostate specific antigen testing for early diagnosis of prostate cancer. N Engl J Med 2001; 344: 1373-1377[Free Full Text].
2.	Neal D, Donovan J. Prostate cancer: to screen or not to screen? Lancet Oncol 2000; 1: 17-24[CrossRef][Medline].
3.	Tannock I. Eradication of a disease: how we cured asymptomatic prostate cancer. Lancet Oncol 2000; May: 17-19.
4.	What fails men? PSA Newsletter 2000; 4: 2.
5.	Lee-Potter L. How my wife saved my life. Daily Mail July 8 2000:4.
6.	Howson A. Cervical screening: compliance and moral obligation. Sociology of Health and Illness 1999; 21: 401-425[CrossRef].
7.	Slevin T, Donnelly N, Clarkson J, English D, Ward J. Prostate cancer testing: behaviour, motivation and attitudes among Western Australian men. Med J Aust 1997; 171: 185-188.
8.	Ward J, Hughes A, Hirst G, Winchester L. Men's estimates of prostate cancer risk and self-reported rates of screening. Med J Aust 1997; 167: 250-253[Web of Science][Medline].
9.	Taylor K, DiPlacido J, Redd W, Faccenda K, Greer L, Perlmutter A. Demographics, family histories, and psychological characteristics of prostate carcinoma screening participants. Cancer 1999; 85: 1305-1312[CrossRef][Web of Science][Medline].
10.	Stuttaford T. Wake up call for the prostate. Times September 14 2000:10.
11.	Donovan J, Frankel S, Neal D, Hamdy F. Screening for prostate cancer in the UK. BMJ 2001; 323: 763-764[Free Full Text].
12.	Volk R, Spann S. Decision-aids for prostate cancer screening. J Fam Pract 2000; 49: 425-427[Web of Science][Medline].
13.	Herxheimer A, McPherson A, Miller R, Shepperd S, Yaphe J, Ziebland S. Database of patients' experiences (DIPEx): a multi-media approach to sharing experiences and information. Lancet 2000; 355: 1540-1543[CrossRef][Web of Science][Medline]. [See also www.dipex.org for an update about this project.]
14.	Coyne I. Sampling in qualitative research. Purposeful and theoretical sampling; merging or clear boundaries? J Adv Nurs 1997; 26: 623-630[CrossRef][Web of Science][Medline].
15.	Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet 2001; 358: 483-488[CrossRef][Web of Science][Medline].
16.	Pope C, Ziebland S, Mays N. Analysing qualitative data. BMJ 2000; 320: 114-116[Free Full Text].
17.	Morse JM. "Perfectly healthy but dead": the myth of inter-rater reliability. Qual Health Res 1997; 7: 445-447[Free Full Text].
18.	Stuttaford T. A test that could save thousands of men. Times June 8 2000:21.
19.	Silverman D. Interpreting qualitative data. London: Sage, 1994.
20.	Malterud K. The art and science of clinical knowledge: evidence beyond measures and numbers. Lancet 2001; 358: 397-400[CrossRef][Web of Science][Medline].
21.	UK National Screening Committee. Second report of the UK National Screening Committee. London: Department of Health, 2000.
22.	Brawley O. Prostate carcinoma incidence and patient mortality: the effects of screening and early detection. Cancer 1997; 80: 1857-1863[CrossRef][Web of Science][Medline].
23.	Grimes D, Schulz K. Uses and abuses of screening tests. Lancet 2002; 359: 881-884[CrossRef][Web of Science][Medline].
24.	Department of Health press release 2001/0302. Launch of informed choice project for prostate cancer, 4 July 2002 (http://tap.ccta.gov.uk/doh/intpress.nsf/page/2001-0302).

(Accepted 4 April 2002)