“Couldn't you have done just as well without the screening?”

Abstract

Objective. To explore how individuals whose health screening does not reveal a high cardiovascular risk score (CRS) interpret and respond to this result. Design. Qualitative semi-structured interviews. Purposeful sampling reflected variations in age, gender, and self-rated health within the sample. Analysis and interpretation were informed by the Health Belief Model concerning individuals’ cues to act when told there is a health threat, and by Hollnagel and Malterud's theories about personal self-assessed health resources. Setting. Participants were recruited among participants without a high cardiovascular risk score in a Danish health-screening project. Subjects. Seven men and 15 women aged 36–50 years with a low or moderate cardiovascular risk score. Results. The screening confirmed the participants’ feeling of being in good health and they put emphasis on this acquired peace of mind. Participants used the results to eliminate worries and confirm their lifestyle up to now but were aware that the results gave no guarantee that there was nothing the matter elsewhere. Some paid a price for the reassurance since they had to undergo further examinations, had unfulfilled expectations, or were irritated at not being left in peace with their reassurance. Conclusion. Screened individuals who were shown not to have a high risk score appear to be reassured and confirmed in their own feeling of being healthy, and to be aware of the limitations of the screening. Consideration should be given to the possible risk of creating either insecurity or over-complacency through population screening.

• Family practice
• lifestyle
• mass screening
• qualitative research
• risk factor

Screenings are planned and evaluated for populations, and critics have discussed the possibility that such results offer false reassurance and result in inattention to lifestyle changes for the individual 1–3. As general practitioners (GPs), we have experienced the challenges of balancing lay knowledge and lay beliefs against professional attitudes.

We wanted to learn more about how those invited to a health screening perceive the purpose of participation, and what impact the screening had on them. We conducted an interview study [4], [5] with people who had been invited to a health screening [6], [7], focusing on personal views and experiences of screening. We found that screened participants with elevated cardiovascular risk score (CRS) initiated significant lifestyle changes, though they did so only to a limited degree when such changes would affect their quality of life [5]. Not much is known of how individuals interpret and respond to repeated information that they are not at high risk of cardiovascular disease and that in other respects their health appears good, or of how participation in health screening affects the participants’ understanding of and behaviour in relation to symptoms, health, and risk of illness. Marteau concluded that long-term studies are needed to assess how a negative screening result affects subsequent behaviour [8].

Previous studies have revealed that participants in screening programmes take a normal result as proof that they do not need to alter their lifestyle and this may give them an inappropriate degree of reassurance.

• Our study demonstrated that the screening confirmed the participants’ feeling of being all right, although they were aware that it gave no guarantee.

• The participants appeared almost hurt when asked whether they could not have done just as well without the screening.

• Some paid a price for the reassurance since they had to undergo further examinations or had unfulfilled expectations

The Health Belief Model suggests that a perception of susceptibility to illness is one of the necessary factors in providing the impetus to take preventive action [9]. Hollnagel and Malterud suggest a shift in attention, from susceptibility to risk factors towards personal health resources [10], [11]. A clean bill of health may – as Tymstra [12] found – eliminate a person's perception of being susceptible to illness and reinforce an unhealthy lifestyle, or it may be used as a resource to maintain or develop healthy living.

The aim of this article is to explore how individuals whose health screening does not reveal a high cardiovascular risk score (CRS) interpret and respond to this result.

Material and methods

Seven men and 15 women were selected from the Ebeltoft project (Box 1) by purposeful sampling [13], including variations in terms of age and self-rated health. The Ebeltoft project is a multiphasic broad-spectrum screening based on lifestyle factors and biomedical markers leading to a calculation of cardiovascular risk score (CRS). For the purpose of studying individuals without a high CRS we have analysed expressions from participants calculated to be at low and moderate risk. At two health screenings one year apart, the participants’ CRS was shown not to be high.

Box 1. Ebeltoft project, a multiphasic broad-spectrum screening.

In 1991 a random sample of 2000 people aged between 30 and 50 were asked to participate in a population-based, randomized, controlled health promotion study in Ebeltoft, Denmark [6], [7]. The invitation included a one-page questionnaire containing among other things a question on self-rated health: “How would you describe your health status in general: very good, good, fair, poor, or very poor”? Participants were randomized into two intervention groups and a control group. The control group was asked only to fill in a questionnaire. Participants in one intervention group were given a health screening, including a planned health discussion, regardless of the results of the health screening. Participants in the other intervention group were given the same multiphasic, broad-spectrum screening, but not the planned health discussion. The health screening was designed mainly to detect lifestyle factors and biomedical markers (weight, blood pressure, lung and liver function, CO concentration in expiratory air, electrocardiogram, blood glucose, cholesterol, urate, and creatinine level, urine dipstick condition, height, sight, and hearing), and included – based on BMI, blood pressure, cholesterol, age, sex and family history – a calculation of cardiovascular risk score (CRS), giving an estimate of the risk of premature cardiovascular disease for each individual to be low, moderate, elevated, or very high [6]. All those tested received personal written feedback from their general practitioners, including a general formulation that “you can use the result of the screening to consider possible lifestyle changes” and warnings against taking the test as a guarantee against disease.

The interviews were carried out in 1996 and conducted by the first author 3–4 years after the second health screening and included questions about the participants’ reasons for participating in the screening, their experiences of the screening and the findings, their assessment of their own health, and their views on health promotion and screening and on the opportunity to have a consultation with their GP. Analysis of the first few interviews showed that one additional question was of use for participants who were not at high risk: “Couldn't you have done just as well without the screening, since the result turned out to accord with your own sense that everything was normal?” Apart from this, the interview guide did not differ with regard to the participants’ calculated risk score.

The complete interviews were audiotaped. The tapes were replayed within a week after the interviews, and sections to be transcribed were identified. A summary of each interview was made and read to get a sense of the data as a whole using Malterud's principles [14]: The interviewer read through each interview and coded parts concerning the participants’ thoughts, attitudes, and behaviours without using predefined categories. These coded parts were then compared with the original recordings and the entire transcriptions. Finally, the overall message of the interviews was condensed and expressed in more general terms. The final categories presented here were developed through negotiation among the authors.

Permission to conduct the study was given by the Scientific Ethics Committee of Aarhus and the Danish Board of Registration.

Results

The screening confirmed the participants’ feeling of being in good health and they put emphasis on this acquired peace of mind. Participants used the results to eliminate worries and confirm their lifestyle up to now but were aware that the results gave no guarantee that there was nothing the matter elsewhere. Some paid a price for the reassurance since they had to undergo further examinations, had unfulfilled expectations or were irritated at not being left in peace with their reassurance. These findings will be described in more detail below.

The expert confirmed the participants’ feeling that they were all right

The participants reported that they felt fine, and that they did not speculate much about the results of the health screening in their everyday lives but still kept them at the back of their minds. They remembered both the general message that they had nothing seriously wrong with them and the concrete factors that each of them had paid particular attention to. The participants accorded significance to the fact that the screening was so comprehensive, and said that they did not doubt the results. Some compared the screenings with the routine blood tests that blood donors are given, others mentioned their cholesterol count, since cholesterol was much discussed in the media at that point; and others still their lung function, because they got out of breath playing football; or their liver count because they enjoyed having a glass of red wine. A 37-year-old football referee said it was good to know:

… in your everyday life that you're not about to have a coronary … after all your cholesterol count could easily be too high … .

Participants who, for example, knew they had poor hearing or mobility problems which affected the screening results and which were consequently remarked on, merely nodded in confirmation. Like the other participants they were not the least surprised that the results of the screening were otherwise normal. This is what they had expected since they felt perfectly all right.

Before the screening, the participants had considered themselves healthy. Nevertheless, they appeared almost hurt when asked whether they could not have done just as well without the screening. Their reactions were prompt and sharp. They said that the screening confirmed their own judgement that nothing was wrong. The participants described how, even though there were no grounds to believe that there was anything the matter, it “sinks in more when an expert gives his opinion”. They pointed out that, after all, you cannot measure your own blood sugar or liver count yourself or keep an eye on your blood pressure. Since they were given the opportunity to have a screening they were not going to say no to it, even though they were still quite young and the risk is greater as one approaches the age of 50. A nurse said:

I expected my health would prove good, but you also know that the margins are so small, my blood sugar could easily have been 7 and then what? … even though there weren't any symptoms yet. It's hard to say you can just opt out … and believe in your own judgement … you partly can … but superfluous, no, I don't think it is … .

No more worries

Nice, lovely, a relief, a reassurance were some of the words repeatedly used to describe the feeling that the screening gave participants. The participants said it was good to have got the all-clear, and to get rid of worries concerning fitness, weight, cholesterol level, or family health problems. The participants put great emphasis on this acquired peace of mind. As a cheerful 38-year-old woman put it:

I just thought it would be terrible, I weigh too much and sit on my backside day in day out. I've never had anything the matter, but people in my family have died of cancer or coronaries. I was at no risk or low risk. I think that was lovely, I wouldn't mind going again … .

Participants with a chronic illness, and those who had previously reported being very worried that one or more problems might show up, used the information to reduce their health worries. One woman with disabling neck problems said:

… instead of using energy on speculating about God knows what … and then you find out that actually you're quite all right. I can use that to focus on the things that aren't all right and use my energy there … in other words get rid of my worries about certain things and use my energy on something else.

Some participants stated straight out that now there was no need to make changes and said, for example, that it was all right to go on smoking. The information was also used as an endorsement, making participants feel that they had got good marks for serving and eating the right food, though others remarked on the risk of becoming over-complacent.

Still, the participants said they were aware that, although the screening showed that nothing was wrong, they would not necessarily remain healthy, and there was no guarantee that there was nothing the matter elsewhere. A 37-year-old health worker reflected on this:

… it was nice to find out I was in good health … .I didn't take it as more than that, because even though the tests show you're 100% well, you won't necessarily remain so … .

The participants described how, in agreeing to undergo the screenings, they had been fully aware of the possibility of getting bad results: if something was wrong, they said, it had to be put right, and they had not been afraid of this even though they knew that such news could change one's life from one day to the next. Participants who had been concerned about the impact of stress or their consumption of sugar, pastries, or wine said that they had promised themselves that even if the test results were normal they would henceforth take up a healthy lifestyle.

There is a price to be paid for the reassurance

In different ways, the participants described how there is a price to be paid for reassurance. Insecurity had actually returned for a farmer, who was referred to a specialist due to haematuria. After several weeks of waiting, they concluded that there was nothing wrong.

This was “reassuring”, even though he “had been through the system rather unnecessarily”. He commented as follows on his other normal results:

… but there can be a disadvantage … when the figures are good … you don't do so much to change your lifestyle as you would have done if they'd been bad … .

The question of a false sense of security was introduced by a 51-year-old dyslexic man on a disability pension who has a strong need generally for close contact with his GP. After the health screening he had had many health worries and setbacks:

… it gave me reassurance to be part of the project, where I sort of felt, oh good, now something's happening … now they'll keep a bit of an eye on me … so since then I've felt that this health project has given me a false sense of security … but of course things can arise in the meantime, but … to put it crudely, I expected that I would be kept an eye on … as if it was a form of safety net … .

A 47-year-old woman with many pronounced views about life expressed irritation at not being left in peace with her reassurance. The general formulation in the written answer that “you may wish to use the result of the screening to consider changing your lifestyle” was too know-all in her view, and she angrily contacted her own doctor:

Yes there's this tendency to give people a bad conscience if they drink a glass of wine. I think in reality that's much more dangerous than giving them wine. There can't be any guarantees, but so long as you feel all right and enjoy what you eat, while still using your head, I can't see any reason to change things.

Discussion

Internal validity – did participants really speak out?

To reflect the screened population and to elicit a broad range of information we established a purposeful sample. The participants without a high CRS were selected according to age and sex and their self-rated health to ensure that those interviewed included some who had not reported confidence in their health prior to the screening, as well as those who felt healthy [13], [14]. One interpretation of the participants’ reports of feeling fine after the screening could be that the screening had made a positive fundamental change in their self-rated health. According to Manderbacka, however, self-rated health is a weighted sum of different aspects depending on physical fitness, symptoms, health, psychological well-being, life situation, and lifestyle and it is relatively stable over time [15]. The interviews focused on the perceived results of the health screening and the participants’ interpretation of these.

The participants’ prompt and sharp reactions when asked whether they could not have done just as well without the screening suggested that the provocative question unsettled them. It appeared to express what participants really felt about the screening and to lessen the possibility that they would simply echo the interviewer. The screening confirmed the participants’ feeling of being in good health.

Balancing the positive perception of reassurance with the susceptibility required for change

The participants said they could not have done just as well without the screening. They interpreted the results in relation to their everyday worries, felt confirmed in their own sense of being healthy, experienced relief and reassurance, and were able to free up resources. In accordance with this, Christiansen et al. [16] found that receiving a negative HIV test was a relief. Miller [17] found that many people attend screening programmes for the reassurance. Shickle et al. [2] called this reassurance a benefit, and according to Hollnagel and Malterud [10], [11] participants had shifted their attention from risks to resources. O'Hagan [1], Shickle [2], and Kinlay [3] found that a sense of false security can be encouraged, as in the case of the man who felt protected simply by being involved in the study. As O'Hagan concluded [1], participants who, after further tests, should have felt more secure than anyone else ended up having their subjective feeling of well-being weakened by insecurity about possible future health attitudes. Though the participants felt perfectly all right, they wanted an expert's confirmation. When relatively young people who consider themselves healthy choose to participate in a health screening and thus do not dare rely on their own judgement, one is bound to consider whether the screening offered itself creates an element of insecurity.

The participants without high CRS understood very well that biological processes are in constant flux and not all illnesses or risk factors can be detected by such screenings. Those with risk factors would henceforth aim to live a healthier life. The rest intended in any case to do so and they would at any rate have taken steps if anything abnormal had shown up. The participants’ intentions to take care of their health are not prompted by the health screening alone; participants are in any case conscious of their own behaviour. But if perceived susceptibility to illness provides the impetus to take action, it is questionable whether the participant's good intentions represent a sufficient cue to act [9]. The five-year randomized controlled follow-up trial of the CRS in the Ebeltoft project's intervention groups showed a reduction in CRS [7], indicating that at least a majority did have the impetus to act. Despite this, our related interview-study showed that even those who regard themselves as susceptible to future disease due to elevated CRS can find it hard to maintain initiated lifestyle changes when other results of the screening are normal or interpreted as such, or when stressful circumstances occur in the participant's life [5]. This accords with Frick et al.'s findings that distancing is one way that patients cope with risk [18]. How, then, should those without a high CRS acquire the impetus to take preventive action?

The acquired peace of mind, feeling of relief, and confirmation of the participant's own sense of being healthy is positive. But if the habit of paying attention to and acting on the body's signals is sacrificed in favour of an objective external screening procedure and the importance of one's own ability to assess one's health [10] recedes into the background, a health screening requires adequate follow-up, in which lay knowledge and illness experiences are included [19], [20]. The participant's perception of screening results as well as his or her worries and self-assessed health resources should be considered [10], [11].

Implications

It is positive that screened individuals who are shown not to have a high risk of cardiovascular disease are happy to be confirmed in their own feeling of being healthy and are aware of the limitations of the screening, and that they intend to take up a healthy lifestyle. However, consideration should be given to the risk of creating either insecurity or over-complacency through screening. Balancing these concerns is a challenge for preventive medicine.

Acknowledgements

The authors would like to thank A. Hilligsoe, E. Therkildsen and J. Sorensen for extensive and brilliant administrative assistance and S. Laird and H. Hjorth Petersen for revision of English texts.

Financial support was received from the Danish Research Foundation and Development Fund, General Practitioners’ Education and Development Fund, Danish College of General Practitioners. Conflicts of interest

The authors are aware of no conflicts of interest.