Long-term impact of elevated cardiovascular risk detected by screening

Abstract

Objective. To explore how persons with an elevated cardiovascular risk score (CRS) balanced health-related advice against the life they wanted to live or were able to live. Setting. 2000 Danes aged 30–50 were invited to participate in a health-screening project in general practice. Screenings were conducted at baseline and after one and five years, and included among other screening procedures a calculation of CRS (see Figure 1). Design. Participants with an elevated CRS were asked to participate in a qualitative semi-structured interview. They were selected by stratified purposeful sampling reflecting variations in age, sex. and perceived health. Subjects. Nine men and five women aged 33–50 years. Theoretical frames of reference. Bandura's theory of self-efficacy and the Health Belief Model's consideration of individuals’ cues to act against a health threat supported analysis. Results. Being informed about an elevated CRS had a considerable impact on the informants. They initiated significant lifestyle changes though only to a limited degree when such changes would affect their quality of life adversely. In cases where other results of the multiphasic screening were normal, interpreted as such, or if there were stressful circumstances in the informant's life, the elevated CRS receded into the background. Interpretation. Doctors, who inform individuals about the impact of risk factors, need to know that the consequences and health advice are not always interpreted by laypeople as supposed by the medical culture.

• General practice
• lifestyle
• multiphasic screenings
• qualitative research
• risk factor
• self-efficacy

As general practitioners (GPs) we have recognized that doctors may focus unduly on the possibility of preventing disease [1] and therefore fail to take account of the possible harm of intervention [2]. We thus wanted to learn more about how those who are invited to a multiphasic risk factor screening understand the purpose of the health screening and its potential impact. We carried out a study focusing on why those invited agreed or declined to participate, and looked at how the health screenings were experienced. The study was based on accounts from individuals who had been invited to a multiphasic risk factor screening in general practice (Figure 1). Among the screened individuals [3], [4] who at baseline were advised of an elevated or high cardiovascular risk score (CRS), 20% did not attend the second screening and as GPs we speculated about how the knowledge of risk impacted on people's lives.

Figure 1.  The Ebeltoft project: A multiphasic broad-spectrum screening project.

The Health Belief Model (HBM) [5], [6] focuses on an individual's estimate of the threat of illness and the likelihood that personal action will reduce that threat. The “action” element is suggested to be the person's perception of the benefits of carrying it out minus the barriers to doing so [5]. Bandura's theory of self-efficacy [7], [8] has been used to elicit the HBM's “barrier” component. Self-efficacy is the conviction that one can successfully execute a desired behavior [8] and may reduce the HBM's barriers [9].

The aim of this paper is to explore how individuals with an elevated cardiovascular risk score discovered by multiphasic screening balanced health-related advice against the life they wanted to live or were able to live.

Material and methods

We conducted a qualitative interview study 4 years after screening baseline. A stratified, purposeful sample of 14 informants (5 women and 9 men) aged 33–50 years was established. The rationale of a stratified purposeful sampling is to select information-rich cases whose study will illuminate the question under study, and to capture major variations [9]. Our sample reflected variations according to age, sex, and perceived health among those identified with an elevated CRS at baseline and again after one year (see Figure 1).

The first author, who began working as a GP in Ebeltoft two years after initiation of the screening, conducted all the audiotaped interviews and the main analysis. Eight informants were interviewed in their own homes and six at the researcher's office at the central health clinic in Ebeltoft. At the time of the interview none of the informants was listed as the interviewer's patients. On average the interviews lasted 72 minutes and dealt with issues concerning why the informant participated in the screening, experiences and findings from the screening, assessment of his/her own health, views of health promotion and screening, and opinions on the opportunity of a consultation with his/her GP.

A few days later, the audiotape was replayed and the sections to be transcribed were noted. On average 80% of each interview was transcribed while the remainder was summarized. A summary of each interview was made and read by all to get a sense of the data as a whole using Malterud's principles [10]. The interviewer read through each interview and selected parts concerning the informants’ thoughts, attitudes, and behavior. She then read through these parts again to get an overall sense of the different views expressed, identifying and coding parts of the text without using predefined categories. These coded parts were then reread and compared with the original recordings and the entire transcriptions. The categories were corrected for overlap, units containing too little information were omitted, and connections between related units were established. Finally, the overall message of the interviews was condensed and expressed in more general terms. The final categories were developed through negotiations with the other authors, in a descriptive and mainly data-based editing-analysis style [11]. Perspectives from the HBM and self-efficacy theories [7] inspired us during the interpretation, without functioning as templates for the categories.

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

Results

The knowledge of an elevated CRS had a considerable impact on the informants. They initiated significant lifestyle changes though only to a limited degree when such changes would affect their quality of life adversely. In cases where the other results of the multiphasic screening (see Figure 1) were normal, interpreted as such, or if there were stressful circumstances in the informant's life, the elevated CRS receded into the background. These findings will be elaborated in more detail below.

Awakening

The news of belonging to a risk group alarmed the informants, even though they were aware in advance that a family history of heart disease indicated a hereditary predisposition; or realized that they weighed or smoked too much. A businessman with diabetes said:

It was a shock – I thought, thanks a lot, this is a load of crap, I can't do anything about it…. (J2-24)

Others were surprised that the result was so pronounced because they did not eat much fattening food or had no symptoms and had hoped that everything was normal. The written feedback sent to the participants was more definite in its advice than the information they received by other means. The concrete results of the health screening made the need for lifestyle changes more definite, as expressed by a 52-year-old female given early retirement for health reasons:

…when I'd been to see my doctor there might have been something on the screen, but you only hear what you want to hear … well, it [the health examination] means that you have in black and white what is wrong with you or not wrong with you…. (J2-10)

Action

The informants were positive about the chance of initiating prompt intervention to deal with risk factors, but there was a broad range of opinion as to what consequences should follow from the report on the screening. All of them had formed some view of the suggested lifestyle changes. Some had taken note of the results but not done anything further. A busy contractor stated:

I must admit that I have a beer once in a while and I smoke and eat well, but I have to say that since it doesn't bother me in my daily life I haven't really thought of doing much about it…. I'll be damned if I'm going to live off carrots …one's always allowed to hope things will get better. (J3-2)

Others were a bit more active, like this 37-year-old man:

Now I eat a clove of garlic a day, which must be a good thing, so things aren't so bad now. (J2-13)

Several made radical changes and put a lot of effort into reorganizing their diet, contacting dietitians, involving their spouses and cooking different types of food for the different members of the family. They hoped to improve their cholesterol count and lose weight and had started exercising.

Yes, the dog was also a help there. (J2-6)

The pain limit

Typically, the informants settled on what seemed most simple, and steered away from what they disliked – some had never been keen on exercise, while others just did not like fish. There was a limit that determined how far people would go to reduce risk factors. Some set the limit at changes that would radically alter their way of life. Others made determined and long-lasting efforts to change their lifestyle before deciding either that they did not want to continue, or that they were not able to go any further. Their life quality was a competing factor. A man whose wife had a life-threatening disease said:

…my life was better when I smoked, took five minutes off to sit and relax…. I couldn't sit still [when I gave up smoking], I couldn't relax enough to drink a cup of coffee with my wife. I've really thought about this a lot; we only live once, I've almost made up my mind that I'm going to take a gamble and smoke rather than torment myself…. (J3-14)

Other reasons for giving up were: resignation because one quickly slips back to what one used to do; business or practical circumstances that absorbed all the informant's energy; difficulties in saying no to a beer and a smoke with customers; poverty; or simply the fact that it was expensive to live that way. Difficult life circumstances sometimes meant that the high risk of cardiovascular disease shrank in significance in people's consciousness. For example, consider the above mentioned man and a woman whose daughter had been a drug addict:

… this thing is a mere trifle. (J3-14) … it wouldn't take many more family problems before you'd start puffing away regardless, you wouldn't give a damn what you were eating, it wouldn't matter at all…. (J2-7)

When low priority is given to a high risk

Seeing the behavior of those around them could weaken the informants’ resolve. The threat seemed less serious if several people in their immediate circle had also been told that they were at risk. The fact that there were advocates of healthy living who became ill anyway and died young, or people who messed up their bodies but lived a good long life, cast doubt on the usefulness or necessity of initiating lifestyle changes.

The clear message that they had an elevated risk of cardiovascular disease was seen in the context of the other results of the screening, which, if they proved normal, were often considered more important. The diabetic man felt:

It was nice to have it confirmed that I'd taken good care of my ears. (J2-24)

And a 45-year old woman found:

It was great to get the “all-clear” on a whole lot of things I'd been wondering about. I wasn't in quite such bad shape as I'd thought. (J3-1)

Smokers without exception had feared that their habit would be commented on. This was indeed the case, since the extent of their smoking was reflected in their CRS. When their lung function was tested it was usually almost normal and this was a great relief to informants and made them somewhat less receptive to the idea of reducing their smoking.

Some informants made their GP examine whether their efforts had had any effect. Others were content to hope that they had, or to wait until the next planned health screening, which they were not even sure they would take part in. Some expressed anger towards the doctor or the project, and felt they had not received sufficient backup when feelings of powerlessness had taken over, when the changes initiated had proved unsuccessful, or when they clearly needed to make further efforts.

Several indicated that they thought more about it right after the examination than at the time of the interview. They did not think regularly about the result of the health screening or the lifestyle changes proposed. Nevertheless, they remembered in broad outline what the results were and indicated, like the busy contractor, that:

… it would always be at the back of my mind. (J3-2)

Discussion

Despite the gloomy prediction that informants had a high risk of cardiovascular disease, there were limits, as found in other studies [12–15], to the extent to which they would or were able to make efforts to normalize the results of laboratory tests at the expense of quality of life.

Methodology – the personal element

The study was designed to elicit a broad range of information from individuals who had been informed of having an elevated CRS. The informants were asked about their health history throughout their lives since this might affect the way in which they dealt with the information [16]. The informants were selected according to perceived health to ensure a balance in the respondents between those who rated themselves as fairly and very healthy.

It would have been interesting to ask those who were identified with an elevated CRS and yet dropped out after one screening why they had declined, but for ethical reasons they could not be contacted. The interviewed received the same message twice and their responses serve to give us an impression of the extent to which the recipient is influenced mentally and the kinds of long-term reactions that such information may elicit. A person who is willing to be examined time after time, who follows advice on lifestyle changes, and accepts intimate questions from a doctor attached to one of the health clinics in the research area may be equally obedient in giving answers that will probably please the interviewer. Others may have grasped the opportunity to give vent to frustrations. The broad spectrum of views put forward, and the arguments given for setting limits to the changes they were prepared to undertake, indicate that the informants were conscious of and honest about their actions. Both the screening results and the interview method attached importance to the personal element and may have encouraged them to go into detail and refer facts.

We deliberately sought the long-term opinions of our informants, realizing that the time gap might very well have changed their understanding of what they had really been told and the meaning of this.

A new level of awareness

As elicited in other research projects, the written feedback may have confirmed what the informants had known for a long time from family history [13], [15], [17], or from concrete evidence [13], [14]. Like other screened individuals [13–15] they were astonished by the CRS, but they took heed of the screening results to varying degrees, and on the basis of their new experience developed new attitudes. The concrete and personal element [18] was crucial, and the informants may have interpreted the high risk of a coronary in “black and white” as a threat that led them to act [5], [6] but this was influenced by several issues. Accounts of people successfully surviving an unhealthy lifestyle, stories of catastrophic asceticism, and the fact that many others have high CRS suggest to informants that their situation is not unusual [14], [16] and reduce the incentive to alter their behavior. After all, the informants confirmed the theory of self-efficacy by demonstrating self-determination [7], [8] even when it might be controversial. The changes and initiatives that were actually initiated could be interpreted as health resources, according to Hollnagel & Malterud [19].

At the same time, they also gave the impression that screening can lead to a new level of awareness as to how much intervention one is prepared to put up with. In considering the extent of the lifestyle changes, they sorted out the advice given, set up their own “pain limits”, and also experienced powerlessness about reaching or maintaining the goals. Bandura [8] found that repeated failures lower the efficacy expectation, which increases the barriers to act. If the incentive to act is reduced and the barriers increased one must consider whether screening might produce the opposite of the desired effect. After being jolted into undergoing a new process of experience and decisions, those screened may subsequently have been cemented to an unhealthy lifestyle, albeit with some minor changes.

Attention to self-efficacy in the consultation

When screening for risk factors is offered, it is important to bear the informants’ experiences in mind. Not everybody succeeded in reaching or maintaining the goals set [18]. Doctors, who inform individuals about the impact of risk factors, need to know that the consequences are not always interpreted by laypeople as supposed by the medical culture [20].

We, in accord with others [15], [18], [21–23], consider that the results need to be interpreted and negotiated through a consultation between the person screened and a doctor who knows the person in question. A reflexive attitude is necessary when changes in people's “daily regime” are to be introduced, since the responses will be influenced by people's life circumstances and different attitudes toward quality of life. Instead of leaving a screened person with a sense of fiasco one should underline the screened person's self-efficacy and approach common ground for the different alternative actions and their consequences.

Key Points

Cardiovascular screening may cause confusion and anxiety, and shape the attitudes and actions of the participants in different ways.

• Elevated cardiovascular risk was experienced as alarming. Lifestyle changes were initiated but limited if quality of life was affected adversely.

• Cardiovascular risk was given less attention when stressful circumstances occurred in life, or if other results were normal.

• In supporting people's self-efficacy, doctors must be aware of individuals’ “pain limits” for lifestyle changes and prevent experiences of powerlessness.

Financial support was given by: the Danish Research Foundation and Development Fund, the General Practitioners’ Education and Development Fund, the Danish College of General Practitioners’ Sara Krabbe Scholarship, the Danish Heart Foundation, the Danish College of General Practitioners’ Lundbeck Scholarship, the Danish College of General Practitioners’ Magda and Svend Aage Friederichs’ Scholarship, and the Medical Women's Danish Association.