Family Practice Vol. 19, No. 6, 591-595
© Oxford University Press 2002
Understanding risk: women’s perceived risk of menopause-related disease and the value they place on preventive hormone replacement therapy
Department of General Practice and Primary Care, Guy’s, King’s and St Thomas’ Medical School, 5 Lambeth Walk, London SE11 6SP, UK; E-mail: karen.ballard{at}kcl.ac.uk
Ballard K. Understanding risk: women’s perceived risk of menopause-related disease and the value they place on preventive hormone replacement therapy. Family Practice 2002; 19: 591–595.
Received 15 February 2002; Accepted 16 July 2002.
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Abstract |
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Objectives. The aims of this study were to determine women’s perceived risk of menopause-related disease and to understand how this shapes their decisions about taking hormone replacement therapy (HRT) for disease prevention.
Methods. A qualitative study based on analysis of audio-taped semi-structured interviews. The study was carried out in a community setting in Surrey. The participants were 32 women aged 51 to 57 years, registered with GPs in the West Surrey Health Authority.
Results. Women’s ideas about the risk of menopause-related disease exist on two levels; a collective and an individual level. At a collective level, women acknowledge an increased risk of osteoporosis, and to a lesser degree, a risk of heart disease, associated with the menopause. At an individual level, however, based mainly on their family history and lifestyle, women do not generally consider themselves to be at personal risk of disease. Decisions to take HRT for the prevention of menopause-related disease are largely based on individual assessments of risk and, therefore, most women see a limited value in taking HRT primarily for disease prevention.
Conclusions. Whilst women tend to associate the menopause with an increased risk of disease, they do not generally consider themselves to be at personal risk, and in turn, choose not to take HRT primarily for prevention.
Keywords. Disease prevention, HRT, menopause, osteoporosis, risk.
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Introduction |
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Risk has become a key concern in modern, western society, with much attention focused on the analysis, assessment, and management of risk. Recent research has also turned to looking at the ways in which risk is communicated, illustrating that both doctors’ and patients’ decisions about treatment are influenced by the way in which risks are presented.1,2 This does not necessarily mean that we are exposed to more risk than previously, but rather, that hazards and dangers have become more visible3 and are seen as something over which people may exert control.4 Thus a growing number of risks to health have become evident as medical knowledge increases and technology to detect and minimise risk improves. An example of such risk exposure relates to the menopause, where health risks have manifested from improved medical understanding of the role of oestrogen, along with the ability to measure and replace it. It has been argued, therefore, that following the menopause, women face an increased risk of osteoporosis,5 coronary heart disease6 and more recently, Alzheimer’s disease,7 and that HRT plays an important part in the prevention of these diseases. Indeed, recent work has shown that although women primarily take HRT for symptom relief, they are taking it for an increased duration, possibly because of their awareness of the additional protective benefits that the therapy may provide.8
Research, however, has also raised questions about the preventive value of oestrogen.9,10 Moreover, although HRT is often heralded as useful for reducing disease risk, it has also been found to carry its own increased risks, including breast and endometrial cancer11,12 myocardial infarction, cerebrovascular disease and thromboembolic disease.9
In an attempt to determine the risk–benefit ratio of HRT, over the past decade, a number of large clinical trials have been set up,13 the full results of which are not expected for a number of years. Whilst there is clearly a need for clinical trials to provide evidence about the value of HRT, statistically based risk–benefit ratios of HRT are juxtaposed with women’s personally held beliefs about risk. As Williams and Calnan14 suggest, perceptions of risk are intimately bound up with cultural beliefs, moral values, personal feelings and social and material circumstances. Indeed, studies show that social class influences the use of HRT for the prevention of disease, with more highly educated women stating they take HRT for preventive purposes than their less educated counterparts.15
This paper uses qualitative data to examine women’s perception of menopause-related disease risk and how this relates to the use of HRT for prevention (Box 1
).
| Box 1 Background What do we know? Large clinical trials are currently investigating the value of long-term HRT for disease prevention. Women predominantly take HRT for symptom relief. What does this paper add? Women assess the risk of menopause-related disease at both a collective and individual level. At a collective level, women generally acknowledge an increased risk of osteoporosis associated with the menopause, but are less aware of the increased risk of coronary heart disease. At an individual level, based on lifestyle factors and family history, women do not generally consider themselves to be at risk of menopause-related diseases. Women predominantly draw on their individual assessments of risk when making decisions about taking HRT and therefore, do not generally take the therapy primarily for disease prevention.
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Methods |
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Participants and recruitment
A subsample of 32 women was selected from a larger sample of 413 women returning a postal survey. The original sample was randomly selected from women aged 51 to 57 years, registered with GPs in West Surrey health authority. The survey achieved a response rate of 66% after two reminder letters. At survey, women were asked to indicate if they were prepared to take part in the interview stage of the project. A total of 215 (52% of those returning the postal survey) women agreed to be interviewed. In order to achieve a wide range of experiences, purposive sampling methods were used to select the subsample. Women were recruited according to differences in, social class, hysterectomy, use of HRT and alternative therapies and their experiences of menopausal symptoms (Table 1
). Recruitment continued until ‘saturation point’ had been reached, where no new information was being heard.16
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Interviews
Semi-structured interviews were used, each interview covering the same general topics, but also allowing for respondents to elaborate on individual experiences (Box 2
). Having been offered a choice of location for interviewing, 30 women chose to be interviewed in their own homes and two chose the university, where a staff common room was available. All of the interviews were carried out by one researcher (KB) and lasted from 40 minutes to 2 hours, although most were around 75 minutes. | Box 2 General topics covered in interviews with women Beliefs about health in general—current health and expectations for the future Experiences of the menopause and bodily changes Perception of risk associated with the menopause Views about and experiences of using HRT Reasons for taking HRT Views about and experiences of using alternative therapies during the menopause Beliefs about medicines in general Encounters with doctors during the menopause
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Analysis
Each of the interviews was audio-taped, transcribed verbatim by the researcher (KB) and then imported into the software package, ATLAS/Ti 4.1 for Windows. Analysis followed a phenomenological approach, whereby interpretations were drawn from women’s own points of view.17 Thus, the accounts that women provided were taken to represent their beliefs and perceptions. Codes were assigned to all sections of the interview according to a theme or category. The data relating to each of the codes were then retrieved and read, looking for variations and nuances in meanings. Finally, key concepts were identified by repeatedly reading the coded data and then searching for links between each concept. The analysis was carried out by one researcher (KB) and a subsample of the taped interviews and transcripts were listened to and read by two experienced social scientists, followed by discussions about the analysis.
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Results |
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Menopause and the risk of disease
When asked to describe the menopause at interview, women rarely spontaneously included any discussion about the possible increased risk of diseases such as osteoporosis and coronary heart disease (CHD). When asked, however, whether they were aware of any specific disease risks associated with the menopause, almost all women said that they were aware of an increased risk of ‘brittle bone disease’, or osteoporosis. Only one woman volunteered knowledge about the possible increased risk of CHD and even when asked directly, very few women said that they had heard about the association between increased risk of CHD and the menopause.
Living with the risk of menopause-related disease
Although women were generally aware that the menopause was associated with an increased risk of osteoporosis, and were occasionally aware of the risk of CHD, they mostly did not consider themselves to be at personal risk of disease. Operating with this ‘dual consciousness’ indicates that women interpret the risk of menopause-related disease at two levels; a collective and an individual level. At a collective level, women’s assessments of menopause-related risks are primarily formed from statistically based medical evidence, showing that menopausal women per se are at an increased risk of disease. At an individual level, women make assessments of their personal risk of menopause-related disease, drawing largely on two factors; lifestyle and familial tendency. As the following women said:
"I drink four pints of milk a day and have done since I was a kiddy . . . Well I’m not going to get osteoporosis. I know that." (R 20)"I mean who’s to say that you’re going to get osteoporosis anyway? My mother hasn’t got it. I mean she had back pain, but we never did find out if it was in her back or in her head [laughs]. But I mean nothing really has happened to her." (R 32)
While women believed that they could influence their risk of disease by lifestyle changes, this was only considered to be possible within the constraints of their genetic make-up. Where women believed themselves to be genetically pre-disposed to disease, lifestyle changes were seen as providing limited protection. As this woman suggested:
"I’m sure that you are genetically pre-disposed towards some conditions . . . In our family, I don’t think that we have a real problem with heart disease . . . and so I don’t think that that is something that we particularly need to be careful about . . . My mother is 83 and she doesn’t have ongoing things like heart problems or arthritis. We can improve our chances, but I think that some people seem to have an unlucky programme to start with. They seem to be more prone to some conditions than other people." (R 10)
Where a near relative had experienced a menopause-related disease, women expressed concerns about their own risk. This was often assessed alongside other factors relating to lifestyle:
"I was concerned also for osteoporosis, because my mother’s got it, errrmm and I’m not an exercise freak . . . sorry, but I’m not." (R 18)
Although not directly increasing their perceived personal risk, non-family acquaintances suffering with menopause-related diseases, heightened women’s awareness of diseases such as osteoporosis:
"A couple of acquaintances of mine, who were also keen [horse] riders . . . errr they started this brittle bone business and errm . . . admittedly they were a bit older than me but they started breaking all over the place." (R 8)
In addition to having their own ideas about the risk of menopause-related diseases, a few of the women interviewed had been ‘diagnosed’ by the doctor as being at risk, even though they themselves had previously not been concerned:
"The blood tests showed that some months I was definitely menopausal and other months I showed no signs. But they [doctors] weighed it up and said, well looking at this [hormone levels] and looking at your build (because I was very thin) . . . they said that I would be an ideal wheelchair candidate if I didn’t go on HRT." (R 13)
Having been medically ‘diagnosed’ to be at risk of osteoporosis, often supported by results of a bone scan, women’s previously held perceptions of risk were re-evaluated in the light of medical knowledge.
Use of HRT for prevention
While women acknowledge the increased risk of menopause-related disease at a collective level, they predominantly draw on their individual assessments of risk when making decisions about taking HRT for prevention. Having based their perceptions of risk on familial tendency, lifestyle, and occasionally being given a medical diagnosis, most women believed that they were not at risk of menopause-related disease. Consequently, they were also unlikely to take HRT primarily for this purpose. For most women, there seemed little sense in taking HRT, which in itself carried potential risks, when they did not believe that they were going to develop diseases such as osteoporosis. As this woman stated:
"There’s no point in taking tablets [HRT] unless they’re going to alleviate symptoms . . . well symptoms that you can see . . . Well alright that’s a short sighted view, but to take them with all the side effects. I mean there are side effects . . . there are all sorts of scares about, is it going to increase your likelihood of cancer, is it going to increase this that and the other? Errm and just to take it for brittle bones, when you can do things with your diet and your general activity . . . you can probably sort that out." (R 25)
Even when women did perceive themselves to be at risk of menopause-related diseases, they considered the possible side effects associated with HRT. For around half of these women, rather than being seen as reducing the chances of future ill health, HRT was seen as replacing one risk with another. Weighing their self-assessed risk of disease against the risks of HRT therefore, often resulted in a decision not to take the therapy:
"I mean the heart problems in our family are rife . . . and so is cancer. And they are the main two things that people die of anyway and so if you can take something that can protect your heart, then ok you might have a good heart but you’re going to die of something else. I don’t feel safe taking HRT, I don’t think it’s a safe product." (R 2)
All of the women who had been medically ‘diagnosed’ as being at risk of menopause-related disease, took HRT and said that they planned to remain on it for the rest of their lives. Although they expressed concerns about the risks associated with HRT, the risk of menopause-related disease appeared to be more salient to them. The following woman had been diagnosed as being at risk of osteoporosis following a bone density scan:
"No, no I don’t see that I will stop it [HRT]. I mean what you read sometimes makes you feel, oh dear this is a worry to be on it, but the people that I have spoken to . . . consultants etc. who have spoken to me about it, I feel have got to know and I would take their advice . . . Regardless to what’s been read." (R 24)
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Discussion |
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TopAbstractIntroductionMethodsResultsDiscussionReferences |
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Although the methodology employed in this study does not provide a representative sample, by selecting women purposively from a larger sample, based on characteristics such as social class, previous hysterectomy, and use of HRT, a range of experiences have been included.
With an increased medical knowledge about oestrogen, and the ability to replace hormones during and after the menopause, the risks of menopause-related diseases have become more visible to women. Although the risk of disease does not appear to be paramount to women’s discussions of the menopause, they mostly acknowledge that there is an increased risk of osteoporosis, and occasionally CHD, associated with the menopause. This overall awareness of disease risk at a collective level may help to explain why women who take HRT primarily for symptom relief are remaining on the therapy for a longer duration.8
However, whilst accepting this increased risk of disease at a collective level, based on individual assessments of risk, the majority of women do not consider themselves to be personally at risk of disease and therefore see little value in taking HRT primarily for prevention. Moreover, even when women do perceive themselves to be potentially at risk of disease, the risks associated with HRT often prevent them from taking the therapy. Women, who have been medically ‘diagnosed’ as being at risk of disease, however, appeared to favour using preventive HRT on a long-term basis.
Considerable resources have been invested in large clinical trials, which aim to provide definitive answers about the risk–benefits of HRT. Implicit in this work is the assumption that women’s decisions about taking HRT are based on risk assessments made at a collective level, where medical evidence indicates the risk of disease to menopausal women per se. This study, however, has shown that whilst women do hold beliefs about the risk of menopause-related disease at a collective level, risk assessments made at an individual level, tend to be used to when making decisions about taking preventive HRT. Whilst clinical trials provide a better understanding about the potential value of HRT, women’s individual risk–benefit assessments play an important part in their decisions about taking HRT for disease prevention.
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Acknowledgments |
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I would like to acknowledge the help of my supervisors, Dr Mary Ann Elston and Dr Jonathan Gabe, and all of the women who kindly agreed to take part in the research. This study was carried out as part of a doctoral thesis, funded by the Economic and Social Research Council.
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References |
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