`I'd rather go and know': women's understanding and experience of DEXA scanning for osteoporosis

Abstract

Objective  To explore women's knowledge and understanding of osteoporosis and of dual energy x‐ray absorptiometer (DEXA) scans; the factors influencing their decision to have a scan and their experience of undergoing a DEXA scan.

Design  In‐depth interviews (using a topic guide) were carried out with 12 women [before a DEXA scan and after they had discussed the results with their general practitioner (GP)] and with three women who chose not to have a scan.

Setting  Stoke‐on‐Trent, Staffordshire, UK.

Participants  Women who responded to a primary‐care based questionnaire were purposively selected for interview.

Results  The women interviewed had varied levels of understanding of osteoporosis. For the majority of participants the scan was an overwhelmingly positive experience, despite some women's negative expectations. Findings are also explored in terms of the influences on women's decision‐making about whether to have a scan and the concept of `knowing' one's risk status.

Conclusions  The main implication for primary care is how to improve women's understanding of osteoporosis and DEXA scans in order to promote the strategy of scanning high‐risk women.

Introduction

This paper reports findings from a qualitative study of women's understanding of osteoporosis and their understanding and experience of dual energy X‐ray absorptiometer (DEXA) scans. It aims to inform the debate on patient involvement in decision‐making about health‐care and on patient perceptions of services.

Definition and outline of the problem

Osteoporosis is characterized by loss of bone mass resulting in an increasing fragility of bones and risk of fracture. One in three women will sustain an osteoporosis‐related fracture during their lifetime ¹ and demographic changes mean that the number of fractures is likely to rise substantially over the next 50 years ² resulting in increased economic and personal costs. ³ Osteoporosis remains therefore a significant health problem, yet very little research has been carried out into women's perceptions of, and attitudes towards, bone density scans, which are, at the current time, the `best available predictor of future fracture risk'. ⁴

Osteoporosis is often asymptomatic, and therefore one challenge for public health is to identify `high‐risk' women. Current recommendations are for women with clinical indicators of low bone mineral density (e.g. premature menopause) to be offered a DEXA scan to assess the need for treatment.

Bone‐density measurement

The DEXA scanning measures bone mineral density, with results indicating the likelihood of sustaining future fractures. It can also help the doctor to make a decision about treatment; ^{1 , 5} encourage women to use, or make decisions about, treatment or to implement lifestyle changes; ^{1 , 6} , 7, ^–8 or help in `the complex clinical decision‐making process involving patient and doctor'. <sup>6</sup> The debate on `medicalization' of the menopause, which presents menopause as a disease in need of treatment, is relevant here. This biomedical approach encourages doctors and women to view current health status in terms of their future health risks ^{9 , 10} and the use of bone density scans may contribute to this. Ethical issues are raised concerning the extent to which offering scans to predict future health status blurs the distinction between health and illness and plays on women's fears of ageing in a society which values youth. ^{10 , 11} Women's decision‐making in this area is therefore complex and dependent on context.

Awareness and understanding

Despite claims for increased patient awareness of osteoporosis, ⁶ previous survey‐based research has found `inadequate knowledge' of risk factors and preventative strategies relating to osteoporosis. ¹² Research into screening for other conditions suggests a more general pattern of misconceptions, as evidenced in the fields of breast cancer, ^{13 , 14} and cervical cancer. ¹⁵ A notable exception to the survey‐based literature is a recent study which found that very few women spontaneously raised the topic of osteoporosis during an in‐depth interview on their general health and health risks, and did not feel that osteoporosis was relevant to their lives. ¹⁶ The women felt that there were many more important issues, for example, work and family. They placed personal health in this context, focussing on what was necessary for their present lifestyle, rather than thinking about future possibilities.

The aims of the study described here were therefore to explore (1) women's understanding of osteoporosis and DEXA scanning, and (2) women's experience of DEXA scanning.

Method

This research was carried out as part of a wider survey‐based investigation of the usefulness of DEXA scanning in a primary care population (described elsewhere). Ethical approval was obtained from North Staffordshire District Health Authority's Ethical Committee.

The invitation for a DEXA scan

Results of the previous survey were used to select a sample from a group of respondents who had agreed to further contact. All those with five or more self‐reported clinical indicators for low bone mineral density (BMD), and a 50% random sample of those with two to four, were offered a DEXA scan by letter. A leaflet containing basic information on the procedure (Fig. 1) was enclosed, which included a diagram and reassurances to participants about the non‐invasiveness of the procedure. (The information leaflet was adapted from information available on the website of the Arthritis Research Campaign, http://www.arc. org.uk.) Although we were interested in exploring women's existing knowledge and understanding of DEXA scans as part of the interview it was clearly important to provide enough standard information to enable the women to give informed consent to having a scan. In addition, women were able to discuss their decision with their general practitioner (GP), the researchers and/or the technician prior to the procedure. The researcher observed a DEXA scan so that any questions about the physical procedure could be answered. It may have been the case that the information provided to potential participants was not acceptable or was not detailed enough to enable them to make an decision about having a scan. The scope of this study did not enable us to explore, for example, the limitations of the information sheet.

Figure 1.

  Information sheet sent to potential participants.

The sample

Women indicated their willingness to have a DEXA scan and/or an interview on a reply slip. It was anticipated that some women who were offered a scan would choose not to proceed. The understanding of osteoporosis and attitudes towards scans and treatment among these women was felt to be extremely important.

Of the 94 women invited for a DEXA scan:

•  68 agreed (of whom two subsequently refused and one did not attend)

•  17 refused

•  nine could not be contacted

Of the 65 women who completed a scan:

•  14 had been selected for interview

•  12 agreed and completed interviews

•  one refused on contact

•  one did not attend and subsequently withdrew from the study.

Of the 17 women who chose not to have a scan:

•  14 were also unwilling to be interviewed

•  three agreed and were interviewed.

The women selected to be interviewed covered a wide range of potentially salient dimensions, such as age (age range of those interviewed was 33–81), family experience of osteoporosis and the number and type of risk factors.

The interview

A topic guide was used to ensure coverage of relevant topics (2, 3, see Figs 2, 3 and 4). The topic guide was created by the research team following background reading in the area and was designed to address the specific areas to be explored in the study. The interviewer attempted to maintain flexibility within the interview, starting with quite general questions, enabling participants to raise issues and then following these up. The first interviews provided in‐depth information about the women's understanding of and attitudes towards osteoporosis, DEXA scans and treatment recommendations. The DEXA scans were carried out after the first interview and reports (by a consultant rheumatologist, ABH) sent to the women's GPs. Women who had a scan were interviewed again after they had discussed the results of the scan with their GP, approximately 4 weeks later. The second interview took place at the woman's chosen location, usually their home. Interviews were tape‐recorded (with permission) and transcribed.

Figure 2.

  Topic guide for pre‐scan interview.

Figure 3.

  Topic guide for no scan interview.

Figure 4.

  Topic guide for post‐scan interview.

It is possible that the hospital setting of the first interviews may have caused women to over‐emphasize medical aspects of their accounts. However, the interviewer stressed that she was not medically qualified. Additionally, second interviews and interviews with those not having a scan took place in women's homes which may have balanced this.

Some of the questions in the interview asked women about their understanding of osteoporosis. This raised more specific questions from the women about osteoporosis which the interviewer did not feel it was possible to answer during the interview. As the interviewer was not a health‐care professional and in order to address these questions and ensure that all participants received some standard information about osteoporosis, the women were given relevant leaflets.

Template analysis ¹⁷ was used to identify themes and subthemes occurring in the data. This involves `coding' the textual data using a list of codes representing themes within the data. The codes can be a combination of those identified before data collection and those arising from the researcher's interpretation of the data. It thus facilitates a structured approach to data analysis while also allowing openness and flexibility. Coding of transcripts was carried out using a qualitative data analysis package (NUDIST 4; Qualitative Solutions and Research Pty Ltd). A descriptive account of these themes is given below.

Results

Descriptions are given of women's understanding of osteoporosis, their understanding and experience of the DEXA scan, their accounts of how they made a decision about the scan and their understanding of and reaction to the results. In order to contextualize these descriptions, brief details of the ages, jobs and scan results of the women who were interviewed are given in Table 1.

Table 1.

  Profile of participants

In the following descriptions, ID numbers have been used to ensure anonymity. Other information in brackets indicates the participant's age, whether the interview took place `pre‐scan' or `post‐scan' or `no scan'. Participants' words have been changed only where this clarifies the meaning (indicated by square brackets).

Understanding of osteoporosis

Three non‐mutually exclusive concepts were identifiable from participants' ideas about the nature of osteoporosis:

(1) Deterioration of the bones.

Women used words such as `degeneration', `thinning' and `ageing', with an implication of an on‐going process:

`Well, erm I think it is the thinning of the bones isn't it and as you get older, especially in women, that erm, the bones start to deteriorate, and is it to do with a lack of calcium?' (510, age 50, pre‐scan)

Women drew on their knowledge of other conditions in their descriptions of osteoporosis, particularly where that condition had personal salience. The following quotation is from a woman whose husband suffered from Paget's disease:

`Well I think it's like the deterioration of the bone isn't it? It isn't like Paget's disease is it, the softening of the bone? …. I should, I should think, I think it should be deterioration of the bone. It is a deterioration of the bone isn't it, it must be?' (597, age 81, no scan)

Similarly, this participant's father suffered from arthritis, which she saw as similar to osteoporosis:

`You know, you just put, they. I just put it down as some form of arthritis, you know the osteoporosis, the arthritis, I mean they are probably all the same but…. (Int: So has anyone in your family got osteoporosis?) Not as I know of. I don't know because they all say me dad's got arthritis but erm if it is muscle wasting and bone wasting, you could say he's got it, because I mean his two knees are no good, so it's like that's bone ain't it where your knees are? I know so I couldn't say if he's got it or not.' (997, age 40, pre‐scan)

(2) Weak or brittle bones.

This was mentioned as both a description of osteoporosis and a consequence of the deterioration or ageing of bones described above:

`All as I understand, I don't understand medical terms, but I think it's an ageing of the bones, and the bones can become fragile, and become brittle and they easily break.' (10, age 44, pre‐scan)

`Well are they weak like? Like if yer just trip up they break or something like that?' (605, age 79, no scan)

(3) Wear and tear of the bones.

This `mechanical' term was used by two respondents both in their account of what osteoporosis is and in their descriptions of their own health problems:

`I mean it's probably friction, it's just general wear and tear of the body bones…. I don't know if the wearing of the knee joints is osteoporosis or rheumatism or you know arthritis.' (1001, age 67, no scan)

The physical effects of the condition mentioned most frequently were pain and broken bones. Participants' accounts recognized the idea that these breakages could happen very easily and were not like ordinary breakages. The concept of not being able to tell whether someone had osteoporosis was also apparent in some accounts:

`But I wouldn't be able, I wouldn't be able to tell if somebody had got osteoporosis. Probably not. I don't think you can, can yer or can you look at somebody and say “Oh they have got osteoporosis” I don't know (laughs).' (997, age 40, pre‐scan)

Participants' accounts often linked the physical effects of osteoporosis with those of other conditions, for example, arthritis, particularly where they knew someone with that condition. Previous studies have found that knowledge of, and interest in, osteoporosis was higher in women who knew someone with the condition. ^{12 , 16 , 18} In the current study, those participants who knew somebody with osteoporosis gave more detailed descriptions of the physical effects and consequences of the condition, including descriptions of shrinking, disability and the need for operations and treatment. One woman's mother and the mother's five sisters had all been diagnosed as having osteoporosis, as had her brother:

`… they all seem to shrink, they have all sh… they have all gone down, especially my aunt who was sort of five foot ten, and now she is struggling to reach about five foot five … Erm you know, and me mum has shrunk as well, and my granddad…And now it is beginning, but my brother's got it as well… He's come down from about six foot, I think he was six foot and half an inch, but he's somewhere around five foot eight and he's 48.' (962, age 38, pre‐scan)

Although women's understanding of osteoporosis incorporated key concepts such as thinning and deteriorating bones, it is important to note that the condition was not fully understood. Some participants were unclear about the difference between osteoporosis, which affects bones, and osteoarthritis (wear and tear), which affects joints.

Understanding of the DEXA scan

The majority of the participants had a basic understanding of the purpose of the DEXA scan, mentioning concepts such as showing whether the bones are `thick or thin', measuring `the density of the bones' or `drawing a picture of your bones'. However, many participants prefaced their responses about the nature of the scan with doubts about their knowledge. The women linked their ideas and expectations about the scan to their knowledge of other procedures, for example X‐rays, in the same way that knowledge of other conditions was linked to knowledge of osteoporosis.

Experience of the scan

The scan was an overwhelmingly positive experience for those interviewed, with the words `relaxing' and `comfortable' being used to describe it. The technician features strongly in the very positive accounts, for making participants feel comfortable, explaining what she was going to do and taking their individual needs, fears and abilities into account. One woman commented that getting a parking space at the hospital was more trouble than the scan itself.

This positive experience was, for some participants, in contrast to their expectations. Participants expected the scan to take longer, to involve `more machinery', to be more like an X‐ray and to be `more clinical'. Expectations were formed mainly by comparison with personal experience of other, similar, investigations, for example, X‐rays, MRI scans and, in one case, a private DEXA scan 5 years previously. One participant formed her expectations from seeing a scan of some type being carried out on a television programme. Another participant had received incorrect information from an acquaintance and therefore found the experience better than expected.

It is interesting that only two of the participants mentioned the information sheet sent to them as part of the research project when describing what they thought would happen during a DEXA scan. This supports findings in studies of screening for other conditions, where women were `surprised' at the procedure despite having received information leaflets.

Overall, women's experiences of the DEXA scan were positive, despite expectations to the contrary. Women had a very basic understanding of what the scan would involve, formed mainly from their knowledge of other procedures or from `lay' sources. Despite this, the majority of the women made a clear decision about whether or not to have a scan and the influences on that decision are described more fully in the following section.

Decision‐making about the scan

Participants' decision‐making about having a scan can be described in a similar way to the `spheres of influence' described by Marmoreo et al. ¹¹ These authors identified four major spheres of influence on women's decision‐making about hormone replacement therapy (HRT) – interpersonal relationships, internal influence, consequences resulting from a decision and external or societal influences. In the present study the spheres which emerged were identified as:

(1) the influence of others (Marmoreo et al.'s `interpersonal relationships'), including family, friends and GP; which was closely linked with;

(2) internal influence, arising from a woman's feelings about `knowing' her risk status, which was linked with;

(3) the purpose of `knowing' (Marmoreo et al.'s `consequences resulting from a decision') including the increased awareness that comes from `knowing' and being able to do something with the result.

There did not seem to be much evidence in this group of women of external influences, for example, ageism and sexism (the fourth sphere). The three spheres were very closely linked with each other (referred to by Marmoreo et al. as `dynamic interplay' between the spheres), therefore spheres (1) and (2) will be discussed together.

(1) The influence of others and (2) internal influence or `knowing'

Only two participants mentioned talking to their doctor specifically about the invitation to take part in the research. The first of these talked to her doctor about it during a routine appointment, and the doctor suggested that it was `a good thing', which the participant interpreted as being connected with finances. One participant who was unsure about whether or not to have the scan, described the hypothetical influence of her doctor:

`See let's put it this way, if doctor had said to me “Right”, for some reason, I'd got have it, then I'd have it. But because I have got to make my own mind up, I can't. Now do you understand?' (605, age 79, no scan)

The influence of a woman's doctor has also been identified in studies of women's decision‐making about HRT. ^{10 , 19}

The participant above was unusual in her articulation during the interview of the dilemmas in her decision‐making. All of the other participants, including those who chose not to have the scan, were quite clear about their decision. She began the interview in the position that she did not want to have a scan, then changed her mind during the interview. (We agreed that I would telephone her a week after the interview in order to give her time to make the correct decision for her and she decided then against having one.) The two main themes running through her decision‐making were that of `potential embarrassment' (if she could not wear her hearing aid) and `knowing'. The concept of `knowing' appeared to be more problematic, with the participant moving from `wanting to know', to `knowing as something to worry about' (and seeking confirmation from her husband about that aspect of her character) and back to `wanting to know'. The complexity of the decision‐making process for this participant is demonstrated in her interview, and included the influence of her family, and the conflicting feelings she has about `knowing' her status.

For the two other participants who chose not to have a scan, but agreed to take part in an interview, the main reason for not having a scan was the perceived health risks, linked to radiation. In one case the woman's partner's fears of radiation were given as a reason. The only participants who mentioned the direct influence of their husband/partner on their decision‐making were the three who chose not to have the scan. Other participants were more likely to mention their family as an indirect influence on their decision, for example, to benefit their children in the future or to set a good example. One participant's mother and sister had both died from leukaemia and she had very strong feelings about helping research because of that. The following extract demonstrates the place of health in one woman's life in relation to other aspects of her life, in this case family:

`It's just one less thing put out, put out of my mind, you know with having the kids on my own. Er, my health is a big issue now because I've got to look after what I've got basically.' (217, age 33, post‐scan)

This participant felt that her health had become more important following her recent separation from her husband as she had sole responsibility for the children. Women's concerns about health and ideas about what was salient for them were mediated by their family's needs. One participant, for example, had read up on strokes, following her husband's stroke, and was now reading up `on cancer and chemotherapy', following her daughter's diagnosis with breast cancer (2, aged 56, pre‐scan).

The feelings expressed by these women are similar to those in the study described previously, who felt that osteoporosis was not really a central issue in their lives. ¹⁶ Family responsibilities and experiences appear to play a role in women's decisions about having a scan and in their feelings about osteoporosis in particular and their own health in general. The contextual nature of women's decision‐making is also highlighted in studies of HRT use. ^{10 , 19 , 24}

In the present study the influence of friends and workmates on participants' decisions about whether to have a scan, however, appeared to work in an opposite way to that of family. Where participants mentioned talking to friends or workmates about being invited to take part in the research and have a scan, their reactions are presented in opposition to the participant's own views and feelings. This is epitomized in the idea of `knowing'. Participants describe themselves as being the sort of person who `wants to know' which is reflected in their desire to know about their health status:

`I'd rather go and know than, than not go. With my outlook on life I'd rather know than not know.' (2, age 56, pre‐scan)

`I'm happy to have a DEXA scan. I'm also happy to know if, if it detects anything, I'm happy to know, good or bad, even if anything can or cannot be done I would rather know than not know…. I still would rather know because that is my way, that's the only way I deal with everything in life. Not just health but everything.' (10, age 44, pre‐scan)

In contrast to this, people were described who would not want to `know', for example, the type of person `… that wants [to] hide [their] head in the sand thinking well you know you can go on for years and years and years and nothing's going to happen to you' (94, aged 49, pre‐scan):

`I don't know, some people would rather not know what the outcome is going to be or what they are going to end up like. Some people are frightened to walk through a hospital door, let's face it. Erm if somebody is going to say “You can do this if you want to”, their immediate reply is going to be `No I don't want to'. They, they are not that way inclined, whatever happens to them, they'll accept when it happens, but they don't want to know in advance.′ (2, age 56, pre‐scan)

This echoes views of non‐attenders to screening for other conditions such as breast cancer and bowel cancer. ²⁰ , 21, ^–22 The exception to this opposition between a participant's views and her friends' views was in the case of friends who have illnesses themselves, for example, one participants' friend with a bad back felt that it was important to take part.

(3) The purpose of `knowing'

The concept of `knowing' one's risk status appears to be central to participants' reasoning about DEXA scans, as described above. For some participants the idea of knowing was linked to being able to do something about it: `You can either ignore it or try and help yourself. Yeah' (10, aged 44, post‐scan). For others the fact of `knowing' regardless of whether anything could be done was important. For this participant there was a link between her previous experience of having cancer and the idea of something being in her body without her knowing about it:

`I'd like an all‐over body scan though (laughing)…Because with having the trouble that I've had, cancer is a great big fear. And like you don't know until the symptoms are there. Whereas you could have it for years before they actually come out. Erm no, I still fear that one.' (217, age 33, post‐scan)

Part of the debate on medicalization of women's bodies has focused on the notion of prevention, which encourages current health status to be seen in terms of future health risk. ⁹ However, these women appear to welcome the chance to change their future health risks. For the women in this study the chance to do something with the knowledge about their health status, together with a general increased awareness of osteoporosis, were major outcomes of taking part in the study for many participants. Some women were shocked at what they saw as their lack of knowledge and welcomed the chance to rectify this. One participant, for example, had read the leaflets provided, had contacted the National Osteoporosis Society for more, had devised a programme to increase her calcium intake while losing weight, and was also attempting to cut down her smoking. This confirms previous research ^{1 , 6} , 7, ^–8 which highlights the potential of DEXA scanning for encouraging women to implement lifestyle changes or make decisions about treatment. Some of the women acknowledge the influence of the scan in their accounts of talking to their GPs about taking HRT or using other preventive strategies. For the following participant the scan had a role to play in reinforcing her GP's recommendations and in the future to confirm the beneficial effects of HRT:

`I would have wanted to know really why he thought it [taking HRT] would be a good idea. I don't think I would have been confident in taking them [without the scan results]. I'm confident in my GP – I don't think I'd be confident in wanting to take HRT […] But I'd like the opportunity at some time to have another scan to see if. it's stayed as it is and not deteriorated even more and then I'll know that the HRT are doing what they are supposed to be doing.' (10, age 44, post‐scan)

The quotation above reflects a number of issues in the medicalization/limits of medicalization debate. ²³ The complexity and uncertainty of available information means that women may rely on their doctor for help in making a decision, although they may also criticize them. The medical model, in this case a DEXA scan, may also be used by women as a way of managing complex information, for example, about HRT. ¹⁰ Confirmation of the functioning of ovaries or of the benefits of previous and on‐going use of HRT was also mentioned by some women. For other participants the scan confirmed that they had been `doing something right', although they were not necessarily sure what. Again this reflects the uncertainty surrounding this area and the women's use of the medical model to manage this uncertainty.

This section has shown the influences on the process of women's decision‐making about having a scan. Family circumstances appear to be important, either directly or indirectly. Participants' images of themselves as people who `want to know', in contrast to people who `hide their head in the sand', also seems to be the key in their decision‐making. `Knowing' can be a reason in its own right, can be linked to action to improve health or can provide confirmation of effective treatment or strategies.

Understanding of and reaction to results

For four of the women, the results were contrary to their expectations. Two had expected normal results but actually had low bone mineral density:

`I never dreamt that there would have been any bone loss whatsoever, and it. I didn't even prepare myself for it. I was quite shocked because the lifestyle I used to lead was so athletic, so healthy […] I've never abused my lifestyle and I was just stunned to think how can that be.' (10, age 44, post‐scan)

Despite having received negative results, both of the women above described taking positive actions, both in emotional terms – `dealing with it' and in practical terms, such as diet and exercise. For other women the normal result was contrary to their expectations because of their own assessment of their risk factors. This finding is supported by other studies which have found low levels of distress associated with bone density measurement. ⁷ This may be associated with women being aware of their risk before the test and having their anxiety lowered. Some women in this study did express feelings of relief.

A range of feelings arose from the visit to the GP to discuss the result of the scan. Some women felt quite dissatisfied after their visit, arising from not having enough time to discuss the results, feeling that the GP was not concentrating on them, or an unmet need for further information. For others the GP asked about their understanding of osteoporosis, discussed any strategies they were using and made them feel pleased to have taken part. Taking part in an hour interview prior to the DEXA scan may have raised women's awareness and expectations of their subsequent GP visit to discuss the result. Despite the information provided as part of the study, some women wanted additional information that was customized to them to confirm any strategies they were using. Practical constraints of time probably limited the ground that could be covered in the GP visit. The GPs' understanding of and attitudes towards diagnosis and management of osteoporosis, including the role of DEXA scanning, are relevant to the scope and nature of consultations about osteoporosis and DEXA scans. These were also explored in this study and will be reported elsewhere.

Conclusions

This study was small‐scale and exploratory. Although the attitudes of those who did not want a DEXA scan were felt to be important, only three women from this group agreed to an interview. Nevertheless we feel that this study highlights a number of important issues for public health policy relating to osteoporosis in primary care.

Although osteoporosis is common, has high morbidity in terms of hip fractures and is treatable, it did not feature highly as an important health threat to the women in this study. The women had a basic understanding of osteoporosis and its consequences, but did not link this to their individual situations and tended to mediate their perceived individual health needs through their family responsibilities. Despite this overall basic awareness of osteoporosis among the women who participated in this study, there is some confusion between osteoporosis and arthritis. This has important implications for management strategies in primary care, as there may be unnecessary anxiety among women about arthritis, which is not as `treatable' as is osteoporosis. This suggests that there may be a need to provide basic information to women which addresses potential misunderstandings.

Despite having very little knowledge of the process of DEXA scans, the majority of women in this study, who were selected on the basis of putative clinical indicators of low bone mineral density, would rather `go and know'. Their preference was to have a scan whatever their expectations of the results. Their actual experience of having was overwhelmingly positive, with no apparent raised anxiety from either positive or negative results. The role of the scan technician appeared to be pivotal to this positive experience. Interestingly, these positive experiences of the scan tended to be contrary to expectations, which were based on information coming from `lay' sources, while information provided by the research team was not always read or believed. This may have been because of difficulty with reading and understanding the information, general mistrust of medical information, or the lack of a personalized, `human' aspect, in contrast to information from, for example, a friend. The women who chose not to have a scan did so because of perceived health risks in the process or because of doubt about `knowing' their risk status.

It has been suggested that women's sense of control over their choice about whether or not to take HRT may be reduced by `being seriously at risk of osteoporosis, measured perhaps through the use of bone densitometry'. ¹⁰ However, it has also been suggested that the complexity of the issues in this area underline the importance of having information ²⁴ which may include knowing one's risk of osteoporosis. ¹⁸ The women in this study who chose to have a scan saw it as a chance to take more control over aspects of their lives, including dialogue with their GP.

This study suggests that information on osteoporosis needs to be related to existing knowledge and (mis)understanding. The challenge here could be presented as finding a way to provide basic `believable' information to women at medium/high risk for osteoporosis, and who may thus benefit from a DEXA scan, which allays their worries about the process of scanning. However, given that the women in this study agreed to undergo DEXA scans, albeit as part of a research study, with very little understanding of the process, this could be taken one step further. Information could be provided which emphasizes the positive experience of the scan and presents it as an opportunity to use the results to help in decisions about treatment and possible lifestyle changes. There is also a need for open dialogue with their GP, which includes confirmation of successful strategies.

The uncertainty about osteoporosis and scanning expressed in the women's accounts may reflect the lack of information provided as part of the research. However, it may also reflect the general lack of availability of information or the women's lack of interest. ¹⁶ This group of women are typical of those who, under current recommendations, may be referred for a DEXA scan by their GP. The information provided by the study, and the opportunities to discuss their decision are similar to what would be provided in that circumstance.

This study tentatively suggests that the current recommended practice, of identifying those at high risk for further investigation and possible subsequent treatment, was acceptable to this group of women. Further exploration of the acceptability of this practice to other groups of women is needed. This would then raise the challenge of how to promote the strategy through provision of relevant information to appropriate women and to health‐care professionals.

Acknowledgements

To all the women who gave their time to take part in the research; Lesley Radford, Haywood Hospital, Stoke‐on‐Trent; Tracy Bradley and Rhian Hughes, Primary Care Sciences Research Centre, Keele University and the GPs and staff at the practices involved. The DEXA scans were funded by a grant from Proctor and Gamble Pharmaceuticals.