The BMD Muddle: The Disconnect Between Bone Densitometry Results and Perception of Bone Health

Journal of Clinical Densitometry: Assessment of Skeletal Health, vol. 13, no. 4, 370e378, 2010 Ó Copyright 2010 by The International Society for Clinical Densitometry 1094-6950/13:370e378/$36.00 DOI: 10.1016/j.jocd.2010.07.007

Original Article

The BMD Muddle: The Disconnect Between Bone Densitometry Results and Perception of Bone Health Joanna E. M. Sale,*,1,2 Dorcas E. Beaton,1,2 Earl R. Bogoch,1,3 Victoria Elliot-Gibson,1 and Lucy Frankel1 1

Mobility Program Clinical Research Unit, Keenan Research Centre in the Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Ontario, Canada; 2Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada; and 3Department of Surgery, University of Toronto, Toronto, Ontario, Canada

Abstract We conducted a phenomenological qualitative study to examine fracture patients’ interpretations of their most recent bone densitometry results and perceptions of their current bone health. English-speaking outpatients who had sustained a fragility fracture in the previous 18e24 mo and reported having at least 1 previous bone mineral density (BMD) test were eligible. Data were collected through semistructured interviews in patients’ homes. Patients were asked to describe their most recent BMD test results and perception of their bone health status based on these results. Eighteen patients (14 women and 4 men) aged 49e82 yr were recruited. BMD results showed bone density in patients to be normal (n 5 4), osteopenic (n 5 9), and osteoporotic (n 5 5). A correct diagnosis was recalled by 6 patients. Two common interpretations of BMD test results emerged: (1) no news was considered to be good news (n 5 9) and (2) evidence of compromised bone health was not considered to be serious or accurate (n 5 6). Medication adherence did not appear to be associated with perception of bone health or actual BMD results. Patients’ perceptions of their current bone health did not correspond to the results of their most recent BMD test. Standardized bone densitometry reporting may improve patients’ understanding of their bone health. Key Words: Bone densitometry; diagnostic test; fragility fractures; osteoporosis; qualitative research.

patients report incorrect results from their bone mineral density (BMD) test (7). It is important that we address this discrepancy in patient reports, because OP patients who are unclear about their BMD test results or who incorrectly think the results showed normal bone density are significantly less likely to initiate (7,8) and adhere (9) to therapy. Currently, the trend is to report bone health status in the context of fracture risk (10,11). BMD testing, or bone densitometry, is required for determining fracture risk in Canada (10); the reliance on this technology has increased dramatically in past decades. Between 1992 and 2001, the number of bone density tests increased 10-fold in the province of Ontario, Canada (12). Although it has been shown that having a result of low bone density on bone densitometry is associated with treatment initiation (8,13e16), as many as 50% of OP patients and 80% of osteopenic patients do not begin any treatment after their test (16).

Introduction Many published reports suggest that in real-world settings, treatment adherence in osteoporosis (OP) patients is low (1e6), even after a fracture (2,5). For example, approx 60% of women newly advised to begin OP treatment stop taking their medication within 6 mo of initiating therapy (6). However, there is a paucity of research as to why patients stop or never initiate OP medication. One possible reason that patients do not initiate treatment is that they are unclear about or have misinterpreted their diagnosis of OP or osteopenia. It has been found that 50% of OP patients and 69% of osteopenic Received 05/19/10; Revised 06/28/10; Accepted 07/23/10. *Address correspondence to: Joanna E.M. Sale, PhD, Mobility Program Clinical Research Unit, St. Michael’s Hospital, 30 Bond Street, Toronto, ON M5B 1W8, Canada. E-mail: salej@ smh.toronto.on.ca

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The BMD Muddle The purpose of this qualitative study was to examine fracture patients’ interpretations of their most recent bone densitometry results and perceptions of their bone health after being investigated through an OP-screening program in an urban hospital in Ontario. A qualitative study was suited to such an investigation, because it is an inquiry process that focuses on meaning and interpretation (17,18) and can yield in-depth explanations and perceptions from the perspective of individual patients.

Materials and Methods Study Design This study relied on phenomenological methods (qualitative research) (19). Specifically, an eidetic phenomenological study was conducted, which assumes that there are structures or commonalities to patients’ experiences (20) regarding their interpretations of bone densitometry results. The purpose of inquiry is to describe this common structure based on a diversity of experiences (21).

Recruitment According to phenomenological methods, the meaning of the phenomenon (e.g., interpretation of BMD test results and perception of bone health) is explored by asking individuals who have experienced the phenomenon to describe their experiences (22). Sampling was, therefore, purposeful, in that fracture patients who had undergone BMD testing and were able to articulate their experiences were recruited (criterion sampling). English-speaking outpatients aged 40þ yr who (1) had sustained a fragility fracture, (2) had reported having at least 1 previous BMD test, and (3) were investigated through an established OP-screening program (23) at an urban hospital were eligible. The screening program is a collaboration of orthopedic surgeons and residents, pharmacists, orthopedic technicians, Metabolic Bone Disease Clinic physicians, and administrative staff. A single coordinator is responsible for the program and identifies patients with OP-related fractures, educates them about OP treatment, and refers them to the Metabolic Bone Disease Clinic or their family physician for investigation and, possibly, treatment. The coordinator follows up with patients on all subsequent visits to the fracture clinic and then again by telephone at 6 mo to reinforce education and referral recommendations. The coordinator screened medical records to identify potentially eligible patients who had sustained a fracture approx 18e24 mo before the study start date and contacted them by telephone to determine if they were interested in participating in a follow-up study on their postfracture care. Males and females were identified in a proportion representative of the fracture patient population at our site (17% and 83%, respectively). Approval for this study was obtained from the Research Ethics Board of the hospital.

Data Collection Data were collected through face-to-face semistructured interviews in patients’ homes where patients were considered Journal of Clinical Densitometry: Assessment of Skeletal Health

371 likely to feel relaxed and comfortable (17) and able to personally reflect on their experiences. Interviews were conducted 18e24 mo postfracture; hence, patients had a chance to establish a routine with their OP self-management and receive appropriate investigation (i.e., BMD testing) and treatment. Interviews lasted approx 1e2 h and were audiotaped. As an introduction to the interview, the interviewer asked patients to talk about their fracture and their experience in the fracture clinic. Questions regarding BMD test results and bone health status are shown in Table 1. Examples of questions included ‘‘What did the result(s) tell you about your bones?’’ and ‘‘Has anyone mentioned that you might have osteoporosis/osteopenia?’’ Consistent with the concept of ‘‘bracketing’’ in eidetic phenomenology (the setting aside of preconceived ideas about the phenomenon) (24), the interviewer remained neutral throughout the interview and did not reinforce or discourage any topics discussed that were related to bone densitometry and bone health status. Similarly, the words ‘‘osteoporosis’’ and ‘‘osteopenia’’ were introduced only once by the interviewer. If the participant did not use these terms or denied having either condition, the interviewer repeated the terminology used by the participant. The interviewer was not aware of the participants’ actual bone densitometry results before or during the interview. All interviews were taped with a digital recorder. Detailed notes were taken during the interviews in the event of tape failure. To contextualize our findings, age and sex of each participant was noted in addition to the name of any medication or supplements currently taken for bone health. At the end of the interview, we requested consent from each patient to obtain a copy of his or her BMD test results. Actual BMD results were classified as ‘‘normal bone density,’’ ‘‘osteopenia’’ or ‘‘reduced bone density,’’ or ‘‘osteoporosis,’’ based on World Health Organization definition (25,26) for women and Khan et al (27) for men (slightly different thresholds for men and women).

Data Management All audiotaped interview discussions were downloaded from the digital recorder to a computer. The data were transcribed into Microsoft Word, verified against the audiotapes (28), and then downloaded in NVivo 7 (Qualitative Solutions and Research Pty Ltd., Victoria, Australia) (29), a qualitative software program with flexible features that helped organize, code, and retrieve data.

Data Analysis Analysis of the interview data began after the first interview and was an iterative process, whereby codes were identified immediately and then revised as more interviews were conducted. Three researchers coded the first 3 transcripts at a preliminary level to develop an initial coding template; the 3 researchers met after coding each transcript to compare and discuss their codes. By the third transcript, there was a consensus on the coding template. The remaining transcripts were coded independently by 2 researchers (JEMS and LF) who met on 3 additional occasions to promote Volume 13, 2010

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Sale et al. Table 1 Interview Protocol

Category of questions BMD test results

Perception of bone health status

Interview questions 1. 2. 3. 4. 5. 6. 7. 8. 1. 2. 3. 4. 5.

Were you given a bone density test (some patients may not have remembered the test)? (If ‘‘yes’’), what did the result(s) tell you about your bones? Did someone explain the results to you? (If yes), what did they say? What did the results of your BMD test mean to you? What did your previous BMD tell you? What made you get your most recent BMD test [if participant reported previous BMDs]? What was the BMD test for? Has anyone mentioned that you might have osteoporosis or osteopenia? What went through your mind when you were told you had (term used by participant to describe his/her bone status)? What made you understand that you had (term used by participant to describe his/her bone status)? Is there a connection between your fracture and your (term used by participant to describe his/her bone status)? What do you imagine your bones to look like?

Abbr: BMD, bone mineral density.

a comprehensive examination of the data and discuss the classification of data from subsequent transcripts within the existing coding template. In the second level of analysis, all codes pertaining to BMD test results were labeled ‘‘recall of BMD test results.’’ Some patients recalled 1 BMD test, whereas others recalled multiple tests; although we probed patients to discuss information recalled on all BMD tests, we focused on the most recent BMD for this level of analysis. Codes pertaining to patients’ perceptions of their bone health were labeled ‘‘perception of current bone health.’’ We created a matrix of the data for each patient in NVivo, so that we could compare ‘‘actual BMD test results,’’ ‘‘recall of BMD test results,’’ and ‘‘perception of bone health status.’’ The data were analyzed for each individual, and the structure for each patient’s experience was described (30). The third level of analysis was conducted by the lead author (JEMS). In this analysis, contextual information regarding each participant’s current and past experiences with bone densitometry and OP treatment was explored to determine how these experiences might have influenced each patient’s interpretation of his or her most recent BMD test results. Direct quotations from the transcripts illustrated and/or clarified our findings. Consistent with phenomenological analysis, data that did not fit with the identified interpretations were accounted for and their exclusion justified (31,32).

Results We initially identified 24 eligible patients. Eighteen patients (14 women and 4 men) aged 49e82 yr agreed to participate in our interviews; of the 6 patients who did not Journal of Clinical Densitometry: Assessment of Skeletal Health

participate, 2 declined, 3 were not located, and 1 was leaving on an extended vacation during the study period. We interviewed all 18 participants; after the 18th interview, no new thematic information was introduced. This sample size meets with recommendations for phenomenological studies (18,21). Ten patients had sustained a fracture of the wrist, 5 of the shoulder, and 3 of the hip. All fractures occurred between March 2006 and February 2008. Fourteen participants had a BMD test at our hospital, and they gave consent to access their BMD results. Four participants had BMD tests at other sites, and they consented to access their BMD results from their family physicians. The interviewer verified the supplements and/or OP medication (all medications were bisphosphonates) of all participants by documenting the contents of participants’ pill bottles: 7 participants were taking calcium, vitamin D, and a bisphosphonate; 9 were taking calcium and vitamin D; 1 was taking a bisphosphonate only; and 1 was not taking any medication or supplements. Data collection yielded approx 400 pages of transcripts. The final coding template consisted of 43 codes, including ‘‘fracture,’’ ‘‘fracture clinic,’’ ‘‘BMD test experience,’’ ‘‘BMD test results,’’ ‘‘perception of risk,’’ ‘‘family physician,’’ ‘‘specialist,’’ ‘‘attitude to OP/bone health,’’ ‘‘bone health status,’’ ‘‘denies OP,’’ ‘‘understanding bone health status.’’ We organized these codes to create the 2 broader categories of data specified before our analysis: ‘‘recall of BMD test results’’ and ‘‘perception of bone health status.’’ Actual BMD test results showed bone density to be normal in 4 patients (0 were taking a bisphosphonate), osteopenic in 9 patients (5 were taking a bisphosphonate), and osteoporotic in 5 patients (3 were taking a bisphosphonate). These results were based on the lowest T-score of the spine (L1eL4), Volume 13, 2010

The BMD Muddle proximal femur (or femoral neck), or total hip (10). Participants had difficulty remembering the health care providers with whom they interacted in the fracture clinic, including the OP-screening coordinator; hence, we labeled these health care providers as ‘‘fracture clinic staff.’’ All 18 participants recalled having at least 1 BMD test. Six participants (ID2, ID5, ID13, ID14, ID16, and ID18) reported their current diagnosis correctly as OP (n 5 3; ID2, ID16, ID18), osteopenia (‘‘borderline osteoporosis’’) (n 5 1; ID14), or normal (n 5 2; ID5, ID13). Two common interpretations of BMD test results and subsequent perception of bone health emerged: (1) no news about the test result was considered to be good news (n 5 9) and (2) evidence of compromised bone health was not considered to be serious or accurate (n 5 6). Tables 2 and 3 summarize the interpretations of each participant’s recall of his or her most recent BMD test results, current perceptions of bone health status, and current OP medication use. Participants’ descriptions of their BMD test results (past and present) were key to these interpretations. Participants had more difficulty interpreting the diagnosis of ‘‘osteopenia’’ rather than ‘‘normal’’ or ‘‘OP.’’ For example, 2 participants with osteopenia reported having OP or ‘‘borderline osteoporosis’’ (ID7, ID14) and 6 participants with osteopenia believed they had normal or ‘‘okay’’ bone density (ID3, ID6, ID9, ID10, ID11, and ID12). Three participants were not classified under these 2 interpretations: 1 participant (ID8) did not recall a diagnosis of OP but perceived her bone status to be very serious, and 2 participants (ID5, ID13) recalled a correct diagnosis of normal bone density. Interestingly, 1 of the 2 participants who recalled a correct diagnosis of normal bone density told us that her family physician had tried to convince her that she had OP, because she had fallen from a standing position and broken a bone. Perception of current bone health status did not appear to be associated with whether or not participants were currently taking prescribed OP medication; 5 of the 9 participants classified under ‘‘no news was considered to be good news’’ were taking a bisphosphonate, and 2 of the 6 classified as ‘‘evidence of compromised bone health was not considered to be serious or accurate’’ were taking a bisphosphonate. Recalling a correct diagnosis also did not ensure adherence to OP medication: 3 participants who reported a diagnosis of OP or osteopenia (‘‘borderline osteoporosis’’) (ID2, ID14, and ID16) were not taking OP medication.

No News Was Considered to be Good News Half of our participants (n 5 9) reported not receiving their most recent BMD test results and assumed that they had normal bone density (7 participants reported not receiving the results, and 2 participants reported not recalling the results). Time since the most recent BMD test varied from 3 mo to 2 yr. Some of these participants had been to their family physician since their last BMD test and others had not. In 2 cases (ID1 and ID15), we verified that no news was correctly interpreted as good news, that is, actual test results showed that these participants had normal bone density. However, actual Journal of Clinical Densitometry: Assessment of Skeletal Health

373 test results showed that the remaining 7 participants in this category (ID3, ID4, ID6, ID9, ID10, ID11, and ID12) had either osteopenia or OP on their most recent BMD test. Interestingly, all 7 participants with osteopenia or OP who interpreted their BMD test results as ‘‘no news was considered to be good news’’ described a history of either osteopenia or OP on previous BMD tests or wavered on the perception of their ‘‘normal bone density’’ based on circumstances surrounding their BMD testing. One participant (ID3) who had had several BMD tests was reassured that there had been no significant differences among her prior test results. However, she reported that she never knew what the initial test results were. This participant recalled her family physician’s feedback on the tests: ‘‘he just explained that from year to year, there didn’t appear to be any significant change . he didn’t seem overly alarmed or anything.’’ Another participant (ID4) who reported being on a bisphosphonate for ‘‘prevention’’ talked about not having to go back for another BMD test for 2 yr. Because of this schedule, he assumed that ‘‘everything was okay’’ and that there was ‘‘no major problem.’’ One participant (ID9) recalled having 1 BMD test before the most recent one. She described the first results as not ‘‘showing any craziness back then. I was at the top of the bottom and the bottom of the top. I was sort of in the middle . right in the average.’’ As shown in Table 2, this participant’s bone density test result showed osteopenia, but she assumed that the result was ‘‘perfectly normal again.’’ Participant #10 recalled having 3 or 4 previous BMD tests and remarked ‘‘I don’t think it [first bone densitometry result] was terribly bad, but they said that my bone density was maybe 60% of what it should have been . in certain parts of my body, the bone density was much lower than it should have been for my age. So they said it was osteoporosis and that I should start taking the [bisphosphonate].’’ The second or third bone density test ‘‘saw . a slight improvement, it hadn’t gotten any worse.’’ She had not seen her general practitioner since her most recent BMD test 3e5 mo previously and described her bones as ‘‘pretty good.’’ Participant #12 had had several BMD tests. A prior test result showed ‘‘the dispersion wasn’t that great . the dispersion [was] slight . from the norm for a person of my age’’ and ‘‘at some point, I was told that I had osteopenia.’’ However, her most recent BMD had been performed 2 yr previously and she did not recall the results from the test. This participant had been taking OP medication for 10 or 12 yr. With reference to her most recent BMD test (T-score 5 2.1), she told us ‘‘I think I would remember if it had been something negative or not so good.’’

Evidence of Compromised Bone Health Was Not Considered Serious or Accurate Six participants suspected that they had compromised bone health (sometimes referred to as ‘‘osteopenia’’ or ‘‘OP’’ by participants; 2 participants recalled a correct diagnosis of OP), but this condition was not interpreted as serious based on prior or most recent BMD test results. Of interest, 1 Volume 13, 2010

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Sale et al. Table 2 Recall of BMD Results and Perception of Current Bone Health

ID 1

15

3

6

9

10

T-Score (lowest if multiple T-scores)

Currently on a bisphosphonate

Perception of bone health status

Recall of BMD test results

Actual BMD test result (most recent); 10-yr fracture risk (10)

Patient assumed results ‘‘would read out the same [as previous results that showed] my bone density was above average’’ ‘‘I really wasn’t worried [about my bone health]. I have lots of health concerns that I have to look after but I don’t think that’s [my bones] one of them’’ ‘‘Well, let’s face it, I’m 75. I don’t think your bones get stronger. And the fact that he [specialist] is rethinking about what medication I’m on and he wanted me to try [a bisphosphonate] . I’m sure he’s got method in his madness . I can’t say I honestly think [that I have osteoporosis] but sometimes you wonder’’ ‘‘[My GP said] we want to prevent osteoporosis so I recommend you take [a bisphosphonate] and calcium . you don’t want to have osteoporosis . she never said ‘you have osteoporosis’’’ ‘‘Nobody raised any red flags about it [BMD test result] so I gather it was perfectly normal again . I think of them [my bones] as being healthy and strong’’ ‘‘I think they [my bones] are pretty good . they have gotten better . I guess the ones that I figure were okay to start with would still be okay’’

Results not received

Normal; moderate risk

0.5

No

Results not received

Normal; moderate risk

þ0.1

No

Results not received

Osteopenia; high risk

2.35

Yes

Results not received

Osteopenia; high risk

2.0

Yes

Osteopenia; high risk

1.5

No

Osteopenia; high risk

2.4

Yes

Does not recall results

Results not received

(Continued )

Journal of Clinical Densitometry: Assessment of Skeletal Health

Volume 13, 2010

The BMD Muddle

375 Table 2 (Continued)

Perception of bone health status

ID 11

12

4

‘‘He [specialist] hasn’t said anything [about osteoporosis] . Of course, I haven’t asked’’ ‘‘It [most recent BMD test] certainly didn’t say there was anything bad . I think I would remember if it had been something negative or not so good’’ ‘‘I think they [BMD results] were fairly normal that nothing too serious was wrong with me .’’

Recall of BMD test results

Actual BMD test result (most recent); 10-yr fracture risk (10)

T-Score (lowest if multiple T-scores)

Currently on a bisphosphonate

Results not received

Osteopenia; high risk

1.6

No

Does not recall the results

Osteopenia; high risk

2.1

Yes

Results not received

Osteoporosis; high risk

2.7

Yes

Group: no news was considered to be good news. Abbr: BMD, bone mineral density.

participant (#7) recalled a diagnosis of ‘‘OP’’ after her most recent BMD test, but our records showed that she had osteopenia. Participant #2 recalled from his most recent BMD test that ‘‘I have a low risk for osteoporosis but because I broke a bone, that takes me up to being a medium risk.’’ After much discussion about his diagnosis of OP, he concluded that he was only ‘‘low risk but maybe in ten years [he’d] have to do something.’’ One participant (#16) had a previous BMD that she described as showing ‘‘my back was bad, [indicative] of a 70 year-old . at the time, I must have been 50, but the rest of me was okay.’’ Later, in speaking again of that BMD, she said ‘‘I gained ages [years] and it was in my back. I had the back of a 70-year old which didn’t make sense to me. And whatever other test they did was normal, like normal for my age.’’ Although she attributed these results to her ‘‘bad back,’’ she was suspicious of the results, because she had broken her ankle and then her wrist, not her back. This participant was not concerned about her current test result, which was similar to her previous resultd‘‘I presumed everything else [other than my back] was okay.’’ Similarly, another participant (#17) was ‘‘relieved’’ that there was no change between her initial and most recent BMD test results.

Discussion Our study indicated that only one-third (n 5 6) of fracture patients who had undergone bone densitometry correctly recalled a diagnosis of normal bone density, osteopenia, or OP. Regardless of whether the densitometry findings were correctly recalled, 2 main interpretations emerged from our findings: (1) no news about the test results was considered Journal of Clinical Densitometry: Assessment of Skeletal Health

to be good news and (2) evidence of compromised bone health was not considered to be serious or accurate. These 2 interpretations, perhaps, relate to a broader facet of human nature, namely, the tendency for patients to deal with bad news by either denial or by bargaining (33). However, it was interesting to us that almost half of the patients with these interpretations were still taking a bisphosphonate. In other words, perception of current bone health status or correct recall of BMD results did not appear to be related to the use of current OP medication. Avariety of descriptions was given by participants for a diagnosis of OP or osteopenia when they described current or previous bone densitometry results. Those who correctly reported their results still reported these with a variety of descriptive terms. This suggests that the results are inconsistently reported to fracture patients by family physicians, specialists, and/or radiologists, or that there is a lack of consensus on useful terms suitable for conveying the meaning of the test results to lay individuals. Participants had most difficulty recalling their diagnosis of osteopenia. Two participants with osteopenia reported having OP or ‘‘borderline OP,’’ and 6 participants with osteopenia believed that they had normal bone density. Interestingly, no patient mentioned a T-score or a Z-score, although Zscores might have been alluded to with comments, such as ‘‘normal for my age’’ or ‘‘I gained ages [years] in my back.’’ Although 11 (3 men and 8 women) of our patients were at high (20%) 10-yr risk for future fracture (10), few patients in our study interpreted their bone health within the concept of fracture risk. This is not unexpected, because the concept of reporting 10-yr fracture risk is relatively new even among OP specialists; it has not been thoroughly adopted by primary care physicians and is largely unknown to the general public. Volume 13, 2010

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Sale et al. Table 3 Recall of BMD Results and Perception of Current Bone Health

ID 7

14

17

2

16

18

Actual BMD test result (most recent); 10-yr fracture risk (10)

T-Score (lowest if multiple T-scores)

Currently on a bisphosphonate

Perception of bone health status

Recall of BMD test results

‘‘I know they call it a silent disease but it’s the one that are screaming out, not the silent ones, that are bothering me at the moment’’ ‘‘I wasn’t too worried because what they said and how they said it . ‘your hips were fine but I was borderline for my back’ ’’ ‘‘I do have some bone losses but if I exercise and I take my vitamins, the bones will come back’’

‘‘[The result] wasn’t seventy percent of bone mass. It was seventy percent for someone my age’’

Osteopenia; high risk

1.4

Yes

‘‘I was borderline osteoporosis on my back. My hips were okay and I was borderline on my back.’’ ‘‘The rating was the same [as the last BMD test results] . I didn’t lose any and I didn’t gain . I was relieved.’’ ‘‘They told me I have some form of osteoporosis’’

Osteopenia; moderate risk

1.5

No

Osteopenia; moderate risk

2.1

No

Osteoporosis; moderate risk

2.5

No

Osteoporosis; high risk

2.9

No

Osteoporosis; high risk

2.5

Yes

‘‘Right now I’m low risk [for osteoporosis] but maybe in ten years I’ll probably have to do something’’ The message from the fracture clinic staff was that ‘‘I did in fact have osteoporosis . it doesn’t worry me now that I am taking caltrate’’ ‘‘They [fracture clinic staff] suggested that I might have it [osteoporosis] . I wasn’t too concerned. I just thought, oh well, I’ve got to deal with it’’

‘‘It [test result] didn’t mean anything to me . it was just a bunch of numbers and stuff. They said my back was the worst . but it’s never broken.’’ ‘‘She [specialist] said my bone density has increased slightly since the last time I was checked . An increase. Maybe 2%, something like that, which was good.’’

Group: evidence of compromised bone health was not considered to be serious or accurate. Abbr: BMD, bone mineral density.

There are several implications of our study findings. First, despite having previously undergone bone densitometry with osteopenic or osteoporotic results, patients waiting for new BMD test results may think that their bone densities are normal. These patients may still assume that a ‘‘normal’’ result will be forthcoming from their current densitometry despite earlier diagnoses of OP or osteopenia. This suggests that bone densitometry is frequently ordered by physicians without a sufficient plan to communicate the test results to patients and develop a treatment plan for them. It also suggests a need for the development of a convention or consensus of how to select terms for the communication of Journal of Clinical Densitometry: Assessment of Skeletal Health

densitometry results to patients. Unfortunately, we were unable to reliably determine whether, or precisely how, patients’ family physicians and/or bone specialists had communicated BMD test results to the patients in this study. Second, if participants recalled their test results, they tended to minimize the seriousness of a diagnosis of OP or osteopenia even 18e24 mo after a fracture event, which has been considered to be a ‘‘teachable moment’’ (34). This was partly the result of how patients interpreted the description of these results. For example, some patients were unconcerned about an unchanged level of bone density on a follow-up densitometry even after an earlier diagnosis of low bone mass. Accounts Volume 13, 2010

The BMD Muddle from patients implied that there are difficulties with the interpretation of BMD test results when they are reported in a variety of ways: (1) ‘‘No change over time’’ may be reassuring if clinicians do not reiterate the original results of low bone mass indicating OP treatment; (2) ‘‘An improvement in T-scores’’ might signify to patients that their bone health has improved dramatically to warrant no further OP treatment; (3) ‘‘Z-scores’’ may be recalled as ‘‘normal for my age’’ and interpreted as normal, whereas an older female patient with a prevalent fragility fracture, a low T-score, and an average Z-score may be at moderate or high fracture risk; (4) ‘‘low’’ and ‘‘medium’’ risk may not be considered serious. In fact, there is a need to emphasize to fracture patients that low T-scores combined with a prevalent fracture is indicative of ‘‘high’’ risk for future fracture; (5) the term ‘‘borderline’’ is misleading, because patients may interpret it optimistically, whereas the physician might consider it to be a euphemism for concerningly low, requiring careful observation and possible intervention. Contrary to predictions of behavior change models, such as the Health Belief Model (35,36) and Social Cognitive Theory (37,38), current OP medication use did not appear to be associated with accurate perception of bone health. Seven patients who were taking medication reported that they had normal bones or bones that were not seriously compromised, and 3 patients who were not taking medication reported that they had OP or osteopenia (in some cases, the latter may be appropriate depending on other clinical factors). This suggests that some other mechanism was facilitating 7 of the 15 ‘‘muddled’’ patients to take OP medication. Perhaps, a test result of OP or osteopenia on bone densitometry leads to OP treatment initiation, because the test is part of the process that leads to a decision to treat and not because patients understand their results. There were a number of limitations to our study. Our study focused on interpretation of BMD test results alone and did not consider how patients interpreted other diagnostic tests. Adelsward and Sachs (39) have demonstrated the challenges in relaying and interpreting a battery of test results related to cardiovascular disease, and others (40) have shown that women go beyond diagnostic breast test results to interpret what they are told by health care professionals. Most of our patients had sustained a fracture of the wrist or shoulder. It is known that patients with these fractures often view them as truly traumatic and not associated with underlying disease (41). Consequently, this group might represent the most challenging to convince of a diagnosis of low bone mass. We did not consider the physician’s perspective in this study; hence, we cannot determine the source of patients’ interpretations, that is, we do not have the language used by physicians to interpret the results to the patients, if and when this was done. We also acknowledge that information about BMD test results may have been relayed by a number of health care providers and that this information might not have been consistent. Also, we could not verify whether patients actually received their BMD test results and simply did not recall them. Despite these limitations, we propose that our results may underestimate the disconnect between bone densitometry results and Journal of Clinical Densitometry: Assessment of Skeletal Health

377 patients’ subsequent perception of bone health in the community, because our patients were recruited through an OPscreening program and had been followed up by an expert OP-screening coordinator who reinforced education and reiterated the results of the BMD test if the test results were known. In conclusion, our study suggests that patients assumed that they had normal bone densitometry results if they did not receive the results. Also, when they did recall receiving their results, perceptions of these results (including past results) were key to minimize the meaning of compromised bone health. Quotations in participants’ own words have been provided to illustrate the prevalence of misinterpretations and demonstrate how individuals constructed their understanding of the test results. We propose that standardized bone densitometry reporting, including better description of diagnostic categories, may improve patients’ understanding of their bone health.

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