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Patient Preference for Being Informed of Their DXA Scan Results
Journal of Clinical Densitometry, vol. 7, no. 3, 275–280, 2004 © Copyright 2004 by Humana Press Inc. All rights of any nature whatsoever reserved. 1094-6950/04/7:275–280/$25.00
Original Article
Patient Preference for Being Informed of Their DXA Scan Results Peter Cram, MD MBA,*,1 Janet Schlechte, MD,2 Gary E. Rosenthal, MD,1,4 and Alan J. Christensen, PhD1,3 1Division
of General Internal Medicine, Department of Internal Medicine; 2Division of Endocrinology, Department of Internal Medicine; and 3Department of Psychology, University of Iowa, Iowa City, IA 52242; and 4Program for Interdisciplinary Research in Health Care Organization, Iowa City Veterans Administration Medical Center, Iowa City, IA
Abstract Evidence suggests that patients diagnosed with osteoporosis are often undertreated. One potential solution to undertreatment is to enhance patient involvement in their osteoporosis care (a.k.a. patient activation) by having the dualenergy X-ray absorptiometry (DXA) center directly provide patients with their test results and educational material. However, little is known about patient interest in such an intervention. Consecutive patients presenting to an academic medical center DXA scanning unit were given a questionnaire to assess their preferences for being informed of their test results and interest in receiving their results plus educational material by mail from the testing center. Two hundred and two (202) of 206 (98%) of patients agreed to complete the survey. Fifty-one percent of participants preferred receiving their results by mail directly from the DXA center, followed by phone call (28%) and office visit (11%). Overall, 90% of patients reported interest in receiving results and educational material by mail. Younger patients were more interested in receiving their results by mail when compared with older patients, but this difference did not reach statistical significance (odds ratio [OR] = 2.40: 95% confidence interval [CI]: 0.91–6.31, p = 0.14). Patients undergoing DXA scanning were interested in receiving their scan results and educational material directly from the testing center. This might represent an effective intervention for improving care of patients with osteoporosis. Key Words: Osteoporosis; patient activation; patient education; bone mineral density.
Introduction
energy X-ray absorptiometry (DXA) scans, patients often do not receive appropriate treatment and might not be notified of their scan results (5,6). Novel tools to ensure that patients diagnosed with osteoporosis receive optimal care are needed. Patient activation interventions, broadly defined as “enhancement of patient involvement in personal health care through teaching of self-care skills and principles of prevention,” represent one potential technique for improving treatment of patients with osteoporosis (7). The conceptual underpinnings of patient activation interventions are drawn from The Health Belief Model (HBM) (8). The model suggests that, following a “cue to action” (e.g., abnormal DXA scan), the probability of taking a recommended action (e.g., initiating therapy) depends on patients’ concern about the degree of threat posed by the disease (action is more likely when concern
Osteoporosis is a common and costly medical condition (1,2). Recent advances have given patients and health care providers a broad array of treatment options for reducing fracture risk. Unfortunately, there is growing evidence to suggest that many patients diagnosed with osteoporosis never receive such treatment (3,4). Of particular concern are data suggesting that even after osteoporosis is identified on screening dualReceived 10/31/03; Revised 01/21/04; Accepted 01/21/04. * Address correspondence to Dr. Peter Cram, Assistant Professor of Medicine, Division of General Medicine, University of Iowa College of Medicine, SE611 GH, 200 Hawkins Drive, Iowa City, IA 52242, USA. E-mail: [email protected]
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Fig. 1. Conceptual model.
is high) and the relative benefits of and barriers to accepting the recommendation (action is likely when benefits outweigh barriers). For an individual patient, a finding of osteoporosis on screening DXA scan is a “cue to action.” Such a patient does or does not receive treatment depending on complex interactions among patient, provider, and health system factors. Each of these entities can either create barriers or facilitate optimal treatment (Fig. 1). Within each patient, barriers (e.g., comorbidities, economic constraints) are balanced with facilitating factors (e.g., personal worry about osteoporosis, family support) and combine with sociodemographic and psychological factors to create an individual’s preference for treatment. Likewise, related factors might influence a provider’s treatment recommendations; these factors also include perceived benefits (e.g., awareness of treatment options) and barriers (e.g., inexperience treating osteoporosis), as well as sociodemographic and psychological traits. Finally, both the patient and provider are influenced by barriers and facilitating factors within the health care system. If prescription of drug therapy requires insurance preauthorization or test results are not consistently and conveniently made available to the provider, optimal treatment is hindered; alternatively, a health care system that educates providers or patients about osteoporosis might facilitate delivery of optimal care. An ideal intervention to optimize the treatment of osteoporosis identified on screening bone densitometry would be inexpensive and address multiple barriers simultaneously; patient activation interventions often meet these criteria. Numerous interventions that fall under the rubric of patient activation have been studied including sharing of clinic notes with patients and intensive patient education (9–12). The pre-
Journal of Clinical Densitometry
ponderance of evidence suggests that patient activation is effective at improving desired health outcomes and patient satisfaction (13–16). However, with the notable exception of mammography, little attention has been given to patient activation that might occur by providing patients with greater access to their own test results and there are no data examining patient preferences for notification of their DXA scan results (17–21). In an effort to better understand patients’ anxiety related to testing and preferences for being informed about their DXA results, we conducted a survey of consecutive patients undergoing DXA scanning at an academic medical center.
Methods Study Site Two hundred six consecutive patients presenting to the Bone Densitometry Center at the University of Iowa for DXA scans during May and June 2003 were given a questionnaire prior to their scan and offered the opportunity to participate in this study. The densitometry center serves as the sole DXA scanning unit for the University of Iowa Hospitals and Clinics (UIHC) and its affiliated satellite clinics. Over 60% of patients seen at UIHC live within 30 miles of the medical center and 88% live within 90 miles. The center performs 2500 DXA scans per year and approx 90% of these patients are referred by UIHC staff and 10% are referred directly to the center from outside providers. Historically, over 90% of patients are referred for their DXA scans by physicians, with the remainder being referred by nurse practitioners and physician assistants. Of those patients referred by physicians, approx 20% are
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referred by residents or fellows. Approximately 20% of patients are referred for their DXA scans by general internists, 16% by family practitioners, 16% by rheumatologists, 15% by endocrinologists, and 9% by obstetricians/gynecologists, with the remainder being referred by various other providers. The study design was approved by the University of Iowa’s Internal Review Board.
Survey The questionnaire requested demographic information and contained six additional questions. Two questions asked patients about personal and family history of osteoporosis and/or osteopenia. A third question asked the patients to choose how they “would most prefer to be notified of their bone density scan results.” Possible responses included phone call from your primary provider, e-mail from your primary provider, in-person office visit, letter from the bone density center, and other. The final three questions used a 5-point Likert scale (ranging from 1 = not at all worried/interested to 5= very worried/ interested) to address the following issues: • “How interested would you be in being mailed a copy of your bone density result along with some educational material about what the test result means?” • “How worried are you about the possible results of the bone density test?” • “How worried are you that your provider might not check on all of the test results he/she orders?” The survey was initially pilot tested on 25 consecutive patients presenting for DXA scanning to ensure clarity of wording of each question. Based on review of the pilot data and initial review of patient responses, no modifications were made.
Statistical Methods Descriptive statistics were generated on the aggregate data to characterize patient preferences for being informed of their DXA scan results and responses to other questions. Next, responses to individual questions were examined in subgroups stratified according to age (less than 50, 50–64, and 65 yr and older), gender, and personal history of osteoporosis. Statistical significance was assessed using the chi-squared test. Finally, logistic regression was used to explore independent relationships between patient characteristics and questionnaire responses (preferences for notification, level of worry about their DXA scan results, and level of worry that their results would not be checked). All p-values are two tailed, with values less than 0.05 deemed statistically significant. Analyses were performed using Stata 8.0 (Stata Corp., College Station, TX).
Results Of 206 patients who were offered questionnaires, 202 (98%) agreed to participate in the study. The mean age of sur-
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Fig. 2. Patient preference for learning of their DXA results.
vey respondents was 54 yr and 80% were female. The range of ages for female patients (14–85) and male patients (10–79) were similar. Twenty-three percent of participants reported a personal history and 20% a family history of osteoporosis and/or osteopenia.
Patient Preference for Learning Their DXA Results When asked how they would most prefer to learn of their DXA scan results, 51% chose the option to receive their results by mail from the scanning center, 28% chose a phone call from their primary care provider, and 11% chose an office visit (Fig. 2). Stratification by age, sex, family history, and personal history of osteoporosis did not reveal any significant differences among groups either using chi-squared testing or in the logistic regression model (Table 1). In a follow-up question, 90% of respondents reported the combined end point of being slightly or very interested (“high interest”) in receiving a copy of their DXA scan report and educational material about osteoporosis by mail. Using chi-squared testing, patients in the youngest age group (age<50) were significantly more likely to report high interest in receiving material by mail compared with patients in the oldest age group (age > 65) (p = 0.03). However, in the logistic regression model, after adjustment for sex and family and personal history of osteoporosis and/or osteopenia, this difference was no longer statistically significant (odds ratio [OR] for high interest in the youngest age group compared with the oldest age group= 2.40; 95% confidence interval [CI]: 0.91–6.31; p = 0.14).
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Cram et al. Table 1 Patient Responses Stratified by Age and Sex Age 50–64 (n = 82) number responding (%)
Age ≥65 (n = 55) number responding (%)
17 (27) 7 (11) 6 (9) 33 (52) 1 (2)
21 (25) 10 (12) 8 (10) 40 (49) 3 (4)
16 (30) 1 (2) 7 (13) 27 (51) 2 (4)
2 (3) 1 (2) 0 (0) 13 (20) 49 (75)a
3 (4) 1 (1) 5 (6) 7 (9) 66 (81)
4 (7) 2 (4) 2 (4) 7 (13) 39 (72)
12 (18) 21 (32) 13 (20) 15 (23) 4 (6)
29 (35) 23 (28) 13 (16) 9 (11) 8 (10)
18 (33) 16 (29) 10 (18) 9 (16) 2 (4)
32 (50) 16 (25) 9 (14) 6 (9) 1 (2)
52 (63) 18 (22) 5 (6) 4 (5) 3 (4)
40 (74) 9 (17) 2 (4) 1 (1) 2 (4)
Age <50 (n = 65) number responding (%) Question 3: Preferred method of notification Phone: E-mail: Office Visit: Letter from Bone Density Center: Other: Question 4: Interest in being mailed results Not at all interested Not very interested Unsure Slightly Interested Very Interested Question 5: Worry about DXA results Not at all worried Not very worried Unsure Slightly Worried Very Worried Question 6: Worry about provider not checking results Not at all worried Not very worried Unsure Slightly Worried Very Worried
Note: Percentages may not add up to 100% for each cell because of non-responses to particular questions &/or rounding. a Pearson χ = 0.03 comparing combined category of slightly/very interested in receiving results by mail between age group <50 and age group >65.
Patient Worry About DXA Scan Results In the aggregate analysis, 59% of patients surveyed reported that they were either not at all or not very worried (“low worry”) about their potential DXA scan results; however, 16% and 7% responded that they were slightly and very worried, respectively (“high worry”). In a univariate analysis after stratification by age, patients in the youngest age group tended to be more likely to report high worry when compared with patients in the oldest group, but this difference did not reach statistical significance (p = 0.20). In the logistic regression model after adjustment for patient-level variables, there was a trend toward patients in the youngest group being more likely to report having high worry compared to those in the oldest group (OR = 2.95; 95% CI: 0.94–9.27; p = 0.06). In addition, patients with a personal history of osteoporosis and/or osteopenia were significantly more likely to report high worry about their DXA scan results when compared to
Journal of Clinical Densitometry
those without such a history (OR = 2.78; 95% CI: 1.57–4.91; p < 0.001).
Patient Worry About Provider Not Checking Test Results In the aggregate analysis, when asked about their worry that their provider might not check on all test results he/she ordered, 84% reported being not at all worried or not very worried (“low worry”); 9% reported being slightly or very worried (“high worry”). In the logistic regression model after adjustment patient-level variables, those in the youngest age group were more likely to report high worry that their provider might not check all test results when compared to patients in the oldest age group (OR = 9.06; 95% CI: 1.00–84.4; p = 0.05). In addition, patients with a personal history of osteoporosis and/or osteopenia were significantly more likely to report high worry when compared to those who did not have a personal history of osteoporosis (OR = 2.65; 95% CI: 1.15–6.15; p = 0.02).
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Patient Preference for DXA Scan Reporting
Discussion The results of this survey demonstrate that patients undergoing bone densitometry at an academic medical center were interested in receiving greater access to their test results along with educational information about osteoporosis. Furthermore, a majority of patients indicated that they would prefer to learn of their results via mail directly from the DXA center rather than the more traditional pathway of phone call or office visit from their primary provider. The results of this survey also suggest that a majority of patients were not significantly worried about the potential results of their bone density scan and that most patients do not worry that their providers might not follow up on all test results that are ordered. These results are cause for both hope and concern. The results of this study are cause for hope because patients appear receptive to a patient activation intervention related to their osteoporosis care. More specifically, they appear interested in receiving greater access to their DXA scan results and educational material about osteoporosis. However, the finding that a majority of patients undergoing DXA scanning were not worried about the potential results of the test is cause for concern. If patients are not worried about their potential DXA scan results, the probability of patients taking action based on these results might be reduced. Does the patients’ lack of worry reflect patient personality, a lack of understanding about the potential implications of their DXA results, or a combination of the two? Available data suggest that poor patient understanding of osteoporosis might play an important role (22,23). The patients’ relatively low level of worry about provider failure to follow-up on ordered test results is also grounds for concern. Although provider failure to follow up on abnormal test results has not been extensively studied, a limited body of research suggests that the problem might be widespread. Boohaker et al. surveyed physicians regarding their selfreported follow-up of abnormal tests and found that 30% had no consistent method for ensuring that all abnormal test results were conveyed to patients (24). Schiff et al. reviewed potassium prescribing at an academic medical center and found that 3% of potassium prescriptions were given to patients whose last recorded potassium was markedly elevated (25). In addition, preliminary studies suggest that provider follow-up of abnormal mammography results (Pinckney et al.) and abnormal thyroid function tests (Schiff et al.) is also problematic (26,27). Finally, preliminary results from our own institution have shown that providers might fail to recognize a significant percentage of screening DXA scan results (6). The results of the current study suggest that patients might be unaware or generally unconcerned about the possibility that their provider might not follow up on all test results that are ordered. There are several limitations of the current study. First, the results of this study come from a single medical center with a racially homogeneous patient population (greater than 90% white), so extension of these findings to other patient popula-
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279 tions might yield different findings. Second, this study was conducted at an academic medical center, albeit one that provides a significant quantity of primary care. Extending these findings to private practice and primary care settings where a majority of bone densitometry is performed requires careful consideration. Third, the current study did not examine whether patient preference for learning about their DXA results might vary depending on whether the test result is normal or abnormal, despite the fact that there is evidence that this could be important (17). Fourth, the wording of the question asking patients “how worried they are that their provider might not check all test results” implies that there is cause for concern. The bias contained in this question makes it difficult to interpret the potential significance of the 9% of patients who reported being worried. Finally, this study might have been underpowered to detect clinically important differences related to test result reporting. Although this initial study suggests that patients undergoing DXA scanning are interested in receiving their results by mail, a number of questions remain to be answered. It will be important to clarify both how patients want to be notified (e.g., mail, phone, e-mail) and by whom they want to be notified (e.g., ordering provider, DXA center staff). Future studies will also need to clarify whether preferences for test notification differ among different patient populations and different practice settings. Such studies will need to assess how notification preferences differ depending on prior bone health, socioeconomic measures, and comorbidities. Even if patients are interested in receiving their DXA results and information about osteoporosis by mail, creating such mailings will be challenging because treatment is seldom recommended based on bone density alone. In the interim, providers should work to develop systems to ensure that patients are consistently informed of their DXA scan results and that patients understand the interventions that are available to minimize fracture risk.
Acknowledgments This work was funded in part by a new investigator award to Dr. Cram from the University of Iowa College of Medicine and an unrestricted grant from Proctor & Gamble Inc.
References 1. Ray NF, Chan JK, Thamer M, Melton LJ. 1997 Medical expenditures for the treatment of osteoporotic fractures in the United States in 1995: report from the National Osteoporosis Foundation. J Bone Miner Res 12:24–35. 2. Melton LJ, Thamer M, Ray NF, et al. 1997 Fractures attributable to osteoporosis: report from the National Osteoporosis Foundation. J Bone Miner Res 12:16–23. 3. Tosteson ANA, Grove MR, Hammond CS, et al. 2003 Early discontinuation of treatment of osteoporosis. Am J Med 115:209–216. 4. Cuddihy MT, Gabriel SE, Crowson, CS, et al. 2002 Osteoporosis intervention following distal forearm fractures: a missed opportunity? Arch Intern Med 162:421–426. 5. Pressman A, Forsyth B, Ettinger B, Tosteson ANA. 2001 Initiation of osteoporosis treatment after bone mineral density testing. Osteoporos Int 12:337–342.
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280 6. Cram P, Rosenthal GE, Ohsfeldt R, Wallace R, Schlechte J. 2003 Loss to follow-up after newly diagnosed osteoporosis on screening DEXA scan. 20th Annual Midwestern Meeting of the Society for General Internal Medicine. Chicago, IL, 2003 (abstract). 7. Green LW, Werlin SH, Schauffler HH, et al. 1977 Research and demonstration issues in self-care: measuring the decline of medicocentrism. Health Education Monographs 5:161–189. 8. Janz NK, Becker MH. 1984 The health belief model: a decade later. Health Educ Q 11:1–47. 9. Bronson DL, Rubin AS, Tufo HM. 1978 Patient education through record sharing. Qual Rev Bull 4:2–5. 10. Morisky DE, Bowler MH, Finlay JS. 1982 An educational and behavioral approach toward increasing patient activation in hypertension management. J Community Health 7:171–181. 11. Greenfield S, Kaplan S, Ware JE. 1985 Expanding patient involvement in care. Ann Intern Med 102:520–528. 12. Rachmani R, Levi Z, Slavachevski I, Avid M, Ravid M. 2002 Teaching patients to monitor their risk factors retards the progression of vascular complications in high-risk patients with type-2 diabetes mellitus—a randomized prospective study. Diabet Med 19:385–392. 13. Norris SL, Engelgau MM, Venkat-Narayan KM. 2001 Effectiveness of self-management training in type 2 diabetes. A systematic review of randomized controlled trials. Diabetes Care 24:561–581. 14. Boulware LE, Daumit GL, Frick KD, et al. 2001 An evidencebased review of patient-centered behavioral interventions for hypertension. Am J Prev Med 21:221–232. 15. Gibson PG, Powell H, Coughlan J, et al. 2003 Self-management education and regular practitioner review for adults with asthma. Cochrane Database of Systematic Reviews [CD001117]. 16. Wolf FM, Guevara JP, Grum CM, et al. 2003 Educational interventions for asthma in children. Cochrane Database of Systematic Reviews [CD000326].
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Cram et al. 17. Levin KS, Braeuning P, O’Malley MS, et al. 2000 Communicating results of diagnostic mammography: what do patients think? Acad Radiol 7:1069–1076. 18. Bassett LW, Bomyea K, Liu S, Sayre J. 1995 Communication of mammography results to women by radiologists: attitudes of referring ahealth care providers. Radiology 195:235–238. 19. Liu S, Bassett LW, Sayre J. 1994 Women’s attitudes about receiving mammographic results directly from radiologists. Radiology 193:783–786. 20. Dolan NC, Feinglass J, Priyanath A, et al. 2001 Measuring satisfaction with mammography results reporting. J Gen Intern Med 16:157–162. 21. Priyanath A, Feinglass J, Dolan NC, Haviley C, Venta LA. 2002 Patient satisfaction with the communication of mammographic results before and after the mammography quality standards reauthorization act of 1998. Am J Radiol 178:451–456. 22. Ungan M, Turner M. 2001 Turkish women’s knowledge of osteoporosis. Fam Pract 18:199–203. 23. Sedlak CA, Doheny MO, Jones SL. 2000 Osteoporosis education programs: changing knowledge and behaviors. Public Health Nurs 17:398–402. 24. Boohaker EA, Ward RE, Uman JE, McCarthy B. 1996 Patient notification and follow-up of abnormal test results: a physician survey. Arch Intern Med 156:327–333. 25. Schiff GD, Aggarwal HC, Kumar S, McNutt RA. 2000 Prescribing potassium despite hyperkalemia: medication errors uncovered by linking laboratory and pharmacy information systems. Am J Med 109:494–497. 26. Pinckney RG, Pam VM, Coahran M, Berta GM, Littenberg B. 2001 Delay to biopsy after a positive mammogram. J Gen Intern Med 16(Suppl 1):213 (abstract). 27. Schiff GD, Kim S, Wisniewski MF, Bult J, Fogelfeld LA, Krosnjar N. 2003 Every system is perfectly designed to…missed diagnosis of hypothyroidism uncovered by linking lab and pharmacy data. J Gen Intern Med 18(Suppl 1):295 (abstract).
Volume 7, 2004
Original Article
Patient Preference for Being Informed of Their DXA Scan Results Peter Cram, MD MBA,*,1 Janet Schlechte, MD,2 Gary E. Rosenthal, MD,1,4 and Alan J. Christensen, PhD1,3 1Division
of General Internal Medicine, Department of Internal Medicine; 2Division of Endocrinology, Department of Internal Medicine; and 3Department of Psychology, University of Iowa, Iowa City, IA 52242; and 4Program for Interdisciplinary Research in Health Care Organization, Iowa City Veterans Administration Medical Center, Iowa City, IA
Abstract Evidence suggests that patients diagnosed with osteoporosis are often undertreated. One potential solution to undertreatment is to enhance patient involvement in their osteoporosis care (a.k.a. patient activation) by having the dualenergy X-ray absorptiometry (DXA) center directly provide patients with their test results and educational material. However, little is known about patient interest in such an intervention. Consecutive patients presenting to an academic medical center DXA scanning unit were given a questionnaire to assess their preferences for being informed of their test results and interest in receiving their results plus educational material by mail from the testing center. Two hundred and two (202) of 206 (98%) of patients agreed to complete the survey. Fifty-one percent of participants preferred receiving their results by mail directly from the DXA center, followed by phone call (28%) and office visit (11%). Overall, 90% of patients reported interest in receiving results and educational material by mail. Younger patients were more interested in receiving their results by mail when compared with older patients, but this difference did not reach statistical significance (odds ratio [OR] = 2.40: 95% confidence interval [CI]: 0.91–6.31, p = 0.14). Patients undergoing DXA scanning were interested in receiving their scan results and educational material directly from the testing center. This might represent an effective intervention for improving care of patients with osteoporosis. Key Words: Osteoporosis; patient activation; patient education; bone mineral density.
Introduction
energy X-ray absorptiometry (DXA) scans, patients often do not receive appropriate treatment and might not be notified of their scan results (5,6). Novel tools to ensure that patients diagnosed with osteoporosis receive optimal care are needed. Patient activation interventions, broadly defined as “enhancement of patient involvement in personal health care through teaching of self-care skills and principles of prevention,” represent one potential technique for improving treatment of patients with osteoporosis (7). The conceptual underpinnings of patient activation interventions are drawn from The Health Belief Model (HBM) (8). The model suggests that, following a “cue to action” (e.g., abnormal DXA scan), the probability of taking a recommended action (e.g., initiating therapy) depends on patients’ concern about the degree of threat posed by the disease (action is more likely when concern
Osteoporosis is a common and costly medical condition (1,2). Recent advances have given patients and health care providers a broad array of treatment options for reducing fracture risk. Unfortunately, there is growing evidence to suggest that many patients diagnosed with osteoporosis never receive such treatment (3,4). Of particular concern are data suggesting that even after osteoporosis is identified on screening dualReceived 10/31/03; Revised 01/21/04; Accepted 01/21/04. * Address correspondence to Dr. Peter Cram, Assistant Professor of Medicine, Division of General Medicine, University of Iowa College of Medicine, SE611 GH, 200 Hawkins Drive, Iowa City, IA 52242, USA. E-mail: [email protected]
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Fig. 1. Conceptual model.
is high) and the relative benefits of and barriers to accepting the recommendation (action is likely when benefits outweigh barriers). For an individual patient, a finding of osteoporosis on screening DXA scan is a “cue to action.” Such a patient does or does not receive treatment depending on complex interactions among patient, provider, and health system factors. Each of these entities can either create barriers or facilitate optimal treatment (Fig. 1). Within each patient, barriers (e.g., comorbidities, economic constraints) are balanced with facilitating factors (e.g., personal worry about osteoporosis, family support) and combine with sociodemographic and psychological factors to create an individual’s preference for treatment. Likewise, related factors might influence a provider’s treatment recommendations; these factors also include perceived benefits (e.g., awareness of treatment options) and barriers (e.g., inexperience treating osteoporosis), as well as sociodemographic and psychological traits. Finally, both the patient and provider are influenced by barriers and facilitating factors within the health care system. If prescription of drug therapy requires insurance preauthorization or test results are not consistently and conveniently made available to the provider, optimal treatment is hindered; alternatively, a health care system that educates providers or patients about osteoporosis might facilitate delivery of optimal care. An ideal intervention to optimize the treatment of osteoporosis identified on screening bone densitometry would be inexpensive and address multiple barriers simultaneously; patient activation interventions often meet these criteria. Numerous interventions that fall under the rubric of patient activation have been studied including sharing of clinic notes with patients and intensive patient education (9–12). The pre-
Journal of Clinical Densitometry
ponderance of evidence suggests that patient activation is effective at improving desired health outcomes and patient satisfaction (13–16). However, with the notable exception of mammography, little attention has been given to patient activation that might occur by providing patients with greater access to their own test results and there are no data examining patient preferences for notification of their DXA scan results (17–21). In an effort to better understand patients’ anxiety related to testing and preferences for being informed about their DXA results, we conducted a survey of consecutive patients undergoing DXA scanning at an academic medical center.
Methods Study Site Two hundred six consecutive patients presenting to the Bone Densitometry Center at the University of Iowa for DXA scans during May and June 2003 were given a questionnaire prior to their scan and offered the opportunity to participate in this study. The densitometry center serves as the sole DXA scanning unit for the University of Iowa Hospitals and Clinics (UIHC) and its affiliated satellite clinics. Over 60% of patients seen at UIHC live within 30 miles of the medical center and 88% live within 90 miles. The center performs 2500 DXA scans per year and approx 90% of these patients are referred by UIHC staff and 10% are referred directly to the center from outside providers. Historically, over 90% of patients are referred for their DXA scans by physicians, with the remainder being referred by nurse practitioners and physician assistants. Of those patients referred by physicians, approx 20% are
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referred by residents or fellows. Approximately 20% of patients are referred for their DXA scans by general internists, 16% by family practitioners, 16% by rheumatologists, 15% by endocrinologists, and 9% by obstetricians/gynecologists, with the remainder being referred by various other providers. The study design was approved by the University of Iowa’s Internal Review Board.
Survey The questionnaire requested demographic information and contained six additional questions. Two questions asked patients about personal and family history of osteoporosis and/or osteopenia. A third question asked the patients to choose how they “would most prefer to be notified of their bone density scan results.” Possible responses included phone call from your primary provider, e-mail from your primary provider, in-person office visit, letter from the bone density center, and other. The final three questions used a 5-point Likert scale (ranging from 1 = not at all worried/interested to 5= very worried/ interested) to address the following issues: • “How interested would you be in being mailed a copy of your bone density result along with some educational material about what the test result means?” • “How worried are you about the possible results of the bone density test?” • “How worried are you that your provider might not check on all of the test results he/she orders?” The survey was initially pilot tested on 25 consecutive patients presenting for DXA scanning to ensure clarity of wording of each question. Based on review of the pilot data and initial review of patient responses, no modifications were made.
Statistical Methods Descriptive statistics were generated on the aggregate data to characterize patient preferences for being informed of their DXA scan results and responses to other questions. Next, responses to individual questions were examined in subgroups stratified according to age (less than 50, 50–64, and 65 yr and older), gender, and personal history of osteoporosis. Statistical significance was assessed using the chi-squared test. Finally, logistic regression was used to explore independent relationships between patient characteristics and questionnaire responses (preferences for notification, level of worry about their DXA scan results, and level of worry that their results would not be checked). All p-values are two tailed, with values less than 0.05 deemed statistically significant. Analyses were performed using Stata 8.0 (Stata Corp., College Station, TX).
Results Of 206 patients who were offered questionnaires, 202 (98%) agreed to participate in the study. The mean age of sur-
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Fig. 2. Patient preference for learning of their DXA results.
vey respondents was 54 yr and 80% were female. The range of ages for female patients (14–85) and male patients (10–79) were similar. Twenty-three percent of participants reported a personal history and 20% a family history of osteoporosis and/or osteopenia.
Patient Preference for Learning Their DXA Results When asked how they would most prefer to learn of their DXA scan results, 51% chose the option to receive their results by mail from the scanning center, 28% chose a phone call from their primary care provider, and 11% chose an office visit (Fig. 2). Stratification by age, sex, family history, and personal history of osteoporosis did not reveal any significant differences among groups either using chi-squared testing or in the logistic regression model (Table 1). In a follow-up question, 90% of respondents reported the combined end point of being slightly or very interested (“high interest”) in receiving a copy of their DXA scan report and educational material about osteoporosis by mail. Using chi-squared testing, patients in the youngest age group (age<50) were significantly more likely to report high interest in receiving material by mail compared with patients in the oldest age group (age > 65) (p = 0.03). However, in the logistic regression model, after adjustment for sex and family and personal history of osteoporosis and/or osteopenia, this difference was no longer statistically significant (odds ratio [OR] for high interest in the youngest age group compared with the oldest age group= 2.40; 95% confidence interval [CI]: 0.91–6.31; p = 0.14).
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Cram et al. Table 1 Patient Responses Stratified by Age and Sex Age 50–64 (n = 82) number responding (%)
Age ≥65 (n = 55) number responding (%)
17 (27) 7 (11) 6 (9) 33 (52) 1 (2)
21 (25) 10 (12) 8 (10) 40 (49) 3 (4)
16 (30) 1 (2) 7 (13) 27 (51) 2 (4)
2 (3) 1 (2) 0 (0) 13 (20) 49 (75)a
3 (4) 1 (1) 5 (6) 7 (9) 66 (81)
4 (7) 2 (4) 2 (4) 7 (13) 39 (72)
12 (18) 21 (32) 13 (20) 15 (23) 4 (6)
29 (35) 23 (28) 13 (16) 9 (11) 8 (10)
18 (33) 16 (29) 10 (18) 9 (16) 2 (4)
32 (50) 16 (25) 9 (14) 6 (9) 1 (2)
52 (63) 18 (22) 5 (6) 4 (5) 3 (4)
40 (74) 9 (17) 2 (4) 1 (1) 2 (4)
Age <50 (n = 65) number responding (%) Question 3: Preferred method of notification Phone: E-mail: Office Visit: Letter from Bone Density Center: Other: Question 4: Interest in being mailed results Not at all interested Not very interested Unsure Slightly Interested Very Interested Question 5: Worry about DXA results Not at all worried Not very worried Unsure Slightly Worried Very Worried Question 6: Worry about provider not checking results Not at all worried Not very worried Unsure Slightly Worried Very Worried
Note: Percentages may not add up to 100% for each cell because of non-responses to particular questions &/or rounding. a Pearson χ = 0.03 comparing combined category of slightly/very interested in receiving results by mail between age group <50 and age group >65.
Patient Worry About DXA Scan Results In the aggregate analysis, 59% of patients surveyed reported that they were either not at all or not very worried (“low worry”) about their potential DXA scan results; however, 16% and 7% responded that they were slightly and very worried, respectively (“high worry”). In a univariate analysis after stratification by age, patients in the youngest age group tended to be more likely to report high worry when compared with patients in the oldest group, but this difference did not reach statistical significance (p = 0.20). In the logistic regression model after adjustment for patient-level variables, there was a trend toward patients in the youngest group being more likely to report having high worry compared to those in the oldest group (OR = 2.95; 95% CI: 0.94–9.27; p = 0.06). In addition, patients with a personal history of osteoporosis and/or osteopenia were significantly more likely to report high worry about their DXA scan results when compared to
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those without such a history (OR = 2.78; 95% CI: 1.57–4.91; p < 0.001).
Patient Worry About Provider Not Checking Test Results In the aggregate analysis, when asked about their worry that their provider might not check on all test results he/she ordered, 84% reported being not at all worried or not very worried (“low worry”); 9% reported being slightly or very worried (“high worry”). In the logistic regression model after adjustment patient-level variables, those in the youngest age group were more likely to report high worry that their provider might not check all test results when compared to patients in the oldest age group (OR = 9.06; 95% CI: 1.00–84.4; p = 0.05). In addition, patients with a personal history of osteoporosis and/or osteopenia were significantly more likely to report high worry when compared to those who did not have a personal history of osteoporosis (OR = 2.65; 95% CI: 1.15–6.15; p = 0.02).
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Patient Preference for DXA Scan Reporting
Discussion The results of this survey demonstrate that patients undergoing bone densitometry at an academic medical center were interested in receiving greater access to their test results along with educational information about osteoporosis. Furthermore, a majority of patients indicated that they would prefer to learn of their results via mail directly from the DXA center rather than the more traditional pathway of phone call or office visit from their primary provider. The results of this survey also suggest that a majority of patients were not significantly worried about the potential results of their bone density scan and that most patients do not worry that their providers might not follow up on all test results that are ordered. These results are cause for both hope and concern. The results of this study are cause for hope because patients appear receptive to a patient activation intervention related to their osteoporosis care. More specifically, they appear interested in receiving greater access to their DXA scan results and educational material about osteoporosis. However, the finding that a majority of patients undergoing DXA scanning were not worried about the potential results of the test is cause for concern. If patients are not worried about their potential DXA scan results, the probability of patients taking action based on these results might be reduced. Does the patients’ lack of worry reflect patient personality, a lack of understanding about the potential implications of their DXA results, or a combination of the two? Available data suggest that poor patient understanding of osteoporosis might play an important role (22,23). The patients’ relatively low level of worry about provider failure to follow-up on ordered test results is also grounds for concern. Although provider failure to follow up on abnormal test results has not been extensively studied, a limited body of research suggests that the problem might be widespread. Boohaker et al. surveyed physicians regarding their selfreported follow-up of abnormal tests and found that 30% had no consistent method for ensuring that all abnormal test results were conveyed to patients (24). Schiff et al. reviewed potassium prescribing at an academic medical center and found that 3% of potassium prescriptions were given to patients whose last recorded potassium was markedly elevated (25). In addition, preliminary studies suggest that provider follow-up of abnormal mammography results (Pinckney et al.) and abnormal thyroid function tests (Schiff et al.) is also problematic (26,27). Finally, preliminary results from our own institution have shown that providers might fail to recognize a significant percentage of screening DXA scan results (6). The results of the current study suggest that patients might be unaware or generally unconcerned about the possibility that their provider might not follow up on all test results that are ordered. There are several limitations of the current study. First, the results of this study come from a single medical center with a racially homogeneous patient population (greater than 90% white), so extension of these findings to other patient popula-
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279 tions might yield different findings. Second, this study was conducted at an academic medical center, albeit one that provides a significant quantity of primary care. Extending these findings to private practice and primary care settings where a majority of bone densitometry is performed requires careful consideration. Third, the current study did not examine whether patient preference for learning about their DXA results might vary depending on whether the test result is normal or abnormal, despite the fact that there is evidence that this could be important (17). Fourth, the wording of the question asking patients “how worried they are that their provider might not check all test results” implies that there is cause for concern. The bias contained in this question makes it difficult to interpret the potential significance of the 9% of patients who reported being worried. Finally, this study might have been underpowered to detect clinically important differences related to test result reporting. Although this initial study suggests that patients undergoing DXA scanning are interested in receiving their results by mail, a number of questions remain to be answered. It will be important to clarify both how patients want to be notified (e.g., mail, phone, e-mail) and by whom they want to be notified (e.g., ordering provider, DXA center staff). Future studies will also need to clarify whether preferences for test notification differ among different patient populations and different practice settings. Such studies will need to assess how notification preferences differ depending on prior bone health, socioeconomic measures, and comorbidities. Even if patients are interested in receiving their DXA results and information about osteoporosis by mail, creating such mailings will be challenging because treatment is seldom recommended based on bone density alone. In the interim, providers should work to develop systems to ensure that patients are consistently informed of their DXA scan results and that patients understand the interventions that are available to minimize fracture risk.
Acknowledgments This work was funded in part by a new investigator award to Dr. Cram from the University of Iowa College of Medicine and an unrestricted grant from Proctor & Gamble Inc.
References 1. Ray NF, Chan JK, Thamer M, Melton LJ. 1997 Medical expenditures for the treatment of osteoporotic fractures in the United States in 1995: report from the National Osteoporosis Foundation. J Bone Miner Res 12:24–35. 2. Melton LJ, Thamer M, Ray NF, et al. 1997 Fractures attributable to osteoporosis: report from the National Osteoporosis Foundation. J Bone Miner Res 12:16–23. 3. Tosteson ANA, Grove MR, Hammond CS, et al. 2003 Early discontinuation of treatment of osteoporosis. Am J Med 115:209–216. 4. Cuddihy MT, Gabriel SE, Crowson, CS, et al. 2002 Osteoporosis intervention following distal forearm fractures: a missed opportunity? Arch Intern Med 162:421–426. 5. Pressman A, Forsyth B, Ettinger B, Tosteson ANA. 2001 Initiation of osteoporosis treatment after bone mineral density testing. Osteoporos Int 12:337–342.
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280 6. Cram P, Rosenthal GE, Ohsfeldt R, Wallace R, Schlechte J. 2003 Loss to follow-up after newly diagnosed osteoporosis on screening DEXA scan. 20th Annual Midwestern Meeting of the Society for General Internal Medicine. Chicago, IL, 2003 (abstract). 7. Green LW, Werlin SH, Schauffler HH, et al. 1977 Research and demonstration issues in self-care: measuring the decline of medicocentrism. Health Education Monographs 5:161–189. 8. Janz NK, Becker MH. 1984 The health belief model: a decade later. Health Educ Q 11:1–47. 9. Bronson DL, Rubin AS, Tufo HM. 1978 Patient education through record sharing. Qual Rev Bull 4:2–5. 10. Morisky DE, Bowler MH, Finlay JS. 1982 An educational and behavioral approach toward increasing patient activation in hypertension management. J Community Health 7:171–181. 11. Greenfield S, Kaplan S, Ware JE. 1985 Expanding patient involvement in care. Ann Intern Med 102:520–528. 12. Rachmani R, Levi Z, Slavachevski I, Avid M, Ravid M. 2002 Teaching patients to monitor their risk factors retards the progression of vascular complications in high-risk patients with type-2 diabetes mellitus—a randomized prospective study. Diabet Med 19:385–392. 13. Norris SL, Engelgau MM, Venkat-Narayan KM. 2001 Effectiveness of self-management training in type 2 diabetes. A systematic review of randomized controlled trials. Diabetes Care 24:561–581. 14. Boulware LE, Daumit GL, Frick KD, et al. 2001 An evidencebased review of patient-centered behavioral interventions for hypertension. Am J Prev Med 21:221–232. 15. Gibson PG, Powell H, Coughlan J, et al. 2003 Self-management education and regular practitioner review for adults with asthma. Cochrane Database of Systematic Reviews [CD001117]. 16. Wolf FM, Guevara JP, Grum CM, et al. 2003 Educational interventions for asthma in children. Cochrane Database of Systematic Reviews [CD000326].
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Cram et al. 17. Levin KS, Braeuning P, O’Malley MS, et al. 2000 Communicating results of diagnostic mammography: what do patients think? Acad Radiol 7:1069–1076. 18. Bassett LW, Bomyea K, Liu S, Sayre J. 1995 Communication of mammography results to women by radiologists: attitudes of referring ahealth care providers. Radiology 195:235–238. 19. Liu S, Bassett LW, Sayre J. 1994 Women’s attitudes about receiving mammographic results directly from radiologists. Radiology 193:783–786. 20. Dolan NC, Feinglass J, Priyanath A, et al. 2001 Measuring satisfaction with mammography results reporting. J Gen Intern Med 16:157–162. 21. Priyanath A, Feinglass J, Dolan NC, Haviley C, Venta LA. 2002 Patient satisfaction with the communication of mammographic results before and after the mammography quality standards reauthorization act of 1998. Am J Radiol 178:451–456. 22. Ungan M, Turner M. 2001 Turkish women’s knowledge of osteoporosis. Fam Pract 18:199–203. 23. Sedlak CA, Doheny MO, Jones SL. 2000 Osteoporosis education programs: changing knowledge and behaviors. Public Health Nurs 17:398–402. 24. Boohaker EA, Ward RE, Uman JE, McCarthy B. 1996 Patient notification and follow-up of abnormal test results: a physician survey. Arch Intern Med 156:327–333. 25. Schiff GD, Aggarwal HC, Kumar S, McNutt RA. 2000 Prescribing potassium despite hyperkalemia: medication errors uncovered by linking laboratory and pharmacy information systems. Am J Med 109:494–497. 26. Pinckney RG, Pam VM, Coahran M, Berta GM, Littenberg B. 2001 Delay to biopsy after a positive mammogram. J Gen Intern Med 16(Suppl 1):213 (abstract). 27. Schiff GD, Kim S, Wisniewski MF, Bult J, Fogelfeld LA, Krosnjar N. 2003 Every system is perfectly designed to…missed diagnosis of hypothyroidism uncovered by linking lab and pharmacy data. J Gen Intern Med 18(Suppl 1):295 (abstract).
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