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Patients’ Resistance to Risk Information in Genetic Counseling for BRCA1/2
Andrea D. Gurmankin, PhD, MBe;
Susan Domchek, MD;
Jill Stopfer, MS;
Christina Fels, MS;
Katrina Armstrong, MD, MSCE
Arch Intern Med. 2005;165:523-529.
ABSTRACT
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Background Risk information from health care providers is relevant to and used in nearly all medical decisions. Patients often misunderstand their risks, yet little is known about the risk perception that patients derive from risk communications with health care providers. This study examines patients’ risk perceptions following communication with health care providers during genetic counseling about the risks of breast cancer and BRCA1/2 mutations.
Methods A prospective, longitudinal study was conducted from October 2002 to February 2004 of women who received genetic counseling. The women completed a survey before their counseling and a telephone interview in the week after the counseling. Main outcome measures included change from precounseling in risk perception and accuracy of postcounseling risk perception (relative to actual risk information communicated).
Results A total of 108 women agreed to participate in the study. The women’s postcounseling risk perceptions were significantly lower than their precounseling risk perceptions (breast cancer: 17%, P<.001; mutation: 13%, P<.001) but were significantly higher than the actual risk information communicated (breast cancer: 19%, P<.001; mutation: 24%, P<.001). Accuracy of breast cancer risk perception but not mutation risk perception was associated with precounseling worry (P = .04), even after adjusting for trait anxiety (P = .01).
Conclusions This research demonstrates patients’ resistance to risk information. Inappropriately high risk perception derived from a risk communication with a health care provider can lead patients to make different, and potentially worse, medical decisions than they would with an accurate risk perception and to be unnecessarily distressed about their risk.
INTRODUCTION
The concept of perceived risk figures prominently into most models of health behavior, such as the Health Belief Model, Theory of Reasoned Action, and Subjective Expected Utility Theory.1-3 Much research has examined people’s risk perception and knowledge about health risks as varied as motorcycle crashes, cancer, and unwanted pregnancy.4-25
The conventional wisdom resulting from this research is that many people misunderstand their risks. When asked to do so, people judge the probability of the health risks that they face in inaccurate or biased ways. For example, one line of risk perception research has consistently found that people are unrealistically optimistic about their risks. That is, most report the belief that they are at lower risk than the average person of experiencing negative health outcomes.4-16 However, other work13, 17-25 has found that when estimating one’s absolute cancer risk, people demonstrate a pessimistic bias. Several studies17, 22, 24 have demonstrated that when asked to estimate their absolute risk of breast cancer, most women overestimate: they provide a numeric estimate that exceeds their predicted risk. Collectively, these results suggest that people overestimate the likelihood of various risks but more so with others’ risks than with their own.
These studies have examined risk perception generally, tapping into the various sources of risk information that influence a person’s risk perception, such as personal experiences, the media, cultural concepts, and the Internet. Thus, this work has provided only limited insight into the risk perception that patients derive from an important source of information: their health care provider. Risk information from health care providers is relevant to and used in nearly all medical decisions. To further our understanding of the causes of patients’ misunderstandings of their health risks, as well as our ability to develop interventions to prevent these misunderstandings, it is critical to examine risk perception that results from health care provider–patient risk communications.
The objective of this study is to examine the risk perception that is derived from a risk communication with a health care provider during genetic counseling for breast cancer and BRCA1/2 mutation risks. This clinical setting is well suited for exploring this objective because a risk communication is consistently and explicitly provided to patients. We examined patients’ risk perception about their breast cancer and BRCA1/2 mutation risks following genetic counseling and the determinants of the discrepancies between the risk information in the communication and patients’ subsequent risk perception.
METHODS
This study was conducted at the University of Pennsylvania Breast and Ovarian Cancer Risk Evaluation Program (CREP), which is a clinical and research program that provides patients with breast cancer and BRCA1/2 mutation risk assessment, genetic counseling, and genetic testing for BRCA1/2 mutations. The study protocol was approved by the institutional review board of the University of Pennsylvania.
Consecutive new patients visiting CREP were approached for the study from October 2002 to February 2004. Patients completed a precounseling questionnaire. As part of their usual care at CREP, patients received individualized risk information (ie, a numeric probability estimate on a 0% to 100% scale) about their actual breast cancer risk, their mutation risk, or both (depending on whether they had had breast cancer and had had genetic testing). Each individual’s actual risk was calculated from the breast cancer risk models of Gail et al19 and/or Claus et al26 and the models for mutation risk of Blackwood et al27 and/or Myriad,28 but for some patients, one model was more appropriate than the other.29 Therefore, using clinical judgment,29 the appropriate model was used for each patient, and only the risk information from that model was communicated to the patient. For all patients, the individual risks were communicated orally (with no pictures or graphs) twice during the visit, once by a physician and once by a genetic counselor. The individual risk estimates that were communicated to each patient were recorded in her medical record.
In the week after receiving the risk communication, consecutive eligible patients were contacted by telephone and asked to participate in the study. Patients were considered ineligible if they were male or if their health care provider at CREP indicated that they were too ill to participate. If the patient consented to participate, a structured interview was conducted.
MAIN OUTCOME MEASURES
Precounseling Survey
The precounseling survey assessed patients’ breast cancer risk perception (if they had not already had breast cancer) and BRCA1/2 mutation risk perception (possible range, 0%-100%), worry about breast cancer (possible range, 1-7) using items by Lerman et al,30 family history of cancer, breast cancer risk reduction behaviors (eg, tamoxifen citrate use), and demographic information.
Postcounseling Interview
In the postcounseling interview, patients were asked about their perceived breast cancer risk and/or BRCA1/2 mutation risk (possible range, 0%-100%), their recall of the actual breast cancer and/or mutation risk information communicated, and their worry about breast cancer (possible range, 1-7), depending on which item they had received a communication about, using the same items as in the precounseling survey. Patients also completed the Spielberger Trait Anxiety Inventory (possible range, 20-80)31 and the Life Orientation Test-Revised,32 a measure of dispositional optimism (possible range, 0-32).
DATA ANALYSES
Four outcome variables were created from the precounseling and postcounseling data (Figure 1). Postcounseling risk perception was subtracted from precounseling risk perception to measure change in risk perception. The individualized risk information communicated (actual risk communicated) to each patient during genetic counseling (ie, a numeric probability estimate), obtained from the patient’s medical record at CREP, was subtracted from postcounseling risk perception to create the accuracy of risk perception. Two additional difference scores were created to represent the 2 processes that might lead to inaccurate risk perception: actual risk communicated was subtracted from risk information recalled to create accuracy of recall, and risk information recalled was subtracted from postcounseling risk perception to create belief in recall. All 4 variables were created for both breast cancer risk and mutation risk.
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Figure 1. Study outcome variables.
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The data were analyzed using Stata 8.0 statistical software (Stata Corp, College Station, Tex). Dummy variables were created for race (white, black, and other), education (completed high school or less, college, and graduate school), Ashkenazi Jewish descent, and personal history of breast cancer. Descriptive analyses were conducted to create summary statistics for patient characteristics.
One-sample t tests were used to determine whether change in risk perception, accuracy of risk perception, accuracy of recall, and belief in recall were significantly different from zero for breast cancer and mutation risks. Univariate linear regression was used to assess the relationships between the predictor variables and postcounseling risk perceptions and accuracy of risk perceptions. For analyses that did not include the actual risk communicated in the dependent variable (ie, postcounseling risk perception did not include this, whereas accuracy of risk perception did), the actual risk communicated was adjusted for in the model.
Multivariate analyses were used to adjust the association between precounseling worry and accuracy of risk perception for anxiety, race, age, and education to assess for potential confounding and effect modification. Case deletion was used in analyses that involved variables with missing data and sequential models.
RESULTS
PATIENTS
A total of 133 patients were eligible for the study. From this group, 2 were excluded because they were too ill to participate, 5 because they were male, and 1 because CREP counselors requested that the patient not be contacted because of confidentiality concerns. Of the 125 eligible patients, 4 could not be contacted after 10 attempts and 13 declined participation. Thus, 108 patients (86%) participated in the study. Patients were 46 years of age on average, and most were white, were married, and had some college education or more (Table 1).
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Table 1. Patient Characteristics and Predictor Variables
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Among the 108 patients, 58 who had not had breast cancer were interviewed about breast cancer risk, and 90 who had not already obtained genetic testing were interviewed about mutation risk. One of these 90 patients was excluded after initiating the interview because she did not understand the word mutation. Forty patients were interviewed about both breast cancer and mutation risk. On average, interviews were conducted a mean ± SD of 5.3 ± 4.3 days after patients received the risk communications.
PRECOUNSELING RISK PERCEPTION
Patients’ mean ± SD precounseling risk perceptions were 61% ± 26% for breast cancer risk and 56% ± 25% for mutation risk, which were significantly higher than their respective actual risks (difference for breast cancer risk: +42%, P<.001; difference for mutation risk: +32%, P<.001).
POSTCOUNSELING RISK PERCEPTION AND CHANGE IN RISK PERCEPTION
Following the risk communications, mean ± SD breast cancer risk perception was 44% ± 24% and mean mutation risk perception was 43% ± 28%, a decrease from precounseling risk perception. Risk perception change (precounseling risk perception minus postcounseling risk perception) for both breast cancer and mutation risk was significantly greater than zero (+17%, P<.001; +13%, P<.001; respectively).
After adjusting for the actual risk communicated, patients’ postcounseling breast cancer risk perception increased with precounseling breast cancer worry (P = .03) but not significantly with trait anxiety (P = .22), dispositional optimism (P = .39), education (P = .47 for graduate school vs high school or less; P = .88 for some or all of college vs high school or less), or age (P = .43). Postcounseling mutation risk perception was not significantly associated with precounseling breast cancer worry (P = .72), trait anxiety (P = .70), dispositional optimism (P = .56), education (P = .31 for graduate school vs high school or less; P = .80 for some or all of college vs high school or less, or age (P = .47).
ACCURACY OF RISK PERCEPTION
On average, accuracy of breast cancer and mutation risk perceptions was significantly positive (Figure 2); patients’ breast cancer and mutation risk perceptions following the risk communication were higher than the corresponding actual risk communicated to them (breast cancer risk: +19%, P<.001; mutation risk: +24%, P<.001).
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Figure 2. Difference between patients’ postcounseling breast cancer (A) and mutation risk (B) perceptions and the respective actual risk communicated.
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Breast cancer risk perception was less accurate relative to the actual risk communicated (ie, accuracy of breast cancer risk perception score increased) as precounseling breast cancer worry increased (P = .03) but was unassociated with anxiety (P = .28), optimism (P = .44), education (P = .46 for graduate school vs high school or less; P = .83 for some or all of college vs high school or less), or age (P = .42). Accuracy of mutation risk perception was unassociated with all of these predictor variables (P = .62, .52, .34, .36, .86, and .90, respectively). In addition, accuracy of mutation risk perception was not associated with having a personal history of breast cancer (P = .41).
In multivariate adjustment for anxiety and anxiety and demographics, the association between precounseling worry and accuracy of breast cancer risk perception remained statistically significant (P = .01 and P = .05, respectively) (Table 2). The association between accuracy of breast cancer risk perception and precounseling breast cancer worry was nearly statistically significant (P = .06) when adjusting for precounseling risk perception, suggesting that precounseling risk perception is not confounded by worry.
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Table 2. Multivariate Analysis of Relationship Between Accuracy of Breast Cancer Risk Perception and Worry
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COMPONENTS OF ACCURACY OF RISK PERCEPTION
Accuracy of risk perception was divided into 2 components: accuracy of recall and belief in recall (Figure 1). Accuracy of recall was significantly positive for both breast cancer and mutation risks, indicating that the risk information that patients recalled was higher than the actual risk communicated to them (+6%, P = .02; +8%, P = .001; respectively). Patients’ belief in recall was also significantly positive for both breast cancer and mutation risks, indicating that their postcounseling risk perception was higher than the risk information they recalled being told (+9%, P = .001; +11%, P<.001; respectively).
COMMENT
The results of this study reveal that women who receive breast cancer and/or BRCA1/2 mutation risk communications as part of standard care for genetic counseling become more accurate in their risk perceptions after the risk communication but demonstrate some resistance to the risk information given. The risk perceptions that they believe after the risk communication during genetic counseling represent a significant overestimate relative to the actual risk communicated. These results replicate those from our earlier work using cancer risk communications in hypothetical scenarios.40 The overestimation is composed of patients both misremembering the risk information they received in the direction of overestimation and adjusting upward from that misremembered information.
Patients’ inflated postcounseling risk perception and tendency to overestimate their risk relative to what the counselor said is correlated with precounseling worry. This finding is consistent with research that demonstrates a positive association between risk perception and worry and/or anxiety.41-48 The current research extends this existing research, however, by demonstrating that worry affects not only postcounseling risk perception but also a resistance to communicated risk information. Furthermore, the longitudinal study design suggests that the relationship between worry and accuracy of risk perception is not bidirectional. Rather, the association suggests that worry drives risk perception and resistance to lower risk information. Furthermore, this relationship remained after adjusting for trait anxiety and demographic characteristics, indicating that it is worry, not underlying trait anxiety, that is responsible for this effect.
The results of this study must be considered within its limitations. First, because the interviewer was not blinded to the hypotheses of the study, it is possible that the interviewer unknowingly used certain language or intonation to elicit hypothesis-consistent responses from the patients. However, a preestablished structured interview was followed, and when patients asked questions with answers that could potentially introduce bias, when possible, the interviewer recited a scripted response. Second, women who undergo genetic counseling for BRCA1/2 testing are not necessarily representative of all women at high risk for breast cancer or BRCA1/2 mutations. An ongoing case-control study49 of patients with a family history of breast or ovarian cancer who did or did not undergo genetic counseling determined that patients who undergo counseling have higher actual breast cancer risk, breast cancer and mutation risk perceptions, and breast cancer worry. These patients may be less likely to reduce their elevated risk perception following a risk communication compared with women who have not sought genetic counseling.
These limitations notwithstanding, the results of this research demonstrate that there is a significant gap in risk communication between health care providers and patients. Previous studies8, 10, 13, 50-60 have found patient misunderstanding of health conditions, risks, and medical information, but most of this research was either conducted outside the context of health care provider–patient communication or addressed misunderstandings about or poor recall of the content of clinical communications other than risk perception.
Studies that have examined risk perception following a risk communication did so in a research setting, not in a clinical setting like the current study, and have yielded mixed results. Lerman et al61 and Lipkus et al62 both provided women with individualized breast cancer risk estimates in a research setting, and their results are consistent with the current study. Eight-two percent of the patients in the study by Lerman et al had a risk perception that was at least 10% higher than the estimate of Gail et al19 that they were given. Lipkus et al found that despite an average risk estimate of 2.6% among the patients in the study, the mean breast cancer risk perception following the communication was 16.8%. However, the results of the current study differ from those of Alexander et al,63 who found that after very clearly and thoroughly presenting women with their Gail et al risk estimate using both visual and verbal communication methods, women’s breast cancer risk perception hardly differed from their Gail et al estimate. Perhaps the message communicated is more likely to be accepted when various communication modes are used and a significant amount of time is spent in the communication.
It is important to consider why patients might be resistant to risk information that indicates that their risk is lower than they thought. First, a high level of worry about breast cancer may act as a filter through which the risk information passes, leading patients to derive a distorted message from the risk communication. Second, being at high risk for breast cancer may become part of a woman’s identity, and although an aversive self-concept, women may nevertheless resist altering this identity in the face of reassuring breast cancer risk information. Third, women may feel anxious about their breast cancer risk regardless of what they are told, and maintaining an inflated risk perception may serve to justify their emotions. Fourth, women may feel the need to maintain an inflated risk perception to keep them motivated to engage in breast cancer screening and preventive behaviors. Fifth, maintaining an inflated risk perception may function as defensive pessimism, whereby women keep themselves prepared for the worst by assuming the worst. Finally, media attention is more frequently focused on breast cancer compared with other risks, and this information may override or counter risk information from health care providers.
Alternatively or additionally, the results of this study may be attributable not to patients’ resistance but to suboptimal health care provider communication. Although each patient was told her risk estimate twice, it is possible that limited appointment times, use of no graphic or visual representations of the risk estimates, incomplete attention to worry, or use of medical jargon impeded patients’ ability to understand, process, remember, and accept the risk estimate communicated to them. However, most patients reported much trust in and understanding of the information communicated to them.
Whatever the causes, inappropriately high (or low) risk perception can lead patients to make different, and potentially worse, medical decisions than they would with an accurate risk perception. For instance, women may elect to undergo potentially risky preventive interventions, such as prophylactic mastectomy or tamoxifen use, because of an inflated breast cancer risk perception. In addition, if patients’ affective response is proportionate to their risk perception, distress level may be unnecessarily increased by inflated risk perception.
The results of this study suggest the need for several next steps. First, this study should be conducted in different medical settings where patients face risks other than breast cancer to determine whether the tendency to overestimate one’s risk is breast cancer specific. Second, it is important to further explore the processes and factors that led to the resistance to risk information seen in this research. Third, a multitude of factors other than health care provider risk communications influence patients’ risk perceptions. These factors, such as the media, cultural concepts, and personal experiences, may actually override information from the health care provider and should be explored in future studies.
Finally, the current findings highlight the need for the development and evaluation of interventions to reduce gaps in health care provider–patient communication. The advent of these interventions and their infiltration into everyday patient care can help reduce the gap between the intended message and the message received in health care provider–patient communication.
AUTHOR INFORMATION
Correspondence: Andrea D. Gurmankin, PhD, MBe, Dana-Farber Cancer Institute, 44 Binney St, Smith 253, Boston, MA 02115 (adg11{at}cornell.edu).
Accepted for Publication: October 20, 2004.
Funding/Support: This study was supported by a clinical research training grant from the American Cancer Society and a Robert Wood Johnson Faculty Scholar Award to Dr Armstrong.
Acknowledgment: We are indebted to Barbara Weber, MD, Amy Badler, BA, Ellyn Micco, BA, the CREP, and the women who participated in the study for their invaluable assistance with this research.
Financial Disclosure: None.
Author Affiliations: Department of Society, Human Development, and Health, Harvard School of Public Health, and Center for Community-Based Research, Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, Mass (Dr Gurmankin); Abramson Cancer Center (Drs Domchek and Armstrong and Ms Stopfer), Department of Medicine, School of Medicine (Dr Armstrong), and Leonard Davis Institute of Health Economics (Dr Armstrong), University of Pennsylvania, Philadelphia; and Department of Obstetrics and Gynecology, Christiana Hospital, Newark, Del (Ms Fels).
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