Communicating Risk
COMMUNICATION STRATEGIES ARE KEY FOR BREAST CANCER TREATMENT
Communication between health care professionals and women with breast cancer affects all aspects of the women's treatment program. It is clear that the understanding of, and communication about, risk of cancer recurrence is a difficult, yet fundamental, aspect of treatment decision-making for women with breast cancer and health care professionals working with them. But research suggests there are significant gaps between the intended message and the message received by patients in the physician-patient communication process. 24,25
Before addressing risk communication between patients and their health care professionals, it is important to contextualize this evolving relationship. Historically, health care professionals were viewed, by themselves and by patients, rather "paternally" as the keepers of information and the purveyors of treatment decisions-patients' medical decisions were made by physicians without much discussion with the patients. 26-28 In fact, in 1961, 90% of health care professionals surveyed indicated a preference for withholding information from cancer patients about their diagnoses. 29 In sharp contrast, nearly all health care professionals (97%) surveyed with the same questionnaire in 1977 said they would tell their patients the diagnosis.30 This reflects the significant shift in the way the relationship between health care professionals and patients is viewed in recent years, particularly the degree to which patients are informed and involved in their medical decisions. Ethical, legal and social movements now require that health care professionals communicate with and provide information to patients so they are in a position to participate in informed decision-making about their health care. 26
However, there are discrepancies in the research regarding the actual role patients wish to play in the decision-making process. One study showed that 63% of cancer patients surveyed felt the physician should take primary responsibility for decision-making, while 27% believed it should be a shared process, and only 10% felt they, the patients, should have a major role.26 As with other studies, this research shows that patients have a relatively high desire for information, even though they may express the wish not to be responsible for decisions. 26, 31-33
In direct contrast a study looking specifically at women with breast cancer found that 22% of women wanted to select their own cancer treatment, 44% wanted to select their treatment collaboratively with their physicians and 34% wanted to delegate this responsibility to their physicians. This suggests that, in fact, women with breast cancer do not want a passive role in their treatment, but that a majority of them wish to work collaboratively with health care professionals to determine their best course of treatment. 34 However, this research finds that older patients, on average, do not want as much information or control compared to their younger counterparts. The data have been confirmed through other studies. 31, 32, 34-38
A thorough review of the contradictory findings in studies regarding patient participation in decision-making can be found in Guadagnoli and Ward's 1998 paper, "Patient Participation and Decision-Making." 39Researchers suggested that part of this discrepancy may exist because many studies regarding making medical decisions did not distinguish sufficiently between problem solving (identifying the single correct solution) and decision-making (helping to select the most desired bundle of outcomes). The researchers argued that problem-solving tasks require both a knowledge base and a set of decision-making skills not only to identify the possible alternatives but the probabilities of each likely outcome. This task requires an expertise that allows patients only a limited role for involvement. 40,41Further, the researchers found that while patients do not want to be involved in the problem-solving tasks, few wished to relinquish the decision-making control entirely to their physicians. In fact, the final conclusion of Guadagnoli and Ward's review of the research is that patients want to be informed of treatment alternatives and that they want to be involved in treatment decisions when there is more than one effective alternative available. 39
Despite the shift towards more patient involvement and autonomy in the decision-making process, patients are still strongly influenced by physician communications and recommendations. A recent study published in Medical Decision-Making found that patients' hypothetical treatment decisions were significantly swayed by the manner in which health care professionals make their recommendations (p<0.0001). 42 Patients who chose the treatment offering maximum benefit were more likely to alter their decision if the physician recommended against it, compared to scenarios in which the physician made no recommendation (p<0.0001). 42
Further, a study by Siminoff and Fetting found that breast cancer patients were strongly influenced by health care professionals' recommendations when it came to actual treatment decisions. 43 These results indicate that health care professionals' recommendations significantly affect patient choices when it comes to their treatment decisions, even when the recommendations go against what is "best" and against what the patient would otherwise prefer. 42 In fact, the final recommendation of the physician is often the best predictor of the patient's choice of therapy. 44 This is a very important finding in terms of communication between health care professionals and patients, as health care professionals need to understand the way in which patients view their role when providing information. If patients look to the health care professional for information to make their own decision, it is essential that these professionals provide all of the information possible to help patients make educated decisions and understand their alternatives and their risks.
Questions still remain, however, regarding the true link between the patient's desire for and provision of information and his or her ultimate involvement in the decision-making process. 26
For the purposes of this paper, we need to explore the elements of communication that might lead to gaps between a patient's understanding of his or her risk of recurrence and how it is being communicated by the health care professional. Because of this lack of understanding, there may be a vast difference between the estimated magnitude of risk and the patient's perceptions, interpretations and beliefs about those risks.
Understanding Risk
The two main assumptions underlying risk communication research are that patients lack a clear understanding of cancer risks and that if patients were well-informed about their risks, they could make informed, prudent choices regarding treatment and lifestyle changes. 45
The two components to an understanding of risk are the probability and seriousness of the threat, and how the threat can be controlled. 46 Patients may resist discussions surrounding risk of recurrence, thus keeping themselves from understanding the full import of their risk and their options for combating that risk. Even when patients do discuss risk, many studies have shown that they tend to have inaccurate perceptions of their risk. These inaccurate risk perceptions can come in two forms: optimistic bias and pessimistic bias.
On one hand is an optimistic bias. As a leading risk communication investigator noted about this phenomenon, "Risk perception is not an unbiased appraisal of information, but rather an attempt to seek the most comforting view of one's personal vulnerability that fits within the bounds of the evidence." 47
Studies indicate that when comparing themselves to others, individuals with an "optimistic bias" will often claim that they are at lower risk of bad outcomes and higher probability of good outcomes than the average person, particularly when they believe a particular hazard is preventable. These optimistic biases seem to be unrelated to age, sex, level of education or occupation. 48-50
On the other hand, some studies have found that many people overestimate their cancer risk, thereby demonstrating a "pessimistic bias," meaning they believe they have a greater absolute risk of recurrence than they actually do. 45 For example, all participants in one study overestimated their lifetime risk of getting breast cancer. 51 While another study of women with ductal carcinoma in situ, an early, non-invasive stage of breast cancer, perceived their risk of recurrence and dying from breast cancer as similar to that of women with early stage invasive cancer--an overestimation of their true risk.
Because of their overestimation of risk, the women studied also indicated that they suffered psychological distress because of this belief. 53 Moreover, many patients, especially those who are more worried, maintain their elevated perception of their risk of cancer even when told by trusted health care professionals that their risk is lower than they thought. 25
There are ways of resolving these apparently contradictory results regarding optimistic and pessimistic risk perception: first, it could be that individuals overestimate the risk of bad outcomes, but do so more for others than for themselves. Second, when estimating the likelihood of unlikely events (which many of the health risks studied are), respondents tend to overestimate rather than underestimate. If the true risk is 10%, for example, there is much more room to move up than to move down, so overestimating is more likely.
Little is understood about how women with breast cancer or other diseases process risk information over time and how this processing may differ as a function of risk status, individual differences, social context, as well as other factors. 53 Decisions and behavior are not determined by knowledge alone-there are many other powerful factors involved, including emotions, values, social pressures, environmental barriers and economic realities. Education does not necessarily correlate with wise decisions. 47 Researchers have also documented that patients generally have considerable difficulty understanding and working with risk calculations and probabilities when health care professionals provide them, an important element for understanding risk. 47,54
Additionally, a survey of breast cancer patients, published in the Journal of Clinical Oncology in 1998, showed that only 39% of the women recalled receiving estimates of their risk and only 31% of women received a comparison of their risk with and without adjuvant therapy. 55 But women's perceptions and ability to recall risk information is only half of the challenge.
Communicating Risk
Effectively communicating any cancer risk information is fundamentally challenging for health care professionals as well. Not only do health care professionals have to communicate often contradictory and inconclusive information thoroughly and effectively, but they must also understand how the patient perceives the information so that misperceptions can be corrected. 55 This difficulty is highlighted by current data from genetic counseling, which show that even with communication in one-on-one settings there are still few perfect matches between the message communicated and the message received. 56
The way in which health care professionals present cancer risk information is critical to patient understanding and acceptance of the information. 57 Because it is difficult to convert population-based estimates of cancer risk to precise statements of individual risk, it is difficult to ensure that "actual risk" is effectively communicated and accurately perceived. 58 Additionally, evaluation of cancer risk based on all of the available scientific evidence does not guarantee the predicted clinical outcome. Currently, there is a considerable unmet need in terms of cancer risk communication research to help health care professionals utilize best practices to most effectively impart highly scientific, as well as personally relevant, information to patients. 45
Health care professionals tend to use specialized language (or jargon) that patients find difficult to understand. 59 This can include using acronyms, words and phrases that represent biological conditions, clinical procedures, laboratory results, etc. 59 Many experts use the term "risk" as a technical term that refers to a particular known probability while the general public attaches many different meanings to the term, such as possibility of loss or injury; level or degree of danger; and others.
The emotional element, as well, isn't relegated entirely to the patient "side" of the communication process. Research has found that health care professionals often base their communication of risk on emotion and personal conviction rather than the outcomes of scientific studies. Studies have shown that health care professionals find the communication of bad news emotionally difficult, and that this difficulty affects their method of imparting information. 60
The various elements that contribute to any communication, particularly something as important as risk of recurrence communication, are important to consider. As Dr. Richard Klausner of the National Institutes of Health said, "We know far less about how to communicate risks than we know about how to calculate them." 61 Thus improving the communication practices by health care professionals surrounding risk of breast cancer recurrence is a fundamental and integral element of providing the best possible care for patients. This is particularly apparent given that a number of studies have demonstrated a correlation between effective physician-patient communication and improved patient health outcomes. 62
While there are still many questions regarding the best means for sensitively and effectively communicating cancer risk information, studies have begun to focus on potential tools and communication strategies that health care professionals might use to overcome some of the difficulties surrounding risk communication. Based on a review of the empirical research regarding approaches to communicating health risk information, researchers determined that people do not tend to respond consistently to communication strategies that rely on the presentation of numerical risk information as the sole tool. Specifically, people will not always respond to a given probability in the same way-10% risk is sometimes perceived differently if it is presented as a percentage or an odds ratio or if it is presented numerically or pictorially. 63 People have a difficult time interpreting statistical information identifying their risk. In one study, researchers found that combining tailored print communications and a call from a telephone counselor succeeded in bringing women's perceptions about developing breast cancer (the women studied did not have breast cancer) more accurately in line with their actual risk when compared with women who received either tailored printed information alone or no information. 64 This is just one of numerous studies that are being funded by organizations such as the U.S. National Institutes of Health, in an attempt to close the gap in communicating cancer risk.
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