What you can do to be a better risk communicator (Adapted from Gates, 2004)

Effectively communicating statistical information about risks and benefits is not specific to the field of medical genetics. Instead, it is a common challenge in all areas of medicine. The average patient has a limited capacity for understanding probabilities and numerical data (low "numeracy"), even among patients with a high school education or a higher degree (Schwartz, 1997; Chase, 1986). The patient's concept of personal risk results from a combination of his/her understanding of the objective data in addition to the perceived burden of the outcome, its controllability, personal experience with the outcome, and preconceived notions of risk (Gates, 2004; Vlek, 1987).

• Assess the patients' literacy and numeracy.

  Numerous studies suggest that patients have a limited capacity for understanding probabilities and numerical information (low "numeracy") in both clinical genetics and other medical settings. In one study, Schwartz et al. (1997) used 3 measures to assess numeracy among 500 women (average number of times a coin will land on heads out of 1000 flips, ability to convert 1% to a rate, and ability to convert 10/10,000 to a percentage). The authors then correlated this information with the women's ability to adjust their perceived risk of breast cancer death after receiving information about the risk reduction offered by mammography. The median age of participants was 68 years and 96% were high school graduates. Only 54% answered the coin flip and conversion of a percent to rate questions correctly. Only 20% could convert a rate to a percent. Numeracy was significantly associated with ability to accurately perceive one's risk reduction related to mammography, although only 40% accurately perceived risk even when they were able to answer all 3 numeracy questions correctly. Only 5.8% accurately adjusted their risk perception when they got no correct numeracy responses (almost one third of the women studied).

• Identify background knowledge and personal experience with the condition(s), available tests or management options, and preconceived notions about personal risk.

  Risk perception is not only determined by a patient's numeracy, but is also significantly influenced by each patient's experience and attitudes. Gates (2004) described four major mechanisms for comprehending risk that women making prenatal genetic testing decisions used (fig. 1).

  Anchoring A preconceived sense of risk serves as the starting point (anchor) for risk perception. The preconceived risk "pulls" the objective risk data communicated by the healthcare provider away from the actual risk. Therefore, post-counseling risk perception is often higher or lower than the objective risk data provided depending on where one's anchored risk started. Framing Subtle differences in the healthcare provider's approach to presenting data can significantly alter the patient's perception. For instance, discussing data in terms of the chance of an abnormal outcome may lead to a higher risk perception than the same data presented as the chance for a normal outcome. While it is important to convey the chance of an adverse outcome, it is often useful to remind the patient of the likelihood of a normal outcome in the same conversation. Representativeness What an individual perceives as representative of the outcome influences his/her ideas about the burden of risk, and, therefore, perception of personal risk. For instance, a woman at risk for hereditary breast cancer whose mother died when the woman was a young teenager will likely perceive her risk of breast cancer as greater than a woman whose mother was diagnosed in her late 40s and is now cancer-free. Availability When examples of an adverse outcome can be easily brought to mind, the risk will seem higher. While the actual risk data for having a pregnancy with triploidy may be exactly the same, the perception of personal risk is likely to be higher for a couple who has had a previous pregnancy with triploidy than for a couple who has never heard of triploidy.

• Present risk information in a variety of ways, and in the context of the patient's experience and preconceptions.

  While different approaches will be required for patients of varying cultures, experiences, and educational attainment, some generalities can be drawn.

  • Discuss statistics as rates versus proportions.

    Several studies have indicated that individuals understand rates more clearly than proportions (2/1,000 vs. 1/500) (Schwartz et al., 1997; Grimes and Snively, 1999; Van Vliet et al., 2001). For many, a 1/500 risk sounds greater than a 1/200 risk because the denominator is larger; whereas, 2/1,000 is more easily recognized as a lower risk than 5/1,000.

  • Compare an individual's data to baseline data.

    Studies indicate that comparing an individual's risk to a baseline risk (population risk, before vs. after testing, etc.) improves comprehension (Schwartz et al., 1997). It also appears useful to compare risks to those commonly undertaken in everyday life (car accident, lightening strike).

  • When possible, present data in a visual manner.

    A number of scales, programs and other tools have been developed to help providers visually represent data to patients. Review some of these tools:

    The Paling Perspective Scale (enables comparison of risks in visual format)
    The Wisdome Centre: Risk Communication (describes a few different visual tools, including the Paling Perspective Scale)
    
• Assess the patient's understanding and application of provided risk information to decision-making.

  While risk perception is not the only factor that drives decision-making, it has been shown to have significant influence (Wertz et al., 1986; Shiloh and Sagi, 1989). Exploring how a patient makes a decision will help identify instances where there may be a serious misperception of risk.

  "...it is evident that it is a woman's understanding of information provided during prenatal counseling and care, rather than the actual facts and figures provided, that determines the choices she makes." (Gates, 2004)
• Provide written information that can be reviewed after the consultation.

  The genetic counseling process is often overwhelming for patients due to the amount of information and the emotional nature of the discussion. Patients may not remember verbal information provided during counseling which can cause anxiety and compound the associated feelings of stress.

  A simple approach might include sending a written summary of the consultation. Hallowell and Murton (1998) found that an overwhelming majority of women perceived a written summary of their breast/ovarian cancer genetic counseling session as valuable. They cited such reasons as assisting recall of the content of the discussion, easing understanding, reassurance that they had correctly interpreted the conversation and were taking appropriate measures, and assistance in explaining the information to at-risk family members. This makes the point that genetic counseling often extends to other family members and inaccurate information could be perpetuated if the primary patient is misinformed.

  Another approach is obviously to provide print materials developed by professional, support or other organizations. For rare genetic conditions, these materials can be difficult to find. Some sources of genetics educational materials for patients are reviewed on the "Follow-Up" page of this course.