Fear, risk perception and physician SUDEP risk communication
[Part 3: Challenges; Austin L]
Many physicians do not discuss SUDEP with the parents of children newly diagnosed with epilepsy. Not surprisingly, parents usually also wish to protect young children from this information (RamachandranNair et al., 2013). However, those same Canadian parents say they themselves want to be informed about SUDEP, preferably by their pediatric neurologist at the time of diagnosis. Parents of SUDEP victims say this information should include the actual risk of SUDEP, risk factors, ways to reduce the risk, and an acknowledgement that SUDEP may be out of anyone’s control.
Research shows that SUDEP is very rare in children who are neurologically normal, and that most SUDEP deaths occur in young adulthood (Camfield & Camfield, 2005). Perhaps this, at least in part, accounts for why 60% of Italian and British physicians believe they should discuss SUDEP with ‘very few’ patients (Morton et al., 2006; Vegni et al., 2011). The doctors in the Italian study reported that the most common reason for discussing SUDEP is because of the specifics of the patient’s disease or treatment, which we might assume means higher risk. Other reasons physicians seem reluctant to discuss SUDEP with parents include beliefs that the information may be emotionally damaging or lead to overprotective behaviors, or that it won’t impact behaviors or outcomes (Brodie & Homes, 2008).
One problem with not telling parents about SUDEP is that those who never learn of the possibility and do lose a child to SUDEP express regret, guilt, and dismay that they were uninformed (Nashef et al., 1998). They are left wondering if they had been informed, could they have done something to prevent the death.
A second problem can arise from how risk perceptions are likely to be affected when people who have not been told about SUDEP by their doctors subsequently find SUDEP information on the Internet. We know many people go to the Internet for medical information, sometimes because they feel that the information provided by their doctor was incomplete (Diaz et al., 2002; Downs et al., 2008). Indeed, in the Canadian study cited above, some parents reported that they first learned of SUDEP on the Internet, adding their opinions that this should not be so; that their doctors should have advised them of the risk. The concern when this happens – which is supported by risk perception research – is that people might be more likely, for several reasons, to overestimate the risk of SUDEP when they get information from the Internet than they are if they engage in an informative dialogue with a doctor. Thus, they are more likely to experience the effects doctors are trying to prevent when they keep silent about SUDEP. Certainly this is what at least one neuropsychologist has observed (Mittan, 2010).
One reason for this concern arises from what we know about the effect of emotions on risk perceptions. Doctors report that when parents learn of SUDEP, common emotions are fear and anguish (Vegni et al., 2011). Research on emotions and risk perceptions shows that people feel fear when a risky situation seems highly uncertain and out of their control. When people are afraid, their perceptions of risk increase and they become more pessimistic (Lerner & Keltner, 2001). When discussing SUDEP with a doctor, there is a trusted expert who can help calm the fear and put the risk of SUDEP into perspective. Such an expert is typically not available to parents navigating the Internet.
A second concern arises from what we know about how different styles of communication affect risk perception. When searching the Internet, people may find information provided by health authorities, as well as information by interest groups who are, for example, trying to raise awareness of SUDEP. Information provided by health authorities tends to be science-based with statistical information; interest groups are more likely to use narrative-based communications that convey coherent stories relevant to the risk in question, in addition to perhaps providing science-based information (Downs et al., 2008). Research by cognitive psychologists shows that highly salient communications and personal accounts with details, story, and drama are more easily remembered than factual communications, and that such communications increase people’s assessments of the probability of the event in question (Tversky & Kahneman, 1973 and 1974).
A third concern arises from how risk information is often conveyed on the Internet, including in scientific publications. Many scientific papers report relative risk differences, rather than absolute risk differences. Research shows that relative risk differences are more “impressive” than absolute risk differences, suggesting people are more likely to become alarmed or fearful and over-estimate risk when risk is presented in relative terms (Barratt et al., 2004). Alternatively, some websites or research papers report counts of SUDEP deaths. While this can be useful information, people cannot accurately judge the probability of SUDEP without knowing the denominator – i.e., how many people are in the population at risk. The concern is that simple counts leave risk estimates to the imagination.
Risk communication is not only about conveying probabilities of various events and outcomes. It is also about putting that information into context, discussing effective risk management and preventive behaviors, helping people realize what they can control in their situation, and alleviating exaggerated fear. Effective risk communications are those that accurately convey information in ways that are easily comprehended and address gaps or misunderstandings people’s current understanding of the risk. When physicians are the source of this communication, there is the opportunity for two-way dialogue, to assess and address relevant gaps and misunderstandings in knowledge, and to answer questions that will naturally arise.
Physicians, at the time of epilepsy diagnosis, are in a position to have dialogue with parents about various risks associated with the disease. There is good reason to believe there is benefit in discussing SUDEP at that time, not only to ensure that those at high risk are aware of a relevant risk, but also, for most parents, to circumvent the very real possibility they will learn of SUDEP in other ways, and in particular ways that are likely to lead to exaggerated fear, over-estimates of the actual risks, and well-intentioned but possibly harmful behaviors in reaction to that fear.
Associate Professor, Department of Management, Politics & Philosophy, Copenhagen Business School, Denmark
Guest Researcher, Department of Public Health, University of Copenhagen, Denmark
How to cite:
Austin L. Fear, risk perception and physician SUDEP risk communication. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation [online]. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.
 If the risk of an event for one group is 2% and for another group is 3%, the absolute risk increase is 1%. The relative risk increase is 50% (the absolute increase of 1% divided by the initial rate of 2%).