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Explaining risks and benefits

Discussing the risks and benefits of an intervention, or of not intervening, and the risks associated with a condition is an essential part of clinical practice. However, it is surprising that the tools found by research studies to be the most effective way of doing so are not more widely available and that so little is provided for children. Sudden unexplained death in epilepsy (SUDEP) is one typical example. Should every newly diagnosed child with epilepsy and their family be informed about it? Many clinicians feel reluctant, but families do want to know and when SUDEP does occur families often complain that they were not told about it. A recent review, official guidelines, and patient support groups recommend discussing death from epilepsy as part of a comprehensive discussion of risks and prevention. The review suggests comparing the risk for adults to the yearly risk of death in a motor accident but the latter groups, while producing printed and web-based information, do not advise how to explain the risk and none suggest how to tell a child. Much risk communication relies on words, but terms such as ‘likely’, ‘unlikely’, ‘possible’, and ‘probable’ are understood in very varied ways. Using numbers feels more accurate but this alone is not an effective method. For example, one report states ‘Sudden death is nearly 24 times more likely in people with epilepsy’, but not whether this means that in 1000 people with epilepsy the risk increases, say, from 1 to 24 or from 10 to 240. Figures such as ‘0.09 to 2.3 per 1000 patient-years’ can be misinterpreted, especially as not all know what a patient-year means. Some adults understand 1 in 200 to be a greater risk than 1 in 20. Research-based advice includes using absolute numbers and a consistent denominator – for example, so many per thousand; giving both positive and negative perspectives, and visual aids. The latter include tables comparing a risk to the probability of more familiar events occurring such as winning a lottery or death from car journeys; palettes representing 1000 people to show proportions visually, and pie charts. Nearly all this research is adult-orientated, although one study has found that pie charts are an effective method in children too. Communicating risk and benefit becomes even more difficult when precise data from large scale studies are not available. Unless it has been audited, the need to estimate from personal experience is full of bias, but for many conditions in children it is the only option. For example, steroid treatment is recommended in people with Duchenne muscular dystrophy, but it is difficult at present to accurately quantify the benefits in terms of functional gain and the risks of weight gain, height restriction, vertebral compression fracture, and other adverse effects, especially with different preparations and dose regimens. However, surgical interventions probably do need a personal element based on the number of times a surgeon has performed a procedure and the audited outcome, put in perspective by comparison with national data. Another factor is the nature of the risk: evidently a 5% (or 50 in 1000) risk of death is very different from a 5% risk of a skin rash. The interpretation of this aspect of a risk or benefit is affected by personal and cultural factors not only in patients or carers, but in their health professionals too: for example, liver specialists may be more reluctant to prescribe valproate than neurologists. If given a choice, many children would refuse a blood test whatever the expected benefit. So-called ‘heroic’ interventions usually mean ones with a high risk of serious outcomes which are only justified by the risk from not acting. Returning to SUDEP, most deaths in children with epilepsy are explained by and are due to the underlying neurological condition. Epilepsy-related deaths are difficult to quantify, but primarily occur in adolescence and adulthood. The probable childhood SUDEP rate is about 1 in 10000 patient years. Parents would prefer to tell their children about the risk themselves. When advising that patients are to be informed about SUDEP, the relevant organizations should also produce childfriendly information that incorporates visual representation of the risks for specific epilepsies and seizure types in specific age groups. The expected benefit of treatment and treatment compliance needs to be presented in the same way. Where there is insufficient data to give precise figures, a consensus ‘expert opinion’ would be preferable to individual estimates. Finally, checklists appear a very useful way of recording what has been discussed. All this could be equally applied to other conditions and interventions.