SUDEP the conversation: why the source matters
[Part 3: Challenges; Te Water Naudé J & Jones L]
The discussion of SUDEP with parents of children with epilepsy remains a controversial topic. SUDEP in children is significantly less common than in the adult population, with 2 per 10,000 person-years being the most widely quoted rate (Donner et al., 2001). The National Institute for Health and Clinical Excellence (NICE) recommends that families or carers of children with epilepsy are provided with tailored information about SUDEP (NICE, 2012). This includes both informing families of the risk of SUDEP and also reassuring those families whose children are at very low risk. SUDEP has become a notoriously difficult subject to raise with parents for fear of upsetting them and not being able to offer preventative measures. A survey revealed that only 20% of UK-based consultant paediatric neurologists provide all parents of children with epilepsy with information on SUDEP. Seven percent did not provide SUDEP information to any parents. The same study reported that 91% of parents wished to receive information on SUDEP, almost all at the time of diagnosis (Gayatri et al., 2010). Arguments are sometimes made that parents should not be informed of the risk of SUDEP at all as it causes anxiety without offering any form of absolute prevention.
As all deaths due to SUDEP are by definition unexpected, there is considerable media attention when cases do occur and particularly so when a child is affected. In an age where patients and relatives increasingly turn to the Internet for information about their condition, there is the potential for families to become aware of SUDEP and not have tailored information about the risk in their child.
An evaluation of the epilepsy service in a tertiary paediatric neurology centre revealed that of fifty families interviewed, 52% were aware of SUDEP. Only 30% of these had been informed by a healthcare professional. The other 70% had been made aware of SUDEP through other sources. The most common alternative source of information was the Internet, followed by the media. Friends, family and schools were also used as sources of information. Whilst raising awareness of SUDEP, these sources can be unreliable. Parents informed in this way do not receive tailored information about their child's individual risk of SUDEP, and this can lead to sometimes unnecessary anxiety amongst parents. During interviews with some parents, it was clear that although the topic of SUDEP itself caused anxiety, a lack of awareness of the rare incidence of the condition appeared to be a factor in many cases.
This supports the notion that all parents should be informed of SUDEP, and reassured if appropriate. By not informing parents at all for fear of unnecessarily upsetting them, the likelihood is that they will be made aware of SUDEP in a less appropriate manner and not adequately informed of their child’s individual risk, which is often extremely low. This is at variance with a view that informing all parents of SUDEP causes unnecessary anxiety.
Johann te Water Naudé, Consultant Paediatric Neurologist, Department of Child Health University Hospital of Wales, Cardiff, UK
Lliwen Jones, Core Medical Trainee, Royal Gwent Hospital, Newport, UK
How to cite:
Te Water Naudé J & Jones L. SUDEP the conversation: why the source matters. 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.