Ensuring that any benefits of a epilepsy risk assessment tool can be realised
Professor Ridsdale highlights that many of the risk factors for epilepsy mortality are known and calls for greater investment so that this information can be translated into practice and avoidable deaths reduced. Historically, epilepsy has received less research funding that its prevalence and impact warrants (1).
The editorial suggests that a practicable, risk assessment tool could be created so general practitioners (GPs) could identify people with epilepsy on their registers who are at high risk of death and warrant additional support. To ensure the benefits of such a tool are fully realised, GPs will need to be engaged with from the start to maximise its uptake. Death in epilepsy remains a divisive issue. Many clinicians do not currently discuss Sudden Unexpected Death in Epilepsy with their patients (2,3), despite evidence that people with epilepsy want information (4).
The use of such a tool may need to also be incentivised. This would require a reversing of the stripping back of rewards offered via the Quality and Outcomes Framework to GPs for the provision of quality care for epilepsy; 90% fewer points are available in 2014/15 compared to 2013/14 (5)).
Dr Adam Noble
Institute of Psychology, Health & Society,
University of Liverpool, UK.
(1) Gross CP, Anderson GF, Powe NR. The relation between funding by the National Institutes of Health and the burden of disease. N Engl J Med. 1999; 340:1881-1887.
(2) Friedman D, Donner EJ, Stephens D, Wright C, Devinsky O. Sudden unexpected death in epilepsy: knowledge and experience among U.S. and Canadian neurologists. Epilepsy Behav. 2014; 35:13-18.
(3) Morton B, Richardson A, Duncan S. Sudden unexpected death in epilepsy (SUDEP): don't ask, don't tell? J Neurol Neurosurg Psychiatry. 2006; 77: 199–202.
(4) Xu Z, Ayyappan S, Seneviratne U. Sudden unexpected death in epilepsy (SUDEP): What do patients think? Epilepsy Behav. 2015;42: 29-34.
(5) NHS Employers. 2014/15 General Medical Services (GMS) Contract Quality and Outcomes Framework (QOF). Guidance for GMS Contract 2014/15. www.nhsemployers.org/~/media/Employers/Publications/2014%2015%20QOF%20gu... (accessed 10/02/15)
Competing interests: AJN has collaborated with LR.