SUDEP checklists in primary care
Applying the SUDEP Checklist to a General Practice Population: Learning and outcomes
Alistair Gales, Rohit Shankar
Problem and Introduction
The UK has 600 000 people with epilepsy (PWE). In the UK in 2013 there were 1187 people that died from epilepsy, roughly the same amount of people that died from asthma in the same year (1255 asthma deaths) despite there being a population of over 5.3 Million people with asthma. The ONS data for 2013 suggest that up to 60.5% of these epilepsy deaths were seen as avoidable whereas only 25.5% of asthma deaths were. This suggests that there may be some improvement in the way we identify risk and manage our epileptic patients in the community.
Epilepsy is a common presentation in General Practice with Public Health expenditure second only to stroke in neurological conditions. There are around 600 sudden unexpected deaths in epilepsy (SUDEP) in the UK each year, almost 2 deaths a day. Epilepsy is a silent killer with issues of primary mortality being a hidden issue to many clinicians too. The recent loss of the Quality Outcome Framework from primary care to annually review PWE has raised concerns that it might lead to more deaths with GPs and PWE not being aware of risk changes.
To use the newly developed ‘SUDEP and seizure safety Checklist’ (https://www.sudep.org/checklist) to help screen, identify and risk stratify all of the PWE and seizures within a medium sized GP practice that covers a mixed urban and large rural area in the south west of England and has a patient list of roughly 11,000 people. The intention was to create a database of the highest risk individuals of primary epilepsy mortality at the GP practice and allow a baseline risk assessment for each individual who could be reviewed during a consultation or annual review.
The SUDEP checklist is a list of 20 evidence based risk factors that are based around patients’ demographics, seizure type, lifestyle factors and other related risks such as mental health and social factors. Some of these risks are modifiable and some are not. These risk factors have been collated and evidenced using mortality data and have previously been applied to a secondary care population. However, they have never been applied to a Primary care population within an individual GP practice.
Using EMIS Web (patient management system) a patient search was created to identify anyone with epilepsy, epileptiform conditions or seizures.
Each risk factor was then identified and the correlating codes were searched for automatically on the database. This was done for each individual allowing individual risk score analysis as well as analysis of the population.
107 patients with epilepsy or seizures were identified. Out of these the mean risk score was 4.1/20.
The highest individual risk score was 9 risk factors out of 20. (n=2)
In total 5 individuals were identified with a high risk score of 8 or 9.
Interestingly there was no data coded for 4 of the risk factors in any of the patients with epilepsy. These included: Presence of nocturnal seizures, surveillance at night, prone sleeping position and pregnancy data.
Learning Points and outcomes
Undertaking this audit has resulted in each of the patients at our GP practice at risk of SUDEP to have a baseline screen and score of their risk factors. This has led to the identification of several high risk individuals. It has also resulted in identifying common risk factors and modifiable risk factors affecting individuals.
This data was presented to the GP Principals and nurse practitioners at the practice and stimulated interesting discussion and learning around several risk factors that have not necessarily been picked up for certain individuals. One specific example of this was nocturnal seizures, for which no coding data was available, suggesting that this either wasn’t being coded correctly or asked about during reviews. This was an important point as it is one of the modifiable high risk factors and something that may help reduce risk in certain patient groups.
From this audit the annual epilepsy review at our surgery has been modified to incorporate the risk factors from the checklist and this will be used to monitor and affect change to reduce risk as much as able.
Using the checklist has stimulated open discussions with patients and their families about their risk of SUDEP. This has raised awareness of SUDEP in an at risk patient group and given patients and their families some ownership and knowledge around modifiable and non modifiable risk factors. This has allowed individuals and families to be involved in their care and may help lead to a reduction in the burden of SUDEP in the long term.
In the short term this has allowed for positive discussions and learning among the doctors, nurses and patients within the GP practice about SUDEP, the risk factors and has acted as a catalyst to hopefully improve patient care, monitoring and outcomes in the longer term. An example on how to administer is provided (https://www.youtube.com/watch?v=Z9KHQvsapAc). The checklist was developed into the smartphone mobile app EpSMon (https://www.youtube.com/watch?v=e3mECsSVgHI) which moved clinician led risk assessment to PWE to support self-monitoring and is free to download in both IPhone and Android versions across UK. Both the Checklist and EpSMon are part of the UK epilepsy commissioning toolkit (http://www.epilepsytoolkit.org.uk/). Details of evidence and current status of EpSMon are provided here (https://www.sudep.org//epilepsy-self-monitor)