SUDEP Action launches first research based self-monitoring safety app for adults with epilepsy
SUDEP Action has launched the first research based self-monitoring app that brings life saving knowledge to the fingertips of adults with epilepsy.
The Epilepsy Self Monitor (EpSMon) app - a world first - has been developed by a team of partners, including clinicians, patients and health technology information experts, at Plymouth University; Cornwall Partnership NHS Foundation Trust; Royal Cornwall Hospital Trust and SUDEP Action.
EpSMon is a self-monitoring app aimed at people who experience seizures. It allows them to assess their risk every three months and prompts them to see their doctor if their risks increase. EpSMon also suggests simple ways they can lower their risks if it is something they can change.
It does this by asking questions including about their last appointment, their epilepsy, their seizures and their well-being. The app analyses the answers and creates advice ranging from ‘all clear, no further action required ’ to ‘make an appointment with your doctor now.’ The app analysis can be shown to their GP to help them decide the best treatment regime for them going forward. It also helps them facilitate meaningful person centred communication of key risk issues.
In essence whilst a person with hypertension might use a domestic blood pressure device, someone with epilepsy can use EpsMon to check they have a planned review of their epilepsy in the future or go earlier if they are reporting a worsening of risk factors.
Jane South, who has epilepsy commented: “I think EpSMon is a brilliant, friendly and nicely-designed app. It is a positive tool and I feel empowered in the way it encourages me to be active in self-monitoring. It asks direct questions which really help me consider how well I am looking after myself in order to avoid risks of seizures. It reminds you to do a three monthly check-up and to make appointments with your doctor or neurologist when you don't want to face up to how your epilepsy is affecting you.”
There are around 600,000 people with epilepsy in the UK. About 87 people are diagnosed with the condition every day. Epilepsy accounts for 1,200 deaths in the UK every year, at least 600 of these through SUDEP. Research shows that about 42% of these deaths may be preventable through better management of known risk factors.
EpSMon is based on evidence from the SUDEP and Seizure Safety Checklist, a facility that enables clinicians to monitor changes in risk factors in their patients. It was developed by researchers, GPs, people with epilepsy and the Coroner in Cornwall. The study was funded by Kt’s Fund, a charity set up in memory of Katie Hallet, a young nurse who died suddenly aged 20 from epilepsy.
Katie’s mum Liz Hollingdale, who set up Kt’s Fund with her husband Bob Hollingdale said: “The conversation about risk between doctor and patients with epilepsy needs to be accepted as routine just as it is with other chronic conditions. I wish that the new safety app had been available to Katie; this would have allowed Katie to record important information on her mobile which could have been stored and then used to see if there were any triggers leading up to her seizures.”
The Checklist is a tool used in a 10-minute consultation that provides clinicians with the latest evidence on risk factors for premature mortality in epilepsy. The Checklist was used to analyse nine years’ of deaths reported to the Coroner in Cornwall and found that 90% of people had a worsening of risk factors in the three to six months before their deaths, but that few had contact with their medical team.
The Checklist was introduced into routine practice in Cornwall in 2013 and has received positive feedback from 200 people with epilepsy. It is being used in routine clinical practice in epilepsy services in Cornwall including neurology clinics and community based telehealth. EpSMon will provide useful information for GPs which can be used in conjunction with the SUDEP and Seizure Checklist to manage and fine tune care for those with epilepsy.
“Doctors and patients alike have welcomed these communication tools. Clinicians in the South-West found that using the checklist raised discussions from 10% to 80% of all people within epilepsy services over 2 years. This compares with a recent audit from a Scottish epilepsy clinic which found that communication about risk increased from 4% to 34%. The App and Checklist are easy to use and although it is early days we are not seeing the numbers of deaths that we would have expected in this local population?.” Dr Rohit Shankar, Consultant in Adult Developmental Neuropsychiatry at Cornwall Partnership NHS Foundation Trust.
Professor Stephen Brown, from SUDEP Action, commented: “Only recently there was media coverage regarding a plea to the Prime Minister from women with epilepsy to address the confusion around the risks to pregnant mothers from an epilepsy drug. The app will ask women of childbearing age if they have had pre-conception counselling and flag up whether they need to see their GP if not. Women need a balanced view of the risks from medications to their unborn child and risks of seizures to them and they need it well in advance of getting pregnant - this is what EpSMon helps women to get.”
The NICE clinical guidelines encourage people with epilepsy to manage their condition through information and discussion. There is a call for patients to be full partners in their care including advice on SUDEP, the importance of seizure control and being aware of the dangers of night time seizures, EpSMon will help to achieve this. The data collected through the use of EpSMon will be used for future research to achieve a better understanding of epilepsy and to fine tune care available.
EpSMon is now available from iTunes in the UK at www.epsmon.com