EpSMon is a mobile app for people with epilepsy to help them self-monitor their health risks in between visits to their doctors. EpSMon shows the user which health risks are getting better, which have worsened and which have stayed the same to encourage a discussion about these risks with their GP or epilepsy specialist. It can also help then decide whether to seek help earlier than their next planned appointment.
EpSMon is designed to help people with epilepsy be aware of why and when a medical review of their epilepsy is important. After the initial assessment of risk, it reminds them every three months to reassess. EpsMon is available now as an iOS App, but will be available in the Autumn on android. It can be downloaded on the App Store.
EpSMon is underpinned by a comprehensive review of research based on adults with epilepsy, which is updated annually by a UK-wide development group of experts, GPs and people with epilepsy. EpsMon is appropriate for use in adults over 18. We are in the process of developing a Check List for children, but the first priority of the EpsMon project is the over 18’s because young adults are most at risk. Children that are transitioning to adult services or leaving home for university might value information on EpsMon as well as our leaflets for young people.
Fatalities including Sudden Unexpected Death in Epilepsy (SUDEP) do happen in some people with epilepsy. The best protection is being aware of these risks and putting steps in place to improve known risk factors.
An estimated 1.16 per 1000 people with epilepsy die suddenly each year with approximately half of these from SUDEP. In 2013 there were 680 deaths from epilepsy among people aged under 75 (973 deaths at all ages) in England and Wales. Comparing years of potential life lost from neurological disease, epilepsy is second only to stroke.
Sudden death in epilepsy is considered the most common cause of epilepsy-related death. SUDEP peaks in young adults, particularly men, for example 20 year old with epilepsy has a greater than 1% risk of dying before he reaches 30, before adding other known risks for sudden death.
Other causes are prolonged seizure(s) known as status epilepticus, accidents and suicide. The cause(s) of SUDEP like SIDS remain under investigation but there is a good and growing body of evidence on risk factors that can be used to support people to take simple actions to reduce risk.
The research on risk factors includes seizures in particular generalised tonic-clonic, nocturnal and status epilepticus seizures, and life-style and well-being risk factors such as not taking medications or picking up prescriptions; alcohol and substance abuse and depression. Pregnancy is also associated with higher risk for mother and unborn child.
Evidence has shown that many people who died from epilepsy, especially those of a younger age were not appropriately accessing health services prior to their death. In Cornwall research showed that people who have died are known to have had a worsening of risk factors in the 3 months before their death but only 20% were in contact with their specialist in the year prior they died. National reports and judicial inquiries going back to 2002 have established many thousands of deaths might be avoided through improved awareness of risk and simple measures such as a care plan which step-up care when this is needed.
If your patient has told you they are using this app that is great as it means they want to discuss their risk levels openly with you. The best way to help them going forward is to discuss the results with them and help them put positive steps in place to reduce any risks that have been raised. Encouraging regular medical reviews will help reinforce this positive habit.
If they haven’t heard about EpsMon, at their next appointment you may wish to give them the option of learning about the App. You can get leaflets, cards and posters from us that can be given to patients or can be displayed in your practice from firstname.lastname@example.org
Also available is a clinical tool, the SUDEP and Seizure Safety Check List, available since May 2015. This evidence based tool is designed to support risk communication as part of any review of an epilepsy care plan or consultation (if clinically appropriate). The SUDEP and Seizure Safety Check List has been used in routine practice and welcomed by patients and clinicians in Cornwall. The Check List includes 19 factors and 41 key scientific references. Factors for sudden death include generalised tonic-clonic seizures and nocturnal seizures, non-adherence and absence of supervision. The development group includes UK-wide experts and GPs as well as people with epilepsy.
You can find out more information and register for this tool at www.sudep.org/checklist.
EpsMon 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. The content of the App will be updated once a year by the UK-wide SUDEP and Seizure Safety checklist development group listed below:
Dr Rohit Shankar, Consultant in Adult Developmental Neuropsychiatry, Cornwall Partnership NHS Foundation Trust
Dr Craig Newman, mHealth Innovations Lead & Senior Research Fellow, Plymouth University
Jane Hanna OBE, Chief Executive SUDEP Action, SUDEP Action Lead
Dr Rosey Panelli, International Research Officer, SUDEP Action
Alex Osland, SUDEP Action
Specialist medical advisors
Dr Brendan McLean, Consultant Neurologist, The Royal Cornwall Hospitals NHS Trust
Professor Mathew Walker, Professor of Neurology and Clinical Epilepsy, UCL Institute of Neurology
Professor Josemir W Sander, Professor of Neurology and Clinical Epilepsy, UCL Institute of Neurology
Professor Phil Smith, President Elect of the Association of British Neurologists, University Hospital of Wales
Dr John Craig, Consultant Neurologist, Belfast Health and Social Care Trust
Dr David Cox, Consultant Neuropsychiatrist Cornwall Partnership NHS Foundation Trust
Dr John-Paul Leach, Consultant Neurologist, Southern General Hospital, Glasgow GP medical advisors Professor Henry Smithson, Professor of General Practice, University College Cork & University of Sheffield (Hon)
Dr Tamsyn Anderson, GP Partner and board member of NHS Kernow, NHS Kernow CCG
Professor Leone Ridsdale, Professor of Neurology & General Practice, Kings College London Specialist epilepsy nurse advisors
Caryn Jory, Epilepsy Specialist Nurse, Cornwall Partnership NHS Foundation Trust
Mary Parratt, Epilepsy Specialist Nurse, The Royal Cornwall Hospitals NHS Trust
Juliet Ashton, Epilepsy Specialist Nurse, Epilepsy Society
Dr Emma Carlyon, HM Coroner, Cornwall
Simon Lees, Person with Epilepsy, Advisor with lived experience
Nathan Trevena, Person with Epilepsy, Advisor with lived experience
Brown S, Shankar R, Cox D, McLean B, Jory C. Clinical governance: risk assessment in SUDEP. Clin Govern Int J 2013;18(4):325-31.
Hanna J & Wannamaker BB. Judicial reports on avoidable deaths. In: Hanna J, Panelli R, Jeffs T, Chapman D, editors. Continuing the global conversation. SUDEP Action, SUDEP Aware & Epilepsy Australia; 2014. Available from: www.sudepglobalconversation.com.
Hanna NJ, Black M, Sander JWS, Smithson WH, Appleton R, Brown S, et al. The national sentinel clinical audit of epilepsy related death: epilepsy - death in the shadows: The Stationary Office; 2002. https://www.sudep.org/national-audit-epilepsy-deaths-0
Office for National Statistics. Death registrations summary tables, England and Wales, 2013. 2014. www.ons.gov.uk/ons/rel/vsob1/death-reg-sum-tables/2013/index.html
Shankar R, Jalihal V, Walker M, Laugharne R, McLean B, Carlyon E, et al. A community study in Cornwall UK of sudden unexpected death in epilepsy (SUDEP) in a 9-year population sample. Seizure 2014;23(5):382-5. http://www.ncbi.nlm.nih.gov/pubmed/24630808
Shankar R, Newman C, Hanna J, Ashton J, Caryn J, McLean B et al. Keeping patients with epilepsy safe: a surmountable challenge? 2015;4: doi:10.1136/bmjquality.u208167.w3252. http://qir.bmj.com/content/4/1/u208167.w3252.full
Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: assessing the public health burden. Epilepsia 2014;55:1479-85
EpSMon has been provided mostly out of shared interest and passion to empower and better the lives of people with Epilepsy.
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