Talking to patients about the realities of SUDEP and providing them with online resources can help.
SUDEP (sudden unexpected death in epilepsy) is the most common disease-related cause of death in people with epilepsy.1 Among neurologic disorders in the United States, SUDEP is the leading cause of lost years of life after stroke.2 Yet, for many people with epilepsy and their loved ones, the impact of SUDEP remains a mystery due to the fact that some health care practitioners are hesitant to discuss SUDEP.1,3 In fact, it’s not uncommon for families to learn what SUDEP is only after a loved one has died from it.4,6,7 Although there is no definitive way to prevent SUDEP, there are steps patients and caregivers can take to mitigate the risk1,8 – which is why talking about SUDEP and its connection to medication adherence (taking medication regularly at the correct dose) is so important.
Medication adherence is a crucial part of effective seizure control and the journey toward seizure freedom.5 Studies have found that medication adherence and improving seizure control are also key to lowering SUDEP risk.1,8 That’s because every convulsive seizure increases the likelihood of SUDEP9 – more than three convulsive seizures in one-year increases risk of SUDEP by a factor of 15.8 And according to a survey, missed medication doses are the number one cause of uncontrolled seizures.10,12,17
All of this begs the question: could educating patients about SUDEP help lower the risk by increasing medication adherence and lowering the chance of experiencing uncontrolled seizures? To take it a step further, does merely knowing about SUDEP motivate patients to follow their treatment regimen as prescribed? Research shows there is a link.
One recent study suggests that providing information on SUDEP to patients and their caregivers may increase drug adherence without adverse effects on their quality of life or mood.11 Another study found that for patients with a high risk of SUDEP who have modifiable risk factors, repeat discussion of SUDEP during physician visits may encourage patients to make changes to the way they manage their disease.6 In a 2018 survey of adult patients with epilepsy and their caregivers, 89% said SUDEP awareness motivated them to improve medication adherence.14
“Ideally, seizure control means seizure freedom, and while we cannot always predict when there will be another spell, we need to encourage patients and families to avoid preventable causes like missed doses which can lead to SUDEP,” says Lawrence W. Brown, MD, Associate Professor of Neurology and Pediatrics at the Children’s Hospital of Philadelphia. “When we talk about pediatric epilepsy, SUDEP is a rare but definite possibility, and it needs to be a routine part of a broader conversation around seizure control and lifestyle factors that could affect medication adherence.”
Communicating about SUDEP
According to guidelines from the American Academy of Neurology (AAN) and the American Epilepsy Society, epilepsy patients should be told about their SUDEP risk. The guidelines go on to say clinicians should also inform epilepsy patients that seizure control, particularly with respect to tonic-clonic seizures, is “strongly associated with decreased SUDEP risk.”9
According to the research, people want to learn more about SUDEP. One survey of parents who lost a child to SUDEP showed that they support having the SUDEP conversation with their health providers immediately upon diagnosis.15 Even patients and families who report fear from SUDEP nonetheless say they want to be informed.14
Despite this, the largest audit of neurologists to date (1,200 in the US and Canada) found that just 6.8% say they’ve discussed SUDEP with patients at least 90% of the time and 11.6% say they’ve never discussed it.3 For some providers, it is a matter of not wanting to worry or stress their patients.4 Yet, according to Dr. Lawrence W. Brown, talking to patients about SUDEP can have the opposite effect.
“Research tells us that being open about SUDEP can empower patients and families to make better decisions about the management of their medical condition,”6 says Dr. Brown. “As clinicians, we need to work with our patients to create a more open dialog, which could improve treatment adherence and potentially help save more lives.”
Talking about SUDEP can also open the door to a wider discussion about strategies to help prevent SUDEP, in addition to taking medication as prescribed.
“We know most cases of SUDEP happen during sleep and are unwitnessed,16 so, for example, we might recommend monitoring devices or a seizure alert dog to call attention to the presence of a seizure. For the college student with epilepsy, we might recommend a roommate trained to provide basic aid during a seizure,” says Dr. Brown.
For truly patient-centered care, Dr. Brown says it is essential that patients receive accurate information about all the risks and realities associated with epilepsy and uncontrolled seizures, including their individual risk of SUDEP, as a part of an overall care plan.
“Epilepsy management is like putting together a puzzle – all of these ‘pieces’ – from treatment adherence to promotion of self-management skills, avoidance of preventable risk factors that reduce the risk of seizures and SUDEP – are linked,” says Dr. Brown. “Eliminating one topic from the conversation can throw everything else out of balance. Without all of the puzzle pieces, the picture for the patient is not complete.”
For more information about epilepsy, SUDEP and epilepsy treatment options, visit EPILAPSEY.com.
- Miller RW, et al. Discussing Sudden Unexpected Death in Epilepsy (SUDEP) with Patients: Practices of Health-Care Providers. Epilepsy Behav. 2014;32:38-41.
- Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: Assessing the public health burden. Epilepsia. 2014;55(10):1479–1485.
- Friedman FD, et al. Sudden unexpected death in epilepsy: Knowledge and experience among U.S. and Canadian neurologists. Epilepsy Behav. 2014;35:13-18.
- Stevenson MJ, Stanton TF. Knowing the risk of SUDEP: Two family’s perspectives and The Danny Did Foundation. Epilepsia. 2014;55(10):1495-1500.
- Eatok J, Baker G. Managing patient adherence and quality of life in epilepsy. Neuropsych Dis and Treat. 2007;3(1):117-131.
- Donner EJ, et al. After sudden unexpected death in epilepsy: Lessons learned and the road forward. Epilepsia. 2016;57(S1):46-53.
- Austin JK, et al. Testimonies submitted for the Institute of Medicine report Epilepsy across the spectrum: Promoting Health and Understanding. Epilepsy Behav. 2012;25(4):634-661.
- Hesdorffer DC, Tomson T, Benn E, et al. Do antiepileptic drugs or generalized tonic-clonic seizure frequency increase SUDEP risk? A combined analysis. Epilepsia. 2012;53(2):249-252.
- Harden C, et al. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors. Neurol. 2017;88(17):1674-1680.
- Hovinga CA, et al. Association of non-adherence to antiepileptic drugs and seizures, quality of life, and productivity: survey of patients with epilepsy and physicians. Epilepsy Behav. 2008;13:316–322.
- Radhakrishnan DM, et al. Effect of providing sudden unexpected death in epilepsy (SUDEP) information to persons with epilepsy (PWE) and their caregivers—Experience from a tertiary care hospital. Neurolog. 2018;138(5):417-424.
- Cramer JA, Glassman M, Rienzi V. The relationship between poor medication compliance and seizures. Epilepsy Behav. 2002;3(4):338-342.
- Donner EJ, Buchalter J. Commentary: It’s time to talk about SUDEP. Epilepsia. 2014;55(10):1501-1503.
- Long L., Cotterman-Hart S, Shelby J. To reveal or conceal? Adult patient perspectives on SUDEP disclosure. Epilepsy Behav. 2018;86:79-84.
- American Epilepsy Society. Partners against mortality in epilepsy conference summary. Epilepsy Currents. 2013;13(2):5-21.
- Devinsky O, Hesdorffer DC, Thurman DJ, Lhatoo S, Richerson G. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. Lancet Neurol. 2016; 15:1075–1088.
- Epilepsy Foundation. Missed Medicines. Available Online. Accessed Sep. 18, 2019.