For physicians who treat epilepsy, keeping patients focused on the positive—the promise of a normal, healthy life if seizures are controlled—may mean that difficult but important conversations about the implications of uncontrolled seizures are not happening. Specifically, research suggests that too few patients are being told about sudden unexpected death in epilepsy (SUDEP), the direst outcome of uncontrolled seizures. In a new Epilepsy Foundation survey of more than 1,000 epilepsy patients and caregivers, only 18% of patients and 27% of caregivers reported that they’ve had a discussion about SUDEP with a healthcare provider.
For the approximate 3 million Americans with epilepsy, SUDEP is not uncommon. In fact, studies indicate that SUDEP is the leading epilepsy-related cause of death. An estimated one in 1,000 adults in the United States with epilepsy dies from SUDEP each year, and the risk increases to one in 150 among those with uncontrolled tonic-clonic (grand mal) seizures.
Considering this strong causal link between uncontrolled seizures and SUDEP, it’s critical that physicians convey to their patients the urgency of achieving seizure control and provide strategies to help. This starts with, but is not limited to, adherence to anti-epilepsy treatment regimens. These tragic but preventable deaths will continue as long as physicians and patients are not having conversations about how even a single seizure can put patients at risk for SUDEP.
To help drive discussions about SUDEP, the Epilepsy Foundation’s SUDEP Institute recently issued a special expert consensus report called #AimForZero: Striving Toward a Future Free from Sudden Unexpected Death in Epilepsy. The report is the centerpiece of a multi-channel campaign to motivate people with epilepsy to strive for their best possible seizure control to reduce their risk of SUDEP. The initiative also encourages patients to speak with their healthcare team about SUDEP and to use the dedicated #AimForZero hashtag to drive discussions about SUDEP.
The #AimForZero campaign urges people with epilepsy to adopt four key self-management actions to help avoid SUDEP:
- Take epilepsy medication as prescribed
- Get enough sleep
- Limit alcohol
- Strive to stop seizures.
Taking epilepsy medications as prescribed is critical because these medicines are only effective when taken regularly. Getting enough sleep helps patients avoid sleep deprivation, which can trigger seizures. Limiting alcohol consumption is important because patients with epilepsy are at a higher risk of seizures after drinking these beverages. Striving to stop seizures is critical because it can motivate patients and their caregivers to take the extra steps that are needed and talk to their healthcare providers about their risk of continued seizures and SUDEP.
These actions are consistent with strategies to achieve seizure control, and support the notion of true seizure control being considered as having no seizures at all. Frequently, those living with treatable epilepsy and their healthcare teams mistakenly believe that seizures are controlled if the person has them infrequently or in a predictable manner. However, they are still at risk for SUDEP.
Learning self-management strategies to manage epilepsy is crucial to helping reduce the risk of seizures. Proper self-management is achieved through a dedicated partnership between epilepsy patients, their caregivers, and their healthcare team. Managing seizures involves many step, including preventing triggers or situations that are easily modifiable. The four action steps endorsed in the #AimForZero campaign further stresses other strategies to enhance self-care to avoid SUDEP.
The Epilepsy Foundation SUDEP Institute and the leading epileptologists who co-authored the special report are urging patients with epilepsy and their caregivers to aim for a life with zero seizures. Healthcare professionals should also be part of the effort to raise awareness about SUDEP risks to improve patient outcomes. For more information on the campaign, go to www.epilepsy.com/aimforzero.
Orrin Devinsky, MD, has indicated to Physician’s Weekly that he is a shareholder of Amicos and has received grants/research aid from Novartis and GW Pharma
Readings & Resources (click to view)
Epilepsy Statistics. Epilepsy Foundation. http://www.epilepsy.com/learn/epilepsy-statistics.
#AimforZero. Epilepsy Foundation. http://www.epilepsy.com/aimforzero
Devinsky O, Hesdorffer DC, Thurman DJ, et al. Sudden unexpected death in epilepsy: epidemiology, mechanisms, and prevention. Lancet Neurol. 2016;15:1075-1088.
Maguire MJ, Jackson CF, Marson AG, Nolan SJ. Treatments for the prevention of sudden unexpected death in epilepsy (SUDEP). Cochrane Database Syst Rev. 2016;7:CD011792.
Marin Collazo IV, Tatum WO. Sudden unexpected death in epilepsy (SUDEP): are all your patients informed? Neurologist. 2016;21:66-71.
Ramachandran Nair R, Jack SM, Strohm S. SUDEP: to discuss or not? Recommendations from bereaved relatives. Epilepsy Behav. 2016;56:20-25.