SUDEP Awareness and Medication Adherence – Is There a Connection?

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.

References

  1. Miller RW, et al. Discussing Sudden Unexpected Death in Epilepsy (SUDEP) with Patients: Practices of Health-Care Providers. Epilepsy Behav. 2014;32:38-41.
  2. Thurman DJ, Hesdorffer DC, French JA. Sudden unexpected death in epilepsy: Assessing the public health burden. Epilepsia. 2014;55(10):1479–1485.
  3. Friedman FD, et al. Sudden unexpected death in epilepsy: Knowledge and experience among U.S. and Canadian neurologists. Epilepsy Behav. 2014;35:13-18.
  4. Stevenson MJ, Stanton TF. Knowing the risk of SUDEP: Two family’s perspectives and The Danny Did Foundation. Epilepsia. 2014;55(10):1495-1500.
  5. Eatok J, Baker G. Managing patient adherence and quality of life in epilepsy. Neuropsych Dis and Treat.   2007;3(1):117-131.
  6. Donner EJ, et al. After sudden unexpected death in epilepsy: Lessons learned and the road forward. Epilepsia. 2016;57(S1):46-53.
  7. 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.
  8. 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.
  9. Harden C, et al. Practice guideline summary: Sudden unexpected death in epilepsy incidence rates and risk factors. Neurol. 2017;88(17):1674-1680.
  10. 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.
  11. 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.
  12. Cramer JA, Glassman M, Rienzi V. The relationship between poor medication compliance and seizures. Epilepsy Behav. 2002;3(4):338-342.
  13. Donner EJ, Buchalter J. Commentary: It’s time to talk about SUDEP. Epilepsia. 2014;55(10):1501-1503.
  14. Long L., Cotterman-Hart S, Shelby J. To reveal or conceal? Adult patient perspectives on SUDEP disclosure. Epilepsy Behav. 2018;86:79-84.
  15. American Epilepsy Society. Partners against mortality in epilepsy conference summary. Epilepsy Currents. 2013;13(2):5-21.
  16. 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.
  17. Epilepsy Foundation. Missed Medicines. Available Online. Accessed Sep. 18, 2019.

Epilepsy Blog Relay: My Epilepsy Hero

This post is part of the Epilepsy Blog Relay™.

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog Relay.

In November 2016, Sunovion and the Epilepsy Foundation came together to create #MyEpilepsyHero with the goal of helping to change misconceptions about epilepsy and give the community a place to celebrate their successes and recognize those who make a positive difference in the lives of people living with epilepsy—their Epilepsy Heroes. Since the launch, the #MyEpilepsyHero Facebook page has recognized over 5,000 heroes, reached more than 12 million people, and has been recognized with 12 awards as a leading-edge social media campaign. None of this would be possible without people like you who are making a difference by providing support and encouragement to your friends and families living with epilepsy.

 

Today, we’d like to recognize 5 heroes who continue to overcome barriers in their attempts to drive epilepsy awareness and understanding.

 

Stacey Chillemi

As someone who has lived with epilepsy her whole life, Stacey is dedicated to spreading awareness of epilepsy and helpful advice on managing it. An author of multiple books, she has been featured in national newspapers and on television. Because of her devotion to helping others living with epilepsy and her drive to spread positive information in the community, we’re proud to call Stacey one of our Epilepsy Heroes.

 

Whitney Petit

Advocating for the importance of self-care, Whitney has been a champion of raising epilepsy awareness. Whitney uses her blog, Changing Focus: Epilepsy Edition, to share self-care techniques and other life-improving innovations with the epilepsy community. Whitney makes her community better through her many acts of service, and that’s why she is an Epilepsy Hero.

 

 

Natalie Beavers

Natalie has earned her place as an Epilepsy Hero by founding Angels of Epilepsy. Through Angels of Epilepsy, Natalie is dedicated to providing meals, care packages, health and lifestyle workshops, and transportation for others living with epilepsy. As an advocate in the Atlanta community, she speaks at and hosts many epilepsy awareness events.

 

Ginny Emerson

Next, we’d like to recognize Ginny, who created the non-profit Preventing Teen Tragedy in 2011 to provide resources to families affected by epilepsy and mental illness. She also founded Seize the Facts, a community program aimed at sharing helpful information for those living with epilepsy. Ginny provides hope to those who need it most, which is why she is one of our Epilepsy Heroes.

 

 

Allison Scheinman

Allison is a caregiver to her daughter Livy, who is living with epilepsy. In 2011, Allison and Livy’s twin sister, Hailey, started Lemonade for Livy to raise epilepsy awareness and support the Epilepsy Foundation’s work to stop seizures. Allison is also the co-founder of Livy’s Hope, a website and blog that chronicles their journey. 100% of the proceeds of the site go to families in need. We believe every mom is a superhero, but Allison’s contributions to the epilepsy community make her one of our Epilepsy Heroes.

 

We’re proud of and thankful for all the work these Epilepsy Heroes do to make a difference in the lives of those living with epilepsy, along with all the #MyEpilepsyHeroes, to support the epilepsy community.

 

SUNOVION and  are registered trademarks of Sumitomo Dainippon Pharma Co., Ltd.

Sunovion Pharmaceuticals Inc. is a U.S. subsidiary of Sumitomo Dainippon Pharma Co., Ltd.

© 2019 Sunovion Pharmaceuticals Inc. All rights reserved. APT-US-00130-19

 

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog Relay.

 


NEXT UP: Be sure to check out the next post at https://livingwellwithepilepsy.com. For the full schedule on bloggers and more on epilepsy awareness, visit https://livingwellwithepilepsy.com.

Epilepsy Blog Relay: Phil Gattone and Neurish want to help people with epilepsy connect

This post is part of the Epilepsy Blog Relay. This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog Relay.

Phil Gattone’s Neurish

Growing up with epilepsy, I was able to meet a lot of other people who were having seizures and who had epilepsy. A lot of them weren’t nearly as lucky as I was; they didn’t have a support system. I knew I wanted to provide a way for those people to build their own support system, so for the past several years, I’ve been working on an app called Neurish—a play on “neurology” and “nourishment.” It’s a way for people with epilepsy to connect with others and with resources to find the support they need to nourish their own goals and accomplishments.

I think having met people with epilepsy who didn’t have the kind of support system I had was one of the things that really inspired me to make this online community. You see all these different apps out there to connect people, but nothing that really bridged the gap between technology and the epilepsy community. And as I grew up and met more people with epilepsy, I found confirmation that something like this app needed to happen. I already had a passion for computer engineering, so I went to college for that, and once I graduated, I used those skills to start the website, Neurish.me.

Neurish.me took about two years to create, and, although it’s still in beta mode and hasn’t officially launched, you can still access the site. Once you land on the Neurish.me home page, you can click “request access,” then I’ll get an email and send the registration link. Right now, the app is mainly on the web, but it’s mobile responsive, so you can view it on your phone
without issues. We use the GPS function to link you with other people, so no matter where you are, when you load the app on your phone, we connect you with people in your area. Right now, we have almost 100 users. The feedback so far has been fantastic, and we’re using that feedback to continue making adjustments. Some users have said that they’d never met anyone with epilepsy until the site, so they really like how they can connect with other people and not feel alone. I’ve even met a few of the app users in my area.

Ultimately, the goal with Neurish is to connect patients, caregivers, and mentors who have had similar experiences with epilepsy. You can join and create a user profile that includes medical info and personal interests. Once you create a profile, you can look at other profiles for similarities. No matter what kind of seizures you experience, you can find others who are in similar situations. If your daughter has epilepsy, you can find others who have daughters with epilepsy. You can connect, message, add them to your circle, and create a community.

It’s something I’m really proud of, and I hope it can be a resource for you in expanding your own epilepsy community and support network.

SUNOVION is a registered trademark of Sumitomo Dainippon Pharma Co., Ltd.
Sunovion Pharmaceuticals Inc. is a U.S. subsidiary of Sumitomo Dainippon Pharma Co., Ltd.
© 2019 Sunovion Pharmaceuticals Inc. All rights reserved. NPC-APT-US-00004-19

This blog post was submitted by Sunovion Pharmaceuticals Inc., the Founding Sponsor of the June 2019 Epilepsy Blog
Relay.

 

Brain Tumor and Epilepsy: Life after surgery on a benign brain tumor

Lisa’s Story

It was December 2007 and I had been suffering with awful, constant headaches for the past 2 years and had been going back and forth to the doctors who unfortunately just gave me migraine tablets. I thought maybe I needed an eye test so as a last hope I booked in at the opticians.

When the optician looked into the back of my eye he froze for a second then said ‘I’m going to have to refer you to the hospital immediately’. A bit shocked by his reaction I said “ok;” called my partner, Simon, to accompany me and off we set to the hospital.

On arrival the consultants looked in my eyes, then sent me off for a CT Scan and then for an MRI scan. During this time I was given a hospital bed. All a very quick, scary process. Then, a couple of hours later, whilst waiting on my hospital bed a consultant came over and drew the curtains around us, knelt down and held my hand and said ‘I’m sorry Lisa, we have found a benign brain tumor‘. Sounds strange but even though they had found something so harsh I was just so relieved they had finally found something and I was hopefully going to be cured from my constant headaches.


Related: Epilepsy Blog Relay: Brain Tumor Survivor writes her first book


Preparing for Brain Surgery

The following weeks I was referred to Frenchay Hospital in Bristol where a consultant was to operate to remove the brain tumor. He advised all the risks of the operation – death, paralysed down one side, deafness, blindness, the list was endless. It was so scary but so surreal at the same time. My operation was booked for a couple of weeks later. Christmas was in between so I tried to enjoy the festivities with my family without thinking of the operation too much. On the day of the operation I was supposed to go to theatre early but an emergency came in so it put my operation back. I finally went down around midday. It took a total of 13 hours to remove my tumor, taking it into the early hours of the morning. My parents and Simon were called to come down to the High Dependency ward where I was recovering. I’m thankful to say the operation was successful.

A Year Later

It was just over a year later when I began to have slight seizures. At the time not really knowing what they were I carried on with my day-to-day life. Unfortunately one day driving to work I had a major car accident and rolled my car due to having a seizure at the wheel. I was referred to a specialist and was diagnosed with left frontal lobe Complex Partial Seizures. I’ve had these for about 9 years now and have tried various medications to reduce or try and stop the seizures. I’ve tried Lamotrogine, Keppra, Clobazam, Tegretol and Zonegran. Unfortunately none have stopped the seizures. I do get very frustrated and think why won’t these seizures just stop! I feel part of my independence has gone since having to give up my driving license and having to take public transport everywhere. It’s usually tiredness and stress that bring on my seizures so I do try and control these best I can.


Related: Emily’s Perspective: Newly diagnosed with epilepsy or epileptic seizures?


Staying positive

I love yoga which helps calm me and when I have felt I’ve needed a bit more professional help I have seen a CBT Therapist which has helped me understand my feelings flying round in my head. Most importantly my partner Simon is my rock. Supporting me through all of this, aiming to keep me positive. My mum is also always there to keep me going if I need a pick me up too. Family and friends support is so important.

Never stop fighting.

 

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