COMMENTARY: IT’S TIME TO TALK ABOUT SUDEP
SUMMARY
Elizabeth Donner is Director of the SickKids Comprehensive Epilepsy Program and Associate Professor of Paediatrics at the University of Toronto.
Jeffrey Bucchalter is Director of the Children’s Comprehensive Epilepsy Centre and Professor Paediatrics and Clinical Neurosciences at Alberta Children’s Hospital.
Sudden unexpected death in epilepsy (SUDEP) is the most tragic potential outcome of epilepsy. Despite recommendations from epilepsy organizations in the United Kingdom and the United States, many neurologists choose not to discuss the risk of SUDEP with their patients with epilepsy. Yet, the literature clearly demonstrates that people with epilepsy and their caregivers want to know more about SUDEP. When health care providers do not provide information, people with epilepsy turn to other sources, risking misinformation and potentially increasing anxiety and distress. Sharing accurate information about SUDEP can optimize epilepsy selfmanagement and engage the person with epilepsy as a partner in their own care. Information about SUDEP must be part of the comprehensive education given to all people with epilepsy.
Sudden unexpected death is the most distressing potential outcome of epilepsy. For decades, sudden unexpected death in epilepsy (SUDEP) was underrecognized and rarely discussed among health care providers, people with epilepsy, and the broader epilepsy community. More recently, SUDEP is increasingly addressed in the medical literature. In the United Kingdom (UK), both the National Institute for Clinical Excellence and the Scottish Intercollegiate Guidelines Network have asserted that SUDEP should be disclosed to people with epilepsy.1,2 In the United States, a joint Task Force of the American Epilepsy Society and the Epilepsy Foundation recommended that the potentially increased risk of death associated with epilepsy be disclosed as part of the comprehensive epilepsy education provided to people with epilepsy, and most recently the Institute of Medicine report, Epilepsy across the Spectrum, affirmed this recommendation.3,4 Yet studies of neurologists’ practices demonstrate that the majority rarely or never discuss SUDEP with their patients with epilepsy.5–8 It is time for epilepsy health care providers to recognize that people with epilepsy deserve to know the risks of their disorder. It is time to start talking about SUDEP.
People with Epilepsy Want to Be Informed about SUDEP
Wiley Periodicals, Inc. © 2014 International League Against Epilepsy doi: 10.1111/epi.12794
The years of paternalistic health care should be behind us. Patients and their families have a say in how their health care is delivered, and as health care providers we have an obligation to meet their needs for information and support. A growing body of literature demonstrates that 1501
1502 Commentary people with epilepsy want to know more about SUDEP. A survey of 67 parents of children with epilepsy revealed that 91% of parents wanted to know about SUDEP, while only 3% did not want to know more.9 The majority, 67%, wanted to be informed of SUDEP at the time of their child’s diagnosis. This study was conducted in a community-based clinic; the sample was not confined to parents of children with severe or drug-resistant epilepsy, rather it included families of children who were newly presenting with epilepsy and with chronic epilepsy, strongly indicating that the desire for SUDEP information is present across a broad spectrum of caregivers. These data are supported by a qualitative study of parents of children with epilepsy.10 In this cohort, all parents reported that they wanted to know about SUDEP. As in the previous study, they wanted the information soon after diagnosis and felt it should be delivered, face-to-face, by the pediatric neurologist. Recently, a UK-based study reported on the effect of SUDEP disclosure on young adults.11 Although these people with epilepsy endorsed anxiety provoked by the SUDEP discussion, it was not long-lasting in most. There is no evidence from studies of patients and families to support withholding information about SUDEP from people with epilepsy. To the contrary, people with epilepsy want to know more about SUDEP.
Knowledge Is Power—Informed Patients Make Informed Decisions Our greatest weapon in the fight against SUDEP is patient education. Education is widely recognized as the most significant contributor to epilepsy self-management, noted to improve self-confidence and reduce the burden of stigma, enabling people with epilepsy to make informed decisions about their health.12 Epilepsy self-management encompasses the skills a person with epilepsy uses to optimize their treatment adherence, control seizures and their consequences, and manage the effects of epilepsy on daily life. People with epilepsy with proactive self-management profiles demonstrate higher quality of life than those with reactive profiles.13 Furthermore, effective self-management benefits not just the person with epilepsy, but also the health care provider, as the patient becomes a more ready partner in his or her care. The most well-established risk factor for SUDEP is frequent generalized tonic–clonic seizures. Treatment adherence has also been identified as a risk factor and is an obvious contributor to seizure reduction. As demonstrated by the epilepsy self-management literature, when people with epilepsy and their caregivers are knowledgeable about epilepsy, its risks, and how to reduce those risks, they are better poised to make proactive decisions about their care. For example, people with epilepsy may be frightened by the prospects of surgery for epilepsy; however, when they are Epilepsia, 55(10):1501–1503, 2014 doi: 10.1111/epi.12794
well informed about the risks of continuing seizures on not only their quality of life, but also their mortality risk, they can put their fear of surgery in perspective. When people with epilepsy are informed about the risks of their disorder, they are best positioned to make responsible and informed decisions about their care.
Information about SUDEP Is Only a Mouse Click Away In these times, with information only a mouse click away, patients have ready access to information about health and disease. If health care providers do not provide information, patients and their caregivers seek it out. A survey of men with epilepsy found that after the general practitioner and neurologist, the Internet was their third choice for accessing information about their epilepsy.14 In a survey-based study of people living with epilepsy, 77% of those recruited from an epilepsy listserve and 54% of those recruited from epilepsy clinics used the Internet to guide self-management of their epilepsy.15 A recent report indicated that the number of searches on epilepsy and seizurerelated terms was almost as great as those on fainting and syncope-related terms (5.8 million and 6 million, respectively) despite the many times greater incidence of syncope than seizures, demonstrating the strong drive to seek information about seizures online.16 Another study found that 63% of families of children with epilepsy accessed Internet sites that had not been recommended by their health care provider, and these users rated those sites as highly reliable, despite evidence to the contrary.17 A study of the Google search engine found that from 2004 to 2013 there were >3 million searches for “seizure” and almost 21,000 for “SUDEP.” A 5,000% increase was noted from 2004 to 2013 for the search term “epilepsy SUDEP.”18 However, the Internet may not be the best place for people with epilepsy and their caregivers to access information, particularly about sensitive issues such as SUDEP. Information presented on Websites may not be written at an appropriate level. Assessment of two popular U.S.-based epilepsy consumer Websites in 2007 and 2009 determined that
SUMMARY
Elizabeth Donner is Director of the SickKids Comprehensive Epilepsy Program and Associate Professor of Paediatrics at the University of Toronto.
Jeffrey Bucchalter is Director of the Children’s Comprehensive Epilepsy Centre and Professor Paediatrics and Clinical Neurosciences at Alberta Children’s Hospital.
Sudden unexpected death in epilepsy (SUDEP) is the most tragic potential outcome of epilepsy. Despite recommendations from epilepsy organizations in the United Kingdom and the United States, many neurologists choose not to discuss the risk of SUDEP with their patients with epilepsy. Yet, the literature clearly demonstrates that people with epilepsy and their caregivers want to know more about SUDEP. When health care providers do not provide information, people with epilepsy turn to other sources, risking misinformation and potentially increasing anxiety and distress. Sharing accurate information about SUDEP can optimize epilepsy selfmanagement and engage the person with epilepsy as a partner in their own care. Information about SUDEP must be part of the comprehensive education given to all people with epilepsy.
Sudden unexpected death is the most distressing potential outcome of epilepsy. For decades, sudden unexpected death in epilepsy (SUDEP) was underrecognized and rarely discussed among health care providers, people with epilepsy, and the broader epilepsy community. More recently, SUDEP is increasingly addressed in the medical literature. In the United Kingdom (UK), both the National Institute for Clinical Excellence and the Scottish Intercollegiate Guidelines Network have asserted that SUDEP should be disclosed to people with epilepsy.1,2 In the United States, a joint Task Force of the American Epilepsy Society and the Epilepsy Foundation recommended that the potentially increased risk of death associated with epilepsy be disclosed as part of the comprehensive epilepsy education provided to people with epilepsy, and most recently the Institute of Medicine report, Epilepsy across the Spectrum, affirmed this recommendation.3,4 Yet studies of neurologists’ practices demonstrate that the majority rarely or never discuss SUDEP with their patients with epilepsy.5–8 It is time for epilepsy health care providers to recognize that people with epilepsy deserve to know the risks of their disorder. It is time to start talking about SUDEP.
People with Epilepsy Want to Be Informed about SUDEP
Wiley Periodicals, Inc. © 2014 International League Against Epilepsy doi: 10.1111/epi.12794
The years of paternalistic health care should be behind us. Patients and their families have a say in how their health care is delivered, and as health care providers we have an obligation to meet their needs for information and support. A growing body of literature demonstrates that 1501
1502 Commentary people with epilepsy want to know more about SUDEP. A survey of 67 parents of children with epilepsy revealed that 91% of parents wanted to know about SUDEP, while only 3% did not want to know more.9 The majority, 67%, wanted to be informed of SUDEP at the time of their child’s diagnosis. This study was conducted in a community-based clinic; the sample was not confined to parents of children with severe or drug-resistant epilepsy, rather it included families of children who were newly presenting with epilepsy and with chronic epilepsy, strongly indicating that the desire for SUDEP information is present across a broad spectrum of caregivers. These data are supported by a qualitative study of parents of children with epilepsy.10 In this cohort, all parents reported that they wanted to know about SUDEP. As in the previous study, they wanted the information soon after diagnosis and felt it should be delivered, face-to-face, by the pediatric neurologist. Recently, a UK-based study reported on the effect of SUDEP disclosure on young adults.11 Although these people with epilepsy endorsed anxiety provoked by the SUDEP discussion, it was not long-lasting in most. There is no evidence from studies of patients and families to support withholding information about SUDEP from people with epilepsy. To the contrary, people with epilepsy want to know more about SUDEP.
Knowledge Is Power—Informed Patients Make Informed Decisions Our greatest weapon in the fight against SUDEP is patient education. Education is widely recognized as the most significant contributor to epilepsy self-management, noted to improve self-confidence and reduce the burden of stigma, enabling people with epilepsy to make informed decisions about their health.12 Epilepsy self-management encompasses the skills a person with epilepsy uses to optimize their treatment adherence, control seizures and their consequences, and manage the effects of epilepsy on daily life. People with epilepsy with proactive self-management profiles demonstrate higher quality of life than those with reactive profiles.13 Furthermore, effective self-management benefits not just the person with epilepsy, but also the health care provider, as the patient becomes a more ready partner in his or her care. The most well-established risk factor for SUDEP is frequent generalized tonic–clonic seizures. Treatment adherence has also been identified as a risk factor and is an obvious contributor to seizure reduction. As demonstrated by the epilepsy self-management literature, when people with epilepsy and their caregivers are knowledgeable about epilepsy, its risks, and how to reduce those risks, they are better poised to make proactive decisions about their care. For example, people with epilepsy may be frightened by the prospects of surgery for epilepsy; however, when they are Epilepsia, 55(10):1501–1503, 2014 doi: 10.1111/epi.12794
well informed about the risks of continuing seizures on not only their quality of life, but also their mortality risk, they can put their fear of surgery in perspective. When people with epilepsy are informed about the risks of their disorder, they are best positioned to make responsible and informed decisions about their care.
Information about SUDEP Is Only a Mouse Click Away In these times, with information only a mouse click away, patients have ready access to information about health and disease. If health care providers do not provide information, patients and their caregivers seek it out. A survey of men with epilepsy found that after the general practitioner and neurologist, the Internet was their third choice for accessing information about their epilepsy.14 In a survey-based study of people living with epilepsy, 77% of those recruited from an epilepsy listserve and 54% of those recruited from epilepsy clinics used the Internet to guide self-management of their epilepsy.15 A recent report indicated that the number of searches on epilepsy and seizurerelated terms was almost as great as those on fainting and syncope-related terms (5.8 million and 6 million, respectively) despite the many times greater incidence of syncope than seizures, demonstrating the strong drive to seek information about seizures online.16 Another study found that 63% of families of children with epilepsy accessed Internet sites that had not been recommended by their health care provider, and these users rated those sites as highly reliable, despite evidence to the contrary.17 A study of the Google search engine found that from 2004 to 2013 there were >3 million searches for “seizure” and almost 21,000 for “SUDEP.” A 5,000% increase was noted from 2004 to 2013 for the search term “epilepsy SUDEP.”18 However, the Internet may not be the best place for people with epilepsy and their caregivers to access information, particularly about sensitive issues such as SUDEP. Information presented on Websites may not be written at an appropriate level. Assessment of two popular U.S.-based epilepsy consumer Websites in 2007 and 2009 determined that
