Increasing Awareness of Sudden Death in Pediatric Epilepsy Together

Lapham, Gardiner; Gaillard, William D.; Sexter, Joanna; Berl, Madison M.

doi:10.1542/peds.2016-3127

Cited by 3 publications

(1 citation statement)

References 9 publications

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“…Literature exploring current methods of discussing epilepsy-related death focused on the education of PWE and their family in relation to SUDEP (6,(10)(11)(12)(13)(14)(15)(16)(17)(18)(19). There was, however, a lack of discussion on the topic of epilepsy-related death in general.…”

Section: Discussion Of Sudepmentioning

confidence: 99%

Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis

Collard

Regmi

2019

Epilepsy & Behavior

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People with epilepsy (PWE) have a two-to-threefold increased chance of premature death due to the condition (1). Epilepsy-related deaths are most commonly caused by epilepsyrelated accidents, suicide as a result of ill mental health, status epilepticus and sudden unexpected death in epilepsy (SUDEP) (2, 3). Uncertainty and fear surrounding the possibility of unexpected death causes PWE to desire to learn more about this aspect of living with epilepsy, particularly those with refractory epilepsy (4). SUDEP is the most common cause of death for PWE (5), yet PWE are not always told about this high risk (6). Although research within epilepsy-related death causes and prevention has increased, the qualitative insight of PWE, their family, friends, and healthcare providers (HCP) needs to be presented. This would enable further insight into what may aid adherence to management strategies, what is known about SUDEP, and the psychosocial impact the knowledge of SUDEP has upon the PWE and those around them who love and care for them. In presenting this literature, it is hoped that this could help prevent and promote interventions of unexpected death of people with epilepsy.. Addressing this need, we aimed to: a) present the experiences of PWE (e.g. children, teenagers, adults) discussing their thoughts and beliefs of SUDEP, what PWE have been told about SUDEP by their HCP, and their thoughts and feelings about interventions to prevent unexpected death; b) friends/family of PWE 's thoughts and feelings of SUDEP, and their thoughts and feelings on interventions to prevent SUDEP; and c), HCPs' discussion of the topic with PWE and interventions and/or prevention methods HCPs believe work best. 2. Material and methods We carried out a narrative synthesis to obtain a rigorous review of the qualitative research and grey literature within epilepsy-related death. This was through combining different types of evidence (e.g., qualitative research, mixed-methods research, grey literature) and examining relationships within and between studies and reports (7). 2.1 Search strategy: A comprehensive electronic literature search of all relevant peerreviewed qualitative studies and grey literature was conducted (see Figure 1). Databases

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Section: Discussion Of Sudepmentioning

confidence: 99%

Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis

Collard

Regmi

2019

Epilepsy & Behavior

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Review: The past, present and future challenges in epilepsy‐related and sudden deaths and biobanking

Thom¹,

Boldrini

Bundock

et al. 2018

Neuropathology Appl Neurobio

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The past, present and future challenges in epilepsy-related and sudden deaths and biobanking Awareness and research on epilepsy-related deaths (ERD), in particular Sudden Unexpected Death in Epilepsy (SUDEP), have exponentially increased over the last two decades. Most publications have focused on guidelines that inform clinicians dealing with these deaths, educating patients, potential risk factors and mechanisms. There is a relative paucity of information available for pathologists who conduct these autopsies regarding appropriate post mortem practice and investigations. As we move from recognizing SUDEP as the most common form of ERD toward indepth investigations into its causes and prevention, health professionals involved with these autopsies and post mortem procedure must remain fully informed.Systematizing a more comprehensive and consistent practice of examining these cases will facilitate (i) more precise determination of cause of death, (ii) identification of SUDEP for improved epidemiological surveillance (the first step for an intervention study), and (iii) biobanking and cell-based research. This article reviews how pathologists and healthcare professionals have approached ERD, current practices, logistical problems and areas to improve and harmonize. The main neuropathology, cardiac and genetic findings in SUDEP are outlined, providing a framework for best practices, integration of clinical, pathological and molecular genetic investigations in SUDEP, and ultimately prevention.

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Sudden Unexpected Death in Epilepsy Counseling—An American Epilepsy Society Position Statement

Gaillard¹

2020

US Neurology

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Increasing Awareness of Sudden Death in Pediatric Epilepsy Together

Cited by 3 publications

References 9 publications

Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis

Qualitative insights into the feelings, knowledge, and impact of SUDEP: A narrative synthesis

Review: The past, present and future challenges in epilepsy‐related and sudden deaths and biobanking

Sudden Unexpected Death in Epilepsy Counseling—An American Epilepsy Society Position Statement

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