Parental and physician beliefs regarding the provision and content of written sudden unexpected death in epilepsy (SUDEP) information.

Neti A Gayatri
Neti A Gayatri
The Leeds Teaching Hospitals NHS Trust
Vivek Jain
Vivek Jain
San Francisco General Hospital
United States
Pawan Kashyape
Pawan Kashyape
Southampton University Hospital
Southampton | United Kingdom
Karen Pysden
Karen Pysden
The Leeds Teaching Hospitals NHS Trust
United Kingdom
Colin Ferrie
Colin Ferrie
The Leeds Teaching Hospitals NHS Trust
United Kingdom

Epilepsia 2010 May 7;51(5):777-82. Epub 2010 Jan 7.

Department of Paediatric Neurology, The Leeds Teaching Hospitals NHS Trust, UK.

Purpose: The 2007 UK National Institute for Health and Clinical Excellence (NICE) guidelines for epilepsy recommend disclosing the risk of sudden unexpected death in epilepsy (SUDEP) to patients. This recommendation is not undertaken routinely, and considerable variation in individual physician practice exists. Literature indicates wariness of causing distress and anxiety, particularly to children/young people and their families through disclosing a nonpreventable risk. There has been no systematic pediatric study examining parent/guardian information needs and beliefs for risk of SUDEP and its impact on seizure management. It is important to first address these concerns before routinely imparting SUDEP information to parents following NICE recommendations.

Methods: Two questionnaire surveys: a questionnaire examining the provision by pediatric neurologists of SUDEP information, and questionnaires examining parental beliefs and implications at two time points regarding SUDEP information provided in a leaflet. Participants were included in the study if their child had an established diagnosis of epilepsy. Factors for exclusion were single unprovoked seizure, absence seizures, patients in remission, and active discontinuation of treatment.

Results: The majority (74%) of pediatric neurologists provided SUDEP information only to a select group of children with epilepsy and were uncertain about the effect such information would have upon the parent and child. Conversely, 91% of parents expected the pediatric neurologist to provide SUDEP risk information. The provision of this information did not have a significant immediate and longer-term negative impact.

Discussion: The majority of parents wanted to know about SUDEP and its associated risks. Whenever possible, SUDEP information should be given by the physician accompanied by an information leaflet.

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May 2010
12 Reads
5 PubMed Central Citations(source)
4.57 Impact Factor

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(Supplied by CrossRef)
Review of the legal obligations of the doctor to discuss Sudden Unexpected Death in Epilepsy (SUDEP) - a cohort controlled comparative cross- matched study in an outpatient epilepsy clinic
Beran et al.
Seizure 2004
SUDEP: whether to tell and when?
Black et al.
Med Law 2005
Mortality risk in children with epilepsy: the Dutch study of epilepsy in childhood
Callenbach et al.
Pediatrics 2001
Death in children with epilepsy: a population-based study
Camfield et al.
Lancet 2002

Do H et al.
Sudden unexplained death in children with epilepsy
Donner et al.
Neurology 2001

Eiser et al.
A proposed diagnostic scheme for people with epileptic seizures and with epilepsy: Report of the ILAE Task Force on Classification and Terminology
Engel et al.
Epilepsia 2001
Compliance with treatment protocols: interventions for children with chronic illness
Fielding et al.
Arch Dis Child 1999

General Medical Council et al.
Do young people’s illness beliefs affect healthcare? A systematic review
Haller et al.
J Adolesc Health 2008

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