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Mortality from Sudden Unexpected Death in Epilepsy (SUDEP) in a Cohort of Adults with Intellectual Disability

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Title: Mortality from Sudden Unexpected Death in Epilepsy (SUDEP) in a Cohort of Adults with Intellectual Disability
Language: English
Authors: Kiani, R., Tyrer, F., Jesu, A., Bhaumik, S., Gangavati, S., Walker, G., Kazmi, S., Barrett, M.
Source: Journal of Intellectual Disability Research. Jun 2014 58(6):508-520.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Page Count: 13
Publication Date: 2014
Document Type: Journal Articles
Reports - Research
Descriptors: Death, Seizures, Epilepsy, Mental Retardation, At Risk Persons, Mortality Rate, Adults, Foreign Countries, Databases, Incidence, Gender Differences, Risk Management
Geographic Terms: United Kingdom, United Kingdom (Leicester)
DOI: 10.1111/jir.12047
ISSN: 0964-2633
Abstract: Background: People with intellectual disability (ID) and epilepsy are more likely to die prematurely than the general population. A significant number of deaths in people with epilepsy may be potentially preventable through better seizure control, regular monitoring and raising awareness among patients and carers. The aim of this project was to study mortality from sudden unexpected death in epilepsy (SUDEP) in adults with ID. Methods: All adults (=20 years old) living in Leicester city, Leicestershire and Rutland, UK, with ID between 1993 and 2010 were identified using the Leicestershire Intellectual Disability Register database. People with and without ID who died during the same period were identified using death certificate data from the Office for National Statistics (ONS). Deaths from probable and definite SUDEP were identified. Additional information on adults with ID who had died from probable or definite SUDEP was obtained from case notes and post-mortem reports, where available. Cases of probable and definite SUDEP in adults with ID were compared with the general population using standardised mortality ratios (SMRs). Results: A total of 898 adults with ID had died over the 18-year study period. Of these, 244 deaths (27%) occurred in people with ID who had a diagnosis of epilepsy. Twenty-six people with ID died from probable or definite SUDEP, which was the second most common cause of death among adults with ID and epilepsy. All-cause specific SMRs were 2.2 [95% confidence interval (CI): 2.0-2.4] and 2.8 (95% CI: 2.5-3.1) for men and women with ID respectively. SMRs were 3.2 (95% CI: 2.7-3.8) and 5.6 (95% CI: 4.6-6.7) for men and women with epilepsy and ID respectively. During the same study period, 83 adults without ID had died of probable or definite SUDEP. The SMRs for SUDEP in patients with ID were 37.6 for men (95% CI: 21.9-60.2) and 52.0 for women (95% CI: 23.8-98.8). We found that in the majority of ID cases there was little detailed documentation on the circumstances surrounding deaths, no communication with patients/carers about risk of SUDEP and an absence of post-mortem reports or carers' referral for bereavement counselling. Conclusion: The authors believe that a comprehensive risk management under a multiagency/multidisciplinary framework should be undertaken for all adults with ID and epilepsy in day-to-day clinical practice to reduce mortality in people with ID.
Abstractor: As Provided
Entry Date: 2014
Accession Number: EJ1024896
Database: ERIC
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  Value: <anid>AN0095829709;eul01jun.14;2018Jul09.15:23;v2.2.500</anid> <title id="AN0095829709-1">Mortality from sudden unexpected death in epilepsy ( SUDEP) in a cohort of adults with intellectual disability. </title> <p>Background: People with intellectual disability (ID) and epilepsy are more likely to die prematurely than the general population. A significant number of deaths in people with epilepsy may be potentially preventable through better seizure control, regular monitoring and raising awareness among patients and carers. The aim of this project was to study mortality from sudden unexpected death in epilepsy (SUDEP) in adults with ID. Methods: All adults (≥20 years old) living in Leicester city, Leicestershire and Rutland, UK, with ID between 1993 and 2010 were identified using the Leicestershire Intellectual Disability Register database. People with and without ID who died during the same period were identified using death certificate data from the Office for National Statistics (ONS). Deaths from probable and definite SUDEP were identified. Additional information on adults with ID who had died from probable or definite SUDEP was obtained from case notes and post‐mortem reports, where available. Cases of probable and definite SUDEP in adults with ID were compared with the general population using standardised mortality ratios (SMRs). Results: A total of 898 adults with ID had died over the 18‐year study period. Of these, 244 deaths (27%) occurred in people with ID who had a diagnosis of epilepsy. Twenty‐six people with ID died from probable or definite SUDEP, which was the second most common cause of death among adults with ID and epilepsy. All‐cause specific SMRs were 2.2 [95% confidence interval (CI): 2.0–2.4] and 2.8 (95% CI: 2.5–3.1) for men and women with ID respectively. SMRs were 3.2 (95% CI: 2.7–3.8) and 5.6 (95% CI: 4.6–6.7) for men and women with epilepsy and ID respectively. During the same study period, 83 adults without ID had died of probable or definite SUDEP. The SMRs for SUDEP in patients with ID were 37.6 for men (95% CI: 21.9–60.2) and 52.0 for women (95% CI: 23.8–98.8). We found that in the majority of ID cases there was little detailed documentation on the circumstances surrounding deaths, no communication with patients/carers about risk of SUDEP and an absence of post‐mortem reports or carers’ referral for bereavement counselling. Conclusion: The authors believe that a comprehensive risk management under a multiagency/multidisciplinary framework should be undertaken for all adults with ID and epilepsy in day‐to‐day clinical practice to reduce mortality in people with ID.</p> <p>epilepsy; intellectual disability; standardised mortality ratio; sudden unexpected death in epilepsy; SUDEP; death certificate</p> <p>People with intellectual disability (ID) are several times more likely to die before the age of 50 than the rest of the population (Hollins et al. [<reflink idref="bib17" id="ref1">17</reflink>] ), mainly because of the higher prevalence of co‐morbidities such as congenital malformations and neurological conditions in this population (McGrother et al. [<reflink idref="bib30" id="ref2">30</reflink>] ; Hitiris et al. [<reflink idref="bib16" id="ref3">16</reflink>] ).</p> <p>A common measure employed in mortality studies is the standardised mortality ratio (SMR). This is the ratio of observed deaths in the population of interest over the expected deaths using the general population death rate.</p> <p>In 2009, a study in a population of adults with ID in Leicestershire found an all‐cause SMR of 2.77 [95% confidence interval (CI): 2.53–3.03]. At a particular disadvantage were those with congenital malformations (SMR: 85.6; 95% CI: 62.67–114.18) and co‐morbid diseases of the nervous system (including epilepsy) and sense organs (overall SMR = 16.3; 95% CI: 12.61–20.74) (Tyrer & McGrother [<reflink idref="bib55" id="ref4">55</reflink>] ).</p> <p>Epilepsy is common among adults with ID (IQ ≤ 70), with an approximate average prevalence of 26% (Kerr et al. [<reflink idref="bib21" id="ref5">21</reflink>] ). Epilepsy in people with ID usually starts in early childhood and often has different presentations. Many suffer from what is deemed to be refractory epilepsy due to the presence of structural abnormalities of the nervous system and poor response to various treatment modalities. Presentation of epilepsy in this population can be atypical and complex due to the combined presence of autism (Amiet et al. [<reflink idref="bib1" id="ref6">1</reflink>] ), sensory/motor impairments, side effects of psychotropic medication and stereotypical and challenging behaviours. It can be difficult to tease out epilepsy from these other co‐morbid presentations because some patients may not be able to directly participate in the investigations and management strategies due to communication deficits, presence of multiple physical problems or issues related to their capacity (Branford et al. [<reflink idref="bib6" id="ref7">6</reflink>] ; Matthews et al. [<reflink idref="bib31" id="ref8">31</reflink>] ).</p> <p>In epilepsy cohort studies, SMRs have varied according to differences in methodology; for example a prospective population‐based UK national general practice study of newly diagnosed epilepsy (Lhatoo et al. [<reflink idref="bib26" id="ref9">26</reflink>] ) showed an overall SMR of 2.1 (95% CI: 1.8–2.4). In another study of people with newly diagnosed unprovoked epileptic seizures (Lindsten et al. [<reflink idref="bib27" id="ref10">27</reflink>] ), the SMR was 2.5 (95% CI: 1.2–3.2). Mortality rates directly related to epilepsy in studies conducted in hospitals and institutions are higher than those carried out in the community (Lhatoo & Sander [<reflink idref="bib25" id="ref11">25</reflink>] ). In a prospective study conducted in both inpatient and outpatient settings in the Netherlands, Shackleton et al. ([<reflink idref="bib51" id="ref12">51</reflink>] ) found that all‐cause mortality was increased threefold (risk ratio: 3.2; 95% CI: 2.9–3.5) in those with newly diagnosed epilepsy, whilst in a population‐based study in France, Loiseau et al. ([<reflink idref="bib28" id="ref13">28</reflink>] ) found a SMR of 9.3 (95% CI: 7.9–10.9) for short‐term mortality after a first epileptic seizure.</p> <p>In one study, the SMR for people with epilepsy in the background of ID was reported to be as high as 5.0 (95% CI: 3.3–7.5); if cerebral palsy was also present, the SMR further increased to 5.8 (95% CI: 3.4–9.7) and the highest mortality (SMR = 8.1; 95% CI: 5.7–11.5) was noted for those whose seizures were generalised from the onset (Forsgren et al. [<reflink idref="bib12" id="ref14">12</reflink>] ).</p> <p>Sudden unexpected death in epilepsy (SUDEP) is the most important category of epilepsy‐related death and has been defined (Nashef [<reflink idref="bib33" id="ref15">33</reflink>] ) as a sudden, unexpected, non‐traumatic and non‐drowning death in an individual with epilepsy, witnessed or un‐witnessed which can occur with or without evidence of a seizure. A documented status epilepticus must be ruled out as a cause of death (COD) and post mortem investigations should not show any clear cause for death.</p> <p>Annegers ([<reflink idref="bib2" id="ref16">2</reflink>] ) defined SUDEP as a death without an obvious medical cause which happens unexpectedly and suddenly in someone with a diagnosis of epilepsy during normal daily activities and benign circumstances. Based on post mortem examination and events leading up to death, SUDEP can be classified as (i) definite (with a post‐mortem report), (ii) probable (without post‐mortem confirmation), (iii) possible (data regarding the circumstances of death is insufficient) and (iv) unlikely/not SUDEP (other causes of death are established).</p> <p>The incidence of SUDEP ranges from less than 1 in 1000 per person‐years in people with epilepsy in community, to 2–5 per 1000 person‐years in epilepsy tertiary centres, and 6–9 per 1000 person‐years in epilepsy surgery centre (Neligan et al. [<reflink idref="bib41" id="ref17">41</reflink>] ). Nilsson et al. ([<reflink idref="bib44" id="ref18">44</reflink>] ) carried out a study on mortality in a cohort of epilepsy surgery patients in Sweden between January 1990 and December 1998 where 651 operations had been carried out on 596 patients. They reported a total SMR of 4.9 (95% CI: 2.7–8.3) and a SUDEP incidence of 2.4 per 1000 person‐years (14 patients had died including six from SUDEP). In a prospective population‐based study, Sillanpää & Shinnar ([<reflink idref="bib52" id="ref19">52</reflink>] ) followed 245 children with epilepsy in Finland for a median period of 40 years. They found that 60 of them died (24%) over the course of study (SMR three times higher than expected). Thirty‐three deaths were related to epilepsy (55%) including SUDEP in 18 subjects (30%), definite or probable seizure in 9 (15%), and accidental drowning in 6 (10%). Similarly, Neligan et al. ([<reflink idref="bib42" id="ref20">42</reflink>] ) followed up 792 people with a diagnosis of new onset epilepsy for over 20 years in the UK. They reported an overall SMR of 2.2; however, few people had died of epilepsy‐related deaths (3 from Status Epilepticus, 3 from drowning and accidents and 1 from possible SUDEP).</p> <p>SUDEP seems to be the most common COD among younger epileptic patients and those with poorly controlled seizures (Annegers et al. [<reflink idref="bib3" id="ref21">3</reflink>] ; Hitiris et al. [<reflink idref="bib16" id="ref22">16</reflink>] ) and may account for up to 17% of all epilepsy‐related deaths (Lhatoo & Sander [<reflink idref="bib25" id="ref23">25</reflink>] ). According to Epilepsy Bereaved (<ulink href="http://www.sudep.org">http://www.sudep.org</ulink>), a UK‐based charity organisation promoting awareness of SUDEP in people with epilepsy, as many as 3 people per day in the UK die as a result of epilepsy. The national sentinel clinical audit of epilepsy‐related death has also shown that around half of these cases (over 500 people per year) are due to SUDEP (Hanna et al. [<reflink idref="bib13" id="ref24">13</reflink>] ).</p> <p>In most cases, patients are found dead and no seizure has been witnessed. In these un‐witnessed cases tongue biting (Ulrich & Maxeiner [<reflink idref="bib56" id="ref25">56</reflink>] ), incontinence and being found dead out of bed or in a prone position at the time of death (Kloster & Engelskjon [<reflink idref="bib22" id="ref26">22</reflink>] ) might be suggestive of a convulsive seizure before death. Risk factors for SUDEP include sub‐therapeutic doses of medication, structural brain damage, accompanying psychotropic medication (Nashef [<reflink idref="bib34" id="ref27">34</reflink>] ; Tomson et al. [<reflink idref="bib54" id="ref28">54</reflink>] ), nocturnal or early morning seizure (Lamberts et al. [<reflink idref="bib23" id="ref29">23</reflink>] ), high seizure frequency (Hesdorffer et al. [<reflink idref="bib14" id="ref30">14</reflink>] ), earlier age of onset of epilepsy, frequent medication changes (Nilsson et al. [<reflink idref="bib43" id="ref31">43</reflink>] ), failure to collect repeat prescription (Ridsdale et al. [<reflink idref="bib47" id="ref32">47</reflink>] ), poor adherence (Faught et al. [<reflink idref="bib10" id="ref33">10</reflink>] ) and an IQ below 70 (Walczack et al. [<reflink idref="bib57" id="ref34">57</reflink>] ).</p> <hd id="AN0095829709-2">Aims</hd> <p>We conducted a retrospective study of adults who died from SUDEP between 1993 and 2010 to describe and compare mortality from SUDEP in the ID and non‐ID population.</p> <hd id="AN0095829709-3">Methodology</hd> <p>In Leicestershire, epilepsy in people with ID is managed by either the local community ID team, Neurology Service or Primary Care (local General Practitioners, GPs). Based on the complexity of the epilepsy and presence of other physical and psychiatric co‐morbidities, in some individuals all three services might be working collaboratively.</p> <hd id="AN0095829709-4">Inclusion and exclusion criteria</hd> <p>Data on ID patients who died from SUDEP, defined as a cause of death (COD) directly related to epilepsy, were obtained from the Leicestershire Intellectual Disability Register (LIDR) database and deaths information from the Office for National Statistics (ONS). The LIDR is a well‐established case register holding information on a representative sample of adults with ID who are receiving, or likely to receive, specialist support in the unitary authorities of Leicester City, Leicestershire and Rutland (McGrother et al. [<reflink idref="bib29" id="ref35">29</reflink>] ). Between 1993 and 2010, the register held information on 5391 eligible adults with ID.</p> <p>We identified all deaths reported as epilepsy‐related in adults aged 20 years or over on the LIDR between 1993 and 2010. Adults were excluded if they had borderline intellectual functioning (IQ between 70–85) and a leading or competing COD unrelated to epilepsy. CODs were identified using information on death certificates from the ONS, provided by the Leicestershire Health Informatics Service. When available, additional post‐mortem reports and medical case files were obtained.</p> <p>Cases of epilepsy‐related deaths among adults without ID were also identified using the ONS death certificate information. Cases were excluded if they had another leading or competing COD listed in their death certificate. We were, however, unable to access the case files of adults without ID because these adults’ epilepsy was managed by different services or NHS Trusts in Leicestershire.</p> <hd id="AN0095829709-5">Classification of SUDEP</hd> <p>For each person several CODs could have been reported in their death certificate (coded as COD1–5). We used Annegers ([<reflink idref="bib2" id="ref36">2</reflink>] ) criteria to identify different categories of SUDEP in our study. Cases were defined as having died from SUDEP if they had in their death certificate one of the terms below:</p> <p>SUDEP listed as their COD (definite SUDEP: based on post‐mortem report of SUDEP/natural verdict by the Coroner)</p> <p>Epilepsy or epilepsy related unspecified as their only COD (probable SUDEP: with no other competing COD and no post‐mortem report)</p> <p>Epilepsy or epilepsy related unspecified as one of the CODs (possible SUDEP: along with other competing CODs)</p> <hd id="AN0095829709-6">SUDEP case ascertainment among adults without ID</hd> <p>The adult population of Leicester city, Leicestershire and Rutland was approximately 700 000 between 1993 and 2010. We identified all deaths from epilepsy, epilepsy related (unspecified) and SUDEP (n = 607 of total population) in Leicester city, Leicestershire and Rutland between 1993 and 2010 from the ONS deaths database. Eighty‐three cases of SUDEP were identified in adults without ID, comprising 74 cases of probable SUDEP (without a post‐mortem report and with no other competing COD) and 9 cases of definite SUDEP (post‐mortem report of SUDEP/natural verdict by the Coroner) (Fig. [NaN] ).</p> <hd id="AN0095829709-7">SUDEP case ascertainment among adults with ID</hd> <p>A total of 5391 adults with ID were registered with the LIDR during the study period (1993–2010) of whom 1027 people had epilepsy (19%).</p> <p>A total of 898 adults with ID had died during the 18‐year observation period of more than 62 000 observation years of follow‐up (n = 5391 adults in total) (Fig. [NaN] ). Two hundred and forty‐four of those who died had a diagnosis of epilepsy (27%) and 654 (73%) had either registered without a diagnosis of epilepsy or with an unknown epilepsy status. Overall, 33 potential cases of SUDEP (13.5%) were identified from LIDR database based on the information available in their death certificates. Seven cases (2.8%) were diagnosed with possible SUDEP as further examination of the case files and death certificates could not ascertain whether a seizure or another competing COD was the leading COD.</p> <p>Twenty‐six patients (10.9%) with (i) probable (no other competing CODs but without a post‐mortem report; n = 20) and (ii) definite (post‐mortem report of SUDEP/natural verdict by the Coroner; n = 6) SUDEP were included in the SMR calculation (Fig. [NaN] ) using the same rigid criteria applied to the non‐ID population (so that identification of SUDEP cases was consistent among people with and without ID).</p> <hd id="AN0095829709-8">Statistical analysis</hd> <p>Overall, we identified 109 cases of probable and definite SUDEP in adults with and without ID during the 18‐year study period (1993–2010). Indirectly standardised all‐cause and SUDEP‐specific mortality ratios (SMRs) and exact Poisson confidence intervals were calculated by age (10‐year bands) and gender for patients with ID.</p> <p>The population denominator was measured in years of observation time per person (i.e. person‐years) over the 18‐year period. People were assumed to be alive at the end of the observation period (i.e. 31/12/2010) unless reported dead (deaths are updated routinely using monthly updates from the ONS), whereby their contribution to person‐years stopped on the date they were last known to be alive. A person could contribute person‐years to different age groups depending on their age during the study period. For example, an adult who was aged 25 in 2000 and was followed up for 10 years between 2000 and 2009 contributed 5 years to the 25–29 year age band (2000–2004) and a further 5 years to the 30–39 year age band (2005–2009).</p> <p>People who moved out of the county still contributed to the person‐year calculation, but only until the date that they moved (e.g. if they moved in 1994, they would only contribute one year from 1993 to 1994 to the analysis).</p> <p>Person‐years were also calculated for comparison using mid‐year population estimates for Leicester city, Leicestershire and Rutland (National Statistics [<reflink idref="bib39" id="ref37">39</reflink>] ).</p> <hd id="AN0095829709-9">Case note investigation</hd> <p>Case notes were investigated further for adults who were registered with local ID services using a proforma to collect further clinical information. The care these adults received was evaluated against standards highlighted in the national sentinel clinical audit of epilepsy‐related death (Hanna et al. [<reflink idref="bib13" id="ref38">13</reflink>] ) and the NICE guidelines (NICE CG20, 2004) for the management of epilepsy, namely (i) recording the type and severity of epilepsy; (ii) whether patients were on poly‐pharmacy and if this was regularly reviewed; and (iii) whether patients had an epilepsy care plan/protocol for use of rescue medication. Case notes were investigated to determine whether SUDEP had been discussed with the families/carers. The record keeping after the individual's death was also scrutinised to ascertain if case files contained the detail of circumstances around death or post mortem reports.</p> <hd id="AN0095829709-10">Results</hd> <p>Nearly two‐thirds of adults who died from SUDEP in both populations (with and without ID) were male. Adults with ID who died from SUDEP were generally younger (62% were under the age of 40 when they died compared with 40% of adults without ID), but differences did not reach statistical significance (χ<sups>2</sups>P = 0.2 for age group as a whole) (Table [NaN] ).</p> <p>Sudden unexpected death in epilepsy (probable and definite cases): 1993–2010</p> <p> <ephtml> <table><tr><th /><th align="left">Adults without ID (n = 83)</th><th align="left">Adults with ID (n = 26)</th></tr><tr><td>Gender</td><td align="left" /><td align="left" /></tr><tr><td>Male</td><td align="left">55 (66.3%)</td><td align="left">17 (65.4%)</td></tr><tr><td>Age group (years)</td><td align="left" /><td align="left" /></tr><tr><td>20–29</td><td align="left">13 (15.7%)</td><td align="left">7 (26.9%)</td></tr><tr><td>30–39</td><td align="left">20 (24.1%)</td><td align="left">9 (34.7%)</td></tr><tr><td>40–49</td><td align="left">29 (34.9%)</td><td align="left">5 (19.2%)</td></tr><tr><td>50+</td><td align="left">21 (25.3%)</td><td align="left">5 (19.2%)</td></tr></table> </ephtml> </p> <p>1 ID, intellectual disability.</p> <p>Table [NaN] shows the overall SMR, SMR for epilepsy and the SMR for SUDEP in men and women with ID known to have epilepsy. None of the deaths in the ID population were reported to be from surgical or pharmacological treatment of epilepsy (toxicity or overdose) or accidents (injury, drowning, choking or burns) directly related to epilepsy. Table [NaN] compares the first COD among adults with ID who were known to have epilepsy and those not known to have epilepsy. Deaths from pulmonary causes were more prevalent and deaths from cardiovascular causes were less prevalent among adults with ID and epilepsy.</p> <p>SMR (adjusted for age) in men and women with ID : 1993–2010</p> <p> <ephtml> <table><tr><th /><th align="left">Men</th><th align="left">Women</th></tr><tr><th>Observed (35 912 PY)</th><th align="left">Expected</th><th align="left">SMR (95% CI)</th><th align="left">Observed (26 513 PY)</th><th align="left">Expected</th><th align="left">SMR (95% CI)</th></tr><tr><td>All causes</td><td align="char" char=".">514</td><td align="char" char=".">230.7</td><td align="left">2.2 (2.0–2.4)</td><td align="char" char=".">384</td><td align="char" char=".">136.4</td><td align="left">2.8 (2.5‐3.1)</td></tr><tr><td>SUDEP (probable and definite cases)</td><td align="char" char=".">17</td><td align="char" char=".">0.5</td><td align="left">37.6 (21.9–60.2)</td><td align="char" char=".">9</td><td align="char" char=".">0.2</td><td align="left">52.0 (23.8–98.8)</td></tr></table> </ephtml> </p> <p></p> <p> <ephtml> <table><tr><th>Adults with ID and epilepsy </th><th align="left">(7517 PY) </th><th align="left">Expected</th><th align="left">SMR (95% CI)</th><th align="left">(5684 PY) </th><th align="left">Expected</th><th align="left">SMR (95% CI)</th></tr><tr><td>All causes</td><td align="left">125</td><td align="left">39.2</td><td align="left">3.2 (2.7–3.8)</td><td align="left">119</td><td align="left">21.3</td><td align="left">5.6 (4.6–6.7)</td></tr></table> </ephtml> </p> <p>2 SUDEP, sudden unexpected death in epilepsy; CI, confidence interval; ID, intellectual disability; PY, person‐year; SMR, standardised mortality ratio.</p> <p>First cause of death ( COD 1) in adults with ID (with and without epilepsy), broadly classified from their death certificates (excluding SUDEP in epilepsy group)</p> <p> <ephtml> <table><tr><th>COD1</th><th align="left">Adults with ID and epilepsy (n = 220)</th><th align="left">Adults with ID but without epilepsy (or with unknown epilepsy status) (n = 645)</th></tr><tr><td>Pulmonary</td><td align="left">114 (51.8%)</td><td align="left">261 (40.5%)</td></tr><tr><td>Cardiovascular</td><td align="left">25 (11.3%)</td><td align="left">155 (24.0%)</td></tr><tr><td>Malignancy/neoplasms</td><td align="left">16 (7.3%)</td><td align="left">57 (8.8%)</td></tr><tr><td>Nervous system/cerebral/cerebrovascular</td><td align="left">15 (6.8%)</td><td align="left">44 (6.8%)</td></tr><tr><td>Sepsis/shock</td><td align="left">13 (5.9%)</td><td align="left">34 (5.3%)</td></tr><tr><td>Gastrointestinal</td><td align="left">10 (4.5%)</td><td align="left">24 (3.7%)</td></tr><tr><td>Urinary system</td><td align="left">7 (3.2%)</td><td align="left">16 (2.5%)</td></tr><tr><td>Foreign body in larynx/choking/asphyxiation</td><td align="left">7 (3.2%)</td><td align="left">12 (1.9%)</td></tr><tr><td>Dementia/senility</td><td align="left">5 (2.3%)</td><td align="left">16 (2.5%)</td></tr><tr><td>Status epilepticus</td><td align="left">1 (0.5%)</td><td align="left">0 (0.0%)</td></tr><tr><td>Haematological</td><td align="left">1 (0.5%)</td><td align="left">1 (0.2%)</td></tr><tr><td>Diabetes related, unspecified</td><td align="left">–</td><td align="left">2 (0.3%)</td></tr><tr><td>Liver failure</td><td align="left">–</td><td align="left">2 (0.3%)</td></tr><tr><td>Alcohol related, unspecified</td><td align="left">–</td><td align="left">1 (0.2%)</td></tr><tr><td>Ill‐defined and unspecified causes of mortality</td><td align="left">6 (2.7%)</td><td align="left">20 (3%)</td></tr></table> </ephtml> </p> <ulist> <item>3 124 adults on the Leicestershire Intellectual Disability Register had unknown epilepsy status.</item> <item>4 SUDEP, sudden unexpected death in epilepsy; ID, intellectual disability.</item> </ulist> <hd id="AN0095829709-11">Demographic characteristics of patients with SUDEP and ID</hd> <p>Seventeen men (65.3%) and 9 women (34.7%) died from SUDEP, with the maximum number of deaths (n = 16; 61.5%) occurring in the 20–39 year age group followed by the 40 years and over age group (n = 10; 38.5%).</p> <p>Twenty‐three adults (88.4%) were of White origin, 2 (7.7%) were of Afro‐Caribbean ethnicity. For one patient we could not identify the ethnic origin. Eight patients (30.7%) were living at home with their parents or partners at the time of death. Only 1 patient (4%) was living independently in the community at the time of death. The remaining patients (65.3%) were living either in a residential home, health home or supported living. The majority of the patients (n = 21; 80.7%) had a diagnosis of moderate to profound ID (IQ < 50). We were unable to determine the aetiology of the ID in the majority of cases (n = 11; 42.3%). The aetiology in the rest had been documented as: perinatal complication/asphyxia/cerebral palsy (n = 6), tuberous sclerosis (n = 3), Down syndrome (n = 2) and meningo‐encephalitis/prolonged tonic clonic seizure during infancy (n = 2). For two patients epilepsy syndromes had been documented as the aetiology of their ID: Lennox Gastaut syndrome (n = 1) and infantile spasm (n = 1).</p> <hd id="AN0095829709-12">Co‐morbidities in people with ID</hd> <p>Case notes were not available for six adults who died from SUDEP, probably because they were receiving epilepsy management care from their GP or Neurology Service. Of the 20 adults remaining, 13 patients (65%) had co‐morbid physical health problems (Table [NaN] ). Fourteen patients (70%) had a diagnosis of co‐morbid mental health problems, of which 8 had autism spectrum disorder (40%) and 6 challenging behaviours (30%) (Table [NaN] ).</p> <p>C o‐morbid medical problems in patients with probable and definite SUDEP ( n  = 20 )</p> <p> <ephtml> <table><tr><th>Co‐morbidities</th><th align="left">Frequency</th></tr><tr><td>Severe speech difficulties</td><td align="left">6 (30%)</td></tr><tr><td>Musculoskeletal/motor/mobility problems (including two with kyphoscoliosis and one with Down syndrome and atlanto‐axial dislocation)</td><td align="left">6 (30%)</td></tr><tr><td>Incontinence (unrelated to seizures)</td><td align="left">5 (25%)</td></tr><tr><td>GI problems</td><td align="left">3 (15%)</td></tr><tr><td>Severe visual impairment</td><td align="left">2 (10%)</td></tr><tr><td>Severe hearing impairment</td><td align="left">2 (10%)</td></tr><tr><td>Heavy smoking</td><td align="left">2 (10%)</td></tr><tr><td>Hypothyroidism</td><td align="left">2 (10%)</td></tr><tr><td>PEG feeding</td><td align="left">1 (5%)</td></tr><tr><td>Migraine</td><td align="left">1 (5%)</td></tr><tr><td>Psoriasis</td><td align="left">1 (5%)</td></tr><tr><td>Asthma</td><td align="left">1 (5%)</td></tr></table> </ephtml> </p> <ulist> <item>5 Some adults had more than one co‐morbidity.</item> <item>6 Excludes 6 adults without case notes.</item> <item>7 GI, gastrointestinal problems; PEG, percutaneous endoscopic gastrotomy, SUDEP, sudden unexpected death in epilepsy.</item> </ulist> <p>C o‐morbid mental health problems in patients with probable and definite SUDEP ( n  = 20 )</p> <p> <ephtml> <table><tr><th>Co‐morbidities</th><th align="left">Frequency</th></tr><tr><td>ASD</td><td align="left">8 (40%)</td></tr><tr><td>CB</td><td align="left">6 (30%)</td></tr><tr><td>Mood disorders</td><td align="left">5 (25%)</td></tr><tr><td>Psychotic disorders</td><td align="left">4 (20%)</td></tr><tr><td>Personality disorders (including one case of arson and three cases of substance abuse)</td><td align="left">4 (20%)</td></tr><tr><td>Anxiety disorders</td><td align="left">2 (10%)</td></tr></table> </ephtml> </p> <ulist> <item>8 Some patients had more than one co‐morbidity.</item> <item>9 Excludes 6 adults without case notes.</item> <item>10 ASD, autism spectrum disorder; CB, challenging behaviours; SUDEP, sudden unexpected death in epilepsy.</item> </ulist> <hd id="AN0095829709-13">Record keeping</hd> <p>Of the 20 adults with information available, all but one had a clear record of the type of epilepsy documented in their case files, of which 7 (35%) had only tonic clonic seizures. The rest had a combination of tonic clonic seizures and other seizure types.</p> <p>In all case notes, severity of seizures had been documented (100%): 10 (50%) case note recorded epilepsy as poorly controlled or treatment resistant (of which 6 were on two antiepileptic medications, 3 on three antiepileptic medications and 1 on four antiepileptic medications).</p> <p>Although seizure frequency was documented in all case files except one, this was not reported in detail; sometimes only the approximate numbers of seizures (of all types) were documented, partly owing to lack of access to the seizure diary during the review. From the information available, we ascertained that before their death, 3 adults were experiencing daily seizures, 5 adults had seizures on a weekly basis and 6 of them suffered monthly epileptic attacks. For 3 adults no seizure had been recorded during the last month of their life, except until the time of their death.</p> <p>Nine patients (45%) were on antipsychotics and 3 (15%) were on antidepressant medications. Two patients (10%) were on two antipsychotic medications at the time of their death (including one on a combination of clozapine and levomepromazine). One patient (5%) had started a second antipsychotic medication weeks before her death for severe self‐injurious behaviour, however, the dosage prescribed was well below the maximum recommended dose and there was no evidence that the patient had suffered arrhythmias before death.</p> <p>History of cyanosis during a seizure was reported in 1 patient (5%) and 4 patients (20%) had a history of status epilepticus in the months to years before the time of their death. Five adults (25%) had a history of night time/early morning epilepsy. The onset of epilepsy was reported as being during childhood or teenage year in the majority of cases (n = 19; 95%). Thirteen patients (65%) had an Epilepsy Care plan and similar number had a prescription/written protocol for the use of a rescue medication.</p> <p>Generally record keeping following the adult's death was poor. Only 5 medical case files (25%) recorded the news of the patient's death and any communication between the clinical team and family after the death of the patient including discussion on referral for bereavement counselling.</p> <p>Four adults (20%) had a seizure witnessed by their carers within 60 min prior to death. Only two files (10%) reported on the position of the adult after death (prone position). Three case files (15%) recorded that the adult's body was discovered by the carer on the bed or floor.</p> <hd id="AN0095829709-14">Discussion</hd> <p>We found that SUDEP was the second most common COD among adults with ID and epilepsy, after respiratory diseases. The SMR for SUDEP was 37.6 for men and 52.0 for women with ID. Given that all‐cause SMRs were 2.2 and 2.8 respectively for men and women with ID, rising to 3.2 and 5.6 for men and women with both ID and epilepsy, our figures for SUDEP are extremely high and confirm that SUDEP is an important COD in people with ID and epilepsy (Table [NaN] ). We recognise that the prevalence of epilepsy is much higher among adults with ID compared with the general population. However, given that the prevalence of epilepsy is between 0.5% and 1.0% in the general population (Forsgren [<reflink idref="bib11" id="ref39">11</reflink>] ; Joint Epilepsy Council [<reflink idref="bib18" id="ref40">18</reflink>] ; Rugg‐Gunn & Sander [<reflink idref="bib49" id="ref41">49</reflink>] ), and 26% in the ID population (Kerr et al. [<reflink idref="bib21" id="ref42">21</reflink>] ), the SMRs of 37.6 and 52.0 for men and women might suggest that adults with ID and epilepsy are disproportionately disadvantaged. This is consistent with previous work in this area (Walczack et al. [<reflink idref="bib57" id="ref43">57</reflink>] ), but we acknowledge that our sample size was relatively small.</p> <p>One key similarity between our findings and the results of the national sentinel clinical audit of epilepsy‐related death (Hanna et al. [<reflink idref="bib13" id="ref44">13</reflink>] ) was the absence of sufficient high quality data in the adults’ case notes and a general lack of information following their death (including documentation of the risk factors and reports of post‐mortem examination).</p> <p>The UK national sentinel clinical audit (Hanna et al. [<reflink idref="bib13" id="ref45">13</reflink>] ) revealed that only 1% of hospital records for adults showed that SUDEP had been discussed with the patients or families. Similarly, Morton et al. ([<reflink idref="bib32" id="ref46">32</reflink>] ) conducted a survey among the neurologists in the UK, which revealed only 4.7% of respondents discussed SUDEP with all and 31% with most of their patients. We could not find any recorded evidence of SUDEP being discussed with patients or their families/carers.</p> <p>In our study population, there was also a high prevalence of associated physical and mental health problems.</p> <p>None of ID patients who had died from SUDEP in our study were of South Asian ethnicity and only two from a Black Ethnic Minority background. This is surprising, given the high number of non‐White people living in this geographical location (12.9% of adults living in Leicester city, Leicestershire and Rutland are non‐White (National Statistics [<reflink idref="bib40" id="ref47">40</reflink>] ). On the LIDR database where ethnicity is known (n = 3591), 9.4% individuals in residential homes are non‐White compared with 25.1% of individuals in private households (living independently, with family carers and supported living accommodation) ).</p> <p>Although antipsychotics and antidepressants are commonly prescribed in this population to treat co‐morbid mental health problems and challenging behaviour, they are also known to be pro‐arrhythmic and to lower the seizure threshold (Brown [<reflink idref="bib7" id="ref48">7</reflink>] ). In our study, more than half of the adults were on a psychotropic medication, highlighting the frequency of poly‐pharmacy in this population (Ring et al. [<reflink idref="bib48" id="ref49">48</reflink>] ). Studies have shown an association between SUDEP and taking several anti‐epileptic medications (Hesdorffer et al. [<reflink idref="bib14" id="ref50">14</reflink>] ). Approximately half of our study population were on more than one anti‐epileptic medication. Concerns have been raised regarding occurrence of SUDEP after using vagal nerve stimulation (VNS) (Lenzer & Brownlee [<reflink idref="bib24" id="ref51">24</reflink>] ); however, the higher numbers of deaths reported might not be directly related to VNS but rather to the intractable nature of seizures. We did not have any patients with a history of neurosurgery or use of VNS.</p> <hd id="AN0095829709-15">Strengths and limitations</hd> <p>To the best of our knowledge this is the first study of its kind to address the issue of SUDEP in the ID population, and though not a population‐based study, we are confident that we included a representative population of adults with moderate to profound ID in Leicestershire who died during the study period (1993–2010).</p> <p>One of the major limitations of our study is that we were unable to access clinical case files of patients without ID to compare their clinical characteristics with those of adults with ID. However, we managed to compare the two groups’ demographic characteristics (age and sex) from the data available.</p> <p>We were also unable to ascertain whether or not any of our patients with ID were accessing Neurology Service at the time of their death because of organisational boundaries and logistical issues (in Leicestershire, ID services and the Neurology Service are affiliated to different NHS Trusts/hospitals). From a service evaluation/improvement perspective, we were only required to concentrate on the data already available in the medical and nursing case notes of patients with ID and epilepsy.</p> <p>Our study was retrospective and as such is limited to the quality of the data available on the death certificates and ID case files. Problems with the use of death certificates have been highlighted elsewhere (Bell et al. [<reflink idref="bib5" id="ref52">5</reflink>] ), but this was the only method available to us. As expected, we found it extremely challenging to allocate the SUDEP cases to various categories, simply because information on the death certificates or circumstances surrounding the death were not, in the majority of cases, backed up by a post‐mortem examination or detailed clinical record keeping.</p> <p>As with most SMR calculations, the number of deaths expected to occur was based on the general population, which includes the ‘exposed’ population, i.e. adults with and without ID and epilepsy who died from SUDEP. It has been shown that there is potential bias in the magnitude of SMRs using this method (Jones & Swerdlow [<reflink idref="bib19" id="ref53">19</reflink>] ). However, this bias is conservative (i.e. the difference between observed and expected number of deaths will have been attenuated).</p> <p>Given the newly published recommendations (Nashef et al. [<reflink idref="bib37" id="ref54">37</reflink>] ) for including cases with a competing COD as a possible SUDEP, we believe that the number of cases and the SMRs we found are an underestimate. However, we felt it necessary to do this (i.e. applying the same rigid criteria to both ID and the general population) to be able to calculate the SMR. We categorised those with a competing COD as possible SUDEP (cerebral degeneration unspecified, brain neoplasm unspecified, bronchiectasis, other congenital anomalies of heart, other respiratory disorders, and other forms of chronic ischaemic heart disease) because, although these chronic conditions are common in people with ID in contrast to the general population, we were unable to ascertain whether or not these were the leading COD.</p> <p>We also excluded a case with cardio‐respiratory arrest during a prolonged tonic clonic seizure at an ID respite facility which needed resuscitation by the ID nurses. This could have been classified as a ‘Near SUDEP’ according to the newly published recommendation by Nashef et al. ([<reflink idref="bib37" id="ref55">37</reflink>] ), had we had more information regarding the circumstances surrounding the death. In our sample we observed seven people with ID and epilepsy who died from the broad category of drowning, aspiration of foreign body or choking, but unfortunately there was no further information available in the death certificates or the case files to ascertain if these occurred during or shortly after a seizure and therefore were classified as death not directly related to epilepsy. Conversely, we did not consider a COD, such as ID, developmental difficulties of scholastic skills, conduct disorders and learning disability as a competing COD for SUDEP because these are classified as life‐long neuro‐developmental disorders and therefore could not be the acute/leading COD per se. In fact we were disappointed to see use of these and other similar terminologies (e.g. malaise, fatigue, senility and learning difficulties) reported as a COD. It seemed as if people with ID continued to experience diagnostic overshadowing even after their death.</p> <p>We were unable to investigate the quality of care that six patients received regarding their epilepsy management, because they were not receiving medical input from ID services at the time of their death.</p> <hd id="AN0095829709-16">Recommendations</hd> <p>The Department of Health ([<reflink idref="bib8" id="ref56">8</reflink>] ) has published an action plan to improve services for people with epilepsy in response to the national sentinel clinical audit (SUDEP report). Similarly, In March 2007, the American Epilepsy Society and the Epilepsy Foundation jointly convened a task force to determine the current knowledge about SUDEP. They subsequently published their recommendations (So et al. [<reflink idref="bib53" id="ref57">53</reflink>] ). A workshop, sponsored by the US National Institutes of Health, has also been recently dedicated to SUDEP (Hirsch et al. [<reflink idref="bib15" id="ref58">15</reflink>] ). The new updated NICE guidelines on the management of epilepsy emphasise on offering adequate consultation time for people with ID and a non‐discriminatory approach when managing epilepsy in this vulnerable population group (Nunes et al. [<reflink idref="bib45" id="ref59">45</reflink>] ). Raising awareness of SUDEP (Nashef et al. [<reflink idref="bib36" id="ref60">36</reflink>] ), providing accessible information (http://<ulink href="http://www.sudep.org">www.sudep.org</ulink> and http://www.sudepaware.org), close monitoring and supervision by carers and families (Nashef et al. [<reflink idref="bib35" id="ref61">35</reflink>] ), a multidisciplinary/multiagency approach (Kerr & Bowley [<reflink idref="bib20" id="ref62">20</reflink>] ), involvement of an epilepsy nurse specialist (Barr [<reflink idref="bib4" id="ref63">4</reflink>] ), development of a health action plan (Department of Health [<reflink idref="bib9" id="ref64">9</reflink>] ), actively treating severe seizures (Ryvlin et al. [<reflink idref="bib50" id="ref65">50</reflink>] ) and early referral to tertiary services (Pedley & Hauser [<reflink idref="bib46" id="ref66">46</reflink>] ) are among the most important strategies for improving epilepsy service provision.</p> <hd id="AN0095829709-17">Conclusion</hd> <p>In brief, our research revealed an extremely high rate of mortality from SUDEP in people with ID. At the same time there was poor record keeping on circumstances leading up to death or support offered to families/carers. As a result an epilepsy care pathway and local clinical guideline based on updated NICE guidelines have been developed by the Leicestershire Partnership NHS Trust to help clinicians working in the ID and mental health services to improve epilepsy management in this population. The service has developed an accessible information leaflet on epilepsy and SUDEP (available on the website of the Royal College of Psychiatrists: <ulink href="http://www.rcpsych.ac.uk/pdf/Epilepsy%20ld%20final.pdf">http://www.rcpsych.ac.uk/pdf/Epilepsy%20ld%20final.pdf</ulink>). It is hoped that with the help of the above strategies, services can work in a coordinated manner to deliver holistic epilepsy care for people with ID.</p> <hd id="AN0095829709-18">Acknowledgements</hd> <p>We are grateful to Andrew Leaver, researcher at the Department of Health Sciences, University of Leicester for his constructive work on the manuscript. 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Bhaumik; S. Gangavati; G. Walker; S. Kazmi and M. Barrett</p> </aug>
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  Group: Ti
  Data: Mortality from Sudden Unexpected Death in Epilepsy (SUDEP) in a Cohort of Adults with Intellectual Disability
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  Data: English
– Name: Author
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  Data: <searchLink fieldCode="AR" term="%22Kiani%2C+R%2E%22">Kiani, R.</searchLink><br /><searchLink fieldCode="AR" term="%22Tyrer%2C+F%2E%22">Tyrer, F.</searchLink><br /><searchLink fieldCode="AR" term="%22Jesu%2C+A%2E%22">Jesu, A.</searchLink><br /><searchLink fieldCode="AR" term="%22Bhaumik%2C+S%2E%22">Bhaumik, S.</searchLink><br /><searchLink fieldCode="AR" term="%22Gangavati%2C+S%2E%22">Gangavati, S.</searchLink><br /><searchLink fieldCode="AR" term="%22Walker%2C+G%2E%22">Walker, G.</searchLink><br /><searchLink fieldCode="AR" term="%22Kazmi%2C+S%2E%22">Kazmi, S.</searchLink><br /><searchLink fieldCode="AR" term="%22Barrett%2C+M%2E%22">Barrett, M.</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Intellectual+Disability+Research%22"><i>Journal of Intellectual Disability Research</i></searchLink>. Jun 2014 58(6):508-520.
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  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
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  Label: Page Count
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  Data: 13
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  Label: Publication Date
  Group: Date
  Data: 2014
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  Data: Journal Articles<br />Reports - Research
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  Label: Descriptors
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  Data: <searchLink fieldCode="DE" term="%22Death%22">Death</searchLink><br /><searchLink fieldCode="DE" term="%22Seizures%22">Seizures</searchLink><br /><searchLink fieldCode="DE" term="%22Epilepsy%22">Epilepsy</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22At+Risk+Persons%22">At Risk Persons</searchLink><br /><searchLink fieldCode="DE" term="%22Mortality+Rate%22">Mortality Rate</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Databases%22">Databases</searchLink><br /><searchLink fieldCode="DE" term="%22Incidence%22">Incidence</searchLink><br /><searchLink fieldCode="DE" term="%22Gender+Differences%22">Gender Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Risk+Management%22">Risk Management</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22United+Kingdom%22">United Kingdom</searchLink><br /><searchLink fieldCode="DE" term="%22United+Kingdom+%28Leicester%29%22">United Kingdom (Leicester)</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1111/jir.12047
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 0964-2633
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: People with intellectual disability (ID) and epilepsy are more likely to die prematurely than the general population. A significant number of deaths in people with epilepsy may be potentially preventable through better seizure control, regular monitoring and raising awareness among patients and carers. The aim of this project was to study mortality from sudden unexpected death in epilepsy (SUDEP) in adults with ID. Methods: All adults (=20 years old) living in Leicester city, Leicestershire and Rutland, UK, with ID between 1993 and 2010 were identified using the Leicestershire Intellectual Disability Register database. People with and without ID who died during the same period were identified using death certificate data from the Office for National Statistics (ONS). Deaths from probable and definite SUDEP were identified. Additional information on adults with ID who had died from probable or definite SUDEP was obtained from case notes and post-mortem reports, where available. Cases of probable and definite SUDEP in adults with ID were compared with the general population using standardised mortality ratios (SMRs). Results: A total of 898 adults with ID had died over the 18-year study period. Of these, 244 deaths (27%) occurred in people with ID who had a diagnosis of epilepsy. Twenty-six people with ID died from probable or definite SUDEP, which was the second most common cause of death among adults with ID and epilepsy. All-cause specific SMRs were 2.2 [95% confidence interval (CI): 2.0-2.4] and 2.8 (95% CI: 2.5-3.1) for men and women with ID respectively. SMRs were 3.2 (95% CI: 2.7-3.8) and 5.6 (95% CI: 4.6-6.7) for men and women with epilepsy and ID respectively. During the same study period, 83 adults without ID had died of probable or definite SUDEP. The SMRs for SUDEP in patients with ID were 37.6 for men (95% CI: 21.9-60.2) and 52.0 for women (95% CI: 23.8-98.8). We found that in the majority of ID cases there was little detailed documentation on the circumstances surrounding deaths, no communication with patients/carers about risk of SUDEP and an absence of post-mortem reports or carers' referral for bereavement counselling. Conclusion: The authors believe that a comprehensive risk management under a multiagency/multidisciplinary framework should be undertaken for all adults with ID and epilepsy in day-to-day clinical practice to reduce mortality in people with ID.
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  Data: 2014
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  Data: EJ1024896
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        Value: 10.1111/jir.12047
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      – Text: English
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        PageCount: 13
        StartPage: 508
    Subjects:
      – SubjectFull: Death
        Type: general
      – SubjectFull: Seizures
        Type: general
      – SubjectFull: Epilepsy
        Type: general
      – SubjectFull: Mental Retardation
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      – SubjectFull: At Risk Persons
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      – SubjectFull: United Kingdom
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      – SubjectFull: United Kingdom (Leicester)
        Type: general
    Titles:
      – TitleFull: Mortality from Sudden Unexpected Death in Epilepsy (SUDEP) in a Cohort of Adults with Intellectual Disability
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          Dates:
            – D: 01
              M: 06
              Type: published
              Y: 2014
          Identifiers:
            – Type: issn-print
              Value: 0964-2633
          Numbering:
            – Type: volume
              Value: 58
            – Type: issue
              Value: 6
          Titles:
            – TitleFull: Journal of Intellectual Disability Research
              Type: main
ResultId 1