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dc.contributor.authorSun, JJen
dc.contributor.authorPerera, Ben
dc.contributor.authorHenley, Wen
dc.contributor.authorAshby, Sen
dc.contributor.authorShankar, Ren
dc.date.accessioned2021-05-22T19:24:04Z
dc.date.issued2020-08en
dc.identifier.urihttp://hdl.handle.net/10026.1/17182
dc.description.abstract

PURPOSE: This study identifies epilepsy-related characteristics and SUDEP risk factors in people with epilepsy (PWE) attending an urban community ID service in the UK where managing epilepsy is not part of the service remit, to understand the care provided to this vulnerable population. METHODS: An electronic database search in a north London community ID service (catchment population approx. 290,000) identified relevant ID/epilepsy characteristics in PWE to compare those with mild ID to moderate-profound ID. The SUDEP and Seizure Safety Checklist ("Checklist"), was administered to patients and families/carers. Risk management data was compared to similar data from Cornwall UK where PWE are supported within the ID service and the Checklist is used annually. RESULTS: One fifth (137/697) of people attending the service had epilepsy. Over 3/4 had moderate-profound ID. Neurodevelopmental disorders were coexistent in 2/3, psychiatric conditions in 1/3 (1/4 of which was psychosis). The mean number of anti-seizure drugs was 1.45 ± 0.98, and 1/4 were taking psychotropic medications. Over a third did not have an epilepsy care plan. None contacted (n = 103) had SUDEP awareness. The median number of Checklist risk factors was seven (IQR 4.5-9). A third had experienced seizures lasting >5 min or status epilepticus. In comparison to the Cornish ID data significant differences were evident in four of seven modifiable risk factors. CONCLUSIONS: This real world study highlights the complexity and risks among PWE and ID. The lack of a "joined up" approach can undermine the safety of this vulnerable population. Person-centred risk communication and care plans are easily achievable and essential.

en
dc.format.extent18 - 23en
dc.languageengen
dc.language.isoengen
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 Internationalen
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 Internationalen
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/en
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/en
dc.subjectCommunicationen
dc.subjectIntellectual disabilityen
dc.subjectNeurodevelopmenten
dc.subjectSUDEPen
dc.subjectSeizure characteristicsen
dc.subjectSeizure safety & SUDEP checklisten
dc.subjectService deliveryen
dc.subjectDeath, Suddenen
dc.subjectHumansen
dc.subjectIntellectual Disabilityen
dc.subjectRisk Factorsen
dc.subjectSeizuresen
dc.subjectSudden Unexpected Death in Epilepsyen
dc.subjectUnited Kingdomen
dc.titleSeizure and Sudden Unexpected Death in Epilepsy (SUDEP) characteristics in an urban UK intellectual disability service.en
dc.typeJournal Article
plymouth.author-urlhttps://www.ncbi.nlm.nih.gov/pubmed/32485614en
plymouth.volume80en
plymouth.publication-statusPublisheden
plymouth.journalSeizureen
dc.identifier.doi10.1016/j.seizure.2020.05.004en
plymouth.organisational-group/Plymouth
plymouth.organisational-group/Plymouth/Faculty of Health
plymouth.organisational-group/Plymouth/Faculty of Health/Peninsula Medical School
plymouth.organisational-group/Plymouth/Users by role
plymouth.organisational-group/Plymouth/Users by role/Professional Services staff
dc.publisher.placeEnglanden
dcterms.dateAccepted2020-05-04en
dc.rights.embargodate9999-12-31en
dc.identifier.eissn1532-2688en
dc.rights.embargoperiodNot knownen
rioxxterms.versionofrecord10.1016/j.seizure.2020.05.004en
rioxxterms.licenseref.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/en
rioxxterms.licenseref.startdate2020-08en
rioxxterms.typeJournal Article/Reviewen


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