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Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study

Richard F.M. Chin, Owen Pickrell Orcid Logo, Florent Guelfucci, Monique Martin, Rowena Holland

Seizure, Volume: 91, Pages: 159 - 166

Swansea University Author: Owen Pickrell Orcid Logo

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DOI (Published version): 10.1016/j.seizure.2021.05.025

Abstract

Purpose: To retrospectively investigate the prevalence, demography, antiseizure medication (ASM) usage, healthcare resource utilization (HCRU), and mortality of patients with Lennox-Gastaut syndrome (LGS) in primary and secondary care in the UK.Methods: Patients with confirmed LGS were anonymously i...

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Published in: Seizure
ISSN: 1059-1311
Published: Elsevier BV 2021
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fullrecord <?xml version="1.0"?><rfc1807><datestamp>2021-07-14T16:17:31.9566382</datestamp><bib-version>v2</bib-version><id>57199</id><entry>2021-06-24</entry><title>Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study</title><swanseaauthors><author><sid>1c3044b5ff7a6552ff5e8c9e3901c807</sid><ORCID>0000-0003-4396-5657</ORCID><firstname>Owen</firstname><surname>Pickrell</surname><name>Owen Pickrell</name><active>true</active><ethesisStudent>false</ethesisStudent></author></swanseaauthors><date>2021-06-24</date><deptcode>FGMHL</deptcode><abstract>Purpose: To retrospectively investigate the prevalence, demography, antiseizure medication (ASM) usage, healthcare resource utilization (HCRU), and mortality of patients with Lennox-Gastaut syndrome (LGS) in primary and secondary care in the UK.Methods: Patients with confirmed LGS were anonymously identified from the UK Clinical Practice Research Datalink (CPRD) GOLD database (01/01/1987&#x2013;31/10/2018) using the LGS Read Code (F250500). Probable LGS was identified using the International Classification of Diseases-10/Read Code for epilepsy (Hospital Episode Statistics [HES]/CPRD) plus rufinamide prescription. Period prevalence was calculated based on patients enrolled in CPRD GOLD and alive in 2017. CPRD data were linked to HES to calculate HCRU, and to the Office for National Statistics mortality registry.Results: Period prevalence of LGS was 0.578/10,000 (n = 180), with 74 and 106 patients identified with confirmed (0.289/10,000) and probable LGS (0.420/10,000). Mean (max) ASM usage was ~1 (3) per year. In confirmed LGS, valproate (72%), lamotrigine (69%), and clobazam (66%) were the most commonly prescribed ASMs. HCRU (per patient-year) was similar in confirmed and probable LGS and mostly consisted of primary care general practitioner consultations (4&#x2013;6), outpatient visits (5&#x2013;10), inpatient admissions (1&#x2013;4), and A&amp;E visits (1). During the follow-up period, 18 patients died with crude mortality rates of 6.12 (confirmed LGS) and 4.17 (probable LGS) deaths per 1000 person-years.Conclusion: Prevalence of LGS appears low in the UK. The similarly high HCRU and mortality rates in confirmed and probable LGS support the validity and specificity of the probable LGS algorithm and high burden of LGS.</abstract><type>Journal Article</type><journal>Seizure</journal><volume>91</volume><journalNumber/><paginationStart>159</paginationStart><paginationEnd>166</paginationEnd><publisher>Elsevier BV</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint>1059-1311</issnPrint><issnElectronic/><keywords>Read Code; Healthcare resource utilization; Lennox-Gastaut syndrome; Antiseizure medication; Clinical Practice Research Datalink; Prevalence</keywords><publishedDay>1</publishedDay><publishedMonth>10</publishedMonth><publishedYear>2021</publishedYear><publishedDate>2021-10-01</publishedDate><doi>10.1016/j.seizure.2021.05.025</doi><url/><notes/><college>COLLEGE NANME</college><department>Medicine, Health and Life Science - Faculty</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>FGMHL</DepartmentCode><institution>Swansea University</institution><apcterm>Other</apcterm><lastEdited>2021-07-14T16:17:31.9566382</lastEdited><Created>2021-06-24T10:20:13.3630963</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Medicine</level></path><authors><author><firstname>Richard F.M.</firstname><surname>Chin</surname><order>1</order></author><author><firstname>Owen</firstname><surname>Pickrell</surname><orcid>0000-0003-4396-5657</orcid><order>2</order></author><author><firstname>Florent</firstname><surname>Guelfucci</surname><order>3</order></author><author><firstname>Monique</firstname><surname>Martin</surname><order>4</order></author><author><firstname>Rowena</firstname><surname>Holland</surname><order>5</order></author></authors><documents><document><filename>57199__20401__bf5423a61a994857a337df941eb8c562.pdf</filename><originalFilename>57199.pdf</originalFilename><uploaded>2021-07-14T16:16:06.7240410</uploaded><type>Output</type><contentLength>1078445</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>&#xA9; 2021 The Authors. This is an open access article under the CC BY-NC-ND license</documentNotes><copyrightCorrect>true</copyrightCorrect><language>eng</language><licence>http://creativecommons.org/licenses/by-nc-nd/4.0/</licence></document></documents><OutputDurs/></rfc1807>
spelling 2021-07-14T16:17:31.9566382 v2 57199 2021-06-24 Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study 1c3044b5ff7a6552ff5e8c9e3901c807 0000-0003-4396-5657 Owen Pickrell Owen Pickrell true false 2021-06-24 FGMHL Purpose: To retrospectively investigate the prevalence, demography, antiseizure medication (ASM) usage, healthcare resource utilization (HCRU), and mortality of patients with Lennox-Gastaut syndrome (LGS) in primary and secondary care in the UK.Methods: Patients with confirmed LGS were anonymously identified from the UK Clinical Practice Research Datalink (CPRD) GOLD database (01/01/1987–31/10/2018) using the LGS Read Code (F250500). Probable LGS was identified using the International Classification of Diseases-10/Read Code for epilepsy (Hospital Episode Statistics [HES]/CPRD) plus rufinamide prescription. Period prevalence was calculated based on patients enrolled in CPRD GOLD and alive in 2017. CPRD data were linked to HES to calculate HCRU, and to the Office for National Statistics mortality registry.Results: Period prevalence of LGS was 0.578/10,000 (n = 180), with 74 and 106 patients identified with confirmed (0.289/10,000) and probable LGS (0.420/10,000). Mean (max) ASM usage was ~1 (3) per year. In confirmed LGS, valproate (72%), lamotrigine (69%), and clobazam (66%) were the most commonly prescribed ASMs. HCRU (per patient-year) was similar in confirmed and probable LGS and mostly consisted of primary care general practitioner consultations (4–6), outpatient visits (5–10), inpatient admissions (1–4), and A&E visits (1). During the follow-up period, 18 patients died with crude mortality rates of 6.12 (confirmed LGS) and 4.17 (probable LGS) deaths per 1000 person-years.Conclusion: Prevalence of LGS appears low in the UK. The similarly high HCRU and mortality rates in confirmed and probable LGS support the validity and specificity of the probable LGS algorithm and high burden of LGS. Journal Article Seizure 91 159 166 Elsevier BV 1059-1311 Read Code; Healthcare resource utilization; Lennox-Gastaut syndrome; Antiseizure medication; Clinical Practice Research Datalink; Prevalence 1 10 2021 2021-10-01 10.1016/j.seizure.2021.05.025 COLLEGE NANME Medicine, Health and Life Science - Faculty COLLEGE CODE FGMHL Swansea University Other 2021-07-14T16:17:31.9566382 2021-06-24T10:20:13.3630963 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine Richard F.M. Chin 1 Owen Pickrell 0000-0003-4396-5657 2 Florent Guelfucci 3 Monique Martin 4 Rowena Holland 5 57199__20401__bf5423a61a994857a337df941eb8c562.pdf 57199.pdf 2021-07-14T16:16:06.7240410 Output 1078445 application/pdf Version of Record true © 2021 The Authors. This is an open access article under the CC BY-NC-ND license true eng http://creativecommons.org/licenses/by-nc-nd/4.0/
title Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study
spellingShingle Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study
Owen Pickrell
title_short Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study
title_full Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study
title_fullStr Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study
title_full_unstemmed Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study
title_sort Prevalence, healthcare resource utilization and mortality of Lennox-Gastaut syndrome: retrospective linkage cohort study
author_id_str_mv 1c3044b5ff7a6552ff5e8c9e3901c807
author_id_fullname_str_mv 1c3044b5ff7a6552ff5e8c9e3901c807_***_Owen Pickrell
author Owen Pickrell
author2 Richard F.M. Chin
Owen Pickrell
Florent Guelfucci
Monique Martin
Rowena Holland
format Journal article
container_title Seizure
container_volume 91
container_start_page 159
publishDate 2021
institution Swansea University
issn 1059-1311
doi_str_mv 10.1016/j.seizure.2021.05.025
publisher Elsevier BV
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Medicine{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Medicine
document_store_str 1
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description Purpose: To retrospectively investigate the prevalence, demography, antiseizure medication (ASM) usage, healthcare resource utilization (HCRU), and mortality of patients with Lennox-Gastaut syndrome (LGS) in primary and secondary care in the UK.Methods: Patients with confirmed LGS were anonymously identified from the UK Clinical Practice Research Datalink (CPRD) GOLD database (01/01/1987–31/10/2018) using the LGS Read Code (F250500). Probable LGS was identified using the International Classification of Diseases-10/Read Code for epilepsy (Hospital Episode Statistics [HES]/CPRD) plus rufinamide prescription. Period prevalence was calculated based on patients enrolled in CPRD GOLD and alive in 2017. CPRD data were linked to HES to calculate HCRU, and to the Office for National Statistics mortality registry.Results: Period prevalence of LGS was 0.578/10,000 (n = 180), with 74 and 106 patients identified with confirmed (0.289/10,000) and probable LGS (0.420/10,000). Mean (max) ASM usage was ~1 (3) per year. In confirmed LGS, valproate (72%), lamotrigine (69%), and clobazam (66%) were the most commonly prescribed ASMs. HCRU (per patient-year) was similar in confirmed and probable LGS and mostly consisted of primary care general practitioner consultations (4–6), outpatient visits (5–10), inpatient admissions (1–4), and A&E visits (1). During the follow-up period, 18 patients died with crude mortality rates of 6.12 (confirmed LGS) and 4.17 (probable LGS) deaths per 1000 person-years.Conclusion: Prevalence of LGS appears low in the UK. The similarly high HCRU and mortality rates in confirmed and probable LGS support the validity and specificity of the probable LGS algorithm and high burden of LGS.
published_date 2021-10-01T04:12:45Z
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