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Prevalence and healthcare resource utilization of patients with Dravet syndrome: Retrospective linkage cohort study

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

Seizure, Volume: 99, Pages: 159 - 163

Swansea University Author: Owen Pickrell Orcid Logo

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DOI (Published version): 10.1016/j.seizure.2022.05.018

Abstract

PurposePrevalence, demography, antiseizure medication (ASM) usage, healthcare resource utilization (HCRU), and mortality of Dravet syndrome (DS) in the UK were investigated using primary and secondary care data in this retrospective cohort study.MethodsPatients with confirmed DS were anonymously ide...

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Published in: Seizure
ISSN: 1059-1311
Published: Elsevier BV 2022
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URI: https://cronfa.swan.ac.uk/Record/cronfa60166
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fullrecord <?xml version="1.0"?><rfc1807><datestamp>2022-09-07T12:27:37.6576727</datestamp><bib-version>v2</bib-version><id>60166</id><entry>2022-06-08</entry><title>Prevalence and healthcare resource utilization of patients with Dravet 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>2022-06-08</date><deptcode>FGMHL</deptcode><abstract>PurposePrevalence, demography, antiseizure medication (ASM) usage, healthcare resource utilization (HCRU), and mortality of Dravet syndrome (DS) in the UK were investigated using primary and secondary care data in this retrospective cohort study.MethodsPatients with confirmed DS were anonymously identified from the UK Clinical Practice Research Datalink (CPRD) GOLD database (01/01/1987&#x2013;31/10/2018) using the DS Read Codes (F25G.11 or F25G.00). Probable DS was identified using the International Classification of Diseases-10/Read Code for epilepsy plus stiripentol or potassium bromide prescription. CPRD data were linked to the Hospital Episode Statistics database and Office for National Statistics to calculate HCRU and mortality.ResultsThe prevalence of confirmed (n = 32; 1.1/100,000) and probable (n = 22; 0.6/100,000) DS in 2017 was 1.5/100,000. Most patients with DS (confirmed, n = 22/28; probable, n = 8/14) were aged &lt;18 years in 2017. Mean (standard deviation) ASM usage was 5.5 (2.7) in confirmed DS and 7.6 (3.8) in probable DS, over 3.4 (3.5) years and 10.0 (6.2) years of follow-up, respectively. HCRU (per patient-year) was similarly high in patients with confirmed and probable DS; mainly consisting of general practitioner consultations (mean, 4.8&#x2013;7.9), outpatient visits (5.6&#x2013;8.3), hospital admissions (0.9&#x2013;4), and emergency department visits (0.3&#x2013;2.3). Fewer than five deaths were recorded in patients with confirmed and probable DS.ConclusionUsing linked national healthcare databases, our study showed that the UK prevalence of DS recorded in primary care was low, and most cases were in patients aged &lt;18 years. HCRU and ASM usage were similarly high in confirmed or probable DS.</abstract><type>Journal Article</type><journal>Seizure</journal><volume>99</volume><journalNumber/><paginationStart>159</paginationStart><paginationEnd>163</paginationEnd><publisher>Elsevier BV</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint>1059-1311</issnPrint><issnElectronic/><keywords>Read Code; Healthcare resource utilization; Dravet syndrome; Antiseizure medication; Clinical Practice Research Datalink; Prevalence</keywords><publishedDay>1</publishedDay><publishedMonth>7</publishedMonth><publishedYear>2022</publishedYear><publishedDate>2022-07-01</publishedDate><doi>10.1016/j.seizure.2022.05.018</doi><url/><notes>Data were obtained from CPRD after going through their process for obtaining access, which includes ethics approval. The data were analyzed by Syneos on behalf of GW Pharmaceuticals, now part of JazzPharmaceuticals, Inc., to answer this particular research question. While the same data cut could be obtained from CPRD, the current data are confidential.</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>SU Library paid the OA fee (TA Institutional Deal)</apcterm><funders>This study was funded by GW Pharmaceuticals, now part of Jazz Pharmaceuticals.</funders><projectreference/><lastEdited>2022-09-07T12:27:37.6576727</lastEdited><Created>2022-06-08T16:16:10.3738997</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>Owen</firstname><surname>Pickrell</surname><orcid>0000-0003-4396-5657</orcid><order>1</order></author><author><firstname>Florent</firstname><surname>Guelfucci</surname><orcid>0000-0002-0586-6589</orcid><order>2</order></author><author><firstname>Monique</firstname><surname>Martin</surname><order>3</order></author><author><firstname>Rowena</firstname><surname>Holland</surname><orcid>0000-0003-2969-4141</orcid><order>4</order></author><author><firstname>Richard F.M.</firstname><surname>Chin</surname><orcid>0000-0002-7256-3027</orcid><order>5</order></author></authors><documents><document><filename>60166__24258__850169f7aa9c450f8874fb81f40c80ca.pdf</filename><originalFilename>60166.pdf</originalFilename><uploaded>2022-06-08T16:21:12.5588386</uploaded><type>Output</type><contentLength>777138</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>&#xA9; 2022 The Authors. 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spelling 2022-09-07T12:27:37.6576727 v2 60166 2022-06-08 Prevalence and healthcare resource utilization of patients with Dravet syndrome: Retrospective linkage cohort study 1c3044b5ff7a6552ff5e8c9e3901c807 0000-0003-4396-5657 Owen Pickrell Owen Pickrell true false 2022-06-08 FGMHL PurposePrevalence, demography, antiseizure medication (ASM) usage, healthcare resource utilization (HCRU), and mortality of Dravet syndrome (DS) in the UK were investigated using primary and secondary care data in this retrospective cohort study.MethodsPatients with confirmed DS were anonymously identified from the UK Clinical Practice Research Datalink (CPRD) GOLD database (01/01/1987–31/10/2018) using the DS Read Codes (F25G.11 or F25G.00). Probable DS was identified using the International Classification of Diseases-10/Read Code for epilepsy plus stiripentol or potassium bromide prescription. CPRD data were linked to the Hospital Episode Statistics database and Office for National Statistics to calculate HCRU and mortality.ResultsThe prevalence of confirmed (n = 32; 1.1/100,000) and probable (n = 22; 0.6/100,000) DS in 2017 was 1.5/100,000. Most patients with DS (confirmed, n = 22/28; probable, n = 8/14) were aged <18 years in 2017. Mean (standard deviation) ASM usage was 5.5 (2.7) in confirmed DS and 7.6 (3.8) in probable DS, over 3.4 (3.5) years and 10.0 (6.2) years of follow-up, respectively. HCRU (per patient-year) was similarly high in patients with confirmed and probable DS; mainly consisting of general practitioner consultations (mean, 4.8–7.9), outpatient visits (5.6–8.3), hospital admissions (0.9–4), and emergency department visits (0.3–2.3). Fewer than five deaths were recorded in patients with confirmed and probable DS.ConclusionUsing linked national healthcare databases, our study showed that the UK prevalence of DS recorded in primary care was low, and most cases were in patients aged <18 years. HCRU and ASM usage were similarly high in confirmed or probable DS. Journal Article Seizure 99 159 163 Elsevier BV 1059-1311 Read Code; Healthcare resource utilization; Dravet syndrome; Antiseizure medication; Clinical Practice Research Datalink; Prevalence 1 7 2022 2022-07-01 10.1016/j.seizure.2022.05.018 Data were obtained from CPRD after going through their process for obtaining access, which includes ethics approval. The data were analyzed by Syneos on behalf of GW Pharmaceuticals, now part of JazzPharmaceuticals, Inc., to answer this particular research question. While the same data cut could be obtained from CPRD, the current data are confidential. COLLEGE NANME Medicine, Health and Life Science - Faculty COLLEGE CODE FGMHL Swansea University SU Library paid the OA fee (TA Institutional Deal) This study was funded by GW Pharmaceuticals, now part of Jazz Pharmaceuticals. 2022-09-07T12:27:37.6576727 2022-06-08T16:16:10.3738997 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine Owen Pickrell 0000-0003-4396-5657 1 Florent Guelfucci 0000-0002-0586-6589 2 Monique Martin 3 Rowena Holland 0000-0003-2969-4141 4 Richard F.M. Chin 0000-0002-7256-3027 5 60166__24258__850169f7aa9c450f8874fb81f40c80ca.pdf 60166.pdf 2022-06-08T16:21:12.5588386 Output 777138 application/pdf Version of Record true © 2022 The Authors. This is an open access article under the CC BY license true eng https://creativecommons.org/licenses/by/4.0/
title Prevalence and healthcare resource utilization of patients with Dravet syndrome: Retrospective linkage cohort study
spellingShingle Prevalence and healthcare resource utilization of patients with Dravet syndrome: Retrospective linkage cohort study
Owen Pickrell
title_short Prevalence and healthcare resource utilization of patients with Dravet syndrome: Retrospective linkage cohort study
title_full Prevalence and healthcare resource utilization of patients with Dravet syndrome: Retrospective linkage cohort study
title_fullStr Prevalence and healthcare resource utilization of patients with Dravet syndrome: Retrospective linkage cohort study
title_full_unstemmed Prevalence and healthcare resource utilization of patients with Dravet syndrome: Retrospective linkage cohort study
title_sort Prevalence and healthcare resource utilization of patients with Dravet syndrome: Retrospective linkage cohort study
author_id_str_mv 1c3044b5ff7a6552ff5e8c9e3901c807
author_id_fullname_str_mv 1c3044b5ff7a6552ff5e8c9e3901c807_***_Owen Pickrell
author Owen Pickrell
author2 Owen Pickrell
Florent Guelfucci
Monique Martin
Rowena Holland
Richard F.M. Chin
format Journal article
container_title Seizure
container_volume 99
container_start_page 159
publishDate 2022
institution Swansea University
issn 1059-1311
doi_str_mv 10.1016/j.seizure.2022.05.018
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
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description PurposePrevalence, demography, antiseizure medication (ASM) usage, healthcare resource utilization (HCRU), and mortality of Dravet syndrome (DS) in the UK were investigated using primary and secondary care data in this retrospective cohort study.MethodsPatients with confirmed DS were anonymously identified from the UK Clinical Practice Research Datalink (CPRD) GOLD database (01/01/1987–31/10/2018) using the DS Read Codes (F25G.11 or F25G.00). Probable DS was identified using the International Classification of Diseases-10/Read Code for epilepsy plus stiripentol or potassium bromide prescription. CPRD data were linked to the Hospital Episode Statistics database and Office for National Statistics to calculate HCRU and mortality.ResultsThe prevalence of confirmed (n = 32; 1.1/100,000) and probable (n = 22; 0.6/100,000) DS in 2017 was 1.5/100,000. Most patients with DS (confirmed, n = 22/28; probable, n = 8/14) were aged <18 years in 2017. Mean (standard deviation) ASM usage was 5.5 (2.7) in confirmed DS and 7.6 (3.8) in probable DS, over 3.4 (3.5) years and 10.0 (6.2) years of follow-up, respectively. HCRU (per patient-year) was similarly high in patients with confirmed and probable DS; mainly consisting of general practitioner consultations (mean, 4.8–7.9), outpatient visits (5.6–8.3), hospital admissions (0.9–4), and emergency department visits (0.3–2.3). Fewer than five deaths were recorded in patients with confirmed and probable DS.ConclusionUsing linked national healthcare databases, our study showed that the UK prevalence of DS recorded in primary care was low, and most cases were in patients aged <18 years. HCRU and ASM usage were similarly high in confirmed or probable DS.
published_date 2022-07-01T04:18:03Z
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