No Cover Image

Journal article 520 views 83 downloads

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

  • 60166.pdf

    PDF | Version of Record

    © 2022 The Authors. This is an open access article under the CC BY license

    Download (758.92KB)

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...

Full description

Published in: Seizure
ISSN: 1059-1311
Published: Elsevier BV 2022
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa60166
Tags: Add Tag
No Tags, Be the first to tag this record!
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 (01/01/1987–31/10/2018) 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.
Item Description: 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.
Keywords: Read Code; Healthcare resource utilization; Dravet syndrome; Antiseizure medication; Clinical Practice Research Datalink; Prevalence
College: Faculty of Medicine, Health and Life Sciences
Funders: This study was funded by GW Pharmaceuticals, now part of Jazz Pharmaceuticals.
Start Page: 159
End Page: 163