Exploring the prevalence and profile of epilepsy across Europe using a standard retrospective chart review: Challenges and opportunities

Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt

Dokumenter

  • Fulltext

    Forlagets udgivne version, 805 KB, PDF-dokument

  • Christine Linehan
  • Ailbhe Benson
  • Alex Gunko
  • Jakob Christensen
  • Yuelian Sun
  • Torbjorn Tomson
  • Anthony Marson
  • Lars Forsgren
  • Eugen Trinka
  • Catrinel Iliescu
  • Julie Althoehn Sonderup
  • Julie Werenberg Dreier
  • Carmen Sandu
  • Madalina Leanca
  • Lucas Rainer
  • Teia Kobulashvili
  • Claudia A. Granbichler
  • Norman Delanty
  • Colin Doherty
  • Anthony Staines
  • Amre Shahwan
  • Gus Baker
  • Eve Bolger
  • Jennum, Poul
  • Catrinel Ilescu
  • Christine Linehan
  • Kristina Malmgren
  • Anthony Marson
  • Jakob Kjellberg
  • Michael Kerr
  • Athanasios Covanis
  • Francisco Sales
  • Ruta Mameniskiene
  • Mattias Ekman
  • Ryvlin, Philippe
  • Marie Normark Holmgaard
  • Claudia Granbichler
  • ESBACE Consortium and Collaborators

Objective: This study aimed to determine the prevalence of epilepsy in four European countries (Austria, Denmark, Ireland, and Romania) employing a standard methodology. The study was conducted under the auspices of ESBACE (European Study on the Burden and Care of Epilepsy). Methods: All hospitals and general practitioners serving a region of at least 50 000 persons in each country were asked to identify patients living in the region who had a diagnosis of epilepsy or experienced a single unprovoked seizure. Medical records were accessed, where available, to complete a standardized case report form. Data were sought on seizure frequency, seizure type, investigations, etiology, comorbidities, and use of antiseizure medication. Cases were validated in each country, and the degree of certainty was graded as definite, probable, or suspect cases. Results: From a total population of 237 757 in the four countries, 1988 (.8%) patients were identified as potential cases of epilepsy. Due to legal and ethical issues in the individual countries, medical records were available for only 1208 patients, and among these, 113 had insufficient clinical information. The remaining 1095 cases were classified as either definite (n = 706, 64.5%), probable (n = 191, 17.4%), suspect (n = 153, 14.0%), or not epilepsy (n = 45, 4.1%). Significance: Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in epidemiological research.

OriginalsprogEngelsk
TidsskriftEpilepsia
Vol/bind62
Udgave nummer11
Sider (fra-til)2651-2666
Antal sider16
ISSN0013-9580
DOI
StatusUdgivet - 2021

Bibliografisk note

Funding Information:
E.T. reports personal fees from EVER Pharma, Marinus, Argenix, Arvelle, Medtronic, Bial–Portela & Cª, NewBridge, GL Pharma, GlaxoSmithKline, Hikma, Boehringer Ingelheim, LivaNova, Eisai, UCB, Biogen, Genzyme Sanofi, GW Pharmaceuticals, and Actavis outside the submitted work; his institution has received grants from Biogen, UCB Pharma, Eisai, Red Bull, Merck, Bayer, the European Union, FWF Osterreichischer Fond zur Wissenschaftsforderung, Bundesministerium für Wissenschaft und Forschung, and Jubilaumsfond der Österreichischen Nationalbank outside the submitted work. J.C. reports honoraria from serving on the scientific advisory board of UCB Nordic and Eisai, has received honoraria for giving lectures from UCB Nordic and Eisai, and has received funding for a trip from UCB Nordic. A.M. reports a research grant from UCB Pharma paid to University of Liverpool. T.T. reports grants from Eisai, GSK, UCB, Bial, Stockholm County Council, and CURE and personal fees from Eisai, Sanofi, Sun Pharma, and UCB outside the submitted work. None of the other authors has any conflict of interest to disclose. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Funding Information:
This project received funding from the European Union's SANTE C-Public Health Directorate General for Health and Food Safety under grant agreement 2014//199564. We would like to acknowledge the support of all of the participants and health professionals who contributed to this study, in particular Albu Gabriela, Alexiu Sandra Adalgiza, Barbat Adriana, Cotae Greta Silvia, Crisan Florina, Gutiu Anton, Iliuta Aurelia, Matei Cristina, Matei Marcela, Stefanescu Daniela, Strajean Silvia, Tanase Liana Elena, and Vlad Viorel Mihai.

Publisher Copyright:
© 2021 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy

ID: 301462771