TY - JOUR

T1 - Exploring the prevalence and profile of epilepsy across Europe using a standard retrospective chart review

T2 - Challenges and opportunities

AU - Linehan, Christine

AU - Benson, Ailbhe

AU - Gunko, Alex

AU - Christensen, Jakob

AU - Sun, Yuelian

AU - Tomson, Torbjorn

AU - Marson, Anthony

AU - Forsgren, Lars

AU - Trinka, Eugen

AU - Iliescu, Catrinel

AU - Althoehn Sonderup, Julie

AU - Dreier, Julie Werenberg

AU - Sandu, Carmen

AU - Leanca, Madalina

AU - Rainer, Lucas

AU - Kobulashvili, Teia

AU - Granbichler, Claudia A.

AU - Delanty, Norman

AU - Doherty, Colin

AU - Staines, Anthony

AU - Shahwan, Amre

AU - Baker, Gus

AU - Bolger, Eve

AU - Jennum, Poul Jorgen

AU - Ilescu, Catrinel

AU - Linehan, Christine

AU - Malmgren, Kristina

AU - Marson, Anthony

AU - Kjellberg, Jakob

AU - Kerr, Michael

AU - Covanis, Athanasios

AU - Sales, Francisco

AU - Mameniskiene, Ruta

AU - Ekman, Mattias

AU - Ryvlin, Philippe

AU - Holmgaard, Marie Normark

AU - Granbichler, Claudia

AU - ESBACE Consortium and Collaborators

N1 - Publisher Copyright: © 2021 The Authors. Epilepsia published by Wiley Periodicals LLC on behalf of International League Against Epilepsy

PY - 2021

Y1 - 2021

N2 - 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.

AB - 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.

KW - burden of disease

KW - data protection

KW - epidemiology

KW - GDPR

KW - general data protection regulation

KW - medical records

U2 - 10.1111/epi.17057

DO - 10.1111/epi.17057

M3 - Journal article

C2 - 34472627

AN - SCOPUS:85118551178

VL - 62

SP - 2651

EP - 2666

JO - Epilepsia

JF - Epilepsia

SN - 0013-9580

IS - 11

ER -