Evidence map›Paper›PMID 40713046›Full record

ArticleBMJ open2025

The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocol.

Darin Elabbasy, Silvia Evers, Marian H J M Majoie, Olaf E M G Schijns, Laura M'Rabet, Vivianne H J M van Kranen-Mastenbroek, Daniëlle B P Eekers, Ruud Houben, Marc Hendriks, Albert Colon and 1 more

Abstract read
In one paragraph

Article in BMJ open, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Trial
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Darin ElabbasyDepartment of Health Services Research, Maastricht University Care and Public Health Research Institute, Maastricht, Limburg, The Netherlands darin.elabbasy@maastrichtuniversity.nl.ORCID http://orcid.org/0000-0003-0448-6477
Silvia EversDepartment of Health Services Research, Maastricht University Care and Public Health Research Institute, Maastricht, Limburg, The Netherlands.
Marian H J M MajoieDepartment of Neurology, Mental Health and Neuroscience Research Institute, Maastricht, Limburg, The Netherlands.
Olaf E M G SchijnsAcademic Center for Epileptology, Maastricht University Medical Center and Kempenhaeghe, Heeze and Maastricht, The Netherlands.
Laura M'RabetMT Member Knowledge and Innovation, EpilepsieNL, Utrecht, The Netherlands.
Vivianne H J M van Kranen-MastenbroekAcademic Center for Epileptology, Maastricht University Medical Center and Kempenhaeghe, Heeze and Maastricht, The Netherlands.
Daniëlle B P EekersDepartment of Radiation Oncology (Maastro), GROW School for Oncology and Reproduction, Maastricht University Medical Centre+, Maastricht, Limburg, The Netherlands.
Ruud HoubenDepartment of Radiation Oncology (Maastro), GROW School for Oncology and Reproduction, Maastricht University Medical Centre+, Maastricht, Limburg, The Netherlands.
Marc HendriksAcademic Center for Epileptology, Maastricht University Medical Center and Kempenhaeghe, Heeze and Maastricht, The Netherlands.
Albert ColonAcademic Center for Epileptology, Maastricht University Medical Center and Kempenhaeghe, Heeze and Maastricht, The Netherlands.
Ghislaine A P G van MastrigtDepartment of Health Services Research, Maastricht University Care and Public Health Research Institute, Maastricht, Limburg, The Netherlands.ORCID http://orcid.org/0000-0001-8053-5512

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundLiving with epilepsy, especially drug-resistant epilepsy (DRE), imposes several challenges for people diagnosed with the condition. These challenges include the physical and mental implications of epilepsy on both caregivers and patients with epilepsy. For the more than 120 000 individuals living with this neurological disorder in the Netherlands, along with their families, daily activities become hazardous, limited and costly, significantly affecting their health-related quality of life (HRQoL). As data on the burden of epilepsy in the Netherlands are lacking, studies attempting to capture the impact of epilepsy on individuals, caregivers and society are needed to enhance understanding and help address the burden of epileptic seizures. METHODS AND ANALYSIS: The study is part of the AIM@EPILEPSY project. The project aims to develop a planning suite enabling cost-saving, minimally invasive treatment for epilepsy. By surveying 330 people with epilepsy and an anticipated sample of 150-200 informal caregivers across the Netherlands, using standardised questionnaires focusing on associated societal costs and the impact on HRQoL, this bottom-up, prevalence-based prospective study aims to understand the societal burden of DRE in the Netherlands. The data will be collected at 0, 3, 6 and 12 months of follow-up. The study results will describe the economic impact of epilepsy, focusing on cost-of-illness (€) and HRQoL (utilities) in the Netherlands. ETHICS AND DISSEMINATION : The proposed study was approved by the Maastricht University Medical Ethics Review Committee (Approval reference: FHML-REC/2024/067/Amendment/2024_16). The result of the study is planned to be published in a peer-reviewed journal and presented at international and local scientific conferences.

Indexed as

CaregiversCost of IllnessDrug Resistant EpilepsyQuality of LifeFemaleHumansNetherlandsProspective StudiesResearch DesignSurveys and QuestionnairesCaregiver BurdenEpilepsyHealth Care CostsQuality of Life

Identifiers

PMID40713046
PMCPMC12306250

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.