The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocol
Background Living 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 individual...
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| Format: | Article |
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BMJ Publishing Group
2025-07-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/15/7/e095123.full |
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| author | Ruud Houben Ghislaine A P G van Mastrigt Albert Colon Silvia Evers Olaf E M G Schijns Marian H J M Majoie Darin Elabbasy Laura M’Rabet Vivianne H J M van Kranen-Mastenbroek Daniëlle B P Eekers Marc Hendriks |
| author_facet | Ruud Houben Ghislaine A P G van Mastrigt Albert Colon Silvia Evers Olaf E M G Schijns Marian H J M Majoie Darin Elabbasy Laura M’Rabet Vivianne H J M van Kranen-Mastenbroek Daniëlle B P Eekers Marc Hendriks |
| author_sort | Ruud Houben |
| collection | DOAJ |
| description | Background Living 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. |
| format | Article |
| id | doaj-art-13669ae1daf241ccb14e4f0048fb7e92 |
| institution | DOAJ |
| issn | 2044-6055 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-13669ae1daf241ccb14e4f0048fb7e922025-08-20T02:47:06ZengBMJ Publishing GroupBMJ Open2044-60552025-07-0115710.1136/bmjopen-2024-095123The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocolRuud Houben0Ghislaine A P G van Mastrigt1Albert Colon2Silvia Evers3Olaf E M G Schijns4Marian H J M Majoie5Darin Elabbasy6Laura M’Rabet7Vivianne H J M van Kranen-Mastenbroek8Daniëlle B P Eekers9Marc Hendriks10Department of Radiation Oncology (Maastro), GROW School for Oncology and Reproduction, Maastricht University Medical Centre+, Maastricht, Limburg, The NetherlandsDepartment of Health Services Research, Maastricht University Care and Public Health Research Institute, Maastricht, Limburg, The NetherlandsAcademic Center for Epileptology, Maastricht University Medical Center and Kempenhaeghe, Heeze and Maastricht, The NetherlandsDepartment of Health Services Research, Maastricht University Care and Public Health Research Institute, Maastricht, Limburg, The NetherlandsAcademic Center for Epileptology, Maastricht University Medical Center and Kempenhaeghe, Heeze and Maastricht, The NetherlandsAcademic Center for Epileptology, Maastricht University Medical Center and Kempenhaeghe, Heeze and Maastricht, The NetherlandsDepartment of Health Services Research, Maastricht University Care and Public Health Research Institute, Maastricht, Limburg, The NetherlandsMT Member Knowledge and Innovation, EpilepsieNL, Utrecht, The NetherlandsAcademic Center for Epileptology, Maastricht University Medical Center and Kempenhaeghe, Heeze and Maastricht, The NetherlandsDepartment of Radiation Oncology (Maastro), GROW School for Oncology and Reproduction, Maastricht University Medical Centre+, Maastricht, Limburg, The NetherlandsAcademic Center for Epileptology, Maastricht University Medical Center and Kempenhaeghe, Heeze and Maastricht, The NetherlandsBackground Living 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.https://bmjopen.bmj.com/content/15/7/e095123.full |
| spellingShingle | Ruud Houben Ghislaine A P G van Mastrigt Albert Colon Silvia Evers Olaf E M G Schijns Marian H J M Majoie Darin Elabbasy Laura M’Rabet Vivianne H J M van Kranen-Mastenbroek Daniëlle B P Eekers Marc Hendriks The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocol BMJ Open |
| title | The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocol |
| title_full | The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocol |
| title_fullStr | The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocol |
| title_full_unstemmed | The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocol |
| title_short | The Economic and societal burden associated with drug-resistant epilepsy in the Netherlands: an AIM@EPILEPSY burden-of-disease study protocol |
| title_sort | economic and societal burden associated with drug resistant epilepsy in the netherlands an aim epilepsy burden of disease study protocol |
| url | https://bmjopen.bmj.com/content/15/7/e095123.full |
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