{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,15]],"date-time":"2026-03-15T03:40:26Z","timestamp":1773546026303,"version":"3.50.1"},"reference-count":21,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2021,12,20]],"date-time":"2021-12-20T00:00:00Z","timestamp":1639958400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia Open"],"published-print":{"date-parts":[[2022,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>New\u2010onset seizures affect up to 10% of people over their lifetime, however, their health economic impact has not been well\u2010studied. This prospective multicenter study will collect patient\u2010reported outcome measures (PROMs) from adults with new\u2010onset seizures seen in six Seizure Clinics across Melbourne, Australia and The University of Colorado, USA.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Approximately 450 eligible patients will be enrolled in the study at or following their initial attendance to Seizure Clinics at the study hospitals. Inclusion criteria for the study group are those with new\u2010onset acute symptomatic seizures, new\u2010onset unprovoked seizures, and new\u2010onset epilepsy. Inclusion criteria for the three comparator groups are those with noncardiac syncope, those with psychogenic nonepileptic seizures, as well as published PROMs data from the Australian general population. Exclusion criteria are those aged less than 18\u00a0years, those with a preexisting epilepsy diagnosis, and those with intellectual disabilities or other impairments which would preclude them from comprehending and completing the questionnaires. Patients will complete eight online questionnaires regarding the effect that their seizures (or seizure mimics) have had on various aspects of their life. These questionnaires will be readministered at 6 and 12\u00a0months. Patients with new\u2010diagnosis epilepsy will also be asked to share the reasons why they have accepted or declined antiseizure medications.<\/jats:p><\/jats:sec><jats:sec><jats:title>Analysis<\/jats:title><jats:p>Primary outcome measures will be quality of life, work productivity, informal care needs, and mood, at baseline compared to 6 and 12\u00a0months later for those with new\u2010onset seizures and comparing these outcomes to those in the three comparator groups. Secondary outcomes include mapping of QoLIE\u201031 to the EQ\u20105D\u20105L in epilepsy, modelling indirect costs of new\u2010onset seizures, and exploring why patients may or may not wish to take antiseizure medications.<\/jats:p><\/jats:sec><jats:sec><jats:title>Significance<\/jats:title><jats:p>These data will form an evidence\u2010base for future studies that examine the effectiveness of various healthcare interventions for new\u2010onset seizure patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Ethics and dissemination<\/jats:title><jats:p>This study is approved by the Alfred Health Human Research Ethics Committee (SERP: 52\u00a0538, Alfred HREC: 307\/19), the Austin Health Human Research Ethics Committee (HREC\/59148\/Austin\u20102019), and the Colorado Multiple Institutional Review Board (COMIRB) (COMIRB #20\u20103028).<\/jats:p><\/jats:sec><jats:sec><jats:title>ANZCTR trial registration number<\/jats:title><jats:p>ACTRN12621000908831.<\/jats:p><\/jats:sec>","DOI":"10.1002\/epi4.12571","type":"journal-article","created":{"date-parts":[[2021,12,16]],"date-time":"2021-12-16T09:42:21Z","timestamp":1639647741000},"page":"201-209","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Prospective multisite cohort study of patient\u2010reported outcomes in adults with new\u2010onset seizures"],"prefix":"10.1002","volume":"7","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8958-3844","authenticated-orcid":false,"given":"Emma","family":"Foster","sequence":"first","affiliation":[{"name":"Department of Neuroscience Central Clinical School Monash University Melbourne Victoria Australia"},{"name":"Department of Neurology The Royal Melbourne Hospital Parkville Victoria Australia"},{"name":"Department of Neurology Alfred Health Melbourne Victoria 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Neurology Austin Health Heidelberg Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Patrick W.","family":"Carney","sequence":"additional","affiliation":[{"name":"Florey Institute of Neuroscience and Mental Health Melbourne Victoria Australia"},{"name":"Eastern Health Clinical School Monash University Faculty of Medicine, Nursing, and Health Sciences Clayton Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Wendyl","family":"D\u2019Souza","sequence":"additional","affiliation":[{"name":"Department of Medicine St Vincent\u2019s Hospital Melbourne University of Melbourne Fitzroy Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hue Mun","family":"Au Yong","sequence":"additional","affiliation":[{"name":"Department of Neuroscience Central Clinical School Monash University Melbourne Victoria Australia"},{"name":"Department of Neurology The Royal Melbourne Hospital Parkville Victoria Australia"},{"name":"Department of Neurology Alfred Health Melbourne Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John\u2010Paul","family":"Nicolo","sequence":"additional","affiliation":[{"name":"Department of Neuroscience Central Clinical School Monash University Melbourne Victoria Australia"},{"name":"Department of Neurology The Royal Melbourne Hospital Parkville Victoria Australia"},{"name":"Department of Neurology Alfred Health Melbourne Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0747-7210","authenticated-orcid":false,"given":"Jacob","family":"Pellinen","sequence":"additional","affiliation":[{"name":"Department of Neurology University of Colorado School of Medicine Aurora Colorado USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sara","family":"Carrillo de Albornoz","sequence":"additional","affiliation":[{"name":"Centre for Health Economics Monash 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