{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,5]],"date-time":"2026-11-05T20:08:14Z","timestamp":1793909294808,"version":"4.8.0"},"reference-count":41,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2025,9,13]],"date-time":"2025-09-13T00:00:00Z","timestamp":1757721600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,9,13]],"date-time":"2025-09-13T00:00:00Z","timestamp":1757721600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia"],"published-print":{"date-parts":[[2026,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>This study aims to better characterize the long\u2010term neurological quality of life (QOL) outcomes (using the Neuro\u2010QOL scale) in survivors of new onset refractory status epilepticus (NORSE), including its subtype febrile infection\u2010related epilepsy syndrome (FIRES), and provide guidance for psychological and social support strategies.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      Utilizing data from a multicenter prospective study of NORSE\/FIRES led by Yale University, we enrolled patients who completed the validated, patient\u2010reported Neuro\u2010QOL scale at least once at 3\u20136\u2009months (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200937), 12\u2009months (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200929), 24\u2009months (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200923), or \u226536\u2009months (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20099) following discharge. The Neuro\u2010QOL scale assesses physical, mental, and social health in patients with neurological disorders. QOL impairment (QOL\u2010I) scores were calculated, with higher scores indicating greater impairment.\n                      <jats:italic>T<\/jats:italic>\n                      \u2010scores enabled comparisons with reference populations.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      In adults, median QOL\u2010I improved from 44.1% at 3\u20136\u2009months to 37.6% at 36+ months. Paired analysis showed significant improvement in QOL\u2010I between 3\u20136 and 24\u2009months (\n                      <jats:italic>p<\/jats:italic>\n                      \u2009=\u2009.016), with specific improvements in communication, satisfaction with social roles, fatigue, and mobility. Greater improvement was also observed for participation in social roles (5.5\u2010point\n                      <jats:italic>T<\/jats:italic>\n                      \u2010score gain) compared to the reference population, suggesting meaningful change. A gradual improvement in overall QOL\u2010I scores was also observed in pediatric participants, despite a modest sample size (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u20095 with data at 3\u20136 and 12\u2009months). Measures of fatigue and anxiety persisted in adults, and cognitive difficulties persisted in both adults and children. In adults, longer status epilepticus duration and intensive care unit stay were associated with poorer QOL. Additionally, a higher number of antiseizure medications was associated with more depression, cognitive impairments, and perceived stigma.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Significance<\/jats:title>\n                    <jats:p>These findings highlight the potential for recovery following an acute episode of NORSE, although many patients continue to face challenges requiring ongoing support, and the clinical meaning of the reported QOL improvement remains unclear. Furthermore, the findings underscore the importance of strategic multidisciplinary support systems in the years following discharge.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/epi.18635","type":"journal-article","created":{"date-parts":[[2025,9,13]],"date-time":"2025-09-13T14:39:09Z","timestamp":1757774349000},"page":"328-340","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Quality of life over time after new onset refractory status epilepticus"],"prefix":"10.1111","volume":"67","author":[{"given":"Matthew D.","family":"Gruen","sequence":"first","affiliation":[{"name":"Department of Neurology, Comprehensive Epilepsy Center Yale University School of Medicine  New Haven Connecticut USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret T.","family":"Gopaul","sequence":"additional","affiliation":[{"name":"Department of Neurology, Comprehensive Epilepsy Center Yale University School of Medicine  New Haven Connecticut USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-8706-5423","authenticated-orcid":false,"given":"Anthony D.","family":"Jimenez","sequence":"additional","affiliation":[{"name":"Department of Neurology, Comprehensive Epilepsy Center Yale University School of Medicine  New Haven Connecticut USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4783-5801","authenticated-orcid":false,"given":"Ayush","family":"Batra","sequence":"additional","affiliation":[{"name":"Feinberg School of Medicine Northwestern University  Chicago Illinois USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8719-6752","authenticated-orcid":false,"given":"Leah J.","family":"Blank","sequence":"additional","affiliation":[{"name":"Icahn School of Medicine at Mount Sinai  New York New York 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