Trends in management of patients with new‐onset refractory status epilepticus (NORSE) from 2016 to 2023: An interim analysis
In response to the evolving treatment landscape for new‐onset refractory status epilepticus (NORSE) and the publication of consensus recommendations in 2022, we conducted a comparative analysis of NORSE management over time. Seventy‐seven patients were enrolled by 32 centers, from July 2016 to Augus...
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| Veröffentlicht in: | Epilepsia (Copenhagen) 2024-08, Vol.65 (8), p.e148-e155 |
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| creator | Hanin, Aurelie Jimenez, Anthony D. Gopaul, Margaret Asbell, Hannah Aydemir, Seyhmus Basha, Maysaa Merhi Batra, Ayush Damien, Charlotte Day, Gregory S. Eka, Onome Eschbach, Krista Fatima, Safoora Fields, Madeline C. Foreman, Brandon Gerard, Elizabeth E. Gofton, Teneille E. Haider, Hiba A. Hantus, Stephen T. Hocker, Sara Jongeling, Amy Kalkach Aparicio, Mariel Kandula, Padmaja Kang, Peter Kazazian, Karnig Kellogg, Marissa A. Kim, Minjee Lee, Jong Woo Marcuse, Lara V. McGraw, Christopher M. Mohamed, Wazim Orozco, Janet Pimentel, Cederic M. Punia, Vineet Ramirez, Alexandra M. Steriade, Claude Struck, Aaron F. Taraschenko, Olga Treister, Andrew K. Wainwright, Mark S. Yoo, Ji Yeoun Zafar, Sahar Zhou, Daniel J. Zutshi, Deepti Gaspard, Nicolas Hirsch, Lawrence J. |
| description | In response to the evolving treatment landscape for new‐onset refractory status epilepticus (NORSE) and the publication of consensus recommendations in 2022, we conducted a comparative analysis of NORSE management over time. Seventy‐seven patients were enrolled by 32 centers, from July 2016 to August 2023, in the NORSE/FIRES biorepository at Yale. Immunotherapy was administered to 88% of patients after a median of 3 days, with 52% receiving second‐line immunotherapy after a median of 12 days (anakinra 29%, rituximab 25%, and tocilizumab 19%). There was an increase in the use of second‐line immunotherapies (odds ratio [OR] = 1.4, 95% CI = 1.1–1.8) and ketogenic diet (OR = 1.8, 95% CI = 1.3–2.6) over time. Specifically, patients from 2022 to 2023 more frequently received second‐line immunotherapy (69% vs 40%; OR = 3.3; 95% CI = 1.3–8.9)—particularly anakinra (50% vs 13%; OR = 6.5; 95% CI = 2.3–21.0), and the ketogenic diet (OR = 6.8; 95% CI = 2.5–20.1)—than those before 2022. Among the 27 patients who received anakinra and/or tocilizumab, earlier administration after status epilepticus onset correlated with a shorter duration of status epilepticus (ρ = .519, p = .005). Our findings indicate an evolution in NORSE management, emphasizing the increasing use of second‐line immunotherapies and the ketogenic diet. Future research will clarify the impact of these treatments and their timing on patient outcomes. |
| doi_str_mv | 10.1111/epi.18014 |
| format | Article |
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Seventy‐seven patients were enrolled by 32 centers, from July 2016 to August 2023, in the NORSE/FIRES biorepository at Yale. Immunotherapy was administered to 88% of patients after a median of 3 days, with 52% receiving second‐line immunotherapy after a median of 12 days (anakinra 29%, rituximab 25%, and tocilizumab 19%). There was an increase in the use of second‐line immunotherapies (odds ratio [OR] = 1.4, 95% CI = 1.1–1.8) and ketogenic diet (OR = 1.8, 95% CI = 1.3–2.6) over time. Specifically, patients from 2022 to 2023 more frequently received second‐line immunotherapy (69% vs 40%; OR = 3.3; 95% CI = 1.3–8.9)—particularly anakinra (50% vs 13%; OR = 6.5; 95% CI = 2.3–21.0), and the ketogenic diet (OR = 6.8; 95% CI = 2.5–20.1)—than those before 2022. Among the 27 patients who received anakinra and/or tocilizumab, earlier administration after status epilepticus onset correlated with a shorter duration of status epilepticus (ρ = .519, p = .005). Our findings indicate an evolution in NORSE management, emphasizing the increasing use of second‐line immunotherapies and the ketogenic diet. Future research will clarify the impact of these treatments and their timing on patient outcomes.</description><identifier>ISSN: 0013-9580</identifier><identifier>ISSN: 1528-1167</identifier><identifier>EISSN: 1528-1167</identifier><identifier>DOI: 10.1111/epi.18014</identifier><identifier>PMID: 38837761</identifier><language>eng</language><publisher>United States: Wiley Subscription Services, Inc</publisher><subject>Adolescent ; Adult ; age ; Antibodies, Monoclonal, Humanized - therapeutic use ; Anticonvulsants - therapeutic use ; Child ; Child, Preschool ; Comparative analysis ; Diet, Ketogenic - methods ; Disease Management ; Drug Resistant Epilepsy - diet therapy ; Drug Resistant Epilepsy - therapy ; Epilepsy ; etiology ; Female ; High fat diet ; Humans ; Immunotherapy ; Immunotherapy - methods ; Immunotherapy - trends ; Interleukin 1 receptor antagonist ; Ketogenesis ; Low carbohydrate diet ; Male ; Middle Aged ; new‐onset refractory status epilepticus ; outcome ; Rituximab ; Rituximab - therapeutic use ; 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Seventy‐seven patients were enrolled by 32 centers, from July 2016 to August 2023, in the NORSE/FIRES biorepository at Yale. Immunotherapy was administered to 88% of patients after a median of 3 days, with 52% receiving second‐line immunotherapy after a median of 12 days (anakinra 29%, rituximab 25%, and tocilizumab 19%). There was an increase in the use of second‐line immunotherapies (odds ratio [OR] = 1.4, 95% CI = 1.1–1.8) and ketogenic diet (OR = 1.8, 95% CI = 1.3–2.6) over time. Specifically, patients from 2022 to 2023 more frequently received second‐line immunotherapy (69% vs 40%; OR = 3.3; 95% CI = 1.3–8.9)—particularly anakinra (50% vs 13%; OR = 6.5; 95% CI = 2.3–21.0), and the ketogenic diet (OR = 6.8; 95% CI = 2.5–20.1)—than those before 2022. Among the 27 patients who received anakinra and/or tocilizumab, earlier administration after status epilepticus onset correlated with a shorter duration of status epilepticus (ρ = .519, p = .005). Our findings indicate an evolution in NORSE management, emphasizing the increasing use of second‐line immunotherapies and the ketogenic diet. Future research will clarify the impact of these treatments and their timing on patient outcomes.</description><subject>Adolescent</subject><subject>Adult</subject><subject>age</subject><subject>Antibodies, Monoclonal, Humanized - therapeutic use</subject><subject>Anticonvulsants - therapeutic use</subject><subject>Child</subject><subject>Child, Preschool</subject><subject>Comparative analysis</subject><subject>Diet, Ketogenic - methods</subject><subject>Disease Management</subject><subject>Drug Resistant Epilepsy - diet therapy</subject><subject>Drug Resistant Epilepsy - therapy</subject><subject>Epilepsy</subject><subject>etiology</subject><subject>Female</subject><subject>High fat diet</subject><subject>Humans</subject><subject>Immunotherapy</subject><subject>Immunotherapy - methods</subject><subject>Immunotherapy - trends</subject><subject>Interleukin 1 receptor antagonist</subject><subject>Ketogenesis</subject><subject>Low carbohydrate diet</subject><subject>Male</subject><subject>Middle Aged</subject><subject>new‐onset refractory status epilepticus</subject><subject>outcome</subject><subject>Rituximab</subject><subject>Rituximab - therapeutic use</subject><subject>Status Epilepticus - drug therapy</subject><subject>Status Epilepticus - therapy</subject><subject>Young 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in management of patients with new‐onset refractory status epilepticus (NORSE) from 2016 to 2023: An interim analysis</title><author>Hanin, Aurelie ; Jimenez, Anthony D. ; Gopaul, Margaret ; Asbell, Hannah ; Aydemir, Seyhmus ; Basha, Maysaa Merhi ; Batra, Ayush ; Damien, Charlotte ; Day, Gregory S. ; Eka, Onome ; Eschbach, Krista ; Fatima, Safoora ; Fields, Madeline C. ; Foreman, Brandon ; Gerard, Elizabeth E. ; Gofton, Teneille E. ; Haider, Hiba A. ; Hantus, Stephen T. ; Hocker, Sara ; Jongeling, Amy ; Kalkach Aparicio, Mariel ; Kandula, Padmaja ; Kang, Peter ; Kazazian, Karnig ; Kellogg, Marissa A. ; Kim, Minjee ; Lee, Jong Woo ; Marcuse, Lara V. ; McGraw, Christopher M. ; Mohamed, Wazim ; Orozco, Janet ; Pimentel, Cederic M. ; Punia, Vineet ; Ramirez, Alexandra M. ; Steriade, Claude ; Struck, Aaron F. ; Taraschenko, Olga ; Treister, Andrew K. ; Wainwright, Mark S. ; Yoo, Ji Yeoun ; Zafar, Sahar ; Zhou, Daniel J. ; Zutshi, Deepti ; Gaspard, Nicolas ; Hirsch, Lawrence 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Abstracts</collection><collection>MEDLINE - Academic</collection><jtitle>Epilepsia (Copenhagen)</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Hanin, Aurelie</au><au>Jimenez, Anthony D.</au><au>Gopaul, Margaret</au><au>Asbell, Hannah</au><au>Aydemir, Seyhmus</au><au>Basha, Maysaa Merhi</au><au>Batra, Ayush</au><au>Damien, Charlotte</au><au>Day, Gregory S.</au><au>Eka, Onome</au><au>Eschbach, Krista</au><au>Fatima, Safoora</au><au>Fields, Madeline C.</au><au>Foreman, Brandon</au><au>Gerard, Elizabeth E.</au><au>Gofton, Teneille E.</au><au>Haider, Hiba A.</au><au>Hantus, Stephen T.</au><au>Hocker, Sara</au><au>Jongeling, Amy</au><au>Kalkach Aparicio, Mariel</au><au>Kandula, Padmaja</au><au>Kang, Peter</au><au>Kazazian, Karnig</au><au>Kellogg, Marissa A.</au><au>Kim, Minjee</au><au>Lee, Jong Woo</au><au>Marcuse, Lara V.</au><au>McGraw, Christopher M.</au><au>Mohamed, Wazim</au><au>Orozco, Janet</au><au>Pimentel, Cederic M.</au><au>Punia, Vineet</au><au>Ramirez, Alexandra M.</au><au>Steriade, Claude</au><au>Struck, Aaron F.</au><au>Taraschenko, Olga</au><au>Treister, Andrew K.</au><au>Wainwright, Mark S.</au><au>Yoo, Ji Yeoun</au><au>Zafar, Sahar</au><au>Zhou, Daniel J.</au><au>Zutshi, Deepti</au><au>Gaspard, Nicolas</au><au>Hirsch, Lawrence J.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Trends in management of patients with new‐onset refractory status epilepticus (NORSE) from 2016 to 2023: An interim analysis</atitle><jtitle>Epilepsia (Copenhagen)</jtitle><addtitle>Epilepsia</addtitle><date>2024-08</date><risdate>2024</risdate><volume>65</volume><issue>8</issue><spage>e148</spage><epage>e155</epage><pages>e148-e155</pages><issn>0013-9580</issn><issn>1528-1167</issn><eissn>1528-1167</eissn><abstract>In response to the evolving treatment landscape for new‐onset refractory status epilepticus (NORSE) and the publication of consensus recommendations in 2022, we conducted a comparative analysis of NORSE management over time. Seventy‐seven patients were enrolled by 32 centers, from July 2016 to August 2023, in the NORSE/FIRES biorepository at Yale. Immunotherapy was administered to 88% of patients after a median of 3 days, with 52% receiving second‐line immunotherapy after a median of 12 days (anakinra 29%, rituximab 25%, and tocilizumab 19%). There was an increase in the use of second‐line immunotherapies (odds ratio [OR] = 1.4, 95% CI = 1.1–1.8) and ketogenic diet (OR = 1.8, 95% CI = 1.3–2.6) over time. Specifically, patients from 2022 to 2023 more frequently received second‐line immunotherapy (69% vs 40%; OR = 3.3; 95% CI = 1.3–8.9)—particularly anakinra (50% vs 13%; OR = 6.5; 95% CI = 2.3–21.0), and the ketogenic diet (OR = 6.8; 95% CI = 2.5–20.1)—than those before 2022. Among the 27 patients who received anakinra and/or tocilizumab, earlier administration after status epilepticus onset correlated with a shorter duration of status epilepticus (ρ = .519, p = .005). Our findings indicate an evolution in NORSE management, emphasizing the increasing use of second‐line immunotherapies and the ketogenic diet. Future research will clarify the impact of these treatments and their timing on patient outcomes.</abstract><cop>United States</cop><pub>Wiley Subscription Services, Inc</pub><pmid>38837761</pmid><doi>10.1111/epi.18014</doi><tpages>8</tpages><orcidid>https://orcid.org/0009-0002-8706-5423</orcidid><orcidid>https://orcid.org/0000-0002-6333-832X</orcidid><orcidid>https://orcid.org/0000-0002-4783-5801</orcidid><orcidid>https://orcid.org/0000-0001-5283-7476</orcidid><orcidid>https://orcid.org/0000-0002-4249-338X</orcidid><orcidid>https://orcid.org/0000-0002-9768-5178</orcidid><orcidid>https://orcid.org/0000-0002-3509-3548</orcidid><orcidid>https://orcid.org/0000-0002-0552-6736</orcidid><orcidid>https://orcid.org/0000-0001-7242-9779</orcidid><orcidid>https://orcid.org/0000-0003-1561-1667</orcidid><orcidid>https://orcid.org/0000-0002-0676-7312</orcidid><orcidid>https://orcid.org/0000-0001-7118-3690</orcidid><orcidid>https://orcid.org/0000-0001-5252-5376</orcidid><orcidid>https://orcid.org/0000-0002-5912-9998</orcidid><orcidid>https://orcid.org/0000-0003-3099-001X</orcidid><orcidid>https://orcid.org/0000-0003-4848-8909</orcidid><orcidid>https://orcid.org/0000-0001-9001-4884</orcidid></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0013-9580 |
| ispartof | Epilepsia (Copenhagen), 2024-08, Vol.65 (8), p.e148-e155 |
| issn | 0013-9580 1528-1167 1528-1167 |
| language | eng |
| recordid | cdi_proquest_miscellaneous_3065275863 |
| source | MEDLINE; Access via Wiley Online Library |
| subjects | Adolescent Adult age Antibodies, Monoclonal, Humanized - therapeutic use Anticonvulsants - therapeutic use Child Child, Preschool Comparative analysis Diet, Ketogenic - methods Disease Management Drug Resistant Epilepsy - diet therapy Drug Resistant Epilepsy - therapy Epilepsy etiology Female High fat diet Humans Immunotherapy Immunotherapy - methods Immunotherapy - trends Interleukin 1 receptor antagonist Ketogenesis Low carbohydrate diet Male Middle Aged new‐onset refractory status epilepticus outcome Rituximab Rituximab - therapeutic use Status Epilepticus - drug therapy Status Epilepticus - therapy Young Adult |
| title | Trends in management of patients with new‐onset refractory status epilepticus (NORSE) from 2016 to 2023: An interim analysis |
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