Objective: This study was undertaken to develop consensus-based recommendations for the management of adult and pediatric patients with new onset refractory status epilepticus (NORSE)/febrile infection-related epilepsy syndrome (FIRES) based on best evidence and experience. Methods: The Delphi methodology was followed. A facilitator group of nine experts was established, who defined the scope, users, and suggestions for recommendations. Following a review of the current literature, recommendation statements concerning diagnosis, treatment, and research directions were generated, which were then rated on a scale of 1 (strongly disagree) to 9 (strongly agree) by a panel of 48 experts in the field. Consensus that a statement was appropriate was reached if the median score was ≥7 and inappropriate if the median score was ≤3. The analysis of evidence was mapped to the results of each statement included in the Delphi survey. Results: Overall, 85 recommendation statements achieved consensus. The recommendations are divided into five sections: (1) disease characteristics; (2) diagnostic testing and sampling; (3) acute treatment; (4) treatment in the postacute phase; and (5) research, registries, and future directions in NORSE/FIRES. The detailed results and discussion of all 85 statements are outlined herein. A corresponding summary of findings and practical flowsheets are presented in a companion article. Significance: This detailed analysis offers insight into the supporting evidence and the current gaps in the literature that are associated with expert consensus statements related to NORSE/FIRES. The recommendations generated by this consensus can be used as a guide for the diagnosis, evaluation, and management of patients with NORSE/FIRES, and for planning of future research.

International consensus recommendations for management of new onset refractory status epilepticus including febrile infection-related epilepsy syndrome: Statements and supporting evidence / Wickstrom, R.; Taraschenko, O.; Dilena, R.; Payne, E. T.; Specchio, N.; Nabbout, R.; Koh, S.; Gaspard, N.; Hirsch, L. J.; Auvin, S.; van Baalen, A.; Beghi, E.; Benseler, S. M.; Bergin, P.; Bleck, T.; Brunklaus, A.; Caraballo, R. H.; Cervenka, M.; Costello, D.; Drislane, F.; Farias-Moeller, R.; Gallantine, W.; Gilmore, E.; Gofton, T.; Jimenez, M. A. P.; Hocker, S.; Kaliakatsos, M.; Kellogg, M.; Lee, J. W.; Loddenkemper, T.; Meletti, S.; Mizugushi, M.; Muscal, E.; Riviello, J. J.; Rosenthal, E. S.; Rossetti, A. O.; Ruegg, S.; Said, R.; Sculier, C.; Schmitt, S.; Schuele, S.; Stredny, C.; Trinka, E.; Wainwright, M.; Vanhaerents, S.; Wells, E.; Wirrell, E.; Zuberi, S. M.. - In: EPILEPSIA. - ISSN 0013-9580. - 63:11(2022), pp. 2840-2864. [10.1111/epi.17397]

International consensus recommendations for management of new onset refractory status epilepticus including febrile infection-related epilepsy syndrome: Statements and supporting evidence

Meletti S.;
2022

Abstract

Objective: This study was undertaken to develop consensus-based recommendations for the management of adult and pediatric patients with new onset refractory status epilepticus (NORSE)/febrile infection-related epilepsy syndrome (FIRES) based on best evidence and experience. Methods: The Delphi methodology was followed. A facilitator group of nine experts was established, who defined the scope, users, and suggestions for recommendations. Following a review of the current literature, recommendation statements concerning diagnosis, treatment, and research directions were generated, which were then rated on a scale of 1 (strongly disagree) to 9 (strongly agree) by a panel of 48 experts in the field. Consensus that a statement was appropriate was reached if the median score was ≥7 and inappropriate if the median score was ≤3. The analysis of evidence was mapped to the results of each statement included in the Delphi survey. Results: Overall, 85 recommendation statements achieved consensus. The recommendations are divided into five sections: (1) disease characteristics; (2) diagnostic testing and sampling; (3) acute treatment; (4) treatment in the postacute phase; and (5) research, registries, and future directions in NORSE/FIRES. The detailed results and discussion of all 85 statements are outlined herein. A corresponding summary of findings and practical flowsheets are presented in a companion article. Significance: This detailed analysis offers insight into the supporting evidence and the current gaps in the literature that are associated with expert consensus statements related to NORSE/FIRES. The recommendations generated by this consensus can be used as a guide for the diagnosis, evaluation, and management of patients with NORSE/FIRES, and for planning of future research.
2022
63
11
2840
2864
International consensus recommendations for management of new onset refractory status epilepticus including febrile infection-related epilepsy syndrome: Statements and supporting evidence / Wickstrom, R.; Taraschenko, O.; Dilena, R.; Payne, E. T.; Specchio, N.; Nabbout, R.; Koh, S.; Gaspard, N.; Hirsch, L. J.; Auvin, S.; van Baalen, A.; Beghi, E.; Benseler, S. M.; Bergin, P.; Bleck, T.; Brunklaus, A.; Caraballo, R. H.; Cervenka, M.; Costello, D.; Drislane, F.; Farias-Moeller, R.; Gallantine, W.; Gilmore, E.; Gofton, T.; Jimenez, M. A. P.; Hocker, S.; Kaliakatsos, M.; Kellogg, M.; Lee, J. W.; Loddenkemper, T.; Meletti, S.; Mizugushi, M.; Muscal, E.; Riviello, J. J.; Rosenthal, E. S.; Rossetti, A. O.; Ruegg, S.; Said, R.; Sculier, C.; Schmitt, S.; Schuele, S.; Stredny, C.; Trinka, E.; Wainwright, M.; Vanhaerents, S.; Wells, E.; Wirrell, E.; Zuberi, S. M.. - In: EPILEPSIA. - ISSN 0013-9580. - 63:11(2022), pp. 2840-2864. [10.1111/epi.17397]
Wickstrom, R.; Taraschenko, O.; Dilena, R.; Payne, E. T.; Specchio, N.; Nabbout, R.; Koh, S.; Gaspard, N.; Hirsch, L. J.; Auvin, S.; van Baalen, A.; Beghi, E.; Benseler, S. M.; Bergin, P.; Bleck, T.; Brunklaus, A.; Caraballo, R. H.; Cervenka, M.; Costello, D.; Drislane, F.; Farias-Moeller, R.; Gallantine, W.; Gilmore, E.; Gofton, T.; Jimenez, M. A. P.; Hocker, S.; Kaliakatsos, M.; Kellogg, M.; Lee, J. W.; Loddenkemper, T.; Meletti, S.; Mizugushi, M.; Muscal, E.; Riviello, J. J.; Rosenthal, E. S.; Rossetti, A. O.; Ruegg, S.; Said, R.; Sculier, C.; Schmitt, S.; Schuele, S.; Stredny, C.; Trinka, E.; Wainwright, M.; Vanhaerents, S.; Wells, E.; Wirrell, E.; Zuberi, S. M.
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