New onset refractory status epilepticus: Long‐term outcomes beyond seizures DOI Creative Commons
Poul H. Espino, Krista Eschbach, Leah J. Blank

et al.

Epilepsia, Journal Year: 2025, Volume and Issue: unknown

Published: Jan. 18, 2025

Abstract We propose and prioritize important outcome domains that should be considered for future research investigating long‐term outcomes (LTO) after new onset refractory status epilepticus (NORSE). The study was led by the international NORSE Institute LTO Working Group. First, literature describing of survivors identified using a PubMed search summarized to identify knowledge gaps. Subsequently, consensus‐building process performed rank further research. prioritization qualitative, enabling expert panel generate ideas, share opinions, provide reasons rankings. A second round took place allow expansion agreement regarding specific details each domain. Outcomes were classified into eight main domains: (1) Function: Neuropsychological, Neurological (other than seizures), Psychiatric (mood behavior); (2) Quality Life; (3) Epilepsy; (4) Nonneurological (medical); (5) Social; (6) Caregiver Burden; (7) Long‐Term Mortality; (8) Health Care System Impact. In addition, working group suggested obtaining measures domain at 6 months 1 year discharge annually thereafter until stability has been reached. There are no currently established time frames set when in begin or plateau, previously there existed consensus which considered. This identifies recommends studies more consistent results can compared between studies. Survivors evaluated serially fixed points over maximize our understanding recovery trajectory all domains. Establishing reliable standardized data (beyond seizures) will support discussions with families during acute stages, prognostication, development targeted management strategies survivors, comparative globally helping biomarkers may predict LTO.

Language: Английский

New onset refractory status epilepticus: Long‐term outcomes beyond seizures DOI Creative Commons
Poul H. Espino, Krista Eschbach, Leah J. Blank

et al.

Epilepsia, Journal Year: 2025, Volume and Issue: unknown

Published: Jan. 18, 2025

Abstract We propose and prioritize important outcome domains that should be considered for future research investigating long‐term outcomes (LTO) after new onset refractory status epilepticus (NORSE). The study was led by the international NORSE Institute LTO Working Group. First, literature describing of survivors identified using a PubMed search summarized to identify knowledge gaps. Subsequently, consensus‐building process performed rank further research. prioritization qualitative, enabling expert panel generate ideas, share opinions, provide reasons rankings. A second round took place allow expansion agreement regarding specific details each domain. Outcomes were classified into eight main domains: (1) Function: Neuropsychological, Neurological (other than seizures), Psychiatric (mood behavior); (2) Quality Life; (3) Epilepsy; (4) Nonneurological (medical); (5) Social; (6) Caregiver Burden; (7) Long‐Term Mortality; (8) Health Care System Impact. In addition, working group suggested obtaining measures domain at 6 months 1 year discharge annually thereafter until stability has been reached. There are no currently established time frames set when in begin or plateau, previously there existed consensus which considered. This identifies recommends studies more consistent results can compared between studies. Survivors evaluated serially fixed points over maximize our understanding recovery trajectory all domains. Establishing reliable standardized data (beyond seizures) will support discussions with families during acute stages, prognostication, development targeted management strategies survivors, comparative globally helping biomarkers may predict LTO.

Language: Английский

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