We aimed to determine whether clinical EEG reports obtained from children in the intensive care unit with refractory status epilepticus could provide data for comparative effectiveness research studies.
We conducted a retrospective descriptive study to assess the documentation of key variables within clinical continuous EEG monitoring reports based on the American Clinical Neurophysiology Society's standardized EEG terminology for children with refractory status epilepticus from 10 academic centers. Two pediatric electroencephalographers reviewed the EEG reports. We compared reports generated using free text or templates.
We reviewed 191 EEG reports. Agreement between the electroencephalographers regarding whether a variable was described in the report ranged from fair to very good. The presence of electrographic seizures (ES) was documented in 46% (87/191) of reports, and these reports documented the time of first ES in 64% (56/87), ES duration in 72% (63/85), and ES frequency in 68% (59/87). Reactivity was documented in 16% (31/191) of reports, and it was more often documented in template than in free-text reports (40% vs. 14%, P = 0.006). Other variables were not differentially reported in template versus free-text reports.
Many key EEG features are not documented consistently in clinical continuous EEG monitoring reports, including ES characteristics and reactivity assessment. Standardization may be needed for clinical EEG reports to provide informative data for large multicenter observational studies.
*Division of Epilepsy and Clinical Neurophysiology, Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, U.S.A.;
†Division of Neurology, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, Ohio, U.S.A.;
‡Department of Child Neurology, Hospital Sant Joan de Déu, Universidad de Barcelona, Barcelona, Spain;
§Department of Epilepsy, Neurophysiology, and Critical Care Neurology, Children's National Health System, George Washington, University School of Medicine and Health Sciences, Washington, District of Columbia, U.S.A.;
‖Division of Critical Care, Departments of Neurology, Anesthesiology, Perioperative and Pain Medicine, Boston Children's Hospital, Harvard Medical School, Boston, Massachusetts, U.S.A.;
¶Section of Pediatric Critical Care Medicine, Department of Pediatrics, Baylor College of Medicine, Houston, Texas, U.S.A.;
#Division of Pediatric Neurology, Duke University Medical Center, Duke University, Durham, North Carolina, U.S.A.;
**Departments of Pediatrics and Neurology, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, Colorado, U.S.A.;
††Department of Neurology and Pediatrics, the University of Virginia Health System, Charlottesville, Virginia, U.S.A.;
‡‡Facultad de Medicina, Universidad Austral de Chile, Valdivia, Chile; Division of Pediatric Neurology, Hospital Clínico San Borja Arriarán, Universidad de Chile, Santiago, Chile;
§§Ruth D. & Ken M. Davee Pediatric Neurocritical Care Program, Northwestern University Feinberg School of Medicine, Chicago, Illinois, U.S.A.;
‖‖Division of Neurology, Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, Pennsylvania, U.S.A.;
¶¶Division of Pediatric Neurology, University of Washington, Seattle, Washington, U.S.A.;
##Barrow Neurological Institute, Phoenix Children's Hospital, Department of Pediatrics, University of Arizona School of Medicine, Phoenix, Arizona, U.S.A.; and
***Department of Neurology, Mayo Clinic, Scottsdale, Arizona, U.S.A.
Address correspondence and reprint requests to Arnold J. Sansevere, MD, Division of Epilepsy and Clinical Neurophysiology, Fegan 9 Boston Children's Hospital, 300 Longwood Avenue, Boston, MA 02115, U.S.A.; e-mail: email@example.com.
pSERG is funded by the Pediatric Epilepsy Research Foundation and the Epilepsy Research Fund. R. Arya receives research support from Procter Foundation (PI) and Maxon Foundation (Coinvestigator). I. Sánchez Fernández is funded by the Epilepsy Research Fund and was funded by Fundación Alfonso Martín Escudero and the HHV-6 Foundation. W. D. Gaillard derives income from clinical revenue generated for CNMC clinical care. He received federal support from NINDS, NICHD, NSF, and PICORI. He received foundation support from the American Heart Association, PERF. Epilepsy Research Editorial Board. Dmitry Tchapyjnikov has received consultation fees from IQVIA and Guidepoint. M. Gaínza-Lein was supported by the Epilepsy Research Fund and by a Boston Children's Hospital investigator-initiated study from Upsher-Smith Laboratories. H. P. Goodkin was a member of the clinical standardization team for Sage Therapeutics. T. A. Glauser is funded by NIH grants 2U01-NS045911, U10-NS077311, R01-NS065840, and R01-HD073115. He has received consulting fees from Supernus. He had served as an expert consultant for the US Department of Justice and has received compensation for work as an expert on medico-legal cases. He receives royalties from a patent license from AssureX Health. A. Topjian is funded by NIH grant K23 k23NS075363, SAGE (site PI), and Laerdal. M. Wainwright serves on the Clinical Advisory Board of Sage Therapeutics, sponsor of a clinical trial for treatment of super-refractory status epilepticus; and is a coprincipal investigator on a Phase III study for the treatment of super-refractory status epilepticus sponsored by Sage Therapeutics. A. Wilfong reports research grant funding for epilepsy from GW Pharm, Novartis, Acorda, Upsher-Smith, Lundbeck, Zogenix, and Eisai; and reports receiving royalties from the publication of Up To Date chapters on epilepsy. T. Loddenkemper serves on the Council (and as the President) of the American Clinical Neurophysiology Society (active), serves on the American Board of Clinical Neurophysiology (active), served as an Associate Editor for Seizure, served on the Laboratory Accreditation Board for Long Term (Epilepsy and Intensive Care Unit) Monitoring, and serves as an Associate Editor for Wyllie's Treatment of Epilepsy 6th and 7th edition. He is part of patent applications and license agreements to detect and predict clinical outcomes, and to manage, diagnose, and treat neurologic conditions, epilepsy and seizures, and future revenue from these scientific contributions cannot be ruled out. Dr. Loddenkemper is a coinventor of the TriVox Health technology. T. Loddenkemper, and Boston Children's Hospital, may receive financial benefits in the form of license payments in the future. He received research support from the NIH, the Epilepsy Research Fund, the Epilepsy Foundation of America, the Epilepsy Therapy Project, the Pediatric Epilepsy Research Foundation, Lundbeck, Eisai, Upsher-Smith, Sunovion, Mallinckrodt, Empatica, Sage, and Pfizer, including past device donations from various companies, including SmartWatch, Empatica, and Neuroelectrics. He served as a consultant for Zogenix, Upsher-Smith, Amzell, Sunovion, Engage, Elsevier, UCB, Advance Medical, and Grand Rounds. He performs video electroencephalogram long-term and ICU monitoring, electroencephalograms, and other electrophysiological studies at Boston Children's Hospital and affiliated hospitals and bills for these procedures, and he evaluates pediatric neurology patients and bills for clinical care. He has received speaker honorariums from national societies including the AAN, AES, and ACNS, and for Grand Rounds at various academic centers. His wife, Dr. Karen Stannard, is a pediatric neurologist and she performs video electroencephalogram long-term and ICU monitoring, electroencephalograms, and other electrophysiological studies and bills for these procedures, and she evaluates pediatric neurology patients and bills for clinical care. N. S. Abend serves as a consultant to Sage and receives research support from NIH (PI), PCCORI (Site PI), and PERF (site PI). The remaining authors have no funding or conflicts of interest to disclose.