Evidence map›Paper›PMID 42569898›Full record

ArticleEpilepsia open2026

Management of Infantile Epileptic Spasms Syndrome: A survey of US pediatric hospitals.

Akshat Katyayan, Christina Briscoe, Sonam Bhalla, Sonal Bhatia, Gozde Erdemir, Chellamani Harini, Senyene E Hunter, John R Mytinger, Duyu Nie, Archana Pasupuleti and 7 more

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In one paragraph

Article in Epilepsia open, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0citing papers in PubMed
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1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

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Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

17 authors.

Akshat KatyayanDivision of Pediatric Neurology and Developmental Neuroscience, Texas Children's Hospital, Baylor College of Medicine, Houston, Texas, USA.ORCID https://orcid.org/0000-0001-6980-8292
Christina BriscoeDepartment of Neurology, Boston Children's Hospital, Boston, Massachusetts, USA.ORCID https://orcid.org/0000-0002-1026-7695
Sonam BhallaDivision of Child Neurology, Department of Pediatrics, Emory University/Children's Healthcare of Atlanta, Georgia, Atlanta, USA.ORCID https://orcid.org/0000-0003-3544-9900
Sonal BhatiaDivision of Pediatric Neurology, University of Texas Southwestern Medical Center, Dallas, Texas, USA.
Gozde ErdemirDivision of Pediatric Neurology, Department of Pediatrics, Penn State Health Children's Hospital, Penn State College of Medicine, Hershey, Pennsylvania, USA.
Chellamani HariniDepartment of Neurology, Boston Children's Hospital, Boston, Massachusetts, USA.
Senyene E HunterDepartment of Neurology, University of North Carolina School of Medicine, Chapel Hill, North Carolina, USA.ORCID https://orcid.org/0000-0002-3655-0560
John R MytingerDivision of Pediatric Neurology, Department of Pediatrics, Nationwide Children's Hospital, The Ohio State University, Columbus, Ohio, USA.ORCID https://orcid.org/0000-0001-7901-3960
Duyu NieDivision of Neurology, Pediatrics and Neurosurgery, Alpert Medical School of Brown University, Providence, Rhode Island, USA.ORCID https://orcid.org/0000-0002-4280-6956
Archana PasupuletiDepartment of Neurology and Neurophysiology, Children's National Hospital, Washington, DC, USA.
Shital H PatelDivision of Pediatrics, Department of Pediatrics, Duke University Medical Center, Durham, North Carolina, USA.
Debopam SamantaDivision of Pediatric Neurology, Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA.ORCID https://orcid.org/0000-0002-5154-8717
Amanda Sandoval KaramianDivision of Pediatric Neurology, Department of Pediatrics, University of Utah School of Medicine and Intermountain Primary Children's Health, Salt Lake City, Utah, USA.ORCID https://orcid.org/0000-0002-0813-1334
Avantika SinghDivision of Pediatric Neurology, Department of Neurology, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.ORCID https://orcid.org/0000-0002-7261-1543
Deepa SirsiDivision of Pediatric Neurology, University of Texas Southwestern Medical Center, Dallas, Texas, USA.
Danielle S TakacsDivision of Pediatric Neurology and Developmental Neuroscience, Texas Children's Hospital, Baylor College of Medicine, Houston, Texas, USA.
Shaun A HussainDivision of Pediatric Neurology, University of California, Los Angeles, Los Angeles, California, USA.ORCID https://orcid.org/0000-0001-6947-8852

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo evaluate the management practices of Infantile Epileptic Spasms Syndrome (IESS) across tertiary pediatric hospitals in the United States using a survey-based approach.

methodsA 21-question survey focused on management setting, work-up, follow-up and treatment was created and sent to 45 member institutions of the Pediatric Epilepsy Research Consortium (PERC). Results were analyzed by a working group of PERC focused on IESS.

resultsThirty-three institutions completed the survey. Most institutions (91%) managed new-onset IESS in-patient, with 76% using overnight video EEG (vEEG) monitoring for diagnosis. Nearly all (> 90%) obtained an MRI brain and genetic testing at initial diagnosis. The most common modalities of genetic evaluation were an epilepsy panel (47%) and trio whole exome sequencing (44%). For assessment of response at the first follow-up, 45% used extended vEEG (1-6 h), with 36% continuing to obtain overnight vEEG. The 2021 BASED score (Burden of Amplitude and Epileptiform Discharges) was the preferred method of assessing response (58%) compared to resolution of hypsarrhythmia (39%). High-dose prednisolone was the first treatment for most institutions, irrespective of the etiology (apart from Tuberous Sclerosis Complex). Combined treatment (hormonal + vigabatrin) was less commonly used as first treatment (9%-12%, depending on etiology). Most institutions (63%) looked for failure of both hormonal therapy and vigabatrin (sequential or combined) before pursuing surgical treatment in patients with identifiable brain MRI lesions, but would also consider surgical treatment in patients with remission of electro-clinical epileptic spasms but continued epileptiform EEGs. SIGNIFICANCE: There are areas of consensus and variability in management of IESS in US institutions. Updated consensus guidelines addressing the comprehensive management of IESS are needed to help standardize and optimize care in these patients. PLAIN LANGUAGE SUMMARY: Infantile Epileptic Spasms Syndrome requires prompt diagnosis and initiation of appropriate treatment to improve developmental outcomes. In this survey of tertiary pediatric centers in the United States, we found areas of consensus (use of overnight video EEG at initial diagnosis, use of high-dose prednisolone as initial treatment, preference for sequential as opposed to combination therapy, use of the 2021 BASED score for EEG evaluation, and the early consideration of epilepsy surgery) and variability (type of genetic testing for diagnosis, choice of second and third treatments, use of antiseizure medications for persistently epileptic EEG) in management of these patients.

Indexed as

epileptic encephalopathyhypsarrhythmiaInfantile Epileptic Spasms Syndrome

Identifiers

PMID42569898
PMCPMC13452135

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.