Evidence map›Paper›PMID 37498137›Full record

ArticleEpilepsia2023

Creating rare epilepsy cohorts using keyword search in electronic health records.

Kristen Barbour, Niu Tian, Elissa G Yozawitz, Steven Wolf, Patricia E McGoldrick, Tristan T Sands, Aaron Nelson, Natasha Basma, Zachary M Grinspan

Abstract read
In one paragraph

Article in Epilepsia, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
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

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

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

3 citing papers in PubMed.

  1. Article
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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

9 authors.

Kristen BarbourUniversity of California San Diego, San Diego, California, USA.ORCID 0000-0003-0293-0108
Niu TianCenters for Disease Control and Prevention, Atlanta, Georgia, USA.ORCID 0000-0001-9380-0207
Elissa G YozawitzMontefiore Medical Center, Albert Einstein College of Medicine, Bronx, New York, USA.ORCID 0000-0001-8230-8364
Steven WolfBoston Children's Health Physicians, Hawthorne, New York, USA.
Patricia E McGoldrickBoston Children's Health Physicians, Hawthorne, New York, USA.
Tristan T SandsColumbia University Irving Medical Center, New York, New York, USA.ORCID 0000-0001-7285-1195
Aaron NelsonNew York University Langone Medical Center, New York, New York, USA.
Natasha BasmaWeill Cornell Medicine, New York, New York, USA.
Zachary M GrinspanWeill Cornell Medicine, New York, New York, USA.ORCID 0000-0001-6705-0932

Funding

RENYC. Rare Epilepsies in New York City: Epidemiology and Health Outcomes. Improving Surveillance with Text Processing of Clinical Notes in Electronic Health Records.U01DP006089 · DP · WEILL MEDICAL COLL OF CORNELL UNIV · PI GRINSPAN, ZACHARY MICHAEL · 2015 to 2017
$855k
Intramural CDC HHS CC999999NCCDPHP CDC HHS U01 DP006089
6 · The paper itself

Abstract

objectiveAdministrative codes to identify people with rare epilepsies in electronic health records are limited. The current study evaluated the use of keyword search as an alternative method for rare epilepsy cohort creation using electronic health records data.

methodsData included clinical notes from encounters with International Classification of Diseases, Ninth Revision (ICD-9) codes for seizures, epilepsy, and/or convulsions during 2010-2014, across six health care systems in New York City. We identified cases with rare epilepsies by searching clinical notes for keywords associated with 33 rare epilepsies. We validated cases via manual chart review. We compared the performance of keyword search to manual chart review using positive predictive value (PPV), sensitivity, and F-score. We selected an initial combination of keywords using the highest F-scores.

resultsData included clinical notes from 77 924 cases with ICD-9 codes for seizures, epilepsy, and/or convulsions. The all-keyword search method identified 6095 candidates, and manual chart review confirmed that 2068 (34%) had a rare epilepsy. The initial combination method identified 1862 cases with a rare epilepsy, and this method performed as follows: PPV median = .64 (interquartile range [IQR] = .50-.81, range = .20-1.00), sensitivity median = .93 (IQR = .76-1.00, range = .10-1.00), and F-score median = .71 (IQR = .63-.85, range = .18-1.00). Using this method, we identified four cohorts of rare epilepsies with over 100 individuals, including infantile spasms, Lennox-Gastaut syndrome, Rett syndrome, and tuberous sclerosis complex. We identified over 50 individuals with two rare epilepsies that do not have specific ICD-10 codes for cohort creation (epilepsy with myoclonic atonic seizures, Sturge-Weber syndrome). SIGNIFICANCE: Keyword search is an effective method for cohort creation. These findings can improve identification and surveillance of individuals with rare epilepsies and promote their referral to specialty clinics, clinical research, and support groups.

Indexed as

Epilepsies, MyoclonicEpilepsyLennox Gastaut SyndromeElectronic Health RecordsHumansSeizuresautomatedclinical datacohort creationgenetic epilepsynatural language processing

Identifiers

PMID37498137
PMCPMC10984273

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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.