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Validation of a PHIS Esophageal Atresia and Tracheoesophageal Fistula Cohort in ICD-10

Claire M Lawlor1, Ali Kamran2, John Bennett2

  • 1Department of Otolaryngology, Children's National Health System, Washington, District of Columbia, USA.

Otolaryngology--Head and Neck Surgery : Official Journal of American Academy of Otolaryngology-Head and Neck Surgery
|May 28, 2024
PubMed

Insights

This study validates a search method for identifying congenital esophageal atresia/tracheoesophageal atresia (EA/TEF) patients in the Pediatric Health Information System (PHIS) database. The validated method ensures accurate multi-institutional studies for rare diseases like EA/TEF.

Area of Science:

  • Pediatric Surgery
  • Health Informatics
  • Rare Disease Research

Background:

  • Congenital esophageal atresia/tracheoesophageal atresia (EA/TEF) is a rare condition requiring accurate patient identification for research.
  • The Pediatric Health Information System (PHIS) database is a valuable resource for multi-institutional studies.
  • Validating International Classification of Diseases, 10th Revision, Clinical Modification (ICD-10-CM) codes is crucial for cohort accuracy.

Purpose of the Study:

  • To validate a contemporary ICD-10-CM cohort for congenital EA/TEF in the PHIS database.
  • To establish a high-fidelity patient cohort for multi-institutional research on EA/TEF.
  • To demonstrate the utility of clinical databases for validating PHIS cohorts.

Main Methods:

  • Database study involving modification of existing search methods for ICD-10-CM.
  • Comparison of PHIS data against a single high-volume EA/TEF center's clinical database (October 2015 - July 2022).
  • Progressive cohort refinement using diagnosis codes, inclusion of specific conditions, and procedure codes.

Main Results:

  • The refined search yielded 93 patients in PHIS and 84 in the clinical database.
  • High accuracy was achieved with 99% sensitivity and 94% positive predictive value.
  • The validated method identified a cohort of 2479 EA/TEF patients across 49 children's hospitals.

Conclusions:

  • A validated search method for identifying EA/TEF patients in PHIS has been established.
  • Clinical databases are effective for validating PHIS-based cohorts.
  • This methodology enables improved studies on practice variability and outcomes for EA/TEF and other rare diseases.
Abstract

Keywords:
esophageal atresiatracheoesophageal fistula

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