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Administrative Databases: Friend or Foe in Paediatric Cardiomyopathy
Jennifer Conway1,2, Olesya Barrett3, Tara Pidborochynski1
1Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.
CJC Pediatric and Congenital Heart Disease
|January 11, 2024
Summary
Administrative health data can accurately identify pediatric cardiomyopathy (CM) in Canada. An algorithm using hospitalization or two ambulatory visits shows promise for studying this rare childhood disease.
Area of Science:
- Pediatric Cardiology
- Health Informatics
- Epidemiology
Background:
- Cardiomyopathy (CM) is a rare but serious childhood disease with limited Canadian data.
- Single-center studies lack power for rare diseases, necessitating alternative data sources.
- Administrative health data offers a potential resource for studying pediatric CM.
Purpose of the Study:
- To validate International Classification of Diseases (ICD)-based algorithms for identifying pediatric CM in health databases.
- To compare algorithm accuracy against a clinical registry serving as the gold standard.
- To enable comprehensive research on pediatric CM in Canada.
Main Methods:
- A clinical registry of pediatric CM cases was compiled from 2013-2021.
- Patient data were linked to administrative health databases via Unique Lifetime Identifiers.
- ICD-10 codes for CM were used to develop and evaluate algorithms, calculating accuracy metrics.
Main Results:
- The registry included 90 CM patients and 249 controls.
- Algorithms demonstrated high negative predictive value for ruling out CM.
- An algorithm combining hospitalization or two ambulatory visits showed the best performance for diagnosing CM.
Conclusions:
- Administrative databases, integrating inpatient and outpatient data, can identify pediatric CM with acceptable accuracy.
- The validated algorithm facilitates large-scale studies of pediatric CM across Canada.
- This approach supports future research into the epidemiology and management of childhood CM.
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