Phenotype Algorithms to Identify Hidradenitis Suppurativa Using Real-World Data: Development and Validation Study

Abstract

Background Hidradenitis suppurativa (HS) is a potentially debilitating, chronic, recurring inflammatory disease. Observational databases provide opportunities to study the epidemiology of HS. Objective This study’s objective was to develop phenotype algorithms for HS suitable for epidemiological studies based on a network of observational databases. Methods A data-driven approach was used to develop 4 HS algorithms. A literature search identified prior HS algorithms. Standardized databases from the Observational Medical Outcomes Partnership (n=9) were used to develop 2 incident and 2 prevalent HS phenotype algorithms. Two open-source diagnostic tools, CohortDiagnostics and PheValuator, were used to evaluate and generate phenotype performance metric estimates, including sensitivity, specificity, positive predictive value (PPV), and negative predictive value. Results We developed 2 prevalent and 2 incident HS algorithms. Validation showed that PPV estimates were highest (mean 86%) for the prevalent HS algorithm requiring at least two HS diagnosis codes. Sensitivity estimates were highest (mean 58%) for the prevalent HS algorithm requiring at least one HS code. Conclusions This study illustrates the evaluation process and provides performance metrics for 2 incident and 2 prevalent HS algorithms across 9 observational databases. The use of a rigorous data-driven approach applied to a large number of databases provides confidence that the HS algorithms can correctly identify HS subjects.