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Accuracy of Diagnostic Coding for Sarcoidosis in Electronic Databases: A Population-Based Study.

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The accuracy of using electronic databases for sarcoidosis research is limited. The positive predictive value of the ICD-9 code for sarcoidosis was found to be relatively low, requiring further verification.

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Area of Science:

  • Epidemiology
  • Pulmonology
  • Medical Informatics

Background:

  • Electronic databases are increasingly used for epidemiologic studies of sarcoidosis.
  • The accuracy of diagnostic codes for sarcoidosis in these databases is not well-established.

Purpose of the Study:

  • To evaluate the accuracy of the International Classification of Diseases, Ninth Revision (ICD-9) code 135 for identifying sarcoidosis cases in electronic health records.
  • To determine the positive predictive value (PPV) of sarcoidosis diagnostic codes.

Main Methods:

  • Utilized the Rochester Epidemiology Project medical record-linkage system for Olmsted County, Minnesota (1995-2013).
  • Identified potential adult sarcoidosis cases using ICD-9 code 135.
  • Reviewed complete medical records, confirming diagnoses via histopathology (non-caseating granuloma), radiographic findings, and clinical presentation.
  • Calculated PPV based on confirmed cases versus coded cases.

Main Results:

  • A total of 366 patients had at least one sarcoidosis code; 224 were confirmed, yielding a PPV of 61.2%.
  • For patients with at least two sarcoidosis codes (separated by ≥30 days), 268 were identified, with 205 confirmed, resulting in a PPV of 76.5%.

Conclusions:

  • The positive predictive value of the ICD-9 code for sarcoidosis is relatively low.
  • Further verification of cases is necessary for studies relying on electronic databases for sarcoidosis research.