Variations in Using Diagnosis Codes for Defining Age-Related Macular Degeneration Cohorts

Data harmonization is vital for secondary electronic health record data analysis, especially when combining data from multiple sources. Currently, there is a gap in knowledge as to how studies identify cohorts of patients with age-related macular degeneration (AMD), a leading cause of blindness. We...

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Vydáno v:Informatics (Basel) Ročník 11; číslo 2; s. 28
Hlavní autoři: Kalaw, Fritz Gerald Paguiligan, Chen, Jimmy S., Baxter, Sally L.
Médium: Journal Article
Jazyk:angličtina
Vydáno: Switzerland MDPI AG 01.06.2024
Témata:
Age related diseases
age-related macular degeneration
Bibliometrics
big data
Codes
Data analysis
Data mining
data standards
Datasets
Diagnosis
Disease
Electronic health records
Eye diseases
informatics
international classification of diseases
Macular degeneration
Medical records
Medicare
Methods
Observational studies
Ophthalmology
Terminology
United States
United States > US
data standards
electronic health records
informatics
big data
age-related macular degeneration
international classification of diseases
ISSN:2227-9709, 2227-9709
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Shrnutí:Data harmonization is vital for secondary electronic health record data analysis, especially when combining data from multiple sources. Currently, there is a gap in knowledge as to how studies identify cohorts of patients with age-related macular degeneration (AMD), a leading cause of blindness. We hypothesize that there is variation in using medical condition codes to define cohorts of AMD patients that can lead to either the under- or overrepresentation of such cohorts. This study identified articles studying AMD using the International Classification of Diseases (ICD-9, ICD-9-CM, ICD-10, and ICD-10-CM). The data elements reviewed included the year of publication; dataset origin (Veterans Affairs, registry, national or commercial claims database, and institutional EHR); total number of subjects; and ICD codes used. A total of thirty-seven articles were reviewed. Six (16%) articles used cohort definitions from two ICD terminologies. The Medicare database was the most used dataset (14, 38%), and there was a noted increase in the use of other datasets in the last few years. We identified substantial variation in the use of ICD codes for AMD. For the studies that used ICD-10 terminologies, 7 (out of 9, 78%) defined the AMD codes correctly, whereas, for the studies that used ICD-9 and 9-CM terminologies, only 2 (out of 30, 7%) defined and utilized the appropriate AMD codes (p = 0.0001). Of the 43 cohort definitions used from 37 articles, 31 (72%) had missing or incomplete AMD codes used, and only 9 (21%) used the exact codes. Additionally, 13 articles (35%) captured ICD codes that were not within the scope of AMD diagnosis. Efforts to standardize data are needed to provide a reproducible research output.
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Author Contributions: F.G.P.K. and S.L.B. conceptualized the study; gathered the data; reviewed the relevant articles; analyzed the data; and wrote, reviewed, revised, and finalized the manuscript. J.S.C. analyzed the data and revised and finalized the manuscript. All authors have read and agreed to the published version of the manuscript.
ISSN:2227-9709
2227-9709
DOI:10.3390/informatics11020028