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Validity of administrative health data case definitions for identifying polycystic ovary syndrome: a systematic
Sophie Hu1, Sophie Lalonde-Bester2, Jenna Salem3
1Department of Internal Medicine, University of Manitoba, Winnipeg, MB, Canada.
Study Question:
What is the validity of published administrative health data case definitions of polycystic ovary syndrome (PCOS) compared with reference standards?
Summary Answer:
Due to the limited number of eligible studies, drawing definitive conclusions is challenging; however, this review highlights significant gaps and variability in current PCOS case definitions, underscoring the need for standardized case definitions in future research.
What Is Known Already:
Administrative health data offer the opportunity to evaluate health outcomes and disease epidemiology at a population-level. Currently, the validity of existing administrative health data case definitions for PCOS is unknown.
Study Design, Size, Duration:
A systematic review of the literature was conducted on full-text English-language articles up to July 2023, using the MEDLINE and EMBASE databases.
Participants/Materials, Setting, Methods:
Two reviewers independently screened titles, abstracts and full texts, extracted data, assessed study quality and graded validity. A random effects meta-analysis was conducted to pool reported validity measures and heterogeneity was examined.
Main Results And The Role Of Chance:
The review included four eligible articles consisting of three cross-sectional studies and one retrospective cohort study. Two studies defined PCOS using the Rotterdam Criteria, one study used self-report, and one used a clinical gold standard. All case definitions included the International Classification of Diseases (ICD)-9 code 256.4 for 'polycystic ovaries' and three studies used E28.2 for 'polycystic ovarian syndrome'. Three studies reported positive predictive value (PPV), which ranged from 30 to 96%. One study reported both PPV (96%) and sensitivity (50%) for one case definition. The pooled PPV estimate for the ICD code-based case definitions was 88% (95% confidence interval 82-95%; I2 = 100%). One study reported fair agreement (percent agreement= 90.3, κ = 0.27, percent agreement bias adjusted κ = 0.81). Overall, the risk of bias of the included studies was low.
Limitations, Reasons For Caution:
There were limited number of validations and precision indices of validations.
Wider Implications Of The Findings:
Further validation of these case definitions in other administrative health datasets, and development of novel coding algorithms is required to inform future population-based studies in PCOS.
Study Funding/Competing Interest(S):
No external funding was used and there are no disclosures.
Registration Number:
PROSPERO CRD42023385617.
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