Validation of alopecia coding in US claims data among women of childbearing age

Accurately identifying alopecia in claims data is important to study this rare medication side effect.

To develop and validate a claims-based algorithm to identify alopecia in women of childbearing age.

We linked electronic health records from a large healthcare system in Massachusetts (Mass General Brigham) with Medicaid claims data from 2016 through 2018 to identify all women aged 18 to 50 years with an ICD-10 code for alopecia, including alopecia areata, androgenic alopecia, non-scarring alopecia, or cicatricial alopecia, from a visit to the MGB system. Using eight predefined algorithms to identify alopecia in Medicaid claims data, we randomly selected 300 women for whom we reviewed their charts to validate the alopecia diagnosis. Positive predictive values (PPVs) were computed for the primary algorithm and seven algorithm variations, stratified by race.

Out of 300 patients with at least 1 ICD-10 code for alopecia in the Medicaid claims, 286 had chart-confirmed alopecia (PPV = 95.3%). The algorithm requiring two diagnosis codes plus one prescription claim for alopecia treatment identified 55 patients (PPV = 100%). The algorithm requiring 1 diagnosis code for alopecia plus 1 procedure claim for intralesional triamcinolone injection identified 35 patients (PPV = 100%). Across all 8 algorithms tested, the PPV varied between 95.3% and 100%. The PPV for alopecia ranged from 94% to 100% in White and 96%-100% in 48 non-White women. The exact date of alopecia onset was difficult to determine in charts.

At least one recorded ICD-10 code for alopecia in claims data identified alopecia in women of childbearing age with high accuracy.