Using healthcare claims to identify women and girls with hemophilia A, a male-predominant disorder, is still a challenge due to unclear diagnostic nomenclature, according to a study in Haemophilia.

A group of investigators conducted a study to characterize women and girls with hemophilia A (HA) or HA-related symptoms based on diagnosis and/or therapy codes in an effort to characterize their HA/bleeding-related treatments and to determine the healthcare burden and the appropriateness of healthcare claims and medical charts.

The research team examined clinical data for patients with commercial or Medicare part D insurance claims who had diagnostic or procedural codes for HA, HA carrier status, congenital factor VIII deficiency, or a variety of conditions or procedures that may be associated with bleeding in susceptible patients.

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Of 353 eligible patients identified for study, the researchers received charts for 86 patients; clinical review identified HA in 8 patients. All participants were ages 35 years and older (mean age, 60.4 years).

The mean Charlson Comorbidity Index score was 2.5. Comorbidities most commonly included coagulation or hemorrhagic conditions, urinary system diseases, fluid or electrolyte disorders, nontraumatic joint disorders, and other connective tissue diseases.

During the study observation period of 18 months, claims for 6 patients included a diagnosis code related to HA, and the same number of patients had claims with diagnosis codes related to von Willebrand disease.

Throughout the study period, mean all-cause healthcare utilization metrics for these 8 patients included 120 pharmacy fills, 54 office or outpatient visits, 5 emergency room visits, and 2 inpatient hospitalizations. During the 18-month study period, the mean all-cause cost associated with healthcare utilization in these patients was $112,090, with $86,694 used for medical care and $25,396 associated with pharmacy expenses.

“Although the existence of HA among female patients is established, identifying them and characterizing their healthcare remains problematic,” the authors wrote.

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The investigators concluded that results of this study suggest that female patients with HA may experience a considerable healthcare-related burden and that larger registries and future prospective studies are required to improve characterization of HA among women in the US healthcare system.

Disclosure: This study was funded by Bayer and Optum performed the study. Several study authors have declared affiliations with Bayer and Optum. Please see the original reference for a full list of authors’ disclosures.


Farej R, Batt K, Afonja O, et al. Characterizing female patients with haemophilia A: administrative claims analysis and medical chart review [published online April 8, 2020]. Haemophilia. doi: 10.1111/hae.13981