Estimating Intracranial Hemorrhage Burden with Claims Data for Hemophilia A

Intracranial hemorrhage (ICH) is a serious, life-threatening side effect of hemophilia A (HA), and occurs in almost half of people with HA (PwHA). ICH is associated with high rates of comorbidity, health care service use, and costs, according to a study published in the journal Blood.

To conduct this study, researchers used a validated claims-based HA algorithm to assess administrative claims data of 69 PwHA with at least one ICH diagnosis aged 65 years and younger. PwHA with ICH were identified as those with at least one claim involving ICD-9-CM/ICD-10-CM diagnosis codes for ICH. PwHA with ICH were required to have at least six months of continuous enrollment from the index event. The authors then identified clinical conditions were identified using ICD-9-CM/ICD-10-CM diagnosis codes, and major bleeds were discerned using a previously developed algorithm.

Following analysis, the results showed that approximately 38% of individuals had evidence of at least one major bleeding episode in the six months following the index ICH event, while 16% showed evidence of inhibitors. The average Charlson Comorbidity Index score of those in the ICH cohort was 0.9, and 33.3% of patients had a diagnosis of joint/musculoskeletal conditions. Also, the researchers observed that 32% of patients had chronic pain diagnosis, 17% showed evidence of fracture, 16% had a mental health-related diagnosis including depression/anxiety, and almost 15% had evidence of paraplegia/hemiplegia.

In the six months following the index ICH event, 38% of the individuals had at least one ICU visit, 33% had at least one non-ICU in-patient stay, 64% had at least one ER visit, 80% of patients had at least one outpatient hospital visit, 93% had at least one office visit, almost 28% had evidence of diabetic macular edema (DME), and 68% had at least one claim for FVIII prescription medication with an average of five claims in the post-study period. Furthermore, the results showed that the average all-cause healthcare costs among PwHA with ICH was $201,595 over six months following the ICH event, and medical costs accounted for over 25% ($50,937) of these costs.

“Although rare, ICH still occurs in PwHA including younger children,” the researchers wrote. “ICH was associated with high comorbidity burden, health care service utilization, and costs. Due to unavailability of mortality data, the current analysis may still be an underestimate of the true burden of ICH in PwHA.”

They added: “Early management and treatment of HA may reduce the burden of ICH in this population.”

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