Bleeding episodes appear to have a significant impact on both health related quality of life (HRQoL) and direct health costs in patients with severe hemophilia A, with even a single bleeding episode having significant effects on both regards, according to a study published in the Official Journal of The World Federation of Haemophilia.

“The prevalence of significant morbidities and the high cost of care associated with severe haemophilia A contribute to both impaired health-related quality of life (HRQoL) for patients and significant financial impact on healthcare budgets,” the authors wrote.

Because of the absence of data on the impact of bleeding episodes in HRQoL and direct health costs in hemophilia, the authors used data gathered in the study “Cost of Haemophilia across Europe a Socioeconomic Survey” to analyze how the number of bleeding episodes can affect HRQoL and direct health costs in a population of 947 patients with severe hemophilia A, defined as a factor VIII level below 1%.

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The HRQoL of each patient was assessed using the EuroQol 5-Dimension 3-level Utility index Score (EQ-5D-3L), a patient directed questionnaire in which a higher score is directly related to better HRQoL. The authors further categorized patients according to their annual bleeding rate (ARD), current and previous treatment regimes, and types of bleeds (minor and major).

Direct costs were subcategorized into drug-related costs and nondrug-related costs. The former ones were calculated using the average factor unit cost of each of the countries included in the study, and the former ones included items such as healthcare provider visits, hospitalizations, tests, and procedures.

Only 404 patients answered the EQ-5D-3L. The results showed that a higher ARD was directly related to a lower EQ-5D-3L score, indicating an inverse relationship between bleeding frequency and HRQL. Bleed severity had a lower impact on EQ-5D-3L than the ARD, thus suggesting that any bleed, regardless of severity, can have an important impact on HRQoL.

Bleeding was associated with higher direct drug-related costs and nondrug-related costs. The yearly mean direct costs of patients with at least 1 reported were approximately 200.000 euro, compared with 1333.00 euro in those without any bleeding episodes.

“Prevention of any bleeding episode is an important consideration for clinicians and patients when managing severe haemophilia A, in terms of quality of life and healthcare resource allocation,” the authors concluded.


O’Hara J, Noone D, Watt M. Relationship between bleeding episodes, health‐related quality of life and direct costs in adults with severe haemophilia a: secondary analyses from the Chess Study. Haemophilia. Published online June 30, 2022. doi:10.1111/hae.14616