Effect of intracranial bleeds on the health and quality of life of boys with hemophilia☆
Section snippets
Study design
We studied an inception cohort from the Hospital for Sick Children Pediatric Comprehensive Care Hemophilia Center. This study was approved by the Hospital for Sick Children Research Ethics Board, and informed consent was obtained from all study subjects' parents and all study subjects able to consent. Subjects were recalled for on-site testing at the Hospital for Sick Children, and all examiners were blinded with respect to participants' ICH history.
Study population
Eligible subjects were identified by a review
Study population
Of 172 patients with either hemophilia A or B, ranging in severity from mild to severe, 18 (10%) had at least one episode of ICH (Table I). Sixteen boys with hemophilia and a history of at least one ICH (total, 22 ICH episodes), and 32 matched (1:2) controls participated in this outcome study. Two boys with hemophilia and a history of ICH did not consent to participate in the study (Table I, subjects 17 and 18). The reasons for refusal were parental refusal in one boy and transition to another
Discussion
We found that boys with hemophilia and ICH have a worse clinical outcome, especially in the domain of QoL, than other boys with hemophilia. The long-term outcomes in an unselected population of boys with hemophilia and ICH were assessed through the use of multiple standardized tests, and the effect of having hemophilia was controlled by using boys with hemophilia as matched controls. Boys with ICH differed from the control group in three demographic variables: higher percentage of inhibitors,
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Supported by the Aventis Behring Canada competition for hemophilia/von Willebrand disease bleeding disorders. Dr Revel-Vilk is a recipient of the Baxter Bioscience Pediatric Hemostasis Fellowship at the Hospital for Sick Children, Toronto, Canada (2001-2002). Dr Feldman holds a Canada Research Chair in Childhood Arthritis.