Effect of intracranial bleeds on the health and quality of life of boys with hemophilia

Shoshana Revel-Vilk, Meredith R. Golomb, Camille Achonu, Ann Marie Stain, Derek Armstrong, Marcia A. Barnes, Peter Anderson, William J. Logan, Lillian Sung, Michael McNeely, Victor Blanchette, Brian M. Feldman

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Objectives: To compare the health, physical function, and quality of life (QoL) of boys with hemophilia with and without a history of intracranial hemorrhage (ICH). Study design: Of 172 patients with hemophilia A or B, 18 (10%) had at least one episode of ICH. For outcome assessments, 16 of 18 (89%) boys with ICH and 32 controls, matched (1:2) for age and severity of hemophilia, were available. The outcome measures were neurologic function, physical function, and QoL. Results: The median age of the boys at the first ICH was 5.9 months (range, 1 day to 2.7 years). Boys with ICH had a higher incidence of inhibitors and lower mean household income. Neurologic examination was abnormal in seven of 16 (44%) boys with ICH and nine of 32 (28%) controls (P = .3). The mean physical function in boys with ICH was lower (82% ± 25%) compared with controls (93.5% ± 12%, P = .045). The QoL was decreased in boys with ICH compared with controls (6.8 ± 3.2 vs 8.5 ± 1.4, P = .02), whereas health-related QoL was not significantly different between groups. Conclusion: The poorer long-term outcomes of boys with hemophilia appropriately treated for ICH, especially in the domain of QoL, suggest that new strategies to prevent ICH and to manage ICH effectively in this population are needed.

Original languageEnglish (US)
Pages (from-to)490-495
Number of pages6
JournalJournal of Pediatrics
Issue number4
StatePublished - Apr 2004
Externally publishedYes

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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    Revel-Vilk, S., Golomb, M. R., Achonu, C., Stain, A. M., Armstrong, D., Barnes, M. A., Anderson, P., Logan, W. J., Sung, L., McNeely, M., Blanchette, V., & Feldman, B. M. (2004). Effect of intracranial bleeds on the health and quality of life of boys with hemophilia. Journal of Pediatrics, 144(4), 490-495. https://doi.org/10.1016/j.jpeds.2003.12.016