Abstract
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 language | English (US) |
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Pages (from-to) | 490-495 |
Number of pages | 6 |
Journal | Journal of Pediatrics |
Volume | 144 |
Issue number | 4 |
DOIs | |
State | Published - Apr 2004 |
Externally published | Yes |
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ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health
Cite this
Effect of intracranial bleeds on the health and quality of life of boys with hemophilia. / Revel-Vilk, Shoshana; Golomb, Meredith; Achonu, Camille; Stain, Ann Marie; Armstrong, Derek; Barnes, Marcia A.; Anderson, Peter; Logan, William J.; Sung, Lillian; McNeely, Michael; Blanchette, Victor; Feldman, Brian M.
In: Journal of Pediatrics, Vol. 144, No. 4, 04.2004, p. 490-495.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Effect of intracranial bleeds on the health and quality of life of boys with hemophilia
AU - Revel-Vilk, Shoshana
AU - Golomb, Meredith
AU - Achonu, Camille
AU - Stain, Ann Marie
AU - Armstrong, Derek
AU - Barnes, Marcia A.
AU - Anderson, Peter
AU - Logan, William J.
AU - Sung, Lillian
AU - McNeely, Michael
AU - Blanchette, Victor
AU - Feldman, Brian M.
PY - 2004/4
Y1 - 2004/4
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=11144354682&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=11144354682&partnerID=8YFLogxK
U2 - 10.1016/j.jpeds.2003.12.016
DO - 10.1016/j.jpeds.2003.12.016
M3 - Article
C2 - 15069398
AN - SCOPUS:11144354682
VL - 144
SP - 490
EP - 495
JO - Journal of Pediatrics
JF - Journal of Pediatrics
SN - 0022-3476
IS - 4
ER -