Both hemophilia health care providers and hemophilia a carriers report that carriers have excessive bleeding.

Paroskie A, Oso O, Almassi B, DeBaun MR, Sidonio RF
J Pediatr Hematol Oncol. 2014 36 (4): e224-30

PMID: 24309601 · PMCID: PMC4106130 · DOI:10.1097/MPH.0000000000000022

INTRODUCTION - Hemophilia A, the result of reduced factor VIII activity, is an X-linked recessive bleeding disorder. Previous reports of hemophilia A carriers suggest an increased bleeding tendency. Our objective was to determine the attitudes and understanding of the hemophilia A carrier bleeding phenotype, and opinions regarding timing of carrier testing from the perspective of both medical providers and affected patients. Data from this survey were used as preliminary data for an ongoing prospective study.

MATERIALS AND METHODS - An electronic survey was distributed to physicians and nurses employed at Hemophilia Treatment Centers, and hemophilia A carriers who were members of Hemophilia Federation of America. The questions focused on the clinical understanding of bleeding symptoms and management of hemophilia A carriers, and the timing and intensity of carrier testing.

RESULTS - Our survey indicates that 51% (36/51) of providers compared with 78% (36/46) of carriers believe that hemophilia A carriers with normal factor VIII activity have an increased bleeding tendency (P<0.001); 72% (33/36) of hemophilia A carriers report a high frequency of bleeding symptoms. Regarding carrier testing, 72% (50/69) of medical providers recommend testing after 14 years of age, conversely 65% (29/45) of hemophilia A carriers prefer testing to be done before this age (P<0.001).

DISCUSSION - Hemophilia A carriers self-report a higher frequency of bleeding than previously acknowledged, and have a preference for earlier testing to confirm carrier status.

MeSH Terms (13)

Adult Cross-Sectional Studies Data Collection Factor VIII Female Health Personnel Hemophilia A Hemorrhage Heterozygote Humans Male Middle Aged Surveys and Questionnaires

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