title: Both hemophilia health care providers and hemophilia a carriers report that carriers have excessive bleeding.
abstract: BACKGROUND
  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.
  
  
  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).
  
  
  CONCLUSIONS
  Hemophilia A carriers self-report a higher frequency of bleeding than previously acknowledged, and have a preference for earlier testing to confirm carrier status.
authors.affiliation: *Department of Pediatric Hematology-Oncology, Vanderbilt University †Meharry Medical College, Nashville ‡Sewanee University of the South, Sewanee, TN.
authors.forename: Allison
authors.initials: A
authors.lastname: Paroskie
authors.forename: Olatunde
authors.initials: O
authors.lastname: Oso
authors.forename: Benjamin
authors.initials: B
authors.lastname: Almassi
authors.forename: Michael R
authors.initials: MR
authors.lastname: DeBaun
authors.forename: Robert F
authors.initials: RF
authors.lastname: Sidonio
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D003625:Data Collection; D005169:Factor VIII / Q000378:metabolism; D005260:Female; D006282:Health Personnel; D006467:Hemophilia A / Q000097:blood / Q000453:epidemiology*; D006470:Hemorrhage / Q000097:blood / Q000453:epidemiology*; D006579:Heterozygote; D006801:Humans; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires
chemical_list: C078147:F8 protein, human; D005169:Factor VIII