Over Half of U.S. Hemophilia Treatment Centers Do Not Follow NHF Guidelines for Factor VIII Prophylaxis in Severe Hemophilia A

Factor VIII prophylaxis every other day (qod) or three times weekly is recommended by the National Hemophilia Foundation to prevent joint bleeds in children with severe hemophilia A. An email survey of U.S. hemophilia treatment centers (HTCs) was conducted to help define actual current prophylaxis practices.

Of 62 HTCs that responded, prophylaxis is initiated on a three times weekly schedule in 29 HTCs (46.8 percent), twice weekly in 13 HTCs, and once weekly in 20 HTCs (32 percent). Central venous catheters are used to infuse factor prophylactically at 55 HTCs (89 percent). In 19 of the 62 responding HTCs (31 percent), central venous catheters are used in 100 percent of children initiating prophylaxis, while they are avoided altogether at seven other HTCs (11 percent).

Prophylaxis is initiated in 56 of the 62 responding HTCs (90 percent) after one or more bleeds, but after the first bleed in only 28 HTCs (25 percent). Despite a recommended standard of three times weekly prophylaxis, more than half of surveyed HTCs do not follow these guidelines, and nearly one-third initiate prophylaxis on a once weekly schedule to delay or avoid the need for central venous access.