The results of a national survey conducted by the National Hemophilia Foundation (NHF) and the Centers for Disease Control and Prevention (CDC) appeared in the September 2006 issue of the American Journal of Public Health. The survey, “Knowledge, Attitudes, and Behaviors of Youths in the U.S. Hemophilia Population: Results of a National Survey,” focused on prevention in the U.S. hemophilia population.
The survey was conducted using a random sample of 459 patients taken from 20 hemophilia treatment centers and eight hemophilia associations. Of those respondents, 110 (24%) were 13-21 years old. The phone surveys measured knowledge, behaviors and barriers to prevention.
There were several significant findings among the younger respondents. Results showed that 36% believed that joint disease is not preventable and 60% avoided physical activity. Only 31% treated bleeding episodes within one hour. In addition, 78% of respondents were unaware of the transmission routes for hepatitis C, while 67% were not aware of the transmission routes for hepatitis B.
The authors concluded that young people with chronic disorders need targeted prevention messages about steps they can take to prevent complications associated with their bleeding disorder. Survey results helped NHF and CDC develop “Do the 5!,” a series of prevention tips that are part of NHF’s National Prevention Program (NPP). Learn more about NPP and its theme Do the 5!