Ann-Marie Nazzaro ^1*, Sally Owens ², W. Keith Hoots ³, Kelly L. Larson ⁴

¹ National Hemophilia Foundation
² Centers for Disease Control and Prevention-NCBDDD
³ University of Texas, Houston
⁴ City of New York Dept. of Health and Mental Hygiene

^* To whom correspondence should be addressed. E-mail: anazzaro{at}hemophilia.org.

	Abstract

Objectives. The National Hemophilia Foundation and the Centers for Disease Control and Prevention conducted a national survey focusing on knowledge about, attitudes toward, and behaviors associated with key prevention activities among youths with hemophilia and used the data gathered to design a health promotion campaign.

Methods. A national, random sample of 459 patients was drawn from 20 hemophilia treatment centers and 8 hemophilia associations; 110 (24%) of the respondents were young people. A telephone questionnaire was used to measure knowledge, behaviors, and barriers to prevention.

Results. Thirty-six percent of the youth respondents believed that joint disease cannot be prevented; 60% managed hemophilia by avoiding physical activity. Only 31% of the respondents treated bleeding episodes within 1 hour. Although hepatitis was a clear threat to this hemophilic cohort, 78% did now know transmission routes for hepatitis C, and 67% did not know transmission routes for hepatitis B.

Conclusions. Young people with chronic disorders need help understanding that they can prevent complications. We identified key messages for a hemophilia prevention campaign, including exercising to ensure healthy joints and treating bleeding episodes early and adequately.

Key Words: Adolescent Health, Chronic Disease, Health Education, Health Promotion, Prevention