Knowledge, attitudes, and behaviors of youths in the US hemophilia population: results of a national survey.
OBJECTIVE
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.
Nazzaro
Ann-Marie
AM
National Hemophilia Foundation, New York, NY 10001, USA. anazzaro@hemophilia.org
Owens
Sally
S
Hoots
W Keith
WK
Larson
Kelly L
KL
D000293:Adolescent; D000328:Adult; D015444:Exercise; D005260:Female; D015438:Health Behavior; D007722:Health Knowledge, Attitudes, Practice; D006306:Health Surveys; D006467:Hemophilia A / Q000150:complications* / Q000628:therapy; D006509:Hepatitis B / Q000635:transmission; D006526:Hepatitis C / Q000635:transmission; D006801:Humans; D007592:Joint Diseases / Q000209:etiology / Q000517:prevention & control; D008297:Male; D014481:United States