Hemophilia Health Education and Prevention Funded Projects

Grandson and grandfather bicycling

The hemophilia program is the largest program in CDC’s Division of Blood Disorders. Our activities to support the hemophilia community include a wide range of health promotion and wellness programs. CDC has awarded funding for projects designed to promote health and prevent complications of bleeding disorders. Many of these projects address the needs of people at specific life stages. A brief description of these funded projects follows.

Hemophilia and AIDS/HIV Network for the Dissemination of Information (HANDI)

The National Hemophilia Foundation (NHF) was awarded funding to expand a national clearinghouse and information center on bleeding disorders known as HANDI . HANDI is a full-fledged resource center and is a one-stop shop for information for consumers, NHF chapters, researchers, and health care providers.

HANDI’s current library collection includes articles, reprints, textbooks, educational publications, CD-ROMs, and videos for response to inquiries received via telephone, e-mail, and Internet. Plans to expand HANDI’s reach and improve access to materials by providing them online are underway.

CDC is collaborating with NHF in evaluating the extent of materials available for youth, assessing gaps in these materials, and conducting formative research and message testing to guide the development of future materials and programs for youth.

Education for Newly Diagnosed Families

NHF was awarded funding to continue the “First Step” education program for newly diagnosed families. This program targets families new to the bleeding disorder community, as well as carrier families. Through the program, families gain information and resources on topics like diagnosis, management, treatment options, and strategies to prevent secondary conditions. The following new activities are planned:

  • Create the “Steps for Living” curriculum and an online community for networking and support.
  • Produce “Guidelines for Growing: First Step.” These guidelines will be produced for families to help address childhood development and transition issues in managing hemophilia care.
  • Develop a new e-mentoring program for patients and families.

Tools to Transition from Teen to Young Adult

NHF received funding to create age-specific, consumer-friendly curricula and materials for older children, teenagers, and young adults, concentrating on two age groups: 9- to 15-year-olds and 16- to 25-year-olds. These new learning modules, “Next Step” and “Stepping Out,” will build upon the First Step curriculum and fill the gap in education and programming for these age groups. Peer educators and champions for these materials will be identified from NHF’s National Youth Leadership Program.

The overall goal is to give children, teens, and young adults with bleeding disorders the confidence, skills, and tools they need to transition successfully to ad ulthood. The majority of youth in the two age groups will be connected to resources for self-care and advocacy. An online community, designed by and for youth, will reach older teens and young adults with similar information.

Making a Difference

Post-test data indicated that participation in the Blood Brotherhood program increased participants’ sense of emotional and social support and decreased their sense of isolation. For example, at post-test, only 5% of participants obtained scores indicating they were socially isolated compared with 14% at baseline. In addition, 30.5% of Blood Brothers at post-test reported feeling very socially connected compared with only 20% of Blood Brothers at pretest.

Wellness for Older Men with Bleeding Disorders

The Hemophilia Federation of America (HFA) received funding to expand Blood Brotherhood, a program to improve the health and quality of life of aging men with bleeding disorders. Blood Brotherhood provides opportunities for men with bleeding disorders to get together, in person and online, to discuss issues with each other and with professionals in the bleeding disorders community. New activities planned for Blood Brotherhood include online video and audio podcasts, educational materials with a focus on physical fitness, web-based articles, and an “Ask the Doc” area on the current chat site.

National Prevention Program

From September 1999 through February 2000, NHF and CDC conducted a national baseline telephone survey to assess prevention knowledge and health practices in the hemophilia community to inform development of an effective national prevention program. Survey results and knowledge in the field were used to identify priority messages for NHF’s National Prevention Program (NPP). The NPP is a public awareness campaign targeting people affected by bleeding disorders, their families, and health care providers. The NPP’s theme is “Do the 5!,” which includes the following five strategies for living a longer and healthier life:

  • Get an annual comprehensive checkup at a hemophilia treatment center.
  • Get vaccinated—hepatitis A and B are preventable.
  • Treat bleeds early and adequately.
  • Exercise and maintain a healthy weight to protect your joints.
  • Get tested regularly for bloodborne infections.

NHF disseminated the “Do the 5!” messages through its annual meetings; regional trainings; educational resources (HemAware, HANDI, eNotes, and its website); and other events and projects.

Between July 2008 and May 2009, CDC and NHF conducted a follow-up survey, the results of which were compared with data from the national baseline survey. The follow-up survey focused on many of the same areas as the baseline survey, including knowledge, attitudes, and behaviors associated with key prevention activities among youth and adults with hemophilia. In addition, the 2008–2009 follow-up survey collected information about the dissemination of the national “Do the 5!” prevention campaign messages and message recall of consumers. Both evaluations targeted adult men with hemophilia, parents of sons with hemophilia aged 9 years or younger, and youth aged 13–21 with hemophilia. Through this evaluation, we will learn more about the impact of the National Prevention Program and the extent that target audience members are aware of, and able to recall, the prevention messages of the “Do the 5!” campaign.

Boys (11-14) standing together with sports equipment

Promotion of Healthy Weight and Physical Activity

The Hemophilia Federation of America (HFA) was funded to launch “FitFactor: Strength, Flexibility, and Wellness,” a program to promote physical activity and healthy weight maintenance for people with hemophilia. HFA will produce exercise video podcasts, online resources, DVDs, and instructional guides to promote physical activity, healthy weight, and nutritional eating for adult men and adolescents with hemophilia.

Another CDC-funded program designed to help people with bleeding disorders maintain a healthy weight is NHF’s Fit for All, developed in partnership with the YMCA. The goals of this health promotion program include increasing participants’ physical activity levels and their intentions to maintain physical activity. Participants were offered a reduced-fee membership at their local YMCA and presented information on fitness and nutrition topics. Long-term objectives of Fit for All include increasing access to physical fitness facilities, increasing physical activity levels, and increasing knowledge of appropriate physical activities.

Prevention Education and Health Promotion for Amish

CDC funded the Children’s Hospital Medical Center of Akron to implement a prevention education and health promotion program for Amish community members living in Ohio. This program was designed to improve the oral health of people in the Amish community who have hemophilia. The program aims to increase the percentage of Amish patients with hemophilia who report having a dental home and receiving annual preventive dental screening and preventive care, increase knowledge of dental health techniques, and improve oral health. In addition, the project aims to improve knowledge, attitudes, and behaviors regarding the importance and early use of home infusion after a bleed among Amish patients with hemophilia.

Emergency Preparedness

To increase disaster preparedness skills and awareness, CDC collaborates with NHF and the American Thrombosis and Hemostasis Network (ATHN) to provide information, training, and materials for families with bleeding disorders. These activities help ensure people with hemophilia are prepared for a disaster or an event that may disrupt the continuity of their care. Tools such as NHF’s emergency “go-bags” with contact information for medical care and necessary emergency items have been developed and disseminated to affected bleeding disorder families. ATHN also developed and tested a wallet-sized flash drive designed to store current personal health information that is accessible to health care providers in the event of an emergency or disaster. For more information on emergency readiness tools, contact NHF’s information clearinghouse—known as HANDI—at 1-800-42-HANDI, and visit the ATHN website.