Purpose: Early access to specialized mutlidisciplinary care and education is critical to the prevention of the chronic complications of hemophilia, a rare, inherited bleeding disorder. To facilitate these early interventions, the region I and III MCHB and CDC funded hemophilia treatment center programs (HTCs) conducted two conferences for parents of children with hemophilia. The goal of the conferences was to provide medical and psychosocial information, emphasize the importance of the HTC services, and offer networking opportunities. Methods:. The effectiveness of the program was evaluated by administration of a demographic survey, program evaluation, and a pre- and post-test knowledge assessment. Results: 74 out of 80 participants completed the pre- and post tests.. At baseline, parents had the greatest knowledge regarding genetic inheritance (90%); signs of bleeding (90%); discipline issues (95%), stages of development (97%), sibling issues (96%); and universal precautions (90%). The greatest increase in knowledge was in: prevention of bleeding complications, (44%), sites of serious bleeds (38%), available HTC services (40%), and advantages of utilizing comprehensive care (36%). Relevance: Although the majority of families were enrolled in HTCs, they lacked knowledge of the availability and advantages of services.. At baseline, participants had a good understanding of the psychosocial issues but lacked knowledge of the complex treatment of hemophilia issues and the prevention of complications. These conferences appeared to be effective in expanding the parents understanding of the treatment of hemophilia, prevention of its complications, and importance of comprehensive care; as well as reinforced participants’ awareness of psychosocial issues.
Learning Objectives: At the conclusion of the session the participant will be able to: 1. Describe an early intervention program to educate parents of children with a rare chronic disorder. 2. Identify 3 educational needs of parents with young children with hemophilia. 3. Discuss the importance of offering programs that promote early access to comprehensive care services
Keywords: Access and Services, Prevention
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: none
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.