The National Hemophilia Foundation’s (NHF) Nursing Working Group has been revising and expanding Nurses’ Guide to Bleeding Disorders (NGBD). First published in 1995, the guide provides comprehensive information and practical ideas to assist nurses at all levels in caring for patients with bleeding disorders.

Over the last several years, the NGBD has further evolved into a readily accessible online resource, serving as an introduction to nurses new to coagulation and an information source for more experienced nurses. New chapters, which continue to be added in downloadable PDF format, cover a wide range of topics such as hepatitis, orthopedics, pain, rare bleeding disorders and women with bleeding disorders.

Here NHF highlights the chapter called “Prophylaxis,” written by Joni Osip, RN, MS, and Kerry Hansen, RN, BS. The chapter first lays out the background, terminology and clinical reasoning associated with a preventive therapeutic approach to managing a bleeding disorder. The myriad advantages described include a reduction in bleeds, enhanced joint health and overall improvement in quality of life. In addition to its clear benefits, the authors also describe common hurdles to successful prophylaxis, including issues of adherence, cost/reimbursement and complications linked to the use of central venous access devices. Lastly, the chapter stresses the importance of education for families undertaking prophylaxis and the hemophilia treatment center staff’s primary role in that effort.      

View this and other chapters of the NGBD.

Download the presentation, "Inhibitor Testing: State of the Art".