Deerfield, Ill., March 16, 2006 – Results from an international survey of practice patterns for the management of patients with hemophilia A, recently published in Haemophilia (volume 11), the official journal of the World Federation of Hemophilia, provides the first opportunity to compare how hemophilia A is treated in 19 different countries* . Survey results show variations in treatment from region to region, and allow clinicians to have a baseline against which to measure future studies about treatment practice patterns. The survey was sponsored by Baxter Healthcare Corporation, a global leader in hemophilia therapy, and was developed with the company's advisory panel of hemophilia nurses.

 

“These survey results provide data that will help inform the hemophilia community about how the disease is treated from country to country,” said Sue Geraghty, RN, MBA from Mountain States Regional Hemophilia and Thrombosis Center, University of Colorado Health Sciences Center, Denver, and a lead author of the paper. “We found particular differences in treating hemophilia A with on-demand infusions of clotting factor versus prophylactic use of the therapy and also gained comparative information about how nurses view their role and autonomy in treating patients.”

Key findings from the survey include:

 

Prophylaxis versus on-demand therapy

 

It is important to note that prophylaxis is not an approved therapy regimen in some countries, including the United States. On-demand is the approved dosage regimen for most Factor VIII therapies in the United States.

• The majority of patients with severe hemophilia A received on-demand therapy in the 19 countries surveyed. Overall, 37 percent of patients were prescribed prophylaxis, while 54 percent received on-demand therapy.
• Practice patterns differed markedly between some countries. For example, 53 percent of patients with severe hemophilia A in the United Kingdom received prophylactic therapy, while 93 percent of severe hemophilia A patients in Sweden received prophylactic therapy.
• The top five perceived barriers to prophylaxis treatment were also identified by the nurses. These include infrequent bleeds (60 percent), venous access (59 percent), cost (45 percent), risks associated with plasma-derived products (39 percent) and patient age (37 percent). The level of importance for these barriers differed from country to country.

 

Nursing practices in hemophilia management

• The mean ratio of nurses to patients with hemophilia A was 1.6 nurses/110 patients per treatment center.
• The majority of nurses (71 percent) felt that they were fully or mostly autonomous in their activities.

 

Patient compliance

• “Very high” and “high” patient adherence to therapy was strongest during early childhood (0-12 years: 90 percent) – most likely due to family supervision – but fell with older patients (13-18 years: 54 percent; 19-28 years: 36 percent; >28 years: 47 percent)
• The most frequently cited factors affecting patients' compliance to therapy were: inability to understand potential benefits (75 percent of respondents); denial (67 percent ); poor venous access (66 percent ); lack of parental/family commitment (63 percent ); interference with lifestyle (62 percent ); teenage rebellion (48 percent ) and lack of time (42 percent ).

 

The survey was developed by the Global Nurse Symposium Planning Committee, and was designed to improve the global understanding of current hemophilia A practice patterns, factors that influence them and how they change over time. Questions were categorized by treatment practices at individual hemophilia centers, nursing roles and responsibilities and personal observations and opinions. Of the 274 hemophilia treatment centers that received the questionnaire, 147 responded, providing data from 16,115 patients with hemophilia A around the world.

 

“This survey provides an excellent resource for information on global practice patterns in the treatment of severe hemophilia A,” said Bruce Ewenstein, M.D., Ph.D., global medical director for hemophilia therapies at Baxter . “Baxter is proud to have sponsored the Global Nurse Symposium, and looks forward to supporting the future efforts of this group, as we believe it will enable hemophilia treaters to obtain a greater body of knowledge of global hemophilia care, ultimately leading to improvements in treatment worldwide.”

 

About Hemophilia A

 

People with hemophilia A do not produce adequate amounts of factor VIII, which is necessary for blood to effectively clot. If untreated, patients with severe hemophilia A have a greatly reduced life expectancy. According to the World Health Organization, more than 400,000 people in the world have hemophilia, corresponding to a prevalence of 15 to 20 in every 100,000 males born worldwide.

 

About Baxter

 

Baxter Healthcare Corporation is the principal U.S. operating subsidiary of Baxter International Inc. (NYSE:BAX). Baxter International Inc., through its subsidiaries, assists healthcare professionals and their patients with the treatment of complex medical conditions, including cancer, hemophilia, immune disorders, kidney disease and trauma. The company applies its expertise in medical devices, pharmaceuticals and biotechnology to make a meaningful difference in patients' lives.

 

 

*Data were collected from the following countries: Australia; Belgium; Brazil; Canada; Finland; Hungary; Iceland; Israel; Japan; Malaysia; Mexico; the Netherlands; New Zealand; South Africa; Spain; Sweden; Taiwan; UK; and USA.

 

S. Geraghty, T. Dunkley, C. Harrington, K. Lindvall, J. Maahs, J. Sek, Practice patterns in haemophilia A therapy – global progress towards optimal care, Haemophilia 2006 Jan;12(1):75-81.