Recently published results of an international survey shed light on the management of patients with hemophilia A in 19 countries. The survey, which was developed by the Global Nurse Symposium Planning Committee, reflected current trends in treatment, nursing practices and patient compliance. “Practice Patterns in Haemophilia A Therapy -- Global Progress Towards Optimal Care,” appeared in the January issue of Haemophilia.
It was found that overall, the majority of patients with severe hemophilia A received on-demand treatment (54%) compared to those receiving prophylactic (preventive) therapy (37%). Results showed significant disparities between certain countries. While 53% of severe hemophilia A patients in the United Kingdom are on prophylaxis, 93% in Sweden receive prophylactic therapy. The commonly reported barriers to practicing prophylaxis included infrequent bleeds (60%), venous access (59%) and cost (59%).
The mean ratio of nurses to patients with hemophilia A was 1.6 nurses to 110 patients per treatment center. In addition, 71% of nurses surveyed said they felt mostly or fully autonomous in their work. In the United States, 83% of all treatment center nurses surveyed said they felt professionally autonomous.
Survey results showed that overall rates of compliance to treatment were highest among younger patients (0-12 years at 90%) and steadily dropped in older ones (13-18 years at 54%, 19-28 years at 36%). The commonly cited barriers to patient adherence were an inability to understand potential benefits (75%), denial (67%), poor venous access (66%), lack of parental/family commitment (63%), interference with lifestyle (62%), teenage rebellion (48%) and time constraints (42%).
The survey was sponsored by Baxter Healthcare Corporation. One of the lead authors of the paper is Sue Geraghty, RN, MBA, of the Mountain States Regional Hemophilia and Thrombosis Center at the University of Colorado Health Sciences Center in Denver, CO. “These survey results provide data that will help inform the hemophilia community about how the disease is treated from country to country,” said Geraghty.
Source: Baxter news release dated March 16, 2006