First Ever Patient Needs Survey Launched

Horizons in Hemophilia, October 2013

 

By Karen Droze, Regional Coordinator                                  
 

The National Hemophilia Program Coordinating Center (NHPCC) launched the first-ever national hemophilia program patient needs survey. Patient feedback is needed to help set national priorities to advance care. The NHPCC is working with over 130 Hemophilia Treatment Centers (HTC) across the U.S., and the HTC regional leadership, to gather patient perspectives to help establish national priorities for quality improvement and program evaluation.  NHPCC is funded by the federal government through the American Thrombosis and Hemostasis Network (ATHN), a nonprofit organization committed to advancing and improving care for individuals with bleeding and clotting disorders.

Surveys were mailed in mid-September to patients with hemophilia and von Willebrand Disease by the federally funded HTCs across the nation and patients are encouraged to participate to make their voices heard. The goal is to secure responses from at least 5,000 patients to help identify strengths and perceived gaps in currently available services. Broad participation is needed to help set national and regional goals and to assess and address unmet needs.

Participation is simple, the survey only takes 15-20 minutes to complete, and it is available in English, Spanish, and in paper or electronic format. A self-addressed stamped envelope is included and all patient survey data is completely anonymous. Patient questionnaires will be received and data analyzed by a third party. The NHPCC and HTCs will not have access to any identifiable patient data.

"We are seeking input from all families served by HTCs," said Amy D. Shapiro, MD, Medical Director for the NHPCC; Co-medical Director and Pediatric Hematologist, Indiana Hemophilia and Thrombosis Center. "The answers to the survey questions will help our community improve access and quality of care for all patients. It is the hope that with broad patient participation, your answers will help make your local care the best it can be."

Reports of the national data analysis will be published this winter in multiple formats including at national and regional meetings, through consumer organizations like the National Hemophilia Foundation (NHF) and the Hemophilia Federation of America (HFA), and on the ATHN website.