Courtesy of the Friends of NCBDDD Executive Committee:
"In 2018, the US Hemophilia Treatment Center Network (HTC) launched the second national Patient Satisfaction Survey. Over 4700 patients/caregivers from nearly 128 (92%) of all HTCs across the country participated. Patient satisfaction with HTCs was extremely high: 96% were “always” or “usually” satisfied with overall HTC care. Over 85% were “always” or “usually” satisfied with the HTC core team members: hematologist, nurse or nurse practitioner, social worker, or physical therapist. Between 93% - 98% were ‘always’ or ‘usually’ satisfied with HTC services and care processes: being treated respectfully (98%); spending enough time with staff (97%); obtaining understandable information (97%); being involved in decision making (97%); getting timely services (95%); ease of contacting the HTC (95%); and care coordination (93%). 96% indicated they were ‘always’ or ‘usually’ satisfied with their HTC Pharmacy (340B) Factor Program. CDC studies indicate that men with hemophilia who obtain care at an HTC have lower mortality, morbidity and costs compared to men obtaining hemophilia care elsewhere.
Results were presented as a poster at the National Hemophilia Foundation’s (NHF) 70th Annual Bleeding Disorders Conference and the American Thrombosis and Hemostasis Data Summit in October 2018. Questions? HTCSurvey@ucdenver.edu. The 2018 poster and articles from the 2015 survey are available online. Read More... "