Summary For several decades, US government agencies have partially supported regional networks of Hemophilia Treatment Centers (HTC). HTC multidisciplinary teams provide comprehensive and coordinated diagnosis, treatment, prevention, education, outreach and surveillance services to improve the health of people with genetic bleeding disorders. However, national data are scarce on HTC‐patient population trends and services. The aim of the study was to examine national trends over the past 20 years in patient diagnoses, demographics and health services utilization among the Health Resources and Services Administration (HRSA) and Centers for Disease Control and Prevention (CDC)‐supported HTC network. Diagnoses, demographics and health services utilization data from 1990 to 2010 were aggregated from all HTCs using the Hemophilia Data Set (HDS). From 1990 to 2010, the HTC population grew 90% from 17 177 to 32 612. HTC patients with von Willebrand's disease increased by 148%, females by 346%, Hispanic patients by 236% and African Americans by 104%. Four thousand and seventy‐five deaths were reported. From 2002 to 2010, annual comprehensive evaluations grew 38%, and persons with severe haemophilia on a home intravenous therapy programme rose 37%. In 2010, 46% of patients were less than 18 years vs. 24% for the general US population. The Hemophilia Data Set documents the growth and diversity of the US Hemophilia Treatment Center Network's patient population and services. Despite disproportionate deaths due to HIV, the HTC patient base grew faster than the general US population. The HDS is a vital national public health registry for this rare‐disorder population.

Patient satisfaction with healthcare delivery is a key quality metric, associated with treatment adherence 1 and better health outcomes. 2,3 In the United States, this metric can prompt enhanced reimbursement, 4,5 important in the US healthcare system for continued financial support of Hemophilia Treatment Centers (HTCs). The multidisciplinary healthcare team (MDT), a chief element of the patient-centered medical home model for primary care, is increasingly the focus of patient satisfaction. 6 The MDT has its roots in the model of care for children with complex, chronic and rare conditions, 7 many of whom have now grown to adulthood. 8

<b><i>Introduction:</i></b> In response to the increasing complexity of care for patients with bleeding disorders, we established new clinical teams for our hemophilia treatment center (HTC). <b><i>Aims:</i></b> We undertook a quality improvement project to improve the coordination and communication with our patients by establishing primary assignments of clinical staff to individual patients (primary teams). <b><i>Methods:</i></b> A quality improvement project group was formed that established the goals and assignment of primary teams. Patients were surveyed for their knowledge of their primary teams as well as their ability to schedule and contact their primary providers. As a measure of the effects on clinical staff, a balancing survey was also conducted among providers impacted by the clinical assignment of teams. <b><i>Results:</i></b> Our results demonstrate improvements across both coordination and communication as reported by patients. Additionally, the assignment of primary teams was met with high satisfaction and improvement in coordination and communication as reported by the clinical staff members of the HTC. <b><i>Conclusions:</i></b> Initiation of a quality improvement project and the creation of a primary team system were feasible at a large HTC and resulted in improvements in both patient-reported and staff-reported outcomes of coordination and communication of care.

Percent of hemophilia patients prescribed prophylaxis at an encounter in 2016 (before the clinical guideline) compared to 2018 (after the clinical guideline), shown for all patients and then shown by baseline factor level. The number of patient encounters reviewed (N) for each year and baseline factor level are displayed below the x-axis. B, Reasons given for prophylaxis in patients with a baseline factor level from 2 to 5% in 2016 compared to 2018. This includes 18 patients with encounters reviewed in both 2016 and 2018