Hemophilia patients are 40% less likely to die of hemophilia-related complications when the treatment they receive comes from an established hemophilia treatment center (HTC). This dramatic improvement came after recognizing that patients with rare diseases need specialized care from providers familiar with their illnesses. This was the beginning of a comprehensive care model that aimed to deliver a more uniform standard of care to people with bleeding disorders. Yet, according to Michael Wang, MD, the actual treatment patients receive within the 141 HTCs located throughout the U.S. varies significantly. This is something he aims to help change by creating a healthcare delivery improvement program at the University of Colorado Hemophilia and Thrombosis Center Clinic, and partnering with other HTCs to reduce treatment variability and cost while demonstrating improved clinical outcomes.
HTCs around the country vary considerably in size and resources—particularly those serving rural areas. The Hemophilia and Thrombosis Center Clinic on the Anschutz Medical Campus provides adult and pediatric care to patients with bleeding and clotting disorders under the direction of Marilyn Manco-Johnson, MD. It’s one of the largest HTCs in the nation. It serves a large geographic area with outreach clinics that reach patients throughout the state as well as Wyoming and Montana. Marilyn Manco-Johnson, MD, Center Director
A significant challenge facing HTCs is a lack of resources to collect and analyze patient data. To help address many concerns within the bleeding disorders community, the Centers for Disease Control and Prevention established a surveillance program for people with bleeding disorders treated at HTCs; however, its usefulness as a tool to improve patient care has been limited. Importantly, it cannot help an individual HTC understand how its performance compares to other HTCs within its own region or around the country.
“There’s no practical or reliable way to share clinical outcomes data between HTCs. We have difficulty even defining a shared baseline from which we can begin to improve care,” says Dr. Wang. “What we do know is that we practice with a large amount of unexplained variability. In our region alone, you can ask a handful of doctors about how they treat a particular condition and you will get a handful of highly disparate answers that will not lead you to better understanding of the outcomes of any given patient.”
Dr. Wang, a graduate of the Intermountain Healthcare Advanced Training Program (ATP), believes clinical outcomes can be improved by reducing the unexplained variability of care that patients receive from individual providers, between programs, and across wide geographical regions.
One of the biggest drivers for reducing variability is cost. Treating hemophilia or any bleeding disorder is extremely expensive.
“If you can estimate, as an example, that factor VIII costs on average a dollar per unit. Then an adult with severe hemophilia A may need 3-6,000 units of factor per kilogram per year just to prevent bleeding,” says Dr. Wang. “Add into this equation that providers disagree, or vary, on the amount of factor they feel is necessary, and it’s easy to see how small adjustments in care patterns can greatly influence costs, still without fully understanding the outcome.”
Recently, Dr. Wang began working with HTCs in the western region of the U.S. to decrease the variability between HTCs associated with surgically inserting an implantable catheter (mediport), the primary device used to aid infusion for pediatric hemophilia patients. It’s a standard practice across eight states, but even the processes surrounding its insertion are variable.
“What we’re finding is that we don’t even do our most common procedures similarly since we cannot compare processes and outcomes between HTCs,” says Dr. Wang.
In addition to his work regionally, Dr. Wang is working on several quality improvement projects within the Anschutz Medical Campus clinic. They recently completed updating the process that ensures timely receipt of a hemophilia patient’s medical alert card, a project aimed at improving patient safety. They are also embarking on initiatives to examine treatment outcomes for common procedures, rates of prophylaxis and joint outcomes.
Dr. Wang credits his ATP training with helping him understand how to begin to create a culture of safety and efficiency within his own team. Developing a culture within the clinic that wants to engage and then sustain change is the greatest challenge.
“I think it’s important to ask your team, ‘are you delivering the care you want to deliver?’” says Dr. Wang. “I find that the answer is often, ‘no.’ But before we can make improvements, we need to build a culture that expects or even demands meaningful change … and then we need the data. So that’s what we’re aiming to do.”
Of course, changing culture and collecting data isn’t always easy. “It’s been very hard to get our team into the position to even begin to collect data—much harder than I thought it would be,” says Dr. Wang. “But with everyone on our team taking their first steps and understanding why it is important for us to have 100 percent participation in quality improvement, I am certain we’ll get the job done.”
Learn more about the Hemophilia and Thrombosis Center.
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