Improving Provider Education on Sickle Cell Solutions

Posted July 06, 2016 by Elizabeth Barker

Doctor Writing A Prescription
Providing education about hydroxyurea
could lead to more patients receiving prescriptions for the medication. 

For the estimated 100,000 Americans diagnosed with sickle cell disease (SCD), a medication called hydroxyurea (HU) can protect against pain outbreaks, lessen the need for blood transfusions and even reduce mortality. But while HU is the only drug approved by the FDA for preventing SCD-related complications, it appears that not all candidates for the treatment receive it due to provider hesitancy for prescribing it. In fact, a 2014 study conducted at three U.S. hospitals found that only 42 percent of adults with SCD were taking HU. What’s more, research shows that lack of provider knowledge about the disease and its treatment may play a major role in HU underuse.

Coordinated by NICHQ and supported by the Health Resources and Services Administration, the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) is working to educate providers about SCD treatments and increase the number of doctors prescribing HU. At the SCDTDP’s northeast coordinating center, that work includes developing an interactive, web-based tool designed to guide providers and patients in making more informed choices about SCD treatment options.

“The tool’s meant to assist in the conversation between patients and providers on starting HU,” explains Lauren Whiteman, MPH, CPH, research program manager for the northeast coordinating center at Johns Hopkins University. “One of the main goals is to give patients some key information on how HU can benefit them, so that they can bring that information to their doctor and be armed with some extra knowledge.”

Many healthcare providers are seeking the assistance of such interactive tools. In sizing up survey responses from more than 1,000 family physicians, researchers found that less than one in four respondents reported being comfortable treating patients who require HU. The researchers also observed that most family physicians questioned their ability to treat SCD and SCD-related complications, and that nearly three out of four providers believed a clinical decision support tool would be helpful in caring for patients with SCD.

By introducing the interactive tool, the SCDTDP seeks to improve provider confidence in treating SCD. That includes helping providers determine whether a patient is a good candidate for HU, says Whiteman. In addition, the tool is meant to support providers by making up for deficits in the time and resources needed to discuss HU’s benefits with patients.

Soon to be piloted at the Johns Hopkins sickle cell clinic, the interactive tool will be used in waiting rooms prior to medical appointments. With the help of an on-site community health worker or research assistant, patients will access the tool’s website and input data on the specifics of their condition. After sharing those specifics—such as the number of pain outbreaks and missed school/work days experienced each year—patients receive personalized information on the benefits, costs and follow-up needs associated with HU.

In enhancing education about HU, the tool also aims to eliminate confusion stemming from HU’s use in treatment of conditions like leukemia.

“If a patient searches online for information about HU, they’re probably going to get a lot of results having to do with cancer and about its side effects,” says Whiteman.

While creating the tool, members of the SCDTDP northeast team tested prototypes with several patients and adjusted the tool’s features based on their feedback. For example, says Whiteman, patients expressed interest in viewing images of SCD-related changes in blood cells. They also wanted to learn about how HU might help reach certain personal goals, such as missing fewer work days and being more involved in their family life.

“It’s important for patients to understand how HU can help decrease crises and allow more time for the things that matter most to them,” Whiteman points out.


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