Novel Hemophilia B Educational Program Improves Patient Outcomes

Novel Hemophilia B Educational Program Improves Patient Outcomes

Hemophilia, a type of bleeding disorder, affects approximately 20,000 patients in the U.S. These individuals lack significant proteins that are crucial in the clotting process.

Hemophilia B is far less common than hemophilia A.  According to the National Hemophilia Foundation, hemophilia B occurs in about one in 25,000 male births, affecting about 3,300 Americans. Because the hemophilia B population is so small, specific programs to meet the needs of these patients are sometimes overlooked.

In an effort to better support this subset of patients, Accredo Specialty Pharmacy and Pfizer collaborated to develop an educational program that utilized the specialized clinicians at the pharmacy to complement the existing educational resources, like hemophilia treatment centers, social media and national organizations supporting bleeding disorders. The study was recently published in the Journal of Managed Care & Specialty Pharmacy.

The BE EMPOWERED program was developed by clinicians who specialize in hemophilia B. The three modules focus on the barriers to therapy adherence. Patients who consented to the program received a welcome packet that included a baseline survey and treatment journal. A BE EMPOWERED pamphlet was mailed to each patient in 1 month intervals. Follow-up calls were placed to the patient one week after the pamphlet was mailed. These calls allowed an Accredo clinician to address patient questions and highlight the key therapy management concepts in each module. A follow up survey allowed study investigators to compare a variety of outcomes, including quality of life, self-reported bleeding events, and use of RICE (rest, ice, compression and elevation) for adjunctive therapy for addressing bleeds. Medication usage was also evaluated through prescription refill history.

Adults who participated in the program showed a 47% decrease in their annual bleed rate and a 21% decrease in joint bleeds.  Additionally, caregivers who participated in the program were better able to recognize bleeds in their children and most likely to appropriately apply RICE.

This study confirms that specialty pharmacies are uniquely positioned to provide educational outreach to even the smallest of patient populations due to multiple and continuing interactions with patients and caregivers throughout the year.