Abstract
BACKGROUND: Traditional education about hemophilia B in hemophilia treatment centers (HTCs) and episodic contact with HTCs limit the amount of education patients and their caregivers receive. Specialty care providers have frequent, continuing contact with patients. Each contact with a specialty care provider (e.g., coordinating a refill or addressing a patient inquiry) is another opportunity to support patient self-management of the disease and to give counsel on appropriate medication administration. The role of specialty pharmacy in improving patient self-management and supporting medication management and adherence is well established and reported with rheumatoid arthritis, multiple sclerosis, and renal transplant. With hemophilia, specialty pharmacies can support educational reinforcement of HTCs as well as support patient self-management and education of medication therapy. Utilization of patient education materials and programs can facilitate such a role. BE EMPOWERED, a specialty pharmacy education program for hemophilia B patients, is a multimodule education program coupled with frequent telephonic outreach. OBJECTIVE: To provide education about hemophilia B, based upon discrete curriculum modules, facilitated by a specialty pharmacy-based nurse educator. METHODS: Patients with hemophilia B (or, for children, their caregivers) were enrolled in the BE EMPOWERED program, and data were prospectively collected regarding bleeding and hemophilia-specific quality of life (QoL) outcomes (n = 21 caregivers, n = 17 adults). RESULTS: BE EMPOWERED was associated with a statistically significant impact on the use of RICE (rest, ice, compression, and elevation) by caregivers whose utilization increased from 81% to 95% (P = 0.05). Adults in the BE EMPOWERED program experienced a statistically significant drop in the annualized bleeding rate (ABR), decreasing from 4.7 to 2.5 for total bleeds and decreasing from 3.5 to 1.7 for joint bleeds (P ≤ 0.02). For children with hemophilia B, bleeds were less common overall, as reported by their caregivers, with a mean ABR of 1.1 before and 1.2 following the program. Regarding QoL scores, adults had lower scores compared with children enrolled in the program. CONCLUSIONS: Completion of the BE EMPOWERED program was associated with a decrease in total bleeds and in joint bleeds in adults and with increased RICE utilization in children, as reported by caregivers. QoL scores were lower in adults compared with children, and further research is warranted to understand this difference. Future studies may focus on the effect of specialty pharmacy as an educational vehicle with potential cost benefits.