Why We Reinforce Hemophilia Education

Mar 28, 2014
Targeted education by nurses with clinical specialization can help significantly reduce bleeds among hemophilia B patients.
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  • Hemophilia

Targeted education from nurses can significantly help reduce bleeds among hemophilia B patients, according to research by Accredo, an Express Scripts company. In the study, nurses reinforced the education regarding disease management and medication management that patients receive when first diagnosed.

A study, recently published in the Journal of Managed Care & Specialty Pharmacy, shows that nurses reinforcing the education patients receive about their disease state helped decrease total bleed rate among adults by 47% and joint bleeds by 21%. Nurses helped educate patients about activities that might cause bleeds and when preventive measures may be appropriate.

Counseling about the significance of “RICE” – rest, ice, compression and elevation – helped increase the use of these adjunct therapies by caregivers of children with hemophilia B by 17%. Caregivers also reported a 23% increase in recognition of bleeds based on symptoms such as warmth and tingling in the joints and swelling.

What Is Hemophilia B?

Hemophilia B is a rare bleeding disorder that causes people to bleed longer than normal because they lack factor IX, a protein that is an essential component of the clotting process. Hemophilia B makes up approximately 20% of the total hemophilia population and affects fewer than 4,000 people in the U.S. Symptoms include internal bleeding, most commonly into joints and muscles. Over time, repeated bleeds into joints can lead to permanent damage resulting in long-term pain and disability.

Unique Challenges

Hemophilia B is treated with intravenous infusions of clotting factor IX. Patients may receive infusions episodically when bleeds occur to stop the bleed or preventively. In addition to factor infusions, adjunctive therapies – such as RICE – are important to long-term management of the disease.

Although patients and caregivers may have received such education and training before, over time, they may forget its significance.

As with all chronic conditions, adherence is a challenge. However, hemophilia B poses some unique issues including:

Lack of proficiency in IV access technique: If patients or caregivers cannot locate the vein correctly, the factor cannot be infused.

Dosage and timing: Ensuring that patients or caregivers administer the correct dosage – for instance, sometimes two vials are needed for a dose instead of one, depending on the regimen – is important, as is making sure the factor is infused at the right time, prior to the most physically active time of the patient’s day.

Medication on hand: If patients don’t have factor IX or infusion supplies on hand, they may not be able to keep up with the therapy schedule because these items must be ordered from specialty pharmacies.

Lack of record keeping: It is important that patients maintain a record of bleeds, the locations and causes of bleeds, treatment used for the bleeds, and response to treatment to enable their healthcare providers  to evaluate bleeding and treatment patterns and whether changes in the treatment regimen are warranted. Over time, this often becomes a challenge to maintain

Prompt infusion: Episodic infusions should be done as soon as possible after a bleed is identified. Infusing within two to three hours helps limit the damage to the area of the bleed and usually requires fewer doses of factor.

The Importance of Education

After a patient has received an infusion, RICE helps limit the amount of blood that enters the affected area. Although patients and caregivers receive this training when first diagnosed, this critical component of therapy may be overlooked. Specialty pharmacies can provide reinforcement of the principles patients and caregivers have learned. They also may need a reminder of symptoms that can identify a bleed.

Accredo’s trained nurses can help. Our study clearly demonstrated that patients and caregivers who received education from Accredo nurses had better symptom recognition and fewer bleeds. This counseling also can help improve adherence leading to healthier outcomes.

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