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Fostering Hemophilia A Treatment Adherence: Empowering Patients With Essential Supplies and Tools


Ensuring that patients with hemophilia A have the necessary injection supplies, appropriately-sized syringes, and access to tracking tools can help to foster treatment adherence.

Kimberly Epps, PharmD, CSP: The standard of care for hemophilia A is IV [intravenous] therapy multiple times a week. Most patients with hemophilia A are infusing at least two if not three or more times a week. The considerations are storage. Do they have enough refrigeration space to keep it refrigerated? If not, do they know the proper room-temperature storage and can they maintain that storage? [Do they] know the expiration date on the product once it reaches room temperature?

The other thing we have to consider is how compliant the patient is. You always have to put yourself in the patient’s shoes. If you were accessing your veins multiple times a week, you’d probably want to break every once in a while. You’d probably think, “Maybe I can go without a stick in my arm today.” [We need to] be aware of that patient’s infusion schedule and how well they’re sticking to it. We encourage the use of programs like MicroHealth, which allows them to log their infusions and us to have access as the specialty pharmacy. The HTC [hemophilia treatment center] can have access. As a provider, we consider that a standard of care. We can view how compliant they are when they have bleeds, so we can set expectations the next time that they’re going to need medication. We’re not surprised when they call and say, “I’ve had a bleed for a week, and I’m out of PRNs [as-needed doses].” I’ve already gotten a notification on MicroHealth that this patient has been bleeding. I make sure I have the product on hand.

Some patients still prefer paper logs. We send those out with every shipment, even if the patients is on MicroHealth, because there can be hiccups with any technology, and we want to encourage logging every dose. That’s a major thing. Those are the patients we have to check up on if there’s any emergency in the area, like a hurricane. We had a power outage in Memphis. If anything like that happens, those are the patients we monitor closely to make sure that they have doses on hand, that they weren’t injured in any way and they don’t need additional as-needed doses.

For most patients and products, we’ve moved away from infusion pumps. Most of these are small—under 10 mL most of the time, 20 mL in the other cases. For other bleeding disorders that have fewer assays, you could get into larger syringes and a pump might be helpful. But these are slow IV, so the patient can push. They don’t need an infusion pump, which is excellent, but you have to consider dexterity. These patients are infusing themselves, so you don’t want to give them a long syringe and expect them to inject themselves using one hand. You want to consider, is the patient going to want to split that into two smaller syringes? You have to know your patient, their product and the amount of the product, and consider how you would feel if you were one-handed trying to inject medication into your other arm. There are considerations like that about syringe size—it’s different for a 7-year-old boy who’s likely going to have a parent or caregiver there to help, but he has small hands. If you’re trying to teach young children to infuse themselves, you want to take into consideration the volume going in and the fact that we don’t use infusion pumps.

For the standard of care with factor VIII, make sure the patient has the correct injection supplies, including the needles, depending whether they have a port or inject peripherally. Make sure you have the corresponding cleaning supplies: ChloraPrep, alcohol, gauze. [You’ll want] anything to make that infusion comfortable, like an extension set, because most infusion supplies are made for there to be a nurse on the other end. The patient is going to need enough line in that infusion to get to their other hand and be able to move around. Beyond that, they need gauze and Coban [a self-adherent wrap] to make sure that they aren’t bleeding after accessing those. Sometimes patients have vein issues, so we might send out hot packs. That helps those veins pop out a little better. You have to cater to the patient. Whatever they need to make their infusions successful, we need to consider as a specialty pharmacy.

Transcript edited for clarity.

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