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      • Tips for Making It Easier
      • Overcoming Barriers
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Overcoming Barriers

While most people with hemophilia want to treat bleeds promptly, they may be challenged by a number of things, such as time constraints or fears. This section provides tips to help patients address such challenges in order to improve adherence.

Barrier: Finding the time¹

This is by far the biggest barrier for people with hemophilia. Most people will treat bleeds, but not necessarily as quickly as they should. Early treatment of bleeds minimizes the chances of long-term joint damage.

Tip: Experts recommend that parents involve children in their treatment plan from a young age so that children can assist parents during busy times.

Barrier: Wondering if treatment will help²

Some people are not knowledgeable in the benefits of treatment. For others, it’s hard to believe that following a treatment plan will really have long-term benefits. Doubt can lead to letting treatments slip, which can have serious, long-term complications.

Tip: Read up on the benefits of your treatment and the consequences of not following your plan. Following your treatment plan can help prevent joint damage and other long-term problems. Ask your treatment center for education and support in adhering to the treatment plan.

Barrier: Rebellion, denial and testing the limits^3,4

Teenage boys are constantly testing their boundaries, and teens with hemophilia are no exception. Many adolescent and young adults with hemophilia do not want to consider hemophilia as a problem and are not concerned about joint disease and other long-term consequences to a bleed they're facing now. Some willingly risk injury to play contact sports or are reluctant to stop an activity to treat a bleed, for fear of being viewed as "different." Taking such risks can lead to bleeds and result in chronic problems and joint replacements later in life.

Tip: Teens are most likely to learn the importance of treating their hemophilia by networking with other teens and adults who have experienced debilitation from their disease. It’s also important to encourage them to think ahead — not 20 years, but 24 hours — when they might be in pain from a bleed that could have been minimized through proper treatment. (For more information, see Teens.)

Barrier: Problems with venous access^2,3

Different types of peripheral and central catheters and devices are used in different patients. At times, there are complications with these access routes. In small children it may also be difficult to gain their cooperation during infusions.

Tip: Explore with your treatment center alternative options for venous access and get trained on proper maintenance of access lines, to minimize complications. For young children it may help to distract them during the infusion. Ask your treatment center about ways to minimize discomfort. As the child gets older, allow him to help in order to transfer ownership of the process to him, over time.

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References

1. Hacker, et al. Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia. 2001; 7(4):392-396.
2. Petrini P. Identifying and overcoming barriers to prophylaxis in the management of haemophilia. Haemophilia. 2007 Sep;13 Suppl 2:16-22.
3. Geraghty, et al. Practice patterns in haemophilia A therapy — global progress towards optimal care. Haemophilia. 2006;12(1):75-81.
4. Lindvall, et al. Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia. 2006;12(1):47-51.