Intended for US audience only.
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: Fearing the hurt
Sometimes parents don’t treat because they think the sticks are going to hurt their child. But the consequences of not treating, which include pain and joint damage, are much worse than the brief discomfort of a needle-stick.
Tip: Talk to other parents who have been through the home infusion process. Ask them if they had similar concerns when they started infusing their child and if so, how they overcame them.
Barrier: Accepting the diagnosis
Coming to terms with a diagnosis of hemophilia can be a struggle. Some parents may hope that the doctors are wrong or that the condition will disappear if they ignore it. Yet accepting the diagnosis is the first important step in learning to live well with hemophilia.
Tip: Learning that your child has hemophilia can be overwhelming. Don’t try to deal with the situation alone. Develop relationships with people and organizations that can help you and your child, such as your local treatment center. Learning as much as you can about hemophilia is a second important part of accepting the diagnosis. Talk to your treatment center and your local chapter about all the ways you can get information about living with hemophilia.
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: Maintaining a balance between concern and control is critical for parents of children with hemophilia
Early on, using control may persuade children to adhere to treatment, but this method can cause children to become dependent upon others for their medical care. On the other hand, being overly permissive might result in children making medical decisions before they have developed the capacity to understand the consequences.
Tip: A balanced style encourages children to be active participants in their treatment plan while providing sufficient support to help them become effective and knowledgeable medical consumers.
Barrier: Rebellion, denial and testing the limits3,4
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 access2,3
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.
References
- Hacker, et al. Barriers to compliance with prophylaxis therapy in haemophilia. Haemophilia. 2001; 7(4):392-396.
- Petrini P. Identifying and overcoming barriers to prophylaxis in the management of haemophilia. Haemophilia. 2007 Sep;13 Suppl 2:16-22.
- Geraghty, et al. Practice patterns in haemophilia A therapy — global progress towards optimal care. Haemophilia. 2006;12(1):75-81.
- Lindvall, et al. Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia. 2006;12(1):47-51.
