Managing Hemophilia How To Overcome Hemophilia Treatment 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 hemophilia patients and caregivers address such challenges in order to improve adherence to treating bleeds promptly.
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Barrier: Finding The Time1
Time is by far the biggest barrier for people with hemophilia. Most people with hemophilia 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 who are caring for children with hemophilia involve them in their treatment plans from a young age so that children can assist parents during busy times.
Barrier: Wondering If Treatment Will Help2
Some people are not knowledgeable about the benefits of hemophilia treatment. For others, it’s hard to believe that following your prescription will really have long-term benefits. Doubt can lead to letting treatments slip, which can have serious, long-term complications.
Tip
If you are living with hemophilia, read up on the benefits of your hemophilia treatment and the consequences of not following your plan.
Following your treatment plan of regular exercise and treating bleeds quickly can help prevent joint damage and other long-term problems. Ask your hemophilia treatment center for education and support in adhering to the prescribed regimen.
Barrier: Rebellion, Denial And Testing The Limits2,3,4
Teenage boys are constantly testing their boundaries, and teens with hemophilia are no exception. Many adolescents and young adults with hemophilia do not want to consider hemophilia 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.
If you are caring for a teenager with hemophilia, 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.
Barrier: Problems With Venous Access2,3
Different types of peripheral and central catheters and devices are used in different hemophilia 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 hemophilia treatment center alternative options for venous access and, to minimize complications, get trained on proper maintenance of access lines.
For young children, it may help to distract them during the infusion. Ask your hemophilia treatment center about ways to minimize discomfort. As the child gets older, allow him or her to help in order to transfer ownership of the process over time.
Note: ThereForYou.com does not recommend a particular treatment for specific individuals and recommends that you consult your treatment center or physician before pursuing any course of treatment.
References
- Hacker MR, Geraghty S, Manco-Johnson M. 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;13 (suppl 2):16-22.
- Geraghty S, Dunkley T, Harrington C, Lindvall K, Maahs J, Sek J. Practice patterns in haemophilia A therapy — global progress towards optimal care. Haemophilia. 2006;12(1):75-81.
- Lindvall K, Colstrup L, Wollter IM, Klemenz G, Loogna K, Gronhaug S, Thykjaer H. Compliance with treatment and understanding of own disease in patients with severe and moderate haemophilia. Haemophilia. 2006;12(1):47-51.
