World Haemophilia Day: research into balance in haemophiliacs

Stephanie Taylor is a Lead Specialist Adult Physiotherapist at the Oxford Haemophilia and Thrombosis Centre at Oxford’s Nuffield Orthopaedic Centre. To mark World Haemophilia Day on 17 April, Stephanie talks about research into measuring balance in people with the condition.

Haemophilia is a rare bleeding disorder which causes bleeding into joints, in particular the ankle, knees and elbows. This bleeding damages the joints which in turn leads to arthritis. Arthritis causes pain, a reduction in the movement of the joint and can also lead to muscle weakness. This damage to the joint can occur after only a small number of bleeds. This bleeding often occurs early in life so people with haemophilia can develop damage to their joints at an early age.

With the advancements in medical treatment, people with haemophilia are now living a near normal life expectancy and may experience the same issues of ageing as those of the general population. Reduced balance and the risk of falling is one issue we face as we age. 

We conducted research to find out how people with haemophilia felt about their balance and walking. They told us that pain was a big factor; that they were concerned about tripping / falling and the possible consequences of this. They always had to plan for activities to help reduce the risk of tripping and possible falls. This was due to their limited joint movements and walking on uneven surfaces was extremely challenging. This caused constant worry and affected their ability to join in social and sporting activities with friends and family.

In our last research study, we investigated which outcome measures we may be able to use to monitor patients' balance over time. The Four-Square Step Test amongst other measures was investigated and found to be valid and reliable in haemophilia. This balance measure looked at the ability to step quickly in different directions whilst clearing a small obstacle. People felt that this outcome measure challenged their balance especially when stepping backwards.

The next stage of our research is to design a study to investigate whether an online exercise class focusing on core strength and balance can improve functional balance and confidence in people with haemophilia.

This research is important as we as health care providers need to support people with haemophilia to age well. We have yet to see how ageing affects people with haemophilia and ensuring they maintain their mobility and balance is important to help ensure social participation and independence