We are in a unique position to study psychological factors in haemophilia as we have excellent links with the Haemophilia Society and with haemophilia treatment centres including those at The Royal London and Great Ormond Street.
We also form part of the Haemophilia Research Steering Group that identifies clinical and social issues relevant to people with haemophilia and other bleeding disorders and determines ways of addressing these through research. We have a number of projects completed or underway:
1. We have explored the role of cognitive and emotional factors in predicting intention to screen for vCJD. People with clotting disorders are considered by the Department of Health to be at increased risk for vCJD and though no test is currently available, one has been developed and validated.
Given some of the past experiences of many people with haemophilia in the 80s and 90s with issues of contaminated blood products, the “theoretical risk” of vCJD is of considerable concern to many.
We explored what factors predicted intention to screen once the test is made available in order to make recommendations about what interventions could be used to help people arrive at a decision that is right for them.
2. NICE recommends the use of prophylaxis treatment for people with haemophilia which is an advance on older treatments: it reduces the likelihood of bleeds occurring in the first place, rather than on-demand treatment which infuses clotting factor once a bleed has occurred.
However, adherence to prophylaxis is an issue since non-adherence can lead to later problems in terms of joint condition, for example. We are exploring cognitive and emotional factors that influence adherence using both quantitative and qualitative approaches.
3. Mindfulness is a widely used approach for a number of psychological approaches. Mindfulness based pain management has also been shown to be effective although most of the evidence concerns the use of direct therapeutic contact.
We are currently piloting the effectiveness of a commercially available mindfulness-based pain management CD in older adults with bleeding disorders. The results of this should be known by the end of the summer 2012.