The World Federation of Haemophilia (WFH) http://www.selleckchem.com/products/bay-57-1293.html has established a compendium of assessment tools useful in the evaluation of persons with haemophilia [7]. In addition, many groups have worked to develop different quantitative tools to help in the care

of haemophilia. For example, the International Prophylaxis Study Group (IPSG; chair: Dr. Victor Blanchette) has worked to develop and test haemophilia-specific outcomes measures [8]. Scoring of images provides a quantitative way to compare imaging studies when evaluating a patient’s response to intervention. Several haemophilia-specific scored methods for joint images have been developed and validated. The Pettersson [9] and Arnold-Hilgartner [10] methods of scoring standard joint radiographs have been validated and widely used. The IPSG MRI scoring system has been validated and proven reliable [11–13]. New ultrasound imaging scoring methods are currently being evaluated for haemophilia [14]. It is often very difficult to remember, from visit to visit, just how much swelling or just how much limitation of movement, a patient had in his knee at his last visit. Scored physical examination tools have been developed to quantitate, and make it easier to record and compare, a patient’s health state. The first widely used examination score was the Gilbert ‘WFH’ examination score [15]. The IPSG Hemophilia Joint Health Score is a reliable

and validated, and more sensitive, selleck screening library update to the Gilbert score [16,17]. Two outcome measures have been specifically developed to measure activity limitation for persons with haemophilia. The Functional Independence Score in Hemophilia (FISH) was developed as an observational measure of activity limitation [18]. The Haemophilia Activities List (HAL) [19,20] and its paediatric version (Ped-HAL) [21] are self-report measures of the same domain. The domain of participation has been conceptually difficult to define [22]. For this reason, the WHO recommends measuring activities and participation together. Indeed, measures like the HAL include items that address participation as well as items that address activities.

There are two additional issues that should be considered when measuring participation, selleck which make its measurement more complex than the domain of activities [23]. First, persons with haemophilia should be able to exercise their rights of autonomy of choice; this confounds the measurement of participation because there are some social events that a given person with haemophilia would choose not to take part in whether or not their health was affected. Second, when measuring participation, the subjective experience of meaning must be considered; not being able to participate in soccer may have a very different meaning to two different boys. Whereas generic measures of participation have been developed, no haemophilia-specific measure, that addresses these issues, is available.