Many excellent measures have been developed for haemophilia – especially in the health domains of structure and function, and activities; excellent health status/health-related quality-of-life tools have also been developed for haemophilia. Studies from other disciplines suggest that the use of standardized outcome measures in daily practice leads to improvement in quality of care. Because of their potential complexity, measures must be chosen that are practical for use in clinic. Future research should be focussed on the best ways to implement

the use of standardized outcome measures in haemophilia practice. What is an ‘outcome measure’? Mosby’s medical dictionary defines an outcome see more measure as a measure of the quality of medical care, the standard against which the end result of the intervention is assessed. [1] Similarly, the New South Wales Health Outcomes Program defines a health outcome as a change in the health of an individual, group of people or population which is attributable to an Sirolimus supplier intervention or series of interventions. [2] Integral to both definitions is the concept of change in a health state due to an intervention. As examples, a health outcome might be the change in the average bleeding frequency in a clinic’s group of

patients, following the introduction of a primary prophylaxis programme, or the change in a patient’s knee range of motion following synovectomy or the change in a patient’s social participation following a physiotherapy intervention after that synovectomy. Why do we need measures of health outcome? It is widely written that, ‘you can’t manage what you 上海皓元 can’t measure’. As humans, our memories are influenced by cognitive biases [3]; these may make our determinations – of whether our interventions have truly had an impact – inaccurate. Valid and reliable outcome measures allow us to accurately assess the impact of our treatments. Many of the outcome measures used in haemophilia have been developed primarily for clinical research.

In this article, I will address the question: are haemophilia outcome measures useful in every day clinical practice, and should they be used? The World Health Organization (WHO) has provided a very useful and comprehensive diagnosis of health. They have defined health as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. [4] The WHO has further classified health into different domains, listed in their International Classification of Functioning, Disability and Health (ICF) model. A disease impacts on health, according to the ICF, through the interactions of body structures and functions (anatomy and physiology), activities (instrumental activities of daily living) and (social) participation. These are further modified by environmental and personal factors. We can use the ICF domains to think about outcome measurement in haemophilia.