Issues in the measurement of quality of life in hemophilia.

Abstract

It is widely claimed that can't manage what you don't measure. Likely this quote is derived from statements made by Lord Kelvin to the Institution of Civil Engineers. In his 1883 address, he claimed: ...when you cannot measure it, when you cannot express it in numbers, your knowledge is of a meager and unsatisfactory kind... (1) A number of tools have been developed to accurately assess our hemophilia patients' progress and response to changing treatments. These include radiographic scores (like the Pettersson (X-ray) score and the compatible magnetic resonance imaging score), musculoskeletal assessment tools (like the Hemophilia Joint Health Scale), functional assessment questionnaires (like the Haemo-philia Activities List) or observational tools (like the Functional Independence Scale for Haemophilia), as well as summary measures of health - which are often called quality of life (QoL) or health-related quality of life (HRQL) tools(2-15). These tools have given clinicians and researchers powerful new ways to describe their patients' illnesses, but there are a number of considerations that should be addressed in future work. This commentary will address some of these issues.