Compendium of assessment tools
Hemophilia is a rare disease and its management is multi-faceted. With advances in medical care including prophylactic factor replacement, the need for outcome assessment tools that are valid, reliable, sensitive to change, and predictive has become increasingly apparent. Physical status (joint health), functional ability, and quality of life can now be measured using standardized tools. Ultrasound and MRI scores are also under development.
Many of these tools have been developed by working groups comprised of international experts, and have been tested in a variety of settings.
The purpose of this compendium is to provide hemophilia caregivers and researchers with an evaluation of new and existing assessment tools suitable for use in hemophilia. Adequate use of these tools will ultimately facilitate research and inform best practice.
Functional and physical examination tools
Working Group: Karen Beeton, Brian Feldman, Kathy Mulder, Pradeep Poonnoose, Janjaap Van der Net, and Nancy Young.
Diagnostic imaging and quality of life scores will be added in subsequent phases, as well as non disease-specific scores that may have applications to hemophilia management.
Updated November 2012