The WFH Compendium of Assessment Tools – The Toolbox for Hemophilia HCPs and Researchers

The World Federation of Hemophilia (WFH) Compendium of Assessment Tools—found on the WFH eLearning Platform—is an invaluable resource for researchers and healthcare professionals. A summary of standardized outcome assessment tools suitable for use in hemophilia and other bleeding disorders, the compendium provides practical reviews of measures of physical status (joint health) and functional ability, as well as bleeding symptoms that can be used to inform best practices and facilitate research using comparable methods. Many of these tools have been developed by groups comprised of international experts, and have been tested in a variety of settings.

The Compendium of Assessment Tools is divided into two, easy-to-navigate sections (see Table):

  1. Functional and Physical Examination Tools
  2. Bleeding Assessment Tools

Compendium of Assessment Tools

Functional and physical examination
Bleeding assessment
General diagnostic Symptom-specific
  • Epistaxis Scoring System
  • Pictorial Blood Loss Assessment Chart
  • Menorrhagia-Specific Screening Tool
ISTH, International Society on Thrombosis and Haemostasis; MCMDM-1, Molecular and Clinical Markers for the Diagnosis and Management of Type 1; VWD, von Willebrand disease.

Healthcare professionals and researchers interested in hemophilia-specific scores to measure joint impairment and function—including activities and participation—will find these in the Functional and Physical Examination Tools section. Hemophilia-specific scores can be used to:

  • Assess joint health, establish a baseline measure, and determine appropriate treatment
  • Assess individuals on an ongoing basis to identify new or potential problems in their early stages
  • Evaluate progress of a treatment plan

Healthcare professionals and researchers interested in general diagnostic and symptom-specific tools to assist the diagnosis of bleeding disorders will find these in the Bleeding Assessment Tools section. These quantitative scores for bleeding can be used:

  • As screening tools, particularly for mild bleeding disorders
  • To assess disease severity
  • To address phenotypic heterogeneity and correlations between clinical and laboratory phenotype, and between genotype and phenotype
  • To improve communication in a clinical setting

WFH working groups of international experts have reviewed each of the tools in the compendium, providing objective evaluations of their key characteristics of utility, limitations, administration (such as equipment, time, and training), and psychometric properties (for example, populations in which the tool has been validated). The compendium also provides access to download the tool directly for use, and offers users an option to contact the tool’s developers.

The Compendium of Assessment Tools is found under the “Featured Tools” drop-down menu on the WFH eLearning Platform, and is currently available in English, French, and Spanish.

Fiona Robinson, Educational Materials Manager for the WFH, wishes to thank Georghia Michael for her contributions to this article.