WFH NETWORK

Guidelines for the management of hemophilia: comprehensive information in an interactive format

The World Federation of Hemophilia (WFH) eLearning Platform is the home of the WFH Guidelines for the Management of Hemophilia. Available in a variety of formats, this comprehensive guide presents WFH recommendations for all areas of hemophilia management, and is a foundational document for clinical practice and advocacy around the world.

Perhaps the most user-friendly way to get to know the guidelines is through the Guidelines for the Management of Hemophilia eLearning Program, a series of educational modules designed for individual self-directed or small-group learning. The program explores the second edition of the Guidelines (published in 2012) in six graphic and interactive modules. These modules offer an exciting way to share content with colleagues, healthcare professionals, government representatives, and friends. The Guidelines for the Management of Hemophilia eLearning Program is found under the “Featured Tools” drop-down menu on the WFH eLearning Platform.

On the page dedicated to the treatment guidelines, learners can immediately download a PDF of the full text of the guidelines in any of six languages (English, Spanish, French, Arabic, Russian, and Simplified Chinese). Just below this download panel are the six interactive modules, each presenting a specific section of the guidelines:

Module

Topics covered


General Care and Management of Hemophilia


  • Introduces hemophilia and WFH recommendations regarding principles of care, comprehensive care, fitness and physical activity, adjunctive management, prophylaxis, home therapy, monitoring health status and outcomes, pain management, surgery and invasive procedures, and dental care and management.
  • Provides recommendations for target factor peak level both in the context of no significant resource constraint, and for those contexts where there is significant resource constraint

Special Management Issues


  • Reviews the WFH recommendations regarding carriers, genetic testing and counselling, prenatal diagnosis, childbirth, vaccinations, psychosocial issues, sexuality, and aging for people with hemophilia.

Laboratory Diagnosis


  • Covers the WFH recommendations regarding the principles of diagnosis, the technical aspects, equipment, and reagents involved in coagulation laboratory testing for bleeding disorders, as well as the role of quality assurance.

Hemostatic Agents


  • Summarizes the WFH recommendations regarding factor VIII (FVIII) and factor IX (FIX) clotting factor concentrates, fresh frozen plasma, cryoprecipitate, and other pharmacological options including desmopressin (DDAVP), tranexamic acid, and epsilon aminocaproic acid.
  • Reviews safety, dosage, and administration, as well as target factor peak level recommendations both in the context of no significant resource constraint, and for those contexts where there is significant resource constraint

Treatment of Specific Hemorrhages


  • Presents the WFH recommendations regarding the treatment of specific hemorrhages including into muscles, joints, soft tissues, and internal organs, as well as head trauma, lacerations, abrasions, and nosebleeds in people with hemophilia.
  • Provides recommendations for target factor peak level both in the context of no significant resource constraint, and for those contexts where there is significant resource constraint

Complications of Hemophilia


  • Covers the WFH recommendations regarding the management of inhibitors, as well as musculoskeletal and infection-related complications.

The complex content of the guidelines is made simple and brought to life by detailed colour illustrations and interactive features, such as clickable slideshows and popup notes and icons containing essential information. A glossary and list of linked resources provide detailed explanations for those who wish to dig deeper into each topic. Fun quizzes and progress checks allow the learner to assess their understanding of the material and point them back to specific sections for re-study if necessary.

Each module requires 20 to 45 minutes to complete. Learners can work through a full module from start to finish or look up sections of particular interest in the interactive table of contents. All six modules are available in English, Spanish, and French.

While the full text of the 2012 Guidelines for the Management of Hemophilia (2nd edition) is available for download in six languages: English, Spanish, French, Arabic, Russian, and Simplified Chinese, some learners may wish to access individual sections. This option is available by scrolling further down the “Treatment Guidelines” page: below the six interactive modules the learner will find a complete list in the “Content” section (see the image below). Clicking any of these section titles will open a link to a PDF of that text. Individual sections are currently available on the eLearning Platform in English, with French and Spanish coming soon.

Interested learners can read a commentary on the guidelines published in Haemophilia, the official journal of the WFH, and can see the revisions made to the Treatment Guidelines in 2013 (English only). The WFH recently endorsed the 2016 National Hemophilia Foundation–McMaster Guideline on Care Models for Hemophilia Management, which is also available for download through the WFH eLearning Platform. Expert WFH volunteers from around the world are currently engaged in updating the Guidelines for the Management of Hemophilia, so keep an eye out for the eventual publication of the third edition.

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