Increasing Shared Decision-Making and Education on Emerging Hemophilia Therapies
The King County Medical Society’s hemophilia education initiative—funded by Pfizer and the National Bleeding Disorders Foundation (NBDF)—was developed to empower healthcare professionals and individuals living with hemophilia. By promoting shared decision-making (SDM) and improving access to emerging therapy information, the project aims to strengthen care across disciplines.
Survey-Driven Education: Grounded in Real-World Insight
To guide content development, KCMS conducted a baseline survey of healthcare professionals across specialties. Key insights included:
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57% of respondents reported low familiarity with new therapies
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Nearly half lacked confidence initiating SDM conversations
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Barriers included time constraints, treatment complexity, and limited patient understanding
These findings directly shaped the tone, format, and delivery of all educational resources.
What We’ve Delivered
In direct response to provider needs, KCMS created a 20-part short-form video series designed for fast, actionable learning. The videos:
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Explain hemophilia pathophysiology and therapeutic advances
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Compare traditional and emerging treatment options in plain language
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Support meaningful SDM conversations at the point of care
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Offer practical strategies for busy clinical environments
▶️ Watch the Hemophilia Video Series on YouTube
Downloadable Tools for Clinical and Educational Use
To complement the videos, KCMS developed five print-ready tools—shaped by provider input—to reinforce learning and support decision-making during patient encounters:
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Treatment Discussion Checklist – Prompts to guide shared decision-making conversations
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Visual Therapy Comparison Chart – A quick-reference overview of treatment categories
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Patient Decision Aid – Helps patients evaluate options collaboratively with care teams
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Fast Facts on Emerging Therapies – Key concepts on gene therapy, rebalancing agents, and more
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Tips for SDM with Diverse Populations – Inclusive strategies for equity-driven communication
📄 Download the Full Hemophilia Tools PDF
All educational materials and deliverables from this initiative are available either through the links above or within the downloadable PDFs provided.
Clinical Guidelines & Additional Resources
This initiative has been informed by ongoing work from the broader hemophilia community to ensure alignment with current standards of care. For clinicians seeking more detailed guidance, we recommend the following evidence-based resources.
National Hemophilia Foundation (NHF) Medical
& Scientific Advisory Council (MASAC) Recommendations
This section connects clinicians to trusted external resources that offer deep dives into treatment algorithms, dosing strategies, clinical decision pathways, and emerging therapies. For questions, contact info@bleeding.org.
Treatment Options for Hemophilia A
The primary treatment for hemophilia A is factor VIII (FVIII) replacement therapy, delivered by infusion. Most patients use recombinant FVIII made with DNA technology, which is safer than plasma-derived products. MASAC recommends recombinant products for their lower risk of blood-borne infections.
People with severe hemophilia A are often prescribed prophylaxis—regular infusions to prevent bleeding. MASAC supports this as the optimal treatment approach.
Newer non-factor therapies, like emicizumab, offer preventive treatment via subcutaneous injection. Emicizumab is approved for people with and without FVIII inhibitors, including infants and children.
Other medications include:
DDAVP (desmopressin) – Used for mild hemophilia A in certain bleeding situations or before surgical procedures. It’s available as an injection.
Note: The nasal spray version (Stimate) remains off the market in the U.S.
Aminocaproic acid – An oral medication that preserves blood clots, commonly used for dental work or nose/mouth bleeds. MASAC recommends pairing it with clotting factor.
🔗 All FDA-approved treatments for hemophilia A
Treatment Options for Hemophilia B
The primary treatment for hemophilia B is clotting factor IX (FIX), often in recombinant form made with DNA technology, which avoids using human plasma. While plasma-derived FIX is still used, about 75% of patients now receive recombinant products, which are preferred by the National Bleeding Disorders Foundation’s Medical and Scientific Advisory Council (MASAC) for safety.
Factor therapy is typically infused through a vein or chest port. For those with severe hemophilia B, MASAC recommends routine prophylaxis—regular infusions to prevent bleeds, especially in children.
Aminocaproic acid is an oral antifibrinolytic used to help preserve blood clots, especially before dental procedures or for nose and mouth bleeds. MASAC advises taking factor first to form a clot, followed by aminocaproic acid to keep it stable.
WFH Guidelines for the Management of Hemophilia, 3rd Edition
Now Available: The 2020 edition of the WFH Guidelines for the Management of Hemophilia offers updated, evidence-informed recommendations on hemophilia care. This comprehensive global resource includes guidance on genetic assessment, novel therapies (including extended half-life factors and non-factor agents), and holistic care principles. Developed by a panel of international experts and people with hemophilia, the guidelines support healthcare professionals and advocacy organizations alike.