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    Poster Networking

    Hemophilia and Rare Bleeding Disorders

    Poster Networking Session

    PB1254 - A New Tool to Assist in Treatment Selection – The World Federation of Hemophilia (WFH) Shared Decision-Making (SDM) Tool

    Tuesday, June 27, 2023
    18:30 – 19:30 ET
    Room: Exhibition
    Background: Shared Decision-Making (SDM) is a stepwise process to aid a patient’s decision-making when multiple treatment options are available. SDM allows individuals to balance risks and benefits among treatment options. The availability of new hemophilia treatments makes the process of selecting the most appropriate treatment more complex and challenging for both people with hemophilia (PwH) and their healthcare team. A framework to facilitate discussion will help navigate the complexities of factor and non-factor replacement as well as gene therapies.

    Aims: What matters most to an individual PwH will vary or change between individuals, and over time. The SDM tool aims to assist PwH in evaluating and comparing treatment options based on their current values, preferences, and concerns. The tool facilitates a discussion between PwH and their healthcare teams, leading to an ability to compare classes of treatment and make an informed decision.

    Methods: The SDM tool consists of three interlinked components: a web-based interactive decision-support system, educational content on five treatment classes (standard half-life clotting factor concentrate (CFC), extended half-life CFC, bispecific antibodies, hemostatic rebalancing agents, and gene therapies), and an accompanying interactive PDF booklet. PwH are guided through the decision-making process. This includes an assessment of PwH values and preferences, educational content on the treatment classes, definition of important concepts, and an evidence-based comparison of treatment class attributes including efficacy, safety, and requirements for implementation and treatment follow-up. An expert team will curate and update content.

    Results: The output of SDM will be an individualized summary, including a shareable PDF of individual values, preferences, and concerns and a comparison of the treatment classes.

    Conclusion(s): SDM is a key component of PwH and healthcare team partnership. In the context of complex information, the WFH SDM tool will provide a framework to make an evidence-based personalized treatment decision.