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. 2024 Nov;30(6):1298-1308.
doi: 10.1111/hae.15100. Epub 2024 Oct 5.

Development of the World Federation of Hemophilia Shared Decision-Making Tool

Donna Coffin  1 , Mark W Skinner  2   3 , Courtney D Thornburg  4 , Brendan K Hayes  5 , Thomas Sannié  6 , Gwendolyn E Kaeser  7 , Julia Chadwick  1 , Mayss Naccache  1 , Glenn F Pierce  1
Affiliations

Development of the World Federation of Hemophilia Shared Decision-Making Tool

Donna Coffin et al. Haemophilia. 2024 Nov.

Abstract

Introduction: The use of shared decision-making (SDM) in clinical settings is becoming more prevalent. The evolving and increasingly complex treatment landscape of haemophilia management has augmented the need and desire for SDM between patients and their healthcare team. SDM tools have been used in other chronic conditions and can be an effective form of education for patients and clinicians.

Aim: The World Federation of Hemophilia (WFH) partnered with people with haemophilia (PWH), patient advocacy groups, and healthcare practitioners to form an expert working group to develop an educational tool for PWH and their caregivers. The primary objectives included educating PWH on the available prophylactic treatments and facilitating discussion between PWH and their healthcare team.

Methods: The tool was proposed and developed by the expert working group, workshopped at conference round tables, and evaluated in two focus groups.

Results: The interactive WFH SDM Tool guides users through the SDM treatment journey and provides an opportunity for reflection on current disease impact and treatment preferences, educational fact sheets and videos, and a comparison between treatment classes. Two forms of the SDM Tool are available: an online platform with a summary page that may be printed and shared and a printable workbook. All evidence in the tool is based on the prescribing information or phase III clinical trial publications. The Tool will be updated twice each year.

Conclusion: The WFH SDM Tool is the first available resource that translates published guidance on SDM in haemophilia into a practical, user-friendly tool aimed at facilitating patient-centred treatment decisions.

Keywords: SDM tool; bleeding disorders; haemophilia; management guidelines; shared decision‐making; treatment decisions.

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References

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