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Implementing Shared Decision-Making in Haemophilia Care: Best Practice Recommendations From a Western European

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Summary

This study developed 15 best practice statements for shared decision-making (SDM) in haemophilia care. These guidelines aim to improve treatment choices for people with haemophilia (PWH) by fostering collaboration with healthcare professionals (HCPs).

Keywords:
clinical practicehaemophiliashared decision‐making

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Area of Science:

  • Haematology
  • Medical Ethics
  • Health Policy

Background:

  • Shared decision-making (SDM) is crucial for optimal haemophilia care amidst evolving treatments.
  • Implementation of SDM in clinical practice is inconsistent, lacking clear best practice guidance.
  • The World Federation of Hemophilia (WFH) initiated a consensus project to address this gap.

Purpose of the Study:

  • To develop consensus-based best practice statements for SDM in haemophilia.
  • To provide practical guidance for integrating SDM into routine haemophilia care.
  • To improve patient-centered outcomes through enhanced treatment decision-making.

Main Methods:

  • A modified Delphi process involving 27 participants (13 HCPs, 14 PWH) from 15 Western European countries.
  • Two rounds of anonymous voting on candidate best practice statements with predefined consensus thresholds.
  • Literature review and facilitated group discussions to refine statements.

Main Results:

  • Fifteen best practice (BP) statements achieved consensus.
  • Statements cover knowledge/tools, patient characteristics/support, and HCP-PWH relationship/infrastructure.
  • Recommendations include embedding SDM, adequate resources, patient preparation, accessible information, and multidisciplinary involvement.

Conclusions:

  • This work presents the first consensus-based framework for SDM implementation in haemophilia.
  • The framework offers practical, stakeholder-driven guidance for clinical integration.
  • The goal is to enhance patient-centered care and outcomes in haemophilia management.