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

Shared decision-making (SDM) is a collaborative process in which people with haemophilia (PWH) and healthcare professionals (HCPs) make treatment decisions informed by the best available evidence and aligned with patient values, preferences and goals. The expanding treatment landscape, including standard, extended and ultra-half-life factors, rebalancing agents, bispecific antibodies and gene therapy, has made SDM an essential element of quality haemophilia care. Despite recognition of its importance in international health policy frameworks and haemophilia-specific guidelines, implementation in clinical practice remains inconsistent, with limited guidance on best practices.

To address this gap, the World Federation of Hemophilia (WFH), in partnership with the European Association for Haemophilia and Allied Disorders (EAHAD) and the European Haemophilia Consortium (EHC), took a multi-stakeholder consensus initiative to develop best practice statements for SDM in haemophilia.

A structured, modified Delphi process was used during a March 2025 workshop in Lisbon, Portugal, with 27 participants (13 HCPs and 14 PWH) from 15 Western European countries. Participants identified key challenges, drafted candidate statements and engaged in two rounds of anonymous voting with predefined consensus thresholds. Following literature review and facilitated small- and large-group discussions, 20 candidates' best practice (BP) statements were drafted and voted on in 2 Delphi rounds. Consensus was defined as ≥70% of participants rating a statement 7-9 (critical to include) and ≤15% rating 1-3 (not important).

Iterative refinement yielded 15 BP statements achieving consensus. These were organized into three domains: (1) knowledge and tools, (2) patient characteristics and support and (3) HCP-PWH relationship and system infrastructure. Recommendations emphasized embedding SDM into routine care, ensuring adequate time and resources as well as early patient preparation, accessible information in local languages, multidisciplinary involvement and reflection opportunities post consultation.

To the best of the authors' knowledge, this work represents the first consensus-based framework for implementing SDM in haemophilia, offering practical, stakeholder-driven guidance to support its integration into clinical practice and improve patient-centred outcomes.