OR10 - WFH, EAHAD, and EHC: Best Practice Recommendations for Implementing Shared Decision Making in Hemophilia

OR10

WFH, EAHAD, and EHC: Best Practice Recommendations for Implementing Shared Decision Making in Hemophilia

S. Clairmont¹, D. Coffin^1,*, R. Klamroth², M. Crato³, E. Clearfield ⁴, C. Hermans⁵, K. Kocharyn⁶, M. E. Mancuso^7,⁸, S. Mekhuzla ⁶, T. Sannie⁹, M. W. Skinner^10,¹¹, G. F. Pierce⁶

¹Data and Research, World Federation of Hemophilia, Montreal, Canada, ²European Association for Haemophilia and Allied Disorders, ³European Hemophilia Consortium , Brussels, Belgium, ⁴Independent Consultant, Montreal, Canada, ⁵Haemostasis and Thrombosis Unit, Division of Haematology, St-Luc University Hospital, Brussels, Belgium, ⁶World Federation of Hemophilia, Montreal, Canada, ⁷Humanitas University, Milan, ⁸Center for Thrombosis and Hemorrhagic Diseases, IRCCS Humanitas Research Hospital, Rozzano, Milan, Italy, ⁹Association Française des Hémophiles, Paris, France, ¹⁰Institute for Policy Advancement Ltd, Washington, DC, United States, ¹¹McMaster University, Hamilton, Canada

Introduction: Shared decision-making (SDM) is increasingly recognized as essential in quality hemophilia care. Despite such recognition and the inclusion of SDM in international guidelines, practical implementation remains inconsistent. To address this gap, the WFH, the EAHAD, and the EHC, conducted a multi-stakeholder consensus initiative to develop best practice (BP) recommendations to support implementation of SDM in hemophilia care.

Methods: A modified Delphi process was conducted involving 27 participants (14 healthcare professionals and 13 people with hemophilia/caregivers) from 15 Western European countries. Participants engaged in small- and large-group discussions to identify challenges and draft candidate BP statements. Two rounds of anonymous voting were conducted using predefined consensus criteria (≥70% rating 7–9 and ≤15% rating 1–3). Statements were refined iteratively based on feedback and discussion.

Results: The process yielded 15 consensus BP statements across three domains:

1. Knowledge and Tools:

- Includes 3 BP statements that focus on the development accessibility, and ongoing improvement of SDM resources.

2. Patient Characteristics and Support

- Includes 4 BP statements that address how individual needs, family involement, and life-stage transitions shape participation in SDM and the supports required to ensure patients can engage meaningfully.

3. HCP–PWH Relationship and System Infrastructure

- Includes 8 BP statements that emphasize embedding SDM within routine, multidisciplinary care through adaquate time, resources, and collaboration across hemophilia treatment centres and patient organizations.

Discussion/Conclusion: This study presents the first stakeholder-driven, consensus-based framework for implementing SDM in hemophilia care. The recommendations align with known facilitators and barriers and offer actionable strategies to enhance patient-centered care. While developed in Western Europe, the framework may be adaptable to other regions and conditions with complex treatment choices.

Disclosure of Interest: S. Clairmont Employee of: Sarah Clairmont is a full-time employee of the WFH, D. Coffin Employee of: Donna Coffin is a full-time employee of the WFH, R. Klamroth Consultant for: received honoraria for advisory boards from Bayer, Biotest, Biomarin, CSL Behring, Grifols, Kedrion, Leo, LFB, Novo Nordisk, Octapharma, Pfizer, Roche/Chugai, Sanofi, SOBI, Takeda, Viatris, Speaker Bureau of: received honoraria for lectures from Bayer, Biotest, Biomarin, CSL Behring, Grifols, Kedrion, Leo, LFB, Novo Nordisk, Octapharma, Pfizer, Roche/Chugai, Sanofi, SOBI, Takeda, Viatris, M. Crato Employee of: Miguel Crato is the President of the EHC, E. Clearfield Consultant for: Elizabeth Clearfield is a paid consultant for the WFH, C. Hermans Grant/Research support from: Cedric Hermans has research funding from: CSL Behring and Sobi, Speaker Bureau of: honoraria and speaker’s bureau fees: LFB, CSL Behring, Hoffmann-La Roche, Novo Nordisk, Octapharma, Pfizer, Sobi, Sanofi, Regeneron, Biomarin., K. Kocharyn Employee of: Karine Kocharyn is a full time employee of the WFH, M. E. Mancuso Grant/Research support from: Maria Elisa Mancuso received research support from Bayer, CSL Behring, Novo Nordisk, Takeda; , Consultant for: on Advisory Board and Consultant for Bayer, Biomarin, CSL Behring, Kedrion, LFB, Novo Nordisk, Octapharma, Pfizer, Regeneron, Roche, Sanofi, Sobi, Takeda. , S. Mekhuzla Employee of: Salome Mekhuzla is a full time employee of the WFH., T. Sannie: None declared, M. Skinner Grant/Research support from: nstitution received research support for the PROBE study and core outcomes studies as part of an independent investigator-initiated research project.; MS Institution received research support, honoraria or fees from: Band Therapeutics, Bayer, Biomarin, Chugai, CSL, Genentech, Novo Nordisk, Roche, Pfizer, Sanofi, Sobi, Takeda and Vega Therapeutics, Blue Cross Blue Shield Medical Advisory Panel, as a consultant for the National Bleeding Disorders Foundation (NBDF), and serves on advisory or governance boards of ICER, NORD, and WFH USA, G. Pierce Consultant for: BioMarin, Novo Nordisk, Regeneron, Genetech-Roche, Sanofi, Spark Therapeutics, St. Jude Children's Hospital, and Third Rock Ventures; advisory boards for Be Bio, Rontera, hC Bio, Metgenomi, US National Bleeding Disorders Foundation Medical and Scientific Advisory Council (NBDF MASAC), and the ISTH Gene Therapy Working Group; and director of WFH and Voyager Therapeutics.