ArticleHaemophilia : the official journal of the World Federation of Hemophilia2025
Enhancing Engagement to Support Shared Decision Making Within Haemophilia: Development of Materials for People With Haemophilia, Caregivers and Healthcare Professionals.
Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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Who cites it
2 citing papers in PubMed.
- Construction of a Shared Decision-Making Program for Chronic Pain Management in Adult Patients with Hemophilic Arthropathy.Patient preference and adherence · 2026Article
- Enhancing Engagement to Support Shared Decision Making Within Haemophilia: Development of Materials for People With Haemophilia, Caregivers and Healthcare Professionals.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
introductionTreatment decision making can be complex and challenging for people with haemophilia (PwH) and their caregivers. A shared decision-making (SDM) approach can ensure that decisions about treatment and care incorporate patients' beliefs, values, and preferences.
aimsThe aims were to: (1) identify potential drivers and barriers to SDM between PwH/caregivers and clinicians, (2) develop tools to facilitate SDM in clinic appointments, and (3) gain feedback on the usability and design of these tools to inform refinements.
methodsVirtual focus groups were conducted with adolescent and adult PwH, caregivers of children with haemophilia, and physicians and allied health professionals (AHPs) across Canada to inform the development of tools to support SDM in clinical appointments. The usability and acceptability of the tools were examined in one-to-one interviews. These findings were used to further refine the tools.
resultsThematic analysis from five focus groups (n = 23) identified broad themes pertaining to barriers of SDM, factors influencing treatment decisions, and strategies to facilitate SDM. Insights were used to develop an Appointment Planner including pre-appointment questions and priority setting for PwH/caregivers and a Conversational Prompt Guide including considerations for clinicians. The findings of one-to-one interviews (n = 25) indicated good usability and acceptability and informed minor refinements to the tools.
conclusionThe study demonstrates the acceptability of specific tools to facilitate SDM based on qualitative research with the target populations. Initial feedback was positive. Further research is required to assess whether the tools can facilitate SDM by improving communication and strengthening relationships between PwH/caregivers and clinicians.
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Registered trials
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