Enhancing Engagement to Support Shared Decision Making Within Haemophilia: Development of Materials for People With Haemophilia, Caregivers and Healthcare Professionals.

ABSTRACT:

Introduction

Treatment 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.

Aims

The 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.

Methods

Virtual 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 clinica

SUBMITTER: Meade L 

PROVIDER: S-EPMC12462608 | biostudies-literature | 2025 Sep

REPOSITORIES: biostudies-literature