A communication toolkit for the most impactful symptoms of Fabry disease: co-creation with Fabry disease patients and their treating clinicians in the UK

Abstract

Aim: To co-create a communication aid with patients with Fabry disease (FD) and FD specialists.

Methods: The co-development of the aid involved four steps: (1) need validation and insight gathering through focus groups and review of existing resources and literature; (2) expert review of focus group findings and drafting of the aid; (3) wider patient review of the draft materials at a FD patient conference; and (4) real-world evaluation following the aid’s launch.

Results: Eight patients participated in one focus group and five FD specialists participated in another. In a wider patient review, a feedback survey was completed by 57 patients. Patients in the focus group reported pain, fatigue and gastrointestinal symptoms as most impactful. Most patients preferred a shared rather than a paternalistic approach to decision-making and FD specialists agreed that all decisions should be shared. Insight gathering revealed that barriers to shared decision-making (SDM) included patient fears of being dismissed, challenges to recall or communication and time constraints. Enablers to SDM included patient empowerment, patient preparation for appointments and positive relationships between patients and healthcare professionals. Overall, 97.7% (42/43) of patients participating in a survey considered that the toolkit would/might encourage them to discuss concerns with their FD specialist.

Conclusion: Insights from the study underline the need for a communication aid to facilitate patient preparation for appointments, discussions and decisions about FD. The resulting toolkit has been co-created to empower patients and help specialists and patients make the best decisions for each individual.

Keywords

Fabry disease / shared decision making / patient decision aids / rare disease / co-creation

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