Development of a support tool for hepatitis C virus treatment decision making

Abstract Background: Timely initiation of treatment for hepatitis C virus (HCV) is essential for reducing both transmission and long-term health impacts. Decision support tools can assist patients by enhancing understanding, clarifying personal priorities, and guiding treatment selection. Methods: This exploratory, sequential mixed-methods study aimed to identify the key priorities for an HCV treatment decision aid and to co-create the tool with expert HCV nurses and people with lived and living experience. In phase 1, three focus groups with HCV nurse providers identified several central needs, while in phase 2, 30 participants with HCV experience reviewed the prototype tool using a questionnaire. Results: Phase 1 findings described the need for the tool to include support for newer providers; strategies to manage limited time, to address health literacy, and to tackle stigma and confidentiality concerns; and preferences related to layout, narrative elements, reminders, autonomy in treatment choices, side-effect information, provider communication, and linkage to care. In phase 2, Likert scale ratings (median scores range: 4–5) reflected strong endorsement, and qualitative responses emphasized four main areas: efficiency, clarity, content relevance, and visual design. Conclusions: Overall, the findings demonstrate that combining clinical expertise with lived experience can lead to the development of a meaningful patient-centred decision aid that supports informed choices about HCV treatment.