Accepted for/Published in: JMIR Aging
Date Submitted: May 2, 2024
Open Peer Review Period: May 10, 2024 - Jul 5, 2024
Date Accepted: Oct 18, 2024
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Empowering patients with heart failure and their caregivers: Development and usability of the “My Voice” advance care planning website
ABSTRACT
Background:
Web-based advance care (ACP) interventions offer a promising solution to improve ACP engagement. However, there is lack of web-based ACP decision aids tailored for patients with heart failure, incorporating mechanisms to revisit patients’ care goals, and rarely involve caregivers.
Objective:
To develop and assess the usability and acceptability of a web-based advance care planning (ACP) decision aid named “My Voice”, tailored for patients with heart failure and their caregivers.
Methods:
The study team and advisory board co-developed the content for both patient and caregiver modules in “My Voice”. Employing a mixed methods approach, we iteratively tested usability and acceptability, incorporating feedback from patients, caregivers, and healthcare providers.
Results:
We interviewed 30 participants (11 patients, 9 caregivers, and 10 healthcare providers). Participants found the website easy to navigate, with simple and clear content facilitating communication of patients’ values and goals. They also appreciated that it allowed them to revisit their care goals periodically. Feedback prompted revisions to enhance user-friendliness for older patients, reduce wordiness, and increase empathy. The website met usability thresholds for all participant groups. Patients and caregivers’ ratings met acceptability thresholds for all items; healthcare providers’ ratings met acceptability thresholds for 11 of the 15 items.
Conclusions:
“My Voice” shows promise as a tool for patients with heart failure to initiate and revisit ACP conversations with providers and caregivers. We will evaluate its efficacy in improving patient and caregiver outcomes in a randomized controlled trial. Clinical Trial: Not applicable
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