Empowering Older Patients in Advance Care Planning: Evaluating MyCare™ as a Decision Support Tool

Older adults with serious illness often face treatment decisions shaped by personal values, yet recognising and expressing those values in ways that guide decision-making can be challenging. This study evaluated the acceptability, usability and effectiveness of MyCare, a digital values clarification tool designed to help older adults identify and communicate their care preferences to substitute decision-makers, healthcare providers and support persons.

This convergent mixed-methods study explored older adults' experiences with MyCare. Acceptability was assessed using the Theoretical Framework of Acceptability survey and qualitative interviews examining perceptions of the tool's relevance and ease of use. Usability was measured with the System Usability Scale and participant feedback on navigation and clarity. Potential effectiveness was evaluated based on self-reported ability to articulate and discuss care preferences. Semi-structured interviews explored these outcomes in depth and were analysed using thematic analysis.

A total of 15 participants (mean age = 83.5 years, SD = 7.6) were surveyed and interviewed between November 2024 and January 2025, including five dyads (one son and mother, three husband-wife pairs, and two sisters). Key themes identified included: (1) navigating autonomy and delegation in end-of-life decision-making, (2) fragmented communication, (3) influence of lived and observed experiences on care decisions, (4) fears around acceptable and unacceptable quality of life, and (5) using MyCare to promote proactive care planning. Participants reported moderate electronic health literacy, and survey results indicated high usability (SUS mean 83.2/100) and strong acceptability of MyCare, particularly in comfort, perceived value and ease of use.

MyCare demonstrated high acceptability and usability, with participants finding it effective in clarifying and communicating care preferences. It facilitated discussions about quality of life and decision-making, though challenges remain in addressing prognostic uncertainty and aligning preferences with realistic care goals. Future research should refine the tool to enhance its integration into routine healthcare settings.

A patient partner was involved from the outset of this study as a co-author and co-decision-maker in the design and development of MyCare. Their lived experience as the adult child of someone with a serious illness informed the structure and priorities of the tool to ensure its relevance to patient needs. Following this, we engaged additional patients as research participants to provide feedback on usability and functionality. Their insights are being used to refine and adapt MyCare to maximise its impact for future patients.