Preparing Surrogates for Decision-Making: Development and Pilot Testing of PREPARE For THEIR Care

Abstract

Context: Surrogate decision-makers have expressed the need for better preparation around communication and medical decision-making.

Objectives: This mixed-methods feasibility study aimed to assess the feasibility and usability of an online program to prepare surrogates for their role.

Methods: We developed a 2-part program for surrogates called PREPARE For THEIR Care with a diverse group of Community Advisory Board members and caregivers recruited from the National Patient Advocacy Foundation. We conducted pilot testing of the program with caregivers. Using validated surveys, we assessed the feasibility and usability of the program and measured pre-to-post Advance Care Planning (ACP) Engagement among caregiver participants.

Results: Of the 26 pilot participants, mean age was 52 ± 12.7 years; 27% were men, 4% were nonbinary, 27% identified as Asian, 27% Black, 11% Multi-Racial, and 35% White. Participants found the program to be informative, comprehensive, and easy to use. Ease-of-use was rated 9.6 ± 0.92 on a 10-point scale; and, on 5-point scales, comfort using the program was rated 4.8 ± 0.51, helpfulness 4.6 ± 0.65, and likelihood to recommend to others 4.7 ± 0.53. There was improvement comparing pre- and postsurveys in readiness to engage in ACP for others (4.23 ± 0.67) to 4.47 ± 0.73), P = 0.04) and for self (3.55 ± 1.36) to (3.89 ± 1.06), P = 0.02).

Conclusion: In this pilot study, the prepare for their care program resulted in high user satisfaction and improved pre-to-post surrogate readiness to engage in ACP. Larger trials are needed to evaluate the impact of the program on surrogate readiness and confidence.