Empowering Older Adults to Discuss Advance Care Planning During Clinical Visits: The PREPARE Randomized Trial
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BACKGROUND/OBJECTIVES: A patient-directed, online program (PREPARE for Your Care [PREPARE]; prepareforyourcare.org) has been shown to increase advance care planning (ACP) documentation. However, the mechanisms underlying PREPARE are unknown. Our objectives were to compare the efficacy of PREPARE plus an easy-to-read advance directive (AD) vs an AD alone to increase active patient participation in ACP discussions during clinic visits and to examine effects of active patient participation on ACP documentation. DESIGN: Audio recordings of postintervention primary care visits from two randomized trials (2013-2016). SETTING: Seven primary care clinics at a veterans affair and safety-net hospital in San Francisco, CA. PARTICIPANTS: English- and Spanish-speaking adults, aged 55 years and older, with two or more chronic/serious conditions. INTERVENTION: PREPARE plus an easy-to-read AD or an AD alone. MEASUREMENTS: The primary outcome was the number of active patient participation utterances about ACP (eg, asking questions, stating preferences) measured by the validated Active Patient Participation Coding Scheme. We examined differences in utterances by study arm using mixed effects negative binomial models and utterances as a mediator of PREPARE's effect on documentation using adjusted logistic regression. Models were adjusted for health literacy, prior care planning, and clinician. RESULTS: Among 393 participants, the mean (SD) age was 66 (8.1) years, 120 (30.5%) had limited health literacy, and 99 (25.2%) were Spanish speaking. PREPARE plus the AD resulted in 41% more active patient participation in ACP discussions compared with the AD alone (mean [SD] = 10.1 [16.8] vs 6.6 [13.4] utterances; incidence rate ratio = 1.41; 95% confidence interval = 1.00-1.98). For every additional utterance, participants had 15% higher odds of ACP documentation, and active patient participation accounted for 16% of PREPARE's effect on documentation. CONCLUSIONS: The PREPARE program and easy-to-read AD empowered patients to actively participate in ACP discussions during clinical visits more than the AD alone. Increased activation was associated with increased ACP documentation. Therefore, PREPARE may mitigate barriers to ACP among English- and Spanish-speaking older adults. TRIAL REGISTRATION: ClinicalTrials.gov identifiers: "Improving Advance Care Planning by Preparing Diverse Seniors for Decision Making (PREPARE)" NCT01990235 and "Preparing Spanish-Speaking Older Adults for Advance Care Planning and Medical Decision Making (PREPARE)" NCT02072941. J Am Geriatr Soc 68:1210-1217, 2020.
author list (cited authors)
Freytag, J., Street, R. L., Barnes, D. E., Shi, Y., Volow, A. M., Shim, J. K., Alexander, S. C., & Sudore, R. L.