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Original Investigation
December 2018

Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial

Author Affiliations
  • 1Division of Geriatrics, Department of Medicine, University of California, San Francisco
  • 2Geriatrics, Palliative, and Extended Care, San Francisco Veterans Affairs Health Care System, San Francisco, California
  • 3Northern California Institute for Research and Education, San Francisco
  • 4Innovation and Implementation Center for Aging and Palliative Care, Division of Geriatrics, Department of Medicine, University of California, San Francisco
  • 5Center for Vulnerable Populations, Zuckerberg San Francisco General Hospital, San Francisco, California
  • 6Department of Medicine, University of California, San Francisco
  • 7Division of General Internal Medicine, Department of Medicine, University of California, San Francisco
  • 8Department of Epidemiology & Biostatistics, University of California, San Francisco
  • 9Department of Psychiatry, University of California, San Francisco
JAMA Intern Med. 2018;178(12):1616-1625. doi:10.1001/jamainternmed.2018.4657
Key Points

Question  Can a patient-facing, online program called PREPARE For Your Care plus an easy-to-read advance directive increase advance care planning documentation and engagement compared with the easy-to-read advance directive alone?

Findings  In this randomized clinical trial of 986 English-speaking and Spanish-speaking older adults with chronic illness from 4 primary care clinics, PREPARE For Your Care plus an easy-to-read advance directive resulted in higher rates of advance care planning documentation (43.0% vs 32.0%) and engagement (98.1% vs 89.5%) compared with an advance directive alone.

Meaning  Patient-facing tools, including an online advance care planning program and an easy-to-read advance directive, may enable diverse populations to engage in the advance care planning process without additional clinician-level or system-level interventions.

Abstract

Importance  Advance care planning improves the receipt of medical care aligned with patients’ values; however, it remains suboptimal among diverse patient populations. To mitigate literacy, cultural, and language barriers to advance care planning, easy-to-read advance directives and a patient-directed, online advance care planning program called PREPARE For Your Care (PREPARE) were created in English and Spanish.

Objective  To compare the efficacy of PREPARE plus an easy-to-read advance directive with an advance directive alone to increase advance care planning documentation and patient-reported engagement.

Design, Setting, and Participants  A comparative efficacy randomized clinical trial was conducted from February 1, 2014, to November 30, 2017, at 4 safety-net, primary-care clinics in San Francisco among 986 English-speaking or Spanish-speaking primary care patients 55 years or older with 2 or more chronic or serious illnesses.

Interventions  Participants were randomized to PREPARE plus an easy-to-read advance directive (PREPARE arm) or the advance directive alone. There were no clinician-level or system-level interventions. Staff were blinded for all follow-up measurements.

Main Outcomes and Measures  The primary outcome was documentation of new advance care planning (ie, legal forms and/or documented discussions) at 15 months. Patient-reported outcomes included advance care planning engagement at baseline, 1 week, 3 months, 6 months, and 12 months using validated surveys. Intention-to-treat analyses were performed using mixed-effects logistic and linear regression, controlling for time, health literacy, and baseline advance care planning, clustering by physician, and stratifying by language.

Results  Among the 986 participants (603 women and 383 men), the mean (SD) age was 63.3 (6.4) years, 387 of 975 (39.7%) had limited health literacy, and 445 (45.1%) were Spanish speaking. No participant characteristic differed between the 2 groups, and retention was 85.9% (832 of 969) among survivors. Compared with the advance directive alone, PREPARE resulted in a higher rate of advance care planning documentation (unadjusted, 43.0% [207 of 481] vs 33.1% [167 of 505]; P < .001; adjusted, 43.0% vs 32.0%; P < .001) and higher self-reported increased advance care planning engagement scores (98.1% vs 89.5%; P < .001). Results remained significant among English speakers and Spanish speakers.

Conclusions and Relevance  The patient-facing PREPARE program and an easy-to-read advance directive, without clinician-level or system-level interventions, increased documentation of advance care planning and patient-reported engagement, with statistically higher gains for PREPARE vs advance directive alone. These tools may mitigate literacy and language barriers to advance care planning, allow patients to begin planning on their own, and could substantially improve the process for diverse English-speaking and Spanish-speaking populations.

Trial Registration  ClinicalTrials.gov identifiers: NCT01990235 and NCT02072941

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