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?
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.
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.
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.
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.
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.
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.
ClinicalTrials.gov identifiers: NCT01990235 and NCT02072941
Identify all potential conflicts of interest that might be relevant to your comment.
Conflicts of interest comprise financial interests, activities, and relationships within the past 3 years including but not limited to employment, affiliation, grants or funding, consultancies, honoraria or payment, speaker's bureaus, stock ownership or options, expert testimony, royalties, donation of medical equipment, or patents planned, pending, or issued.
Err on the side of full disclosure.
If you have no conflicts of interest, check "No potential conflicts of interest" in the box below. The information will be posted with your response.
Not all submitted comments are published. Please see our commenting policy for details.
Sudore RL, Schillinger D, Katen MT, et al. Engaging Diverse English- and Spanish-Speaking Older Adults in Advance Care Planning: The PREPARE Randomized Clinical Trial. JAMA Intern Med. 2018;178(12):1616–1625. doi:10.1001/jamainternmed.2018.4657
Customize your JAMA Network experience by selecting one or more topics from the list below.
Create a personal account or sign in to: