The goal of advance care planning (ACP) is to ensure that people receive medical care consistent with their values, goals, and preferences during serious and chronic illness. ACP may be particularly important for stroke patients because of their high risk of mortality, recurrent stroke, dementia, and treatments that may impose a mortality-disability trade-off. Yet ACP is limited among stroke survivors, particularly minoritized stroke survivors.1 In a non-prespecified subgroup analysis of a randomized trial, we compared the efficacy of the PREPARE for Your Care (PREPARE) plus an easy-to-read advance directive (AD) to an AD alone among stroke survivors.
Methods
PREPARE is an interactive digital program with easy-to-read, state-specific ADs, video stories, pamphlets, and a “movie” version of the interactive program. In a randomized controlled trial of safety net, primary care patients, PREPARE plus the AD vs. the AD alone increased ACP.2
Stroke was defined using the International Classification of Diseases codes. The primary outcome was new ACP documentation in the electronic medical record after 12 months; secondary outcomes were self-reported ACP completion measured with the validated Advance Care Planning Engagement Survey (ACPES),3 and helpfulness. The validated 4-item ACPES assesses readiness to engage in 4 critical ACP elements: (1) signing official papers naming a surrogate decision maker; (2) discussion of patients’ wishes with surrogates; (3) discussion of patients’ wishes with medical providers; and (4) completion of an AD measured on a 5-point Likert scale (“I’ve never thought about it” to “I’ve already done it”). Responses were dichotomized for “I have already done it” responses vs. other responses, creating an ordinal scale from 0–4 for the 4 ACP elements. We calculated the change from baseline to 12-month follow-up. As an exploratory outcome, we measured change in the average 5-point Likert score.3 Descriptive statistics were used for unadjusted analyses, and mixed-effects regression models adjusted for health literacy (adequate or limited), baseline ACP documentation, and clustering by physician were used. The data that support the findings of this study are available
for consideration to rebecca.sudore@ucsf.edu for use of deidentified data collected during the PREPARE trial, subject to approval by the study team, requesters’ local IRB, and institutional data use agreements. A modified consent process designed for vulnerable populations was performed in the trial and was approved by the University of California, San Francisco (UCSF) institutional review board.4
Results
Of 986 PREPARE trial participants, 91 (9.2%) were stroke survivors. The mean age was 64 years (SD, 6.8 years), 47% were women, 74% identified as a minority race/ethnicity, 40% were Spanish-speaking, 49% had limited health literacy, and 41% had ACP before enrollment.
Of stroke survivors, 72 (31 in the PREPARE arm --retention 82% and 41 in the AD-only arm --retention 77%) had complete outcome data. There were trends toward greater ACP documentation and change in ACPES scores in PREPARE vs the AD-only arm. The PREPARE arm had significantly greater increase in completed ACP elements than the AD-only arm (Table). Perceived helpfulness was higher in the PREPARE arm (4.4 (0.9) vs. 4.0 (0.8), P<0.01)
Table :
ACP Outcomes
| Unadjusted | Adjusted | |||||
|---|---|---|---|---|---|---|
| Outcome | PREPARE Arm n=31 | AD-Only Arm n=41 | P-Value | PREPARE Arm n=31 | AD-Only Arm n=41 | P-Value |
| ACP documentation % ( at 12 months | 42.1% | 45.3% | 0.76 | 44.5%, (27.1–61.8%) | 38.9%, (23.1–54.6%) | 0.63 |
| Change in completion of elements of ACP, mean (SD) | 1.26 (1.46) | 0.59 (1.50) | 0.055 | 1.28 (0.76–1.80) | 0.57 (0.12–1.02) | 0.045 |
| Odds ratio: 2.31 95% confidence interval: 0.98,5.45 |
Odds ratio: 2.47 95% confidence interval: 1.02, 5.98 |
|||||
| Change in ACPES score, mean (SD) | 0.81 (1.53) | 0.57 (0.96) | 0.47 | 0.85 (0.38–1.32) | 0.54 (0.14–0.96) | 0.35 |
Acknowledgments
Discussion
The digital PREPARE program and easy-to-read ADs show promise to engage ethnically diverse stroke survivors in ACP and should be studied further. Addition of stroke-specific content and engagement of acute stroke survivors in adaptations may increase the impact of the program.
Funding:
NIH/NIA R01AG059733, K24AG054415, K99DK129785.
Disclosure statement:
Dr Skolarus reports grants from American Heart Association.Dr Burke reports compensation from American Heart Association for other services. Drs. Skolarus, Reynolds, Brown and Sudore report grants from the NIH.
Non-standard Abbreviations and Acronyms:
- ACP
advance care planning
- AD
advance directive
- ACPES
Advance Care Planning Engagement Survey
References
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