Context Standardized outcomes that define successful advance care planning (ACP) are lacking. Objective To create an Organizing Framework of ACP outcome constructs and rate the importance of these outcomes. Methods This study convened a Delphi panel consisting of 52 multidisciplinary, international ACP experts including clinicians, researchers, and policy leaders from four countries. We conducted literature reviews and solicited attendee input from 5 international ACP conferences to identify initial ACP outcome constructs. In 5 Delphi rounds, we asked panelists to rate patient-centered outcomes on a 7-point “not-at-all” to “extremely important” scale. We calculated means and analyzed panelists’ input to finalize an Organizing Framework and outcome rankings. Results Organizing Framework outcome domains included process (e.g., attitudes), actions (e.g., discussions), quality of care (e.g., satisfaction), and healthcare (e.g., utilization). The top 5 outcomes included (1) care consistent with goals, mean 6.71 (±SD 0.04); (2) surrogate designation, 6.55 (0.45); (3) surrogate documentation, 6.50 (0.11); (4) discussions with surrogates, 6.40 (0.19); and (5) documents and recorded wishes are accessible when needed 6.27 (0.11). Advance directive documentation was ranked 10th, 6.01 (0.21). Panelists raised caution about whether “care consistent with goals” 6.01 (0.21). Panelists raised can be reliably measured. Conclusion A large, multidisciplinary Delphi panel developed an Organizing Framework and rated the importance of ACP outcome constructs. Top rated outcomes should be used to evaluate the success of ACP initiatives. More research is needed to create reliable and valid measurement tools for the highest rated outcomes, particularly “care consistent with goals.”

IMPORTANCE Documentation rates of patients' medical wishes are often low. It is unknown whether easy-to-use, patient-facing advance care planning (ACP) interventions can overcome barriers to planning in busy primary care settings.OBJECTIVE To compare the efficacy of an interactive, patient-centered ACP website (PREPARE) with an easy-to-read advance directive (AD) to increase planning documentation. DESIGN, SETTING, AND PARTICIPANTSThis was a comparative effectiveness randomized clinical trial from April 2013 to July 2016 conducted at multiple primary care clinics at the San Francisco VA Medical Center. Inclusion criteria were age of a least 60 years; at least 2 chronic and/or serious conditions; and 2 or more primary care visits; and 2 or more additional clinic, hospital, or emergency room visits in the last year.INTERVENTIONS Participants were randomized to review PREPARE plus an easy-to-read AD or the AD alone. There were no clinician and/or system-level interventions or education. Research staff were blinded for all follow-up measurements. MAIN OUTCOMES AND MEASURESThe primary outcome was new ACP documentation (ie, legal forms and/or discussions) at 9 months. Secondary outcomes included patient-reported ACP engagement at 1 week, 3 months, and 6 months using validated surveys of behavior change process measures (ie, 5-point knowledge, self-efficacy, readiness scales) and action measures (eg, surrogate designation, using a 0-25 scale). We used intention-to-treat, mixed-effects logistic and linear regression, controlling for time, health literacy, race/ethnicity, baseline ACP, and clustering by physician. RESULTSThe mean (SD) age of 414 participants was 71 (8) years, 38 (9%) were women, 83 (20%) had limited literacy, and 179 (43%) were nonwhite. No participant characteristic differed significantly among study arms at baseline. Retention at 6 months was 90%. Advance care planning documentation 6 months after enrollment was higher in the PREPARE arm vs the AD-alone arm (adjusted 35% vs 25%; odds ratio, 1.61 [95% CI, 1.03-2.51]; P = .04). PREPARE also resulted in higher self-reported ACP engagement at each follow-up, including higher process and action scores (P <.001 at each follow-up).CONCLUSIONS AND RELEVANCE Easy-to-use, patient-facing ACP tools, without clinicianand/or system-level interventions, can increase planning documentation 25% to 35%. Combining the PREPARE website with an easy-to-read AD resulted in higher planning documentation than the AD alone, suggesting that PREPARE may increase planning documentation with minimal health care system resources. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT01550731

Context We have reconceptualized advance care planning (ACP) as a multi-step process focused on preparing patients with skills needed for communication and in-the-moment decision making. Objectives To operationalize this paradigm, we created an easy-to-use ACP website (prepareforyourcare.org) based on a theoretical framework of behavior change and pilot-tested its efficacy to engage older adults in ACP. Methods At baseline and one week after viewing the PREPARE website, we assessed behavior change in ACP using a validated survey that includes Process Measures (knowledge, contemplation, self-efficacy, and readiness, 5-point Likert scales) and Action Measures (yes/no whether an ACP behavior was completed). We also assigned participants into behavior change stages (i.e., precontemplation, contemplation, preparation, action, maintenance) and determined the percentage of participants who moved from precontemplation at baseline to higher stages at one week. We also assessed PREPARE ease-of-use (10-point scale, 10 being the easiest). Changes were assessed with paired t-tests and McNemar’s tests. Results Participants’ mean age was 68.4 years (SD 6.6) and 65% were non-white. Process Measures average Likert scores increased from 3.1 (0.9) to 3.7 (0.7), P <0.001. Action Measures did not change significantly. However, precontemplation significantly decreased for most actions, (e.g., talking to doctor about desired medical care, 61% to 35%, P<0.003), with a mean decrease of 21% (range, 16%-33%). PREPARE was rated a 9 out of 10 (±1.9) for ease-of-use. Conclusion A new, patient-centered ACP website that focuses on preparing patients for communication and decision making significantly improves engagement in the process of ACP and behavior change. A clinical trial of PREPARE is currently underway.