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.

IntroductionAdvance directives have traditionally been considered the gold standard for advance care planning. However, recent evidence suggests that advance care planning involves a series of multiple discrete behaviors for which people are in varying stages of behavior change. The goal of our study was to develop and validate a survey to measure the full advance care planning process.MethodsThe Advance Care Planning Engagement Survey assesses “Process Measures” of factors known from Behavior Change Theory to affect behavior (knowledge, contemplation, self-efficacy, and readiness, using 5-point Likert scales) and “Action Measures” (yes/no) of multiple behaviors related to surrogate decision makers, values and quality of life, flexibility for surrogate decision making, and informed decision making. We administered surveys at baseline and 1 week later to 50 diverse, older adults from San Francisco hospitals. Internal consistency reliability of Process Measures was assessed using Cronbach's alpha (only continuous variables) and test-retest reliability of Process and Action Measures was examined using intraclass correlations. For discriminant validity, we compared Process and Action Measure scores between this cohort and 20 healthy college students (mean age 23.2 years, SD 2.7).ResultsMean age was 69.3 (SD 10.5) and 42% were non-White. The survey took a mean of 21.4 minutes (±6.2) to administer. The survey had good internal consistency (Process Measures Cronbach's alpha, 0.94) and test-retest reliability (Process Measures intraclass correlation, 0.70; Action Measures, 0.87). Both Process and Action Measure scores were higher in the older than younger group, p<.001.ConclusionA new Advance Care Planning Engagement Survey that measures behavior change (knowledge, contemplation, self-efficacy, and readiness) and multiple advance care planning actions demonstrates good reliability and validity. Further research is needed to assess whether survey scores improve in response to advance care planning interventions and whether scores are associated with receipt of care consistent with one's wishes.

BackgroundAdvance care planning (ACP) is a process whereby patients prepare for medical decision-making. The traditional objective of ACP has focused on the completion of advance directives. We have developed a new paradigm of ACP focused on preparing patients and their loved ones for communication and informed medical decision-making. To operationalize this new paradigm of ACP, we created an interactive, patient-centered website called PREPARE (www.prepareforyourcare.org) designed for diverse older adults.Methods/DesignThis randomized controlled trial with blinded outcome assessment is designed to determine the efficacy of PREPARE to engage older Veterans in the ACP process. Veterans who are ≥ 60 years of age, have ≥ two medical conditions, and have seen a primary care physician ≥ two times in the last year are being randomized to one of two study arms. The PREPARE study arm reviews the PREPARE website and an easy-to-read advance directive. The control arm only reviews the advance directive. The primary outcome is documentation of an advance directive and ACP discussions. Other clinically important outcomes using validated surveys include ACP behavior change process measures (knowledge, contemplation, self-efficacy, and readiness) and a full range of ACP action measures (identifying a surrogate, identifying values and goals, choosing leeway or flexibility for the surrogate, communicating with clinicians and surrogates, and documenting one’s wishes). We will also assess satisfaction with decision-making and Veteran activation within primary care visits by direct audio recording. To examine the outcomes at 1 week, 3 months, and 6 months between the two study arms, we will use mixed effects linear, Poisson, or negative binomial regression and mixed effects logistic regression.DiscussionThis study will determine whether PREPARE increases advance directive completion rates and engagement with the ACP process. If PREPARE is efficacious, it could prove to be an easy and effective intervention to help older adults engage in the ACP process within or outside of the medical environment. PREPARE may also help older adults communicate their medical wishes and goals to their loved ones and clinicians, improve medical decision-making, and ensure their wishes are honored over the life course.Trial registrationClinicalTrials.gov NCT01550731. Registered on 8 December 2011.

Context Culturally diverse older adults may prefer varying control over medical decisions. Decision control preferences (DCPs) may profoundly affect advance care planning (ACP) and communication. Objectives To determine the DCPs of diverse, older adults and whether DCPs are associated with participant characteristics, ACP, and communication satisfaction. Methods A total of 146 participants were recruited from clinics and senior centers in San Francisco. We assessed DCPs using the Control Preferences Scale: doctor makes all decisions (low), shares with doctor (medium), makes own decisions (high). We assessed associations between DCPs and demographics; prior advance directives; ability to make in-the-moment goals of care decisions; self-efficacy, readiness, and prior asked questions; and satisfaction with patient-doctor communication (on a 5-point Likert scale), using Chi-square and Kruskal-Wallis analysis of variance. Results Mean age was 71±10 years, 53% were non-white, 47% completed an advance directive, and 70% made goals of care decisions. Of the sample, 18% had low DCPs, 33% medium, and 49% high. Older age was the only characteristic associated with DCPs (low: 75 years ±11, medium: 69±10, high: 70±9, P=0.003). DCPs were not associated with ACP, in-the-moment decisions, or communication satisfaction. Readiness was the only question-asking behavior associated (low: 3.8±1.2, medium: 4.1±1.2, high: 4.3±1.2, P=0.05). Conclusion Nearly one-fifth of diverse, older adults want doctors to make their medical decisions. Older age and lower readiness to ask questions were the only demographic variables significantly associated with low DCPs. Yet, older adults with low DCPs still engaged in ACP, asked questions, and reported communication satisfaction. Clinicians can encourage ACP and questions for all patients, but should assess DCPs to provide the desired amount of decision support.

No abstract

No abstract