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 participants

This 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 measures

The 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.

Results

The 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 clinician- and/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

Advance care planning (ACP) engagement includes a wide range of behaviors and actions related to discussions and documentation, yet few ACP intervention studies measure the full process.

Objectives

The objective of the study was to compare the effects of an easy-to-read advance directive (AD) versus an ACP web site plus the AD (PREPARE + AD) on Behavior Change Processes and Actions, including discussions and documentation.

Methods

Secondary data were from a completed ACP trial. Participants were primary care patients, ≥60 years old, with two comorbidities. We used the validated ACP Engagement Survey to examine six-month change in subscales measuring Behavior Change Processes (knowledge, contemplation, self-efficacy, readiness) and Actions (decision makers, quality of life, flexibility for decision makers, asking clinicians questions), specifically related to discussions and documentation. We used adjusted mixed-effects linear models to compare mean change and engagement over time.

Results

Compared to the AD-only, PREPARE + AD resulted in greater increases in all Behavior Change Processes subscales and Actions related to decision makers, quality of life, and flexibility (all P-values ≤0.005). Both interventions significantly increased the proportion of participants who engaged in ACP discussions (PREPARE + AD, 99.5%; AD-only, 93.3%) and documentation (PREPARE + AD, 99.5%; AD-only, 90.4%), with greater increases for PREPARE + AD (all P-values <0.001).

Conclusion

Both PREPARE plus an easy-to-read AD and an AD-only markedly increased ACP engagement in a full range of ACP behaviors, including discussions and documentation, and engagement was nearly 100% with PREPARE + AD. Future ACP studies should examine a full range of ACP behaviors beyond ADs and the impact of PREPARE and easy-to-read AD implementation on health care systems.

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.

BACKGROUND:Millions of older adults require Medicaid-funded home care, referred to as In-Home Supportive Services (IHSS). Many of these individuals experience serious illness, disability, and common symptoms such as pain and shortness of breath. OBJECTIVE:To explore whether and how to integrate symptom assessment into an IHSS program to identify and manage symptoms in diverse older adults who receive in-home care. DESIGN:Qualitative study comprising 10 semistructured focus groups. SETTING AND SUBJECTS:Fifty San Francisco IHSS administrators, case managers, providers, and consumers. MEASUREMENTS:Two authors double-coded transcripts and conducted thematic analysis. RESULTS:Four main themes emerged from the data: (1) Large unmet needs: gaps in understanding, training, standard assessment, and untreated symptoms, including identifying loneliness as a symptom; (2) Potential barriers: misunderstanding of palliative care, consumer reluctance, and the added burden on IHSS workforce; (3) Facilitators: consumer and provider buy-in and perceived benefits of such a symptom assessment program, and the ability to build on current IHSS relationships and infrastructure; and (4) Implementation logistics: taking an individualized, optional approach; consider appropriate messaging about quality of life and not end of life; and creating standardized, easy-to-use procedures, tools, training, and workflow to support providers. CONCLUSIONS:An IHSS symptom assessment program is desired, needed, and feasible and can leverage the established IHSS infrastructure and relationships of consumers and IHSS providers to assess symptoms in the home. Acknowledging consumer choice, developing appropriate tools and trainings for IHSS staff, and effective messaging of program goals can contribute to success.