Effect of an Interactive Website to Engage Patients in Advance Care Planning in Outpatient Settings

Abstract

PURPOSE Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www. prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics. METHODS We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement. RESULTS In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations. CONCLUSIONS Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.

Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review

“…That said, given the current heterogeneity of ACP outcomes, future research should consider using some standardized outcomes so that trial findings can be compared, as some studies are attempting 154,155 . Finally, pragmatic trials measuring implementation strategies in real‐world settings are needed, and several are underway 152,154‐156 . For effective ACP interventions, an impartial repository, as used in other fields, 157 may help disseminate the interventions to clinical champions.…”

Implementation of advance care planning amid the COVID‐19 crisis: A narrative review and synthesis

“…To support community‐based ACP conversations, the study results suggested the importance of online ACP resources. There are existing Web‐based ACP models developed in Western countries such as the USA, Ireland and Australia 47–49 . A previous study suggested that it is essential that important ACP information be included in the Electronic Health Record so that multiple clinicians, even from different healthcare organizations, can retrieve them, understand what is most important to patients, clarify their preferences for end‐of‐life care, and review all documents regularly to make sure they still accurately reflect their wishes 50 .…”

Adaptation and Preliminary Validation of the Advance Care Planning Engagement Survey for Surrogate Decision Makers

“…[17] The survey has been used as an outcome in several studies examining the impact of ACP interventions. [23,20,21] The ACP-55 question stems were reworded to apply to SDMs and then examined by an 8person panel of ACP researchers, clinicians, and laypersons for face validity. Resultantly, 8 items were removed and 6 items flagged for re-evaluation after data collection.…”

“…We opted not to change the wording of the question stems from the original survey because these stems were generated from focus groups including both patients and surrogates and the original survey was vetted extensively by patients. [18,23] Since our goal was to align the survey as closely as possible to the well-validated ACP-55, stems were kept as close to the original as possible.…”