Abstract
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.
Highlights
Advance directives have traditionally been considered the gold standard for advance care planning
Completion of a written advance directive has been the gold standard for successful advance care planning and the main outcome used to determine whether advance care planning interventions are successful [2]
Given the paucity of surveys that measure the full scope of advance care planning, the goal of this study was to develop and validate a survey designed to quantify the process of behavior change, including knowledge, contemplation, self-efficacy, and readiness, as well as measure completion of multiple advance care planning behaviors
Summary
Advance directives have traditionally been considered the gold standard for advance care planning. Recent evidence suggests that advance care planning involves a series of multiple discrete behaviors for which people are in varying stages of behavior change. Advance care planning has been redefined as an ongoing process consisting of several discrete behaviors instead of a one time advance directive document [3,4]. These advance care planning behaviors include identifying ones’ evolving values and goals over the course of health and illness (not just at the end-oflife) and communicating these evolving values and goals to loved ones and physicians over time. With respect to advance care planning behaviors, research has demonstrated that individuals are in varying stages of behavior change for each discrete advance care planning behavior [4]
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