Measuring advance care planning behavior in Dutch adults: translation, cultural adaptation and validation of the Advance Care Planning Engagement Survey

Abstract

Background Advance care planning (ACP) enables people to define, discuss, and record preferences for treatment and care. Measures of ACP behavior are lacking in the Netherlands. We aimed to translate, culturally adapt and validate the 34-item ACP Engagement Survey into Dutch. Methods Following validation guidelines, we tested content validity, internal consistency, reproducibility, construct validity, interpretability and criterion validity among persons with and without chronic disease. Results Forward-backward translation indicated the need of only minor adaptations. Two hundred thirty-two persons completed baseline and retest surveys; 121 were aged ≥60 years. Persons with chronic disease (n = 151) considered the survey more valuable than those without (66 vs. 59, p < 0.001, scale of 20–100), indicating good content validity. Internal consistency (Cronbach’s alpha: 0.97) and reproducibility (intraclass correlation: 0.88) were good. Total ACP Engagement was higher among persons with chronic disease than those without (2.9 vs. 2.4, p < 0.01, scale of 1 to 5), indicating good psychometric support for construct validity and interpretability. Positive correlations of the ACP Engagement Survey and the General Self-Efficacy survey indicated good criterion validity (p < 0.05). Conclusions This study provided good psychometric support for the validity and reliability of the Dutch 34-item ACP Engagement Survey. This instrument can be used to assess involvement in ACP in adults with and without chronic disease.

The Web-Based Advance Care Planning Program “Explore Your Preferences for Treatment and Care”: Development, Pilot Study, and Before-and-After Evaluation

“…We hypothesized that the program will influence attitudes toward initiating ACP and involvement in ACP. To assess the participants’ behavior change and involvement in ACP, we considered the ACP Engagement Survey to be a suitable instrument as it is about the entire behavior change process of ACP, considering that ACP is an ongoing process [ 22 - 24 ]. As the web-based ACP program is also aimed at informing users about ACP, it could be useful for people who are not yet familiar with ACP, including people who may not be ready for ACP.…”

“…Participants completed the validated Dutch ACP Engagement Survey (34 items) [ 22 - 24 ] before and 2 months after program completion. This survey focused on four ACP domains: (1) surrogate decision makers; (2) values and quality of life; (3) flexibility in surrogate decision-making; and (4) asking doctors questions [ 24 ].…”

“…This survey focused on four ACP domains: (1) surrogate decision makers; (2) values and quality of life; (3) flexibility in surrogate decision-making; and (4) asking doctors questions [ 24 ]. ACP behavior change is measured by four subscales, namely knowledge about ACP (2 questions), contemplation about ACP (3 questions), self-efficacy for ACP (12 questions), and readiness for ACP (17 questions) [ 22 - 24 ]. The response options of knowledge, contemplation, and self-efficacy have a 3-point scale in the Dutch survey version, coded as 1=1, 2=3, and 3=5 [ 22 ].…”

“…ACP behavior change is measured by four subscales, namely knowledge about ACP (2 questions), contemplation about ACP (3 questions), self-efficacy for ACP (12 questions), and readiness for ACP (17 questions) [ 22 - 24 ]. The response options of knowledge, contemplation, and self-efficacy have a 3-point scale in the Dutch survey version, coded as 1=1, 2=3, and 3=5 [ 22 ]. The readiness subscale has a 5-point scale, ranging from 1=I have never thought about it to 5=I have already done it; the fifth answer option can be used to analyze specific ACP behaviors [ 22 - 24 ].…”

Advance care planning engagement in patients with chronic, life-limiting illness: baseline findings from a cluster-randomised controlled trial in primary care

“…(12,14) Examples of other factors that may correlate with ACP actions include religious beliefs and religiosity, (8,14,(17)(18)(19) educational attainment, (8,13,14,17,20) marital status, (19,21) and physical functioning. (8,12,18,22) In comparison, studies which examine ACP as a behavior change process, instead of discrete actions as described above, are fewer. Behavior Change Theory and Social Cognitive Theory have been used to describe processes underlying ACP engagement, including self-efficacy (i.e., how confident the patient feels to complete the behavior) and readiness (i.e., the patient's stage of behavior change).…”