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Advance 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 adv...
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Citations
... Several instruments exist for assessing the levels of ACP readiness, such as the Advance Care Planning Engagement Survey (Sudore et al., 2013), the Advance Care Planning Questionnaire (Lai et al., 2016), and the Advance Care Planning Readiness Scale (Brown et al., 2017). However, these scales are developed in other countries. ...
Aim
To evaluate the psychometric properties of the Advance Care Planning Readiness Scale (ACPRS‐C) within the context of community‐dwelling older adults with chronic diseases residing in suburban counties in China.
Design
Descriptive, cross‐sectional survey.
Method s
The research method employed in this study is characterized as a methodological study. Self‐reported survey data were collected among community‐dwelling older adults with chronic diseases residing in suburban counties in China. Including the following psychometric characteristics, item analysis was performed using the decision value method and Pearson's correlation analysis. Content validity was assessed through expert panel evaluation. The internal consistency of the questionnaire was determined by calculating Cronbach's alpha coefficient and corrected item‐total correlation. Additionally, confirmatory factor analysis (CFA) was utilized to assess the construct validity of the ACPRS‐C.
Results
A total of 228 older adults participated in this psychometric study from August to October 2023. The item content validity index ranged from 0.80 to 1.00, while the scale content validity index was 0.945. The scale demonstrated excellent internal consistency (Cronbach's alpha = 0.931), and the correlation between items and total score was satisfactory. The structural validity was deemed robust (CFA model fit: chi‐square/df = 1.121, comparative fit index = 0.992).
Conclusion
The ACPRS‐C is a scale with strong psychometric properties to assess the ACP readiness within the context of community‐dwelling older adults with chronic diseases residing in suburban counties in China. Its reliability and validity hold considerable significance for both research and clinical practice.
... 24,25 Current research recognizes ACP as a complex set of behaviors, based on the behavior change model, similar to smoking cessation or exercise. [26][27][28] For ACP, this includes behaviors such as identifying one's goals for medical care, discussing goals with others over time, and if appropriate, to document preferences. 17,18,20 Given this new level of understanding, in 2018, an international Delphi panel of experts outlined a new, more complex framework for ACP outcomes organized into five domains: Process outcomes included patient knowledge and perceptions of ACP, self-efficacy, and readiness, and focused on moving patients along a behavior change pathway; Action outcomes included concrete tasks such as discussions and/or documentation; Quality of Care outcomes included goal-concordant care (GCC), meaning the patient received the medical care that was aligned with their values and preferences, and overall satisfaction with communication and decision-making; Health outcomes included impact on health (health status and mental health); and Health System outcomes included healthcare utilization or cost (Table 1). ...
Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACP’s evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of “clinically meaningful” ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients’ values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACP’s continued evolution to better serve patients and their care partners.
... The survey included demographic questions and investigatorauthored survey questions about the Workbook. We also included the nine-item version of Sudore's Advance Care Planning Engagement Survey, which assesses self-efficacy and readiness to name a surrogate decision maker and to discuss what kind of care they would want if they were seriously ill or at the end of life [12][13][14][15]. Finally, we assessed the Net Promoter Score, a popularized measure of customer satisfaction and brand loyalty that asks users to rate how likely they are to recommend a product (in this case the Workbook) to a friend or relative on a scale from 0 (not at all likely) to 10 (extremely likely). ...
Objectives
We evaluated the What Matters to Me Workbook, a patient-facing version of the Serious Illness Conversation Guide co-created by Ariadne Labs and The Conversation Project.
Methods
We purposively recruited diverse seriously ill patients and caregivers in the US. Participants completed the Workbook, a survey, and a semi-structured in-depth interview about their experience. Qualitative analysis of interviews and notes was employed to extract themes. Simple descriptive statistics were employed to analyze eight investigator authored questions.
Results
Twenty-nine study participants completed twenty-one interviews and twenty-five surveys. Ratings for safety (3.87/4, SD = 0.43) and acceptability (3.59/4, SD = 0.956) were higher than ratings for ease of use (3.30/4, SD = 0.97) and usefulness (3.24/4, SD = 0.80). Qualitative analysis identified that while the workbook was safe, acceptable, easy to use, and useful, it is more important who is recommending it and how they are explaining it.
Conclusion
If presented in the right way by a trustworthy person, the What Matters to Me Workbook can be an easy to use, useful, and safe resource for patients with serious illness and their caregivers.
Innovation
The Workbook focuses on serious illness rather than end-of-life and meshes with a clinician-facing conversation guide and a health-system level intervention.
... In these models, readiness to engage in ACP is an important precursor to patients taking action, such as by discussing care preferences. (21,22) Educating patients about ACP and encouraging them to reflect on values and care wishes may promote engagement, helping them prepare for ACP discussions. (23) We have previously also found that patients have greater ACP engagement overall, and greater ACP self-efficacy, when they rate highly the extent to which their GP listens to their worries about future health, emphasizing the importance of communication. ...
... Development of the intervention is reported elsewhere. (21,22) Patients received the ACP-GP intervention for 6 months. Table 2 contains an overview of the intervention. ...
... Additionally, we used validated instruments aiming to investigate behavior change processes underlying ACP actions. (22) This study also had limitations. As the trial occurred during the COVID-19 pandemic, GPs reported extraordinary time and workload pressures, and difficulty identifying eligible patients. ...
Background
Advance care planning (ACP) is an iterative communication process about patients’ preferences for future care. In general practice, there are barriers to ACP at patient, GP, and healthcare-system levels. A complex intervention may be necessary to reduce barriers.
Aim
To evaluate the effects of a complex ACP intervention for patients with chronic, life-limiting illness in general practice (ACP-GP).
Design and setting
A cluster-randomised controlled trial was undertaken in Belgian general practice.
Method
ACP-GP included a patient workbook, GP training, ACP conversations, and a documentation template. The control group received usual care. Outcomes were the 15-item ACP Engagement Survey for patients and the ACP Self-Efficacy scale for GPs. Linear mixed models evaluated differences at 3 months (T1, effectiveness evaluation) and 6 months (T2) post-baseline. Analysis was intention-to-treat.
Results
In total, 35 GPs and 95 patients were randomised. Patient ACP engagement did not differ between the intervention and control group at T1 (baseline-adjusted mean difference = 0.34; 95% confidence interval [CI] = −0.02 to 0.69; P = 0.062) or T2 (baseline-adjusted mean difference = 0.20; 95% CI = −0.17 to 0.57; P = 0.28). For GP ACP self-efficacy, there were no significant differences between groups at T1 (baseline-adjusted mean difference = 0.16; 95% CI = −0.04 to 0.35; P = 0.11) or at T2 (baseline-adjusted mean difference = 0.11; 95% CI = −0.09 to 0.31; P = 0.27).
Conclusion
ACP-GP did not improve patient engagement and GP self-efficacy more than usual care. Both groups showed patterns of increase from baseline. Trial procedures and the COVID-19 pandemic may have increased awareness about ACP.
... We used the 9-item ACP engagement survey instrument, including measures of self-efficacy and readiness as identified in behavior change theory [32,33]. Self-efficacy and readiness items have Likert responses of "not at all, a little, somewhat, fairly, extremely" and have good reliability and discriminant validity [32,33]. ...
... We used the 9-item ACP engagement survey instrument, including measures of self-efficacy and readiness as identified in behavior change theory [32,33]. Self-efficacy and readiness items have Likert responses of "not at all, a little, somewhat, fairly, extremely" and have good reliability and discriminant validity [32,33]. ...
Background
American Indian and Alaska Native peoples experience poor end-of-life care, including more hospitalizations and lower use of hospice and do-not-resuscitate orders. Although advance care planning (ACP) can improve end-of-life care, ACP rates are disproportionately low in American Indians and Alaska Natives.
Objective
We culturally tailored and delivered an existing evidence-based ACP program for an American Indian tribal community. Here, we present the protocol for assessing the intervention’s feasibility and efficacy.
Methods
We measured feasibility via participant recruitment, participants’ evaluation (acceptability, appropriateness, comprehension, and satisfaction), and intervention fidelity. Recruitment was measured with participant screening, eligibility, enrollment, and retention. Participant’s evaluation of the intervention was measured with surveys. Fidelity was measured with direct observation and the Make Your Wishes About You (MY WAY) Fidelity Checklist Tool. To assess the intervention’s efficacy, we used a quasi-experimental waitlist control design with 2 cohorts who were surveyed each on three separate occasions. The intervention’s efficacy was assessed by the following: ACP barriers and facilitators as well as ACP self-efficacy, readiness, and completion.
Results
A total of 166 participants were screened for eligibility; 11 were deemed ineligible, and 155 participants were enrolled in the study. Of those enrolled, 113 completed the intervention and will be included in subsequent analyses. We finalized data collection in January 2023, and analyses are underway. Study enrollment was successful, and we expect that participants will report high levels of acceptability, appropriateness, comprehension, and satisfaction with the intervention. We expect that the intervention was implemented with fidelity and will demonstrate decreases in ACP barriers and increases in ACP facilitators, self-efficacy, readiness, and completion.
Conclusions
Enrolling over twice as many participants as we had hoped suggests that members of this tribal community are willing to engage in end-of-life ACP. We were able to implement a waitlist study design to show that a culturally tailored ACP program for a tribal community is feasible.
Trial Registration
ClinicalTrials.gov NCT05304117; https://clinicaltrials.gov/study/NCT05304117
International Registered Report Identifier (IRRID)
DERR1-10.2196/50654
... A preliminary version of PLAN was developed based on the following: (1) a prior intervention designed to improve cancer patients' communication regarding pain management [38][39][40]; (2) a prior model to improve ACP behavior among older adults [41]; ...
Background:
The goal of this study was to develop and optimize an intervention designed to address barriers to engagement in advance care planning (ACP) among Latino patients with advanced cancer. The resulting intervention, titled Planning Your Advance Care Needs (PLAN), is grounded in theoretical models of communication competence and sociocultural theory.
Materials and methods:
An initial version of the PLAN manual was developed based on a prior intervention, Ca-HELP, that was designed to improve communication around pain among cancer patients. PLAN uses this framework to coach patients on how to plan for and communicate their end-of-life care needs through ACP. In the present study, feedback was obtained from key stakeholders (n = 11 patients, n = 11 caregivers, n = 10 experts) on this preliminary version of the PLAN manual. Participants provided ratings of acceptability and feedback around the intervention content, format, design, modality, and delivery through quantitative survey questions and semi-structured qualitative interviews.
Results:
Results indicated that the PLAN manual was perceived to be helpful and easy to understand. All stakeholder groups liked the inclusion of explicit communication scripts and guidance for having conversations about ACP with loved ones and doctors. Specific feedback was given to modify PLAN to ensure it was optimized and tailored for Latino patients. Some patients noted reviewing the manual motivated engagement in ACP.
Conclusions:
Feedback from stakeholders resulted in an optimized, user-centered version of PLAN tailored to Latino patients. Future research will examine the acceptability, feasibility, and potential efficacy of this intervention to improve engagement in ACP.
... An AD includes instruments such as living wills or durable power of attorney for health care. However, there is a growing awareness that ADs are limited because they do not capture the full range and scope of the multiple behaviors that make up the advance care planning process [13]. ACP has been redefined as an ongoing process consisting of several discrete behaviors, including contemplating, preparing, discussing, and readiness to complete the documents instead of a one-time advance directive document [14,15]. ...
Background:
Studies indicated that patients with advance directives (ADs) have a generally better quality of life near death. Yet, the concept of ADs is relatively new in East Asian countries. This study examined the associations between health literacy, pro-individualism in end-of-life (EOL) decisions (i.e., EOL pro-individualism), and master-persistence personality traits with the willingness to complete ADs.
Methods:
The data is from a representative data of 1478 respondents from the 2022 Taiwan Social Change Survey. Generalized structural equation modeling (GSEM) was used to conduct path analysis.
Results:
Nearly half of the respondents (48.7%) were willing to complete ADs. Health literacy has direct and indirect effects through EOL pro-individualism values on the willingness to complete ADs. Noncognitive factors such as mastery-persistence personality traits and EOL pro-individualism values enhanced the willingness to complete ADs.
Conclusion:
A personalized communication strategy, mindful of personality dimensions and cultural values, can address individual fears and concerns, promoting the benefits of advance care planning (ACP). These influences can provide a roadmap for healthcare providers to customize their approach to ACP discussions, improving patient engagement in AD completion.
... We developed the legal planning engagement survey based on the Advance Care Planning Engagement Survey (Sudore et al. 2014). The Advance Care Planning Engagement Survey uses the social cognitive theory (Bandura 1977) and the Stages of Change Model (Prochaska and Velicer 1997). ...
Background:
This study aimed to measure the level of involvement of Canadians in preparing for incapacity and death and to explore facilitators and barriers.
Method:
The authors used an online survey based on the social cognitive theory and the Stages of Change model.
Result:
One-hundred and forty-eight participants took part. The main facilitators were avoiding burdening others and reducing conflicts. Some respondents thought legal planning did not apply to young and healthy people. Some did not trust lawyers.
Conclusion:
The authors suggest that more people would trust lawyers if they knew the limits of legal documents and if they worked with medical experts.
... Caregiver responses were modified to reflect surrogate decision-makers' perception of the patient's preferences. [46][47][48] Knowledge, Attitudes, and Beliefs About MPOA: Advance Care Planning Engagement Survey This validated tool evaluates individuals' stage of readiness for ACP behaviors. 48 We selected the 15-item version, with readiness and self-efficacy subscales. ...
... [46][47][48] Knowledge, Attitudes, and Beliefs About MPOA: Advance Care Planning Engagement Survey This validated tool evaluates individuals' stage of readiness for ACP behaviors. 48 We selected the 15-item version, with readiness and self-efficacy subscales. Subscale scores range from 1 to 5, with the total score composite of subscale scores. ...
... Our findings reinforce those of others that ACP is a process over time. 1,11,48,53 Potential next steps might include a focus on patients with higher ACP patient engagement scores. ...
Background:
Establishing care preferences and selecting a prepared medical decision-maker (MDM) are basic components of advance care planning (ACP) and integral to treatment planning. Systematic ACP in the cancer setting is uncommon. We evaluated a systematic social work (SW)-driven process for patient selection of a prepared MDM.
Methods:
We used a pre/post design, centered on SW counseling incorporated into standard-of-care practice. New patients with gynecologic malignancies were eligible if they had an available family caregiver or an established Medical Power of Attorney (MPOA). Questionnaires were completed at baseline and 3 months to ascertain MPOA document (MPOAD) completion status (primary objective) and evaluate factors associated with MPOAD completion (secondary objectives).
Results:
Three hundred and sixty patient/caregiver dyads consented to participate. One hundred and sixteen (32%) had MPOADs at baseline. Twenty (8%) of the remaining 244 dyads completed MPOADs by 3 months. Two hundred and thirty-six patients completed the values and goals survey at both baseline and follow-up: at follow-up, care preferences were stable in 127 patients (54%), changed toward more aggressive care in 60 (25%), and toward the focus on the quality of life in 49 (21%). Correlation between the patient's values and goals and their caregiver's/MPOA's perception was very weak at baseline, improving to moderate at follow-up. Patients with MPOADs by study completion had statistically significant higher ACP Engagement scores than those without.
Conclusion:
A systematic SW-driven intervention did not engage new patients with gynecologic cancers to select and prepare MDMs. Change in care preferences was common, with caregivers' knowledge of patients' treatment preferences moderate at best.
... It consisted of six questions that were more on multiple behaviors towards advance care planning and similar to the ones we adapted. However, they were measured on a 5-point Likert scale (not at all, a little, somewhat, moderately, and extremely) and showed a mean of 3.5 (SD = 0.7) with excellent reliability of (α = 0.84) [12]. The main nding was that when the participants were asked which word they were more familiar with when discussing end-of-life care decisions, advance directives, or living wills, they reported "living wills," which was similar to the responses (66%) of the study done in the managed care organization of Minnesota [5]. ...
Background: Advance directives are legal documents written or drawn when the person has total mental capacity, noting the requirements of health care when/if he loses the ability to make decisions. The concept has not been explored in Pakistan; hence a valid instrument is not available that addresses the needs of an LMIC. We aimed to develop and validate a tool to assess knowledge, Attitude, and perceptions about advance directives of the adult population availing services at tertiary care hospitals in Karachi, Pakistan.
Methodology: We carried out a validation study in three tertiary care hospitals in Karachi. The study was initiated by adapting from an American tool, modified following the Pakistani context. An estimated sample size of 389 using a purposive sampling technique was calculated. We checked the tool's relevancy using content validity. STATA software 16 was used for consistency, reliability, and factorial analysis.
Results: All the components of the survey performed well with overall good reliability (α = 0.75), and for individuals, main features, including family support decisions (α = 0.64), sociocultural and religious (α = 0.72), physical health awareness experience (α = 0.93), knowledge (α = 0.99), attitude (α = 0.75), and perceptions (α = 0.64).
Conclusion: This was the first validation study done in low-and-middle-income countries to develop a reliable and validated tool with the efforts made to make it contextual and comprehensive for both English and Urdu versions.
