Measuring advance care planning behavior in Dutch adults: translation, cultural adaptation and validation of the Advance Care Planning Engagement Survey.
Ontology highlight
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.
SUBMITTER: van der Smissen D
PROVIDER: S-EPMC8467154 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:OBJECTIVES:To assess the feasibility, acceptability and clinical sensibility of a novel survey, the advance care planning (ACP) Engagement Survey, in various healthcare settings. SETTING:A target sample of 50 patients from each of primary care, hospital, cancer care and dialysis care settings. PARTICIPANTS:A convenience sample of patients without cognitive impairment who could speak and read English was recruited. Patients 50 and older were eligible in primary care; patients 80 and older or 55 and older with clinical markers of advanced chronic disease were recruited in hospital; patients aged 19 and older were recruited in cancer and renal dialysis centres. OUTCOMES:We assessed feasibility, acceptability and clinical sensibility of the ACP Engagement Survey using a 6-point scale. The ACP Engagement Survey measures ACP processes (knowledge, contemplation, self-efficacy and readiness) on 5-point Likert scales and actions (yes/no). RESULTS:196 patients (38-96?years old, 50.5% women) participated. Mean (±SD) time to administer was 48.8±19.6?min. Mean acceptability scores ranged from 3.2±1.3 in hospital to 4.7±0.9 in primary care, and mean relevance ranged from 3.5±1.0 in hospital to 4.9±0.9 in dialysis centres (p<0.001 for both). The mean process score was 3.1±0.6 and the mean action score was 11.2±5.6 (of a possible 25). CONCLUSIONS:The ACP Engagement Survey demonstrated feasibility and acceptability in outpatient settings but was less feasible and acceptable among hospitalised patients due to length. A shorter version may improve feasibility. Engagement in ACP was low to moderate.
| S-EPMC4932285 | biostudies-literature
Project description:BackgroundAdvance care planning (ACP) is influenced by several factors (e.g., patient's readiness to engage, clinician's skills, and the cultural environment). Availability of reliable and valid self-reported measures of the ACP domains is crucial, including cross-cultural equivalence.AimTo culturally adapt into Italian the 19-item Quality of Communication (QOC) and the 4-item ACP Engagement (4-item ACP-E) questionnaires.MethodsWe translated and culturally adapted the two questionnaires and produced a significant other (SO) version of the QOC (QOC-SO). Each questionnaire was field tested via cognitive interviews with users: nine patients (QOC, 4-item ACP-E) and three SOs (QOC-SO) enrolled at three palliative care services.ResultsWe made minor changes to 5/19 QOC items, to improve clarity and internal consistency; we changed the response option 'didn't do' into 'not applicable'. Finally, we slightly revised the QOC to adapt it to the paper/electronic format. QOC debriefing revealed that the section on end of life was emotionally challenging for both patients and SOs. We simplified the 4-item ACP-E layout, added a sentence in the introduction, and revised the wording of one item, to improve coherence with the Italian ACP legislation. ACP-E debriefing did not reveal any major issue.ConclusionsResults were satisfactory in terms of semantic, conceptual and normative equivalence of both questionnaires. Acceptability was satisfactory for the 4-item ACP-E, while findings of the QOC cognitive debriefing informed a major amendment of a pilot trial protocol on ACP in multiple sclerosis (ConCure-SM): use of the interviewer version only, in an adaptive form. Psychometric testing of both questionnaires on a large, independent sample will follow.
| S-EPMC10035811 | biostudies-literature
Project description:Background: Advanced cancer patients need an accurate understanding of their prognoses in order to engage in informed end-of-life care treatment decision-making. Latino cancer patients experience disparities around prognostic understanding, in part due to a lack of culturally competent communication around prognosis and advance care planning (ACP). Objective: The objective of the present study of Latino patients with advanced, terminally ill cancer is to examine their understanding of prognosis, and how cultural factors may influence this understanding and engagement in ACP. Methods: A mixed methods study was conducted, which consisted of surveys and semi-structured interviews. Descriptive statistics were used for sociodemographic information and self-reported prognostic understanding. Interviews around prognostic understanding and cultural influences on this understanding and engagement in ACP were recorded, transcribed, and then coded and analyzed using thematic content analysis. Findings: Latino patients with advanced cancer (n = 20) completed a self-reported survey and participated in a semi-structured interview. Results indicate that among terminally ill patients, 50% of the patients inaccurately believed they had early-stage cancer, 85% did not believe their cancer was terminal, and 70% believed their cancer was curable. Moreover, interviews yielded two main themes: varying levels of awareness of the incurability of their cancer and diverse end-of-life care decision-making and treatment preferences based on prognostic understanding. Within these themes, patients expressed denial or acceptance of their prognosis through communication with the oncologist, the importance of family, and incorporating their pre-existing beliefs. Conclusion: Findings indicate the importance of communication, family involvement, and incorporation of beliefs for promoting an accurate prognostic understanding among Latino patients. It is imperative to address disparities in Latino advanced cancer patients’ prognostic understanding so they can engage in informed treatment decision-making around end-of-life care.
| S-EPMC10472825 | biostudies-literature
Project description:BackgroundPrimary care clinics need sustainable, population-based approaches to engage patients in advance care planning (ACP). Patient portal-based ACP tools may provide an option for patient engagement.ObjectiveTo increase ACP outcomes by engaging older adults through portal-based ACP tools, including an electronic Medical Durable Power of Attorney (MDPOA) form.MethodsGeriatric clinic pilot of a multi-modal population-based outreach strategy for portal-based ACP tools. Outreach was to patients (n = 105) who were 65 years and older with an active portal account, no cognitive impairment, and no MDPOA on file. Patients received a motivational message via the portal and, if not read within 2 weeks, a mailed postcard about the portal-based ACP tools. Primary outcome was composite of any ACP action at 1-year including 1) new advance directive (AD) in the electronic health record, 2) use of portal-based ACP tools, or 3) documented ACP discussion with a provider.ResultsSixty-five older adults read the electronic message at 12 months. Seventeen (16%) engaged in at least 1 ACP action. Fourteen of 17 engaged by adding an AD to their record. More patients completed an AD on article or brought a previously completed AD to clinic, compared with choosing to complete an electronic MDPOA via the portal.ConclusionsBrief motivational messages about ACP via a patient portal is feasible and may increase ACP outcomes for older adults in primary care. Future studies should evaluate population-based portal outreach strategies in combination with team-based workflows to enhance patient engagement in ACP.
| S-EPMC7039311 | biostudies-literature
Project description:ObjectivesA key objective of advance care planning (ACP) is improving surrogates' knowledge of patients' treatment goals. Little is known about whether ACP outside of a trial accomplishes this. The objective was to examine patient and surrogate reports of ACP engagement and associations with surrogate knowledge of goals.DesignCohort study SETTING: Primary care in a Veterans Affairs Medical Center.Participants350 community-dwelling veterans age ≥55 years and the individual they would choose to make medical decisions on their behalf, interviewed separately.MeasurementsTreatment goals were assessed by veterans' ratings of 3 health states: severe physical disability, cognitive disability, and pain, as an acceptable or unacceptable result of treatment for severe illness. Surrogates had knowledge if they correctly predicted all 3 responses. Veterans and surrogates were asked about living will and health care proxy completion and communication about life-sustaining treatment and quality versus quantity of life (QOL).ResultsOver 40% of dyads agreed that the veteran had not completed a living will or health care proxy and that there was no QOL communication. For each activity, sizeable proportions (18-34%) disagreed about participation. In dyads who agreed QOL communication had occurred, 30% of surrogates had knowledge, compared to 21% in dyads who agreed communication had not occurred and 15% in dyads who disagreed (P = .01). This relationship persisted in multivariable analysis. Agreement about other ACP activities was not associated with knowledge.ConclusionDisagreement about ACP participation was common. Agreement about communication regarding QOL was modestly associated with surrogate knowledge of treatment goals. Eliciting surrogates' perspectives is critical to ACP. Even dyads who agree about participation may need additional support for successful engagement.
| S-EPMC5555783 | biostudies-literature
Project description:ObjectivesTo develop and test the acceptability of personalized intervention materials to promote advance care planning (ACP) based on the Transtheoretical Model (TTM), in which readiness to change is a critical organizing construct.DesignDevelopment study creating an expert system delivering TTM-personalized feedback reports and stage-matched brochures with more-general information on ACP and modifications based on participant reviews.SettingSenior centers.ParticipantsCommunity-living persons aged 65 and older (N = 77).MeasurementsParticipant ratings of length, attractiveness, and trustworthiness of and reactions to reports and brochures.ResultsThe expert system assessed participants' readiness to engage in each of four ACP behaviors: completion of a living will, naming a health care proxy, communication with loved ones about quality vs quantity of life, and communication with clinicians about quality vs quantity of life. The system also assessed pros and cons of engagement and values and beliefs that influence engagement. The system provided individualized feedback based on the assessment, with brochures providing additional general information. Initial participant review indicating unacceptable length led to revision of feedback reports from full-sentence paragraph format to bulleted format. After review, the majority of participants rated the materials as easy to read, trustworthy, providing new information, making them more comfortable reading about ACP, and increasing interest in participating in ACP.ConclusionOlder adults found an expert system individualized feedback report and accompanying brochure to promote ACP engagement to highly acceptable and engaging. Additional research is necessary to examine the effects of these materials on behavior change.
| S-EPMC4760894 | biostudies-literature
Project description:IntroductionThe International Consortium for Health Outcomes Measurement (ICHOM) developed a standard set of patient-centered outcome measures for use in stroke patients. In addition to the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health, it is comprised of 25 questions that are not part of a specific questionnaire. This study aimed to translate these 25 single questions into Dutch.MethodsTwo native Dutch-speaking translators independently translated the original ICHOM questions into Dutch. A consensus translation was made by these translators and a third person. This translation was subsequently translated back to English independently by two native English-speaking translators. Afterwards a pre-final version was made by consensus of a committee. After field-testing among 30 stroke patients, a final version was made.ResultsThe forward and backward translations led to eight cross-cultural adaptations. Based on the interviews with stroke patients, 12 questions were changed to enhance comprehensibility leading to a final Dutch translation of the 25 single questions.ConclusionsA Dutch translation of the 25 single questions of the ICHOM Standard Set for Stroke was developed. Now a complete ICHOM Standard Set for Stroke can be used in Dutch populations allowing comparison and improvement of stroke care.
| S-EPMC10495300 | biostudies-literature
Project description:An increased sensitivity to painful stimuli has been proposed to be related to the development of chronic pain. Therefore, assessment of individual pain sensitivity is useful in clinical practice. However, experimental pain testing may be uncomfortable for patients and requires specific equipment. The Pain Sensitivity Questionnaire (PSQ) has been developed to facilitate assessment of pain sensitivity. In this study, we aimed to translate and cross-culturally adapt the PSQ from its published German and English versions into the Dutch language and to assess validity of the PSQ in healthy volunteers. After translation and cross-cultural adaptation of the PSQ following international guidelines, we validated the PSQ in 394 healthy volunteers by comparing the PSQ-values with two different experimental pain tests: electrical pain tolerance (EPT) and pressure pain threshold (PPT). In addition, ratings of pain intensity during these tests were obtained on the numerical rating scale (NRS, 0-10). We found that the reliability of the PSQ based on internal consistency was good (Cronbach's alpha 0.90). PSQ-scores, adjusted for age and sex, were statistically significant and weakly inversely correlated to EPT (PSQ-moderate: rho = -0.24, p=0.007; PSQ-total: rho = -0.22, p=0.016). No statistically significant correlation between PSQ-scores and PPT was found. Concerning the pain scores, PSQ-scores were weakly to moderately correlated to EPT-NRS (PSQ-minor: rho = 0.21, p=0.021; PSQ-moderate: rho = 0.22, p=0.016; PSQ-total: rho = 0.23, p=0.009) as well as PPT-NRS (PSQ-minor: rho = 0.32, p < 0.001; PSQ-moderate: rho = 0.36, p < 0.001; PSQ-total: rho = 0.37, p < 0.001). Therefore, we concluded that the Dutch version of the PSQ is culturally appropriate for assessing self-reported pain sensitivity in healthy volunteers.
| S-EPMC7397447 | biostudies-literature
Project description:Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made. Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care. Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools.
| S-EPMC7505922 | biostudies-literature
Project description:BACKGROUND:Advance care planning (ACP) promotes conversations about future health care needs, enacted if a person is incapable of making decisions at end-of-life that may be communicated through written documentation such as advance care directives. To meet the needs of multicultural and multifaith populations in Australia, an advance care planning website, ACPTalk, was funded to support health professionals in conducting conversations within diverse religious and cultural populations. ACPTalk aimed to provide religion-specific advance care planning content and complement existing resources. OBJECTIVE:The purpose of this paper was to utilize the context, input, process, and product (CIPP) framework to conduct a formative and summative evaluation of ACPTalk. METHODS:The CIPP framework was used, which revolves around 4 aspects of evaluation: context, input, process, and product. Context: health professionals' solutions for the website were determined through thematic analysis of exploratory key stakeholder interviews. Included religions were determined through an environmental scan, Australian population statistics, and documentary analysis of project steering committee meeting minutes. Input: Project implementation and challenges were examined through documentary analysis of project protocols and meeting minutes. Process: To ensure religion-specific content was accurate and appropriate, a website prototype was built with content review and functionality testing by representatives from religious and cultural organizations and other interested health care organizations who completed a Web-based survey. Product: Website analytics were used to report utilization, and stakeholder perceptions were captured through interviews and a website survey. RESULTS:Context: A total of 16 key stakeholder health professional (7 general practitioners, 2 primary health nurses, and 7 palliative care nurses) interviews were analyzed. Website solutions included religious and cultural information, communication ideas, legal information, downloadable content, and Web-based accessibility. Christian and non-Christian faiths were to be included in the religion-specific content. Input: Difficulties gaining consensus on religion-specific content were overcome by further state and national religious organizations providing feedback. Process: A total of 37 content reviewers included representatives of religious and cultural organizations (n=29), health care (n=5), and community organizations (n=3). The majority strongly agree or agree that the content used appropriate language and tone (92%, 34/37), would support health professionals (89%, 33/37), and was accurate (83%, 24/29). Product: Resource usage within the first 9 months was 12,957 page views in 4260 sessions; majority were (83.45%, 3555/4260) from Australia. A total of 107 Australian-based users completed the website survey; most felt information was accurate (77.6%, 83/107), easy to understand (82.2%, 88/107), useful (86.0%, 92/107), and appropriate (86.0%, 92/107). A total of 20 nurses (general practice n=10, palliative care n=8, and both disciplines n=2) participated in stakeholder interviews. Qualitative findings indicated overall positivity in relation to accessibility, functionality, usefulness, design, and increased knowledge of advance care planning. Recommended improvements included shortened content, a comparable website for patients and families, and multilingual translations. CONCLUSIONS:The CIPP framework was effectively applied to evaluate the development and end product of an advance care planning website.Although overall findings were positive, further advance care planning website development should consider the recommendations derived from this study.
| S-EPMC5928329 | biostudies-literature