Engaging Diverse Older Adults With Cognitive Impairment and Caregivers in Advance Care Planning: A Pilot Study of the Interactive PREPARE Website.
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ABSTRACT: Introduction
Engaging patients with cognitive impairment in advance care planning (ACP), including completing advance directives and naming health care proxies, before they lose decision-making capacity is important.Methods
We determined the feasibility of the PREPAREforYourCare.org ACP program among 20 diverse older adults with mild-to-moderate cognitive impairment and their caregivers in a 1-week, pre-post pilot. We examined ease-of-use, satisfaction, and feasibility using validated scales, and change in ACP Engagement scores, including knowledge, contemplation, self-efficacy, and readiness subscales (5-point scales), from baseline to 1-week.Results
Participants were on average 70 years old (SD=9.0), 45% Spanish-speaking, 60% had limited health literacy, and 15% felt comfortable using the internet. Patients and caregivers rated PREPARE a mean of 8.6 (SD=1.6) and 9.4 (SD=1.1) on the 10-point ease-of-use scale, 4.7 (SD=0.4) and 4.7 (SD=0.3) on the 5-point satisfaction scale, and 4.9 (SD=0.4) and 4.8 (SD=0.6) on the 5-point feasibility scale, respectively. ACP engagement scores increased for 16 of 20 (80%) patients (P=0.03) and 16 of 20 (80%) caregivers (P=0.18). Caregivers experienced increased knowledge (3.8 to 4.7, P=0.002) and self-efficacy (3.6 to 4.5, P=0.034) for ACP.Discussion
The PREPARE website was feasible and may facilitate ACP engagement among diverse older adults with cognitive impairment and their caregivers.
SUBMITTER: Kotwal AA
PROVIDER: S-EPMC8604734 | biostudies-literature | 2021 Oct-Dec 01
REPOSITORIES: biostudies-literature
Publications
Engaging Diverse Older Adults With Cognitive Impairment and Caregivers in Advance Care Planning: A Pilot Study of the Interactive PREPARE Website.
Kotwal Ashwin A AA Barnes Deborah E DE Volow Aiesha M AM Li Brookelle H BH Boscardin W John WJ Sudore Rebecca L RL
Alzheimer disease and associated disorders 20211001 4
<h4>Introduction</h4>Engaging patients with cognitive impairment in advance care planning (ACP), including completing advance directives and naming health care proxies, before they lose decision-making capacity is important.<h4>Methods</h4>We determined the feasibility of the PREPAREforYourCare.org ACP program among 20 diverse older adults with mild-to-moderate cognitive impairment and their caregivers in a 1-week, pre-post pilot. We examined ease-of-use, satisfaction, and feasibility using vali ...[more]
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Project description:ImportanceAdvance care planning improves the receipt of medical care aligned with patients' values; however, it remains suboptimal among diverse patient populations. To mitigate literacy, cultural, and language barriers to advance care planning, easy-to-read advance directives and a patient-directed, online advance care planning program called PREPARE For Your Care (PREPARE) were created in English and Spanish.ObjectiveTo compare the efficacy of PREPARE plus an easy-to-read advance directive with an advance directive alone to increase advance care planning documentation and patient-reported engagement.Design, setting, and participantsA comparative efficacy randomized clinical trial was conducted from February 1, 2014, to November 30, 2017, at 4 safety-net, primary-care clinics in San Francisco among 986 English-speaking or Spanish-speaking primary care patients 55 years or older with 2 or more chronic or serious illnesses.InterventionsParticipants were randomized to PREPARE plus an easy-to-read advance directive (PREPARE arm) or the advance directive alone. There were no clinician-level or system-level interventions. Staff were blinded for all follow-up measurements.Main outcomes and measuresThe primary outcome was documentation of new advance care planning (ie, legal forms and/or documented discussions) at 15 months. Patient-reported outcomes included advance care planning engagement at baseline, 1 week, 3 months, 6 months, and 12 months using validated surveys. Intention-to-treat analyses were performed using mixed-effects logistic and linear regression, controlling for time, health literacy, and baseline advance care planning, clustering by physician, and stratifying by language.ResultsAmong the 986 participants (603 women and 383 men), the mean (SD) age was 63.3 (6.4) years, 387 of 975 (39.7%) had limited health literacy, and 445 (45.1%) were Spanish speaking. No participant characteristic differed between the 2 groups, and retention was 85.9% (832 of 969) among survivors. Compared with the advance directive alone, PREPARE resulted in a higher rate of advance care planning documentation (unadjusted, 43.0% [207 of 481] vs 33.1% [167 of 505]; P < .001; adjusted, 43.0% vs 32.0%; P < .001) and higher self-reported increased advance care planning engagement scores (98.1% vs 89.5%; P < .001). Results remained significant among English speakers and Spanish speakers.Conclusions and relevanceThe patient-facing PREPARE program and an easy-to-read advance directive, without clinician-level or system-level interventions, increased documentation of advance care planning and patient-reported engagement, with statistically higher gains for PREPARE vs advance directive alone. These tools may mitigate literacy and language barriers to advance care planning, allow patients to begin planning on their own, and could substantially improve the process for diverse English-speaking and Spanish-speaking populations.Trial registrationClinicalTrials.gov identifiers: NCT01990235 and NCT02072941.
| S-EPMC6342283 | biostudies-literature
Project description:ImportanceDocumentation rates of patients' medical wishes are often low. It is unknown whether easy-to-use, patient-facing advance care planning (ACP) interventions can overcome barriers to planning in busy primary care settings.ObjectiveTo compare the efficacy of an interactive, patient-centered ACP website (PREPARE) with an easy-to-read advance directive (AD) to increase planning documentation.Design, setting, and participantsThis was a comparative effectiveness randomized clinical trial from April 2013 to July 2016 conducted at multiple primary care clinics at the San Francisco VA Medical Center. Inclusion criteria were age of a least 60 years; at least 2 chronic and/or serious conditions; and 2 or more primary care visits; and 2 or more additional clinic, hospital, or emergency room visits in the last year.InterventionsParticipants were randomized to review PREPARE plus an easy-to-read AD or the AD alone. There were no clinician and/or system-level interventions or education. Research staff were blinded for all follow-up measurements.Main outcomes and measuresThe primary outcome was new ACP documentation (ie, legal forms and/or discussions) at 9 months. Secondary outcomes included patient-reported ACP engagement at 1 week, 3 months, and 6 months using validated surveys of behavior change process measures (ie, 5-point knowledge, self-efficacy, readiness scales) and action measures (eg, surrogate designation, using a 0-25 scale). We used intention-to-treat, mixed-effects logistic and linear regression, controlling for time, health literacy, race/ethnicity, baseline ACP, and clustering by physician.ResultsThe mean (SD) age of 414 participants was 71 (8) years, 38 (9%) were women, 83 (20%) had limited literacy, and 179 (43%) were nonwhite. No participant characteristic differed significantly among study arms at baseline. Retention at 6 months was 90%. Advance care planning documentation 6 months after enrollment was higher in the PREPARE arm vs the AD-alone arm (adjusted 35% vs 25%; odds ratio, 1.61 [95% CI, 1.03-2.51]; P = .04). PREPARE also resulted in higher self-reported ACP engagement at each follow-up, including higher process and action scores; P <.001 at each follow-up).Conclusions and relevanceEasy-to-use, patient-facing ACP tools, without clinician- and/or system-level interventions, can increase planning documentation 25% to 35%. Combining the PREPARE website with an easy-to-read AD resulted in higher planning documentation than the AD alone, suggesting that PREPARE may increase planning documentation with minimal health care system resources.Trial registrationclinicaltrials.gov Identifier: NCT01550731.
| S-EPMC5710440 | biostudies-literature
Project description:ObjectivesMost prior advance care planning (ACP) interventions lack integration of the social context of patients' ACP process, which patients indicate is critically important. The current study developed the Planning Advance Care Together (PACT) website to foster inclusion of loved ones in the ACP process.MethodsTo provide feedback about the PACT website, patients with advanced cancer (N = 11), their caregivers (N = 11), and experts (N = 10) participated in semi-structured interviews. Patients and caregivers also completed standardized ratings of acceptability and usability.ResultsOverall, patient (n = 11) and caregiver (n = 11) ratings of acceptability and usability of the website exceeded benchmark cut-offs (≥24 on the Acceptability E-Scale and ≥ 68 on the System Usability Scale). Patients, caregivers, and experts liked the topic of ACP but felt that it could be emotionally challenging. They recommended focusing more on planning and less on end of life. They appreciated being able to include loved ones and recommended adding resources for caregivers.ConclusionsStudy findings support the preliminary usability and acceptability of the PACT website. Findings will be used to inform a modified prototype of the PACT website that is interactive and ready for field testing with patients with advanced cancer and their loved ones.InnovationWe utilized a novel application of the shared mind framework to support patients with advanced cancer in engaging their loved ones in the ACP process.
| S-EPMC10733677 | biostudies-literature
Project description:Background and objectivesAdvance care planning (ACP) conversations are important to provide goal-concordant care (i.e., the care that matches the patient's previously stated goals) near end of life. While 31% of older adults presenting to the emergency department (ED) have dementia, only 39% have previously had ACP conversations. We refined and piloted an ED-based, motivational interview designed to stimulate ACP conversations (ED GOAL) for patients living with cognitive impairment and their caregivers.Research design and methodsWe systematically refined ED GOAL and then conducted an acceptability study in an urban, academic medical center. We prospectively enrolled adults aged 50+ with cognitive impairment and their caregivers. Trained clinicians conducted the intervention. We measured acceptability after the intervention and participants' ACP engagement at baseline and 1-month follow-up.ResultsSpecific statements to address both the patient and caregiver were added to the ED GOAL script. Of 60 eligible patient/caregiver dyads approached, 26 participated, and 20 (77%) completed follow-up assessments. Patient mean age was 79 years (SD 8.5); 65% were female, 92.3% were White, 96.2% were non-Hispanic, and 69% had moderate dementia. Most patients/caregivers reported feeling completely heard and understood by the study clinician about their future medical care preferences (58%, 15/26). They also reported that the study clinician was very respectful (96%, 25/26) when eliciting those preferences.Discussion and implicationsPatients living with cognitive impairment and their caregivers found our refined ED GOAL acceptable and respectful. Future studies need to examine the effect of ED GOAL on ACP engagement among these dyads in the ED.
| S-EPMC10733123 | 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
Project description:Background/objectivesA patient-directed, online program (PREPARE for Your Care [PREPARE]; prepareforyourcare.org) has been shown to increase advance care planning (ACP) documentation. However, the mechanisms underlying PREPARE are unknown. Our objectives were to compare the efficacy of PREPARE plus an easy-to-read advance directive (AD) vs an AD alone to increase active patient participation in ACP discussions during clinic visits and to examine effects of active patient participation on ACP documentation.DesignAudio recordings of postintervention primary care visits from two randomized trials (2013-2016).SettingSeven primary care clinics at a veterans affair and safety-net hospital in San Francisco, CA.ParticipantsEnglish- and Spanish-speaking adults, aged 55 years and older, with two or more chronic/serious conditions.InterventionPREPARE plus an easy-to-read AD or an AD alone.MeasurementsThe primary outcome was the number of active patient participation utterances about ACP (eg, asking questions, stating preferences) measured by the validated Active Patient Participation Coding Scheme. We examined differences in utterances by study arm using mixed effects negative binomial models and utterances as a mediator of PREPARE's effect on documentation using adjusted logistic regression. Models were adjusted for health literacy, prior care planning, and clinician.ResultsAmong 393 participants, the mean (SD) age was 66 (8.1) years, 120 (30.5%) had limited health literacy, and 99 (25.2%) were Spanish speaking. PREPARE plus the AD resulted in 41% more active patient participation in ACP discussions compared with the AD alone (mean [SD] = 10.1 [16.8] vs 6.6 [13.4] utterances; incidence rate ratio = 1.41; 95% confidence interval = 1.00-1.98). For every additional utterance, participants had 15% higher odds of ACP documentation, and active patient participation accounted for 16% of PREPARE's effect on documentation.ConclusionsThe PREPARE program and easy-to-read AD empowered patients to actively participate in ACP discussions during clinical visits more than the AD alone. Increased activation was associated with increased ACP documentation. Therefore, PREPARE may mitigate barriers to ACP among English- and Spanish-speaking older adults.Trial registrationClinicalTrials.gov identifiers: "Improving Advance Care Planning by Preparing Diverse Seniors for Decision Making (PREPARE)" NCT01990235 and "Preparing Spanish-Speaking Older Adults for Advance Care Planning and Medical Decision Making (PREPARE)" NCT02072941. J Am Geriatr Soc 68:1210-1217, 2020.
| S-EPMC7787080 | biostudies-literature
Project description:BackgroundWeb-based tools have gained popularity to inform and empower individuals in advance care planning. We have developed an interactive website tailored to the unique needs of people with dementia and their families to support advance care planning. This website aims to break away from the rigid pathways shown in other tools that support advance care planning, in which advance care planning is shown as a linear process from information to reflection, communication, and documentation.ObjectiveThis study aimed to assess the website's usage by people with dementia and their family caregivers, identify distinct user engagement patterns, and visualize how users navigated the website.MethodsWe analyzed the website's log data obtained from an 8-week evaluation study of the site. Interactions with the website were collected in log data files and included visited web pages or clicked-on hyperlinks. Distinct user engagement patterns were identified using K-means clustering process mining, a technique that extracts insights from log data to model and visualize workflows, was applied to visualize user pathways through the website.ResultsA total of 52 participants, 21 individuals with dementia and their family caregivers as dyads and 10 family caregivers were included in the study. Throughout the 8-week study, users spent an average of 35.3 (SD 82.9) minutes over 5.5 (SD 3.4) unique days on the website. Family caregivers mostly used the website (alone or with a person with dementia) throughout the 8-week study. Only 3 people with dementia used it on their own. In total, 3 distinct engagement patterns emerged: low, moderate, and high. Low-engagement participants spent less time on the website during the 8 weeks, following a linear path from information to communication to documentation. Moderate- and high-engagement users showed more dynamic patterns, frequently navigating between information pages and communication tools to facilitate exploration of aspects related to advance care planning.ConclusionsThe diverse engagement patterns underscore the need for personalized support in advance care planning and challenge the conventional linear advance care planning representations found in other web-based tools.
| S-EPMC11835784 | biostudies-literature
Project description:ObjectivesTo examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.DesignCross-sectional survey.Setting13 geographically dispersed Alzheimer's Disease Centers across the United States.Participants431 racially diverse caregivers of persons with dementia.MeasurementsSurvey on "Care Planning for Individuals with Dementia."ResultsThe respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.ConclusionsEducational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
| S-EPMC6962575 | biostudies-literature
Project description:BackgroundThere is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature.ObjectiveThis study aims to conduct a systematic review of web-based ACP support tools to describe the characteristics, readability, and quality of content and investigate whether and how they are evaluated.MethodsWe systematically searched the web-based gray literature databases OpenGrey, ClinicalTrials.gov, ProQuest, British Library, Grey Literature in the Netherlands, and Health Services Research Projects in Progress, as well as Google and app stores, and consulted experts using the following eligibility criteria: web-based, designed for the general population, accessible to everyone, interactive (encouraging reflection, communication, and processing of information), and in English or Dutch. The quality of content was evaluated using the Quality Evaluation Scoring Tool (score 0-28-a higher score indicates better quality). To synthesize the characteristics of the ACP tools, readability and quality of content, and whether and how they were evaluated, we used 4 data extraction tables.ResultsA total of 30 tools met the eligibility criteria, including 15 (50%) websites, 10 (33%) web-based portals, 3 (10%) apps, and 2 (7%) with a combination of formats. Of the 30 tools, 24 (80%) mentioned a clear aim, including 7 (23%) that supported reflection or communication, 8 (27%) that supported people in making decisions, 7 (23%) that provided support to document decisions, and 2 (7%) that aimed to achieve all these aims. Of the 30 tools, 7 (23%) provided information on the development, all of which were developed in collaboration with health care professionals, and 3 (10%) with end users. Quality scores ranged between 11 and 28, with most of the lower-scoring tools not referring to information sources.ConclusionsA variety of ACP support tools are available on the web, varying in the quality of content. In the future, users should be involved in the development process of ACP support tools, and the content should be substantiated by scientific evidence.Trial registrationPROSPERO CRD42020184112; https://tinyurl.com/mruf8b43.
| S-EPMC9069298 | biostudies-literature
Project description:ContextDespite the association of advance care planning (ACP) with improved patient and caregiver outcomes, Chinese American elders have low rates of ACP.ObjectivesAssess ACP facilitators/barriers in the San Francisco (SF) Chinese community and codesign, implement, and test community-based ACP-promoting pilot events.MethodsA Chinese Community Committee (N = 19 community-based organization leaders, health system representatives, community members) conducted focus groups in Cantonese and English with Chinese older adults (age ≥55), caregivers, and community leaders. The Committee designed and implemented pilot events in-person and online. We analyzed focus group data using thematic analysis; assessed pre-to-post-event readiness to engage in ACP (validated survey; 14 scale, 4 = most ready); and assessed event acceptability.ResultsA total of 34 people participated in six focus groups. Themes described Chinese community-specific importance of ACP (e.g., reduces family burden), barriers (e.g., younger generations lack tools to discuss ACP with elders and vice versa), and facilitators (e.g., intergenerational events, culturally/linguistically appropriate materials). Based on focus groups findings, the Committee developed a novel ACP tool and designed intergenerational events. A total of 195 participants attended 10 events; 95% were Chinese, 90% spoke Chinese languages, 80% were women. ACP readiness increased significantly (1.66 [SD 0.84] vs. 2.03 [SD 0.85]; P < 0.001); 94% of participants were comfortable attending and 96% would recommend events.ConclusionCommunity-developed intergenerational events that highlight the value of ACP and address barriers are acceptable and increase ACP engagement in the Chinese community.
| S-EPMC10593504 | biostudies-literature