Dataset Information

FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity.

ABSTRACT:

Context

No prospective studies address disease-specific advance care planning (ACP) for adults living with HIV/AIDS.

Objective

To examine the efficacy of FAmily-CEntered (FACE) ACP in increasing ACP and advance directive documentation in the medical record.

Methods

Longitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from five hospital-based outpatient HIV clinics in Washington, DC. Adults living with HIV and their surrogate decision-makers (N = 233 dyads) were randomized to either an intensive facilitated two-session FACE ACP (Next Steps: Respecting Choices goals of care conversation and Five Wishes advance directive) or healthy living control (conversations about developmental/relationship history and nutrition).

Results

Patients (n = 223) mean age: 51 years, 56% male, 86% African-American. One hundred ninety-nine dyads participated in the intervention. At baseline, only 13% of patients had an advance directive. Three months after intervention, this increased to 59% for the FACE ACP group versus 17% in the control group (P < 0.0001). Controlling for race, the odds of having an advance directive in the medical record in the FACE ACP group was approximately seven times greater than controls (adjusted odds ratio = 6.58, 95% CI: 3.21-13.51, P < 0.0001). Among African-Americans randomized to FACE, 58% had completed/documented advance directives versus 20% of controls (P < 0.0001).

Conclusions

The FACE ACP intervention significantly improved ACP completion and advance directive documentation in the medical record among both African-American and non-African-American adults living with HIV in Washington, DC, providing health equity in ACP, which can inform best practices.

SUBMITTER: Lyon ME

PROVIDER: S-EPMC6382515 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity.

Lyon Maureen E ME Squires Leah L D'Angelo Lawrence J LJ Benator Debra D Scott Rachel K RK Greenberg Isabella H IH Tanjutco Patricia P Turner Melissa M MM Weixel Tara E TE Cheng Yao I YI Wang Jichuan J

Journal of pain and symptom management 20181123 3

<h4>Context</h4>No prospective studies address disease-specific advance care planning (ACP) for adults living with HIV/AIDS.<h4>Objective</h4>To examine the efficacy of FAmily-CEntered (FACE) ACP in increasing ACP and advance directive documentation in the medical record.<h4>Methods</h4>Longitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from five hospital-based outpatient HIV clinics in Washington, DC. Adults living with HIV and their surrogate decision-make ...[more]

PMID: 30472318

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Project description:Advance planning for end-of-life care has gained acceptance, but actual end-of-life care is often incongruent with patients' previously stated goals. We assessed the flow of advance care planning information from patients to medical records in a community sample of older adults to better understand why advance care planning is not more successful.Our study used structured interview and medical record data from community-dwelling older patients in two previous studies: Assessing Care of Vulnerable Elders (ACOVE)-1 (245 patients age > or = 65 years and screened for high risk of death/functional decline in 1998-1999) and ACOVE-2 (566 patients age > or = 75 who screened positive for falls/mobility disorders, incontinence, and/or dementia in 2002-2003). We compared interview data on patients' preferences, advance directives, and surrogate decision-makers with findings from the medical record.In ACOVE-1, 38% of surveyed patients had thought about limiting the aggressiveness of medical care; 24% of surveyed patients stated that they had spoken to their doctor about this. The vast majority of patients (88%-93%) preferred to die rather than remain permanently in a coma, on a ventilator, or tube fed. Regardless of patients' specific preferences, 15%-22% of patients had preference information in their medical record. Among patients who reported that they had completed an advance directive and had given it to their health-care provider, 15% (ACOVE-1) and 47% (ACOVE-2) had advance directive information in the medical record. Among patients who had not completed an advance directive but had given surrogate decision-maker information to their provider, 0% (ACOVE-1) and 16% (ACOVE-2) had documentation of a surrogate decision-maker in the medical record.Community-dwelling elders' preferences for end-of-life care are not consistent with documentation in their medical records. Electronic health records and standardized data collection for end-of-life care could begin to ameliorate this problem.

Project description:BackgroundThrough advocacy initiatives such as roadshows during "National ACP Week", the Agency for Integrated Care (AIC) had increased advance care planning (ACP) engagement since 2011. Project Happy Apples (PHA), a community initiative project led by medical students from the National University of Singapore, also conducted a public exhibition to raise ACP awareness during this period. This study aimed to investigate and identify predictors of attitudes towards ACP documentation among 'ACP Week' respondents which may be used to formulate strategies to increase ACP documentation in Singapore.MethodsA cross-sectional study on ACP documentation attitudes of 262 respondents during local roadshows were conducted. Multiple logistic regression models were built to investigate the associations between demographic variables and attitudes toward ACP documentation.ResultsThe mean age was 43.5 years (SD = 17.4), 79 (30.15%) were males and 49 (18.7%) were healthcare professionals (HCP). 117 (44.66%) respondents had prior experience with serious illness and 116 (44.27%) had heard of ACP. Age was a significant predictor of readiness to sign official papers naming nominated healthcare spokesperson (NHS) (OR = 1.04, 95%CI: 1.02-1.07). Experience with serious illness was a significant predictor of readiness to discuss end-of-life (EOL) care with healthcare professionals (HCP) (OR = 3.65, 95%CI: 1.36-11.61). Being female was a significant predictor for readiness to speak to their nominated healthcare spokesperson about EOL care (OR = 7.33, 95%CI: 2.06-46.73). Subgroup analyses revealed that those aged 20-39 were less likely to speak to their healthcare professional about or sign official papers regarding EOL care. We also found that being a healthcare professional does not necessitate better or worse attitudes.ConclusionAdvocacy programs tailored to targeting respondents of different age groups and prior experience with serious illness may improve the efficacy of advocacy efforts.

Project description:Aims and objectiveAdvance care planning (ACP) is the communication process of documenting future healthcare preferences in case patients are unable to make healthcare decisions for themselves. Research suggests ACP discussions among persons living with HIV (PLHIV) are infrequent overall and may differ by gender and/or race.BackgroundPrevious literature has displayed that African Americans are less likely than other racial groups to use advanced care planning, palliative care or hospice, but does not conclusively account for ACP among PLHIV. African American PLHIV rely on informal care that may be differ by gender and represents an important pathway to increase ACP.DesignThe study was mixed methods and observational.MethodsParticipants completed self-report surveys (N = 311) and were interviewed (n = 11). Poisson regression (quantitative) and grounded theory analyses (qualitative) were implemented, using COREQ checklist principles to ensure study rigor.ResultsLess than half had discussed ACP (41.2%; N = 267). More ACP knowledge predicted 76% lower likelihood of ACP discussions among women. Men who spent more time caregiving in a given week were nearly 3 times more likely to discuss ACP than men who spent less time caregiving. Women were more likely than men to be caregivers and were also expected to serve in that role more than men, which was qualitatively described as 'being a woman'.ConclusionsThe present study is one of few studies exploring ACP among caregivers in African American populations hardest hit by HIV. Results suggest that ACP skill building and education are critical for African Americans living with HIV to promote ACP discussions with their caregivers. Knowledge about ACP topics was low overall even when healthcare had recently been accessed. Support reciprocity and gender-specific communication skill building may facilitate ACP in African American HIV informal caregiving relationships.Relevance to clinical practiceResults underscore the need for ACP education which includes healthcare providers and caregivers, given African Americans' preference for life-sustaining treatments at end-of-life. ACP is crucial now more than ever, as COVID-19 complicates care for older adults with HIV at high risk of complications.

Project description:ImportanceCOVID-19 has disproportionately killed older adults and racial and ethnic minority individuals, raising questions about the relevance of advance care planning (ACP) in this population. Video decision aids and communication skills training offer scalable delivery models.ObjectiveTo assess whether ACP video decision aids and a clinician communication intervention improved the rate of ACP documentation during an evolving pandemic, with a focus on African American and Hispanic patients.Design, setting, and participantsThe Advance Care Planning: Communicating With Outpatients for Vital Informed Decisions trial was a pre-post, open-cohort nonrandomized controlled trial that compared ACP documentation across the baseline pre-COVID-19 period (September 15, 2019, to March 14, 2020), the COVID-19 wave 1 period (March 15, 2020, to September 14, 2020), and an intervention period (December 15, 2020, to June 14, 2021) at a New York metropolitan area ambulatory network of 22 clinics. All patients 65 years or older who had at least 1 clinic or telehealth visit during any of the 3 study periods were included.Main outcomes and measuresThe primary outcome was ACP documentation.ResultsA total of 14 107 patients (mean [SD] age, 81.0 [8.4] years; 8856 [62.8%] female; and 2248 [15.9%] African American or Hispanic) interacted with clinicians during the pre-COVID-19 period; 12 806 (mean [SD] age, 81.2 [8.5] years; 8047 [62.8%] female; and 1992 [15.6%] African American or Hispanic), during wave 1; and 15 106 (mean [SD] 80.9 [8.3] years; 9543 [63.2%] female; and 2535 [16.8%] African American or Hispanic), during the intervention period. Clinicians documented ACP in 3587 patients (23.8%) during the intervention period compared with 2525 (17.9%) during the pre-COVID-19 period (rate difference [RD], 5.8%; 95% CI, 0.9%-7.9%; P = .01) and 1598 (12.5%) during wave 1 (RD, 11.3%; 95% CI, 6.3%-12.1%; P < .001). Advance care planning was documented in 447 African American patients (30.0%) during the intervention period compared with 233 (18.1%) during the pre-COVID-19 period (RD, 11.9%; 95% CI, 4.1%-15.9%; P < .001) and 130 (11.0%) during wave 1 (RD, 19.1%; 95% CI, 11.7%-21.2%; P < .001). Advance care planning was documented for 222 Hispanic patients (21.2%) during the intervention period compared with 127 (13.2%) during the pre-COVID-19 period (RD, 8.0%; 95% CI, 2.1%-10.9%; P = .004) and 82 (10.2%) during wave 1 (RD, 11.1%; 95% CI, 5.5%-14.5%; P < .001).Conclusions and relevanceThis intervention, implemented during the evolving COVID-19 pandemic, was associated with higher rates of ACP documentation, especially for African American and Hispanic patients.Trial registrationClinicalTrials.gov Identifier: NCT04660422.

Dataset Information

FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity.

Context

Objective

Methods

Results

Conclusions

Publications

FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity.

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