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Background: Although older adults with heart failure (HF) and multiple chronic conditions (MCC) frequently rely on caregivers for health management, digital health systems, such as patient portals and mobile apps, are designed for individual patients and often exclude caregivers. There is a need to develop approaches that integrate caregivers into care. This study tested the feasibility of the Social Convoy Palliative Care intervention (Convoy-Pal), a 12-week digital self-management program that includes assessment tools and resources for clinical palliative care, designed for both patients and their caregivers. Methods: A randomized waitlist control feasibility trial involving patients over 65 years old with MCC who had been hospitalized two or more times for HF in the past 12 months and their caregivers. Descriptive statistics were used to evaluate recruitment, retention, missing data, self-reported social functioning, positive aspects of caregiving, and the acceptability of the intervention. Results: Of 126 potentially eligible patients, 11 were ineligible and 69 were deceased. Of the 46 eligible patients, 31 enrolled in the trial. Although 48 caregivers were identified, only 15 enrolled. The average age was 76.3 years for patients and 71.6 years for caregivers, with most participants being non-Hispanic White. Notably, 4% did not have access to a personal mobile device or computer. Retention rates were 79% for intervention patients, 57% for intervention caregivers, and 60% for control participants. Only 4.6% of survey subscales were missing, aided by robust technical support. Intervention patients reported improved social functioning (SF-36: 64.6 ± 25.8 to 73.2 ± 31.3) compared to controls (64.6 ± 27.1 to 67.5 ± 24.4). Intervention caregivers also reported increased positive perceptions of caregiving (29.5 ± 5.28 to 35.0 ± 5.35) versus control caregivers (29.4 ± 8.7 to 28.0 ± 4.4). Waitlist control participants who later joined the Convoy-Pal program showed similar improvements. The intervention was well-rated for acceptability, especially regarding the information provided (3.96 ±.57 out of 5). Conclusions: Recruiting informal caregivers proved challenging. Nonetheless, Convoy-Pal retained patients and collected meaningful self-reported outcomes, showing potential benefits for both patients and caregivers. Given the importance of a patient and caregiver approach in palliative care, further research is needed to design digital tools that cater to multiple simultaneous users. Trial registration: ClinicalTrials.gov Identifier NCT04779931. Date of registration: March 3, 2021. [ABSTRACT FROM AUTHOR]

Background: Palliative care demands in the United States are growing amid a comparatively small workforce of palliative care clinicians and researchers. Therefore, determining research and clinical practice priorities is essential for streamlining initiatives to advance palliative care science and practice. Objectives: To identify and rank palliative care research and clinical practice priority areas through expert consensus. Design: Using a modified Delphi method, U.S. palliative care experts identified and ranked priority areas in palliative care research and clinical practice. Priorities were thematically grouped and analyzed for topic content and frequency; univariate analysis used the median of each priority item ranking, with a cutoff median of ≤8 indicating >76% agreement for an item's ranking. Results: In total, 27 interdisciplinary pediatric and adult palliative care experts representing 19 different academic institutions and medical centers participated in the preliminary survey and the first Delphi round, and 22 participated in the second Delphi round. The preliminary survey generated 78 initial topics, which were developed into 22 priority areas during the consensus meeting. The top five priorities were (1) access to palliative care, (2) equity in palliative care, (3) adequate financing of palliative care, (4) provision of palliative care in primary care settings, and (5) palliative care workforce challenges. Conclusions: These expert-identified priority areas provide guidance for researchers and practitioners to develop innovative models, policies, and interventions, thereby enriching the quality of life for those requiring palliative care services. [ABSTRACT FROM AUTHOR]

Physical frailty is emerging as a potential "trigger" for palliative care (PC) consultation, but the PC needs of physically frail persons with heart failure (HF) in the outpatient setting have not been well described. This study describes the PC needs of community dwelling, physically frail persons with HF. We included persons with HF ≥50 years old who experienced ≥ 1 hospitalization in the prior year and excluded those with moderate/severe cognitive impairment, hospice patients, or non-English speaking persons. Measures included the FRAIL scale (0–5: 0 = robust, 1–2 = prefrail, 3–5 = frail) and the Integrated Palliative Outcome Scale (IPOS) (17 items, score 0–68; higher score = higher PC needs). Multiple linear regression tested the association between frailty group and palliative care needs. Participants (N = 286) had a mean age of 68 (range 50–92) were majority male (63%) and White (68%) and averaged two hospitalizations annually. Most were physically frail (44%) or prefrail (41%). Mean PC needs (IPOS) score was 19.7 (range 0–58). On average, participants reported 5.86 (SD 4.28) PC needs affecting them moderately, severely, or overwhelmingly in the last week. Patient-perceived family/friend anxiety (58%) weakness/lack of energy (58%), and shortness of breath (47%) were the most prevalent needs. Frail participants had higher mean PC needs score (26) than prefrail (16, P < 0.001) or robust participants (11, P < 0.001). Frail participants experienced an average of 8.32 (SD 3.72) moderate/severe/overwhelming needs compared to prefrail (4.56, SD 3.77) and robust (2.39, SD 2.91) participants (P < 0.001). Frail participants reported higher prevalence of weakness/lack of energy (83%), shortness of breath (66%), and family/friend anxiety (69%) than prefrail (48%, 39%, 54%) or robust (13%, 14%, 35%) participants (P < 0.001). Physically frail people with HF have higher unmet PC needs than those who are nonfrail. Implementing PC needs and frailty assessments may help identify vulnerable patients with unmet needs requiring further assessment and follow-up. [ABSTRACT FROM AUTHOR]

1. Identify the importance of integrating caregivers into digital palliative care of older adults with heart failure. 2. Describe patient and caregiver outcomes following use of a digital palliative care self-management program. Digital health provides a modern opportunity to increase access and awareness of palliative care for older adults and their multiple informal caregivers. Digital health systems (e.g., patient portals, mobile apps, etc.) are often designed for individual users rather than integrating caregivers to maximize benefit. As older adults with heart failure (HF) rely on the support of others to help manage their health, there is a critical need to foster approaches for effective integration of caregivers in digital palliative care. To test feasibility of the Social Convoy Palliative Care intervention (Convoy-Pal); a 3-month digital self-management program including assessment tools and resources related to clinical palliative care domains for both patients and their caregivers with shared, integrated features. Randomized waitlist control pilot trial with patients 65 years and older who had been hospitalized twice or more for HF in the previous 2 years and their caregivers. We used descriptive statistics to describe recruitment, retention, missing data, and patient and caregiver self-report of social functioning, positive aspects of caregiving, and intervention acceptability. Our team mailed 503 patients recruitment invitations; 90 were ineligible,179 declined participation, and 31 patients and 15 of their caregivers (N=46) enrolled in the trial. Patients were 76.3 years of age, and caregivers 71.6, primarily White, but not all had access to a mobile device or computer. The study maintained a 67.4% retention rate, with 4.6% missing subscales on surveys, in part due to our established processes for providing technical support. Intervention patients reported improvements in social functioning (SF-36: 64.6±25.8 vs. 73.2±31.3) and caregivers reported increased perceptions of positive aspects of caregiving (29.5±5.28 vs. 35.0±5.35). Intervention acceptability was well-rated via the User Rated Mobile Application Scale, particularly related to the information provided (4.0±.43 out of 5). Convoy-Pal is feasible to deliver to both older patients and their caregivers. Because palliative care is a patient and caregiver approach to serious illness care, more research is needed to determine how to best design digital palliative care tools for multiple, varied age, and diverse simultaneous users. The Convoy-Pal digital health palliative care intervention provides an innovative way to increase access and awareness of palliative care assessments and resources for older adults and their multiple informal caregivers. [ABSTRACT FROM AUTHOR]

Purpose: To perform a mixed methods review to evaluate the effectiveness and implementation of models for integrating palliative care into ambulatory care for US adults with noncancer serious chronic illness.Methods: We searched 3 electronic databases from January 2000 to May 2020 and included qualitative, mixed methods studies and randomized and nonrandomized controlled trials. For each study, 2 reviewers abstracted data and independently assessed for quality. We conducted meta-analyses as appropriate and graded strength of evidence (SOE) for quantitative outcomes.Results: Quantitative analysis included 14 studies of 2,934 patients. Compared to usual care, models evaluated were not more effective for improving patient health-related quality of life (HRQOL) (standardized mean difference [SMD] of 4 of 8 studies, 0.19; 95% CI, ‒0.03 to 0.41) (SOE: moderate) or for patient depressive symptom scores (SMD of 3 of 9 studies, ‒0.09; 95% CI, ‒0.35 to 0.16) (SOE: moderate). Models might have little to no effect on patient satisfaction (SOE: low) but were more effective for increasing advance directive (AD) documentation (relative risk, 1.62; 95% CI, 1.35 to 1.94) (SOE: moderate). Qualitative analysis included 5 studies of 146 patients. Patient preferences for appropriate timing of palliative care varied; costs, additional visits, and travel were considered barriers to implementation.Conclusion: Models might have little to no effect on decreasing overall symptom burden and were not more effective than usual care for improving HRQOL or depressive symptom scores but were more effective for increasing AD documentation. Additional research should focus on identifying and addressing characteristics and implementation factors critical to integrating models to improve ambulatory, patient-centered outcomes. [ABSTRACT FROM AUTHOR]

Background: Vital components of communicating goals of care and preferences include eliciting the patient and caregiver's definition of quality of life, understanding meaningful activities and relationships, and exploring wishes for care at the end of life. Although current literature suggests framing conversations regarding end of life through the lens of meaning and quality of life, there is limited literature exploring dyadic congruence surrounding these important constructs among patients with ventricular assist devices (VADs) and their caregivers. Objectives: The purpose of this study was to explore congruence of VAD patient and caregiver perspectives regarding end of life, definitions of quality of life, and meaning in life while managing the uncertainty of living with a VAD. Methods: We used thematic analysis to analyze semistructured qualitative interviews of 10 patient-caregiver dyads 3 to 12 months after VAD implantation. Results: Three major themes were identified: (1) differing trajectories of uncertainty and worry, (2) a spectrum of end-of-life perspectives, and (3) enjoying everyday moments and independence. Overall, patients and caregivers had differing perspectives regarding uncertainty and end of life. Within-dyad congruence was most evident as dyads discussed definitions of meaning or quality of life. Conclusions: Dyadic perspectives on end of life, meaning in life, and quality of life can inform how palliative care and VAD teams approach conversations about planning for the end of life. Findings from this study can inform future shared decision-making interventions for patients living with VADs and their caregivers. [ABSTRACT FROM AUTHOR]

Background: Early integration of palliative care (PC) for patients with heart failure (HF) improves patient outcomes and decreases health care utilization. PC provided outside of an acute hospitalization is not well understood. Objective: To synthesize the literature of outpatient PC in HF to identify the current landscape, the impact on patient health outcomes, key stakeholders' perspectives, and future implications for research and practice. Design: A systematic search of PubMed, Embase, CINAHL, Cochrane, and Web of Science was conducted from inception to February 2019 for studies of outpatient PC in adults with HF. Each study was analyzed to describe study characteristics, location of PC, types of providers involved, participant characteristics, and main findings, and to characterize domains of PC addressed. Results: Most studies (N = 19) employed a quantitative design and were conducted in the United States. The most common locations of PC were the home or PC clinic and providers were mainly PC specialists. Outpatient PC improved quality of life, alleviated symptoms, and decreased rehospitalizations for patients with HF. No study addressed all eight domains of PC. The structural, physical, and psychological domains were commonly addressed, whereas, least commonly addressed domains were the cultural and ethical/legal domain. Women and ethnic minorities were underrepresented in the majority of samples. Conclusions: This integrative review highlights the need to promote primary PC and future PC research focusing on a holistic, integrated, team-based approach addressing all domains of PC in representative samples. [ABSTRACT FROM AUTHOR]

Outcomes: 1. Describe prevalent palliative care needs of physically frail persons with heart failure (HF) 2. Compare palliative care needs of robust, pre-frail, and frail community-dwelling persons with HF Physical frailty is emerging as a potential "trigger" for palliative care (PC) consultation, but the PC needs of physically frail persons with heart failure (HF) in the outpatient setting have not been well described. This study describes the PC needs of community-dwelling, physically frail persons with HF. We included persons with HF >50 years old who experienced >1 hospitalization in the prior year and excluded those with moderate/severe cognitive impairment, were enrolled in hospice or were non-English speaking. Measures included the FRAIL scale (0–5: 0 = robust, 1–2 = pre-frail, 3–5 = frail) and the Integrated Palliative Outcome Scale (17 items, score 0–68; higher score = higher PC needs). Multiple linear regression tested the association between PC needs and frailty group. Participants (N=292) had a mean age of 68 (range 50–92) were majority male (63%) and White (68%), and averaged two hospitalizations annually. Most were physically frail (44%) or pre-frail (41%). Mean palliative care needs score was 19.7 (range 0–58). Participants reported 5.86 (SD 4.28) PC needs affecting them moderately, severely, or overwhelmingly in the last week. Patient-perceived family/friend anxiety (57.7%) and weakness/lack of energy (57.7%) were the most prevalent needs. Frail participants had higher mean PC needs scores (26) than pre-frail (16, p< 0.001) or robust participants (11, p< 0.001). Frail participants experienced an average of 8.32 (SD 3.72) moderate/severe/overwhelming needs compared to prefrail (4.56, SD 3.77) and robust (2.39, SD 2.91) participants (p< 0.001). Frail participants reported higher prevalence of weakness/lack of energy (83.1%) and family/friend anxiety (69.2%) than pre-frail (48%, 54%) or robust (13%, 35%) participants (p< 0.001). Physically frail people with HF have higher unmet PC needs than those who are pre-frail and robust. Implementing PC needs and frailty assessments may help identify vulnerable patients with unmet needs requiring further assessment and follow-up. [ABSTRACT FROM AUTHOR]

1. Discuss the state of the science on advance care planning and palliative care consultation in kidney transplant candidates and recipients 2. Describe the prevalence and racial and ethnic disparities of advance care planning and palliative care consultation in kidney transplant candidates and recipients 3. Propose solutions and interventions for the racial disparities and low prevalence of advance care planning and palliative care consultation among kidney transplant candidates and recipients Among patients listed for kidney transplant (KT), 27% die or are removed from the waitlist. Many KT recipients will need another transplant in their lifetime; therefore, both candidates and recipients experience high mortality and symptom burden. These patients could benefit from palliative care (PC) and advance care planning (ACP), but it is unclear how many and which patients receive ACP and PC. To estimate prevalence of ACP and PC by age and race among adult KT candidates and recipients. Among 2,579 KT candidates and 1,234 KT recipients (12/2008-2/2020), we assessed the presence of ACP and PC through chart review. ACP and PC correlates were identified via multivariable logistic regression. KT candidates' and recipients' mean ages were 55 and 53 years, respectively; 46.6% and 40.5% were Black. 21.4% of candidates had ACP; prevalence was higher in older (18-64 years = 19.9%, 65+ = 25.7%) and White candidates (White = 24.4%, Black = 19.1%, Hispanic = 15.0%, other race = 21.0%). 34.9% of recipients had ACP; similarly, older (18-64 years = 31.7%, 65+ = 47.1%) and White (White = 39.5%, Black = 31.2%, Hispanic = 26.3%, other = 26.6%) patients had higher prevalence. After adjustment, older age (OR = 1.85, 95% CI 1.35-2.53) and Black race (OR = 0.68, 95% CI 0.51-0.91) were associated with ACP only among KT recipients. PC prevalence was 4.3% in candidates and 5.1% in recipients and higher in older candidates (18-64 years = 3.8%, 65+ = 5.6%, p = 0.046) and recipients (18-64 years = 3.8%, 65+ = 10.0%, p < 0.001). After adjustment, only Black race (OR = 0.65, 95% CI 0.42-0.99) was associated with PC in candidates, while only older age (OR = 2.47, 95% CI 1.38-4.41) was associated with PC in recipients. KT candidates and recipients experience a lower prevalence of ACP and PC compared to patients with chronic illness in the United States. Importantly, significant racial and ethnic disparities exist in ACP. PC remains underutilized among KT candidates and recipients, more so for Black and Hispanic patients, and may improve symptom burden and ACP. [ABSTRACT FROM AUTHOR]