Search

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.

BACKGROUND: Goals of care conversations explore seriously ill patients values to guide medical decision making and often inform decisions about life sustaining treatments. Ideally, conversations occur before a health crisis between patients and clinicians in the outpatient setting. In the United States Veterans Affairs (VA) healthcare system, most conversations still occur in the inpatient setting. Strategies are needed to improve implementation of outpatient, primary care goals of care conversations. METHODS: We plan a cluster randomized (clinician-level) sequential, multiple assignment randomized trial to evaluate the effectiveness of patient implementation strategies on the outcome of goals of care conversation documentation when delivered in combination with clinician implementation strategies. Across three VA healthcare system sites, we will enroll primary care clinicians with low rates of goals of care conversations and their patients with serious medical illness in the top 10th percentile of risk of hospitalization or death. We will compare the effectiveness of sequences of implementation strategies and explore how patient and site factors modify implementation strategy effects. Finally, we will conduct a mixed-methods evaluation to understand implementation strategy success or failure. The design includes two key innovations: (1) strategies that target both clinicians and patients and (2) sequential strategies with increased intensity for non-responders. CONCLUSION: This study aims to determine the effect of different sequences and combinations of implementation strategies on primary care documentation of goals of care conversations. Study partners, including the VA National Center for Ethics in Health Care and Office of Primary Care, can consider policies based on study findings.

Background: Advance care planning initiatives are becoming more widespread, increasing expectations for providers to engage in goals of care conversations. However, less is known about how providers communicate advance care planning within and throughout a health care system. Aim: To explore perspectives of communication processes in the rollout of an advance care planning initiative. Design: Theoretically informed secondary analysis of 31 semi-structured interviews. Setting/Participants: Key partners in a Veterans Health Administration goals of care initiative. Results: Using the constant comparative approach followed by qualitative mapping of themes to the layers of the Socio-Ecological Model, four themes and corresponding Socio-Ecological layers were identified: Goals of Care Communication Training (Policy, Community, and Institutional) requires more resources across sites and better messaging to reduce provider misconceptions and promote an institutional culture invested in advance care planning; Interprofessional Communication (Interpersonal) suggests care team coordination is needed to facilitate continuity in goals of care messaging; Communication in Documentation (Institutional, Interpersonal, and Intrapersonal) highlights the need for capturing the context for goals of care preferences; and Patient/Family Communication (Interpersonal and Intrapersonal) encourages offering materials and informational resources early to facilitate rapport building and readiness to determine goals of care. Conclusions: Findings support the need for initiatives to incorporate an evaluation of how goals of care are discussed beyond the interpersonal exchange between patient and provider and signal opportunities for applying the Socio-Ecological Model to better understand goals of care communication processes, including opportunities to improve initiation and documentation of goals of care. [ABSTRACT FROM AUTHOR]

Background: Palliative care improves the quality of life for people with life‐limiting conditions, which are common among older adults. Despite the Veterans Health Administration (VA) outpatient palliative care expansion, most research has focused on inpatient palliative care. This study aimed to compare veteran characteristics and hospice use for palliative care users across care settings (inpatient vs. outpatient) and dose (number of palliative care encounters). Methods: This national cohort included veterans with any VA palliative care encounters from 2014 through 2017. We used VA and Medicare administrative data (2010–2017) to describe veteran demographics, socioeconomic status, life‐limiting conditions, frailty, and palliative care utilization. Specialty palliative care encounters were identified using clinic stop codes (353, 351) and current procedural terminology codes (99241–99245). Results: Of 120,249 unique veterans with specialty palliative care over 4 years, 67.8% had palliative care only in the inpatient setting (n = 81,523) and 32.2% had at least one palliative care encounter in the outpatient setting (n = 38,726), with or without an inpatient palliative care encounter. Outpatient versus inpatient palliative care users were more likely to have cancer and less likely to have high frailty, but sociodemographic factors including rurality and housing instability were similar. Duration of hospice use was similar between inpatient (median = 37 days; IQR = 11, 112) and outpatient (median = 44 days; IQR = 14, 118) palliative care users, and shorter among those with only one palliative care encounter (median = 18 days; IQR = 5, 64). Conclusions: This national evaluation provides novel insights into the care setting and dose of VA specialty palliative care for veterans. Among veterans with palliative care use, one‐third received at least some palliative care in the outpatient care setting. Differences between veterans with inpatient and outpatient use motivate the need for further research to understand how care settings and number of palliative care encounters impact outcomes for veterans and older adults. [ABSTRACT FROM AUTHOR]

Objective: Higher uncertainty is associated with poorer quality of life and may be impacted by clinician communication about the future. We determined how patients undergoing lung transplant evaluation experience uncertainty and communication about the future from clinicians. Methods: We performed a convergent parallel mixed‐methods study using a cross‐sectional survey and semistructured interviews. Patients undergoing lung transplant evaluation at the University of Colorado and the University of Washington answered questions about future communication and completed the Mishel Uncertainty in Illness Scale‐Adult (MUIS‐A; range 33–165, higher scores indicate more uncertainty). Interviews were analyzed using content analysis. Integration of survey and interview results occurred during data interpretation. Results: A total of 101 patients completed the survey (response rate: 47%). Twelve survey participants completed interviews. In the survey, most patients identified changing family roles as important (76%), which was infrequently discussed with clinicians (31%). Most patients (86%) worried about the quality of their life in the future, and 74% said that not knowing what to expect in the future prevented them from making plans. The mean MUIS‐A score was 85.5 (standard deviation 15.3). Interviews revealed three themes: (1) uncertainty of the future distresses participants; (2) participants want practical information from clinicians; and (3) communication preferences vary among participants. Conclusion: Participants experienced distressing uncertainty and wanted information about the future. Communication topics that were important to participants were not always addressed by physicians. Clinicians should address how chronic lung disease and lung transplant can directly impact patients' lives and support patients to cope with uncertainty. [ABSTRACT FROM AUTHOR]

ObjectivesMethodsResultsConclusionsClinical ImplicationsPatients often struggle with psychological and social stressors that accompany life-limiting chronic illness. Because psychosocial concerns may be conveyed through emotional sentiments, this study aimed to identify emotional expressions to describe psychosocial contexts communicated during goals of care conversations.This qualitative study evaluated 26 transcripts of goals of care conversations using a “goals of communication guide” from the ADvancing system Alleviation with Palliative Treatment (ADAPT) trial in VA Eastern Colorado and Puget Sound Health Systems. Using an inductive and deductive approach, a codebook was developed to examine participants’ expressed emotions regarding overall goals of care, illness, end of life, and family involvement. Major themes around psychosocial concerns were summarized.Four themes on psychosocial contexts in goals of care conversations emerged, with instances of both positive and negative affect. Participants commonly discussed contexts relating to: acceptance of illness, the feeling of being a burden; illness transitions; and suffering from disease.Unprompted within these conversations, patient emotional sentiments in goals of care conversations highlight psychosocial contexts important to patient values and preferences around treatment decisions.Emphasis on clinician recognition of these psychosocial contexts may help clinicians better support and elicit patient goals and preferences. [ABSTRACT FROM AUTHOR]

1. Describe the content delivered in the nurse and social worker palliative telecare team intervention. 2. Summarize the most common recommendations provided by the collaborative care team in the ADAPT intervention. A nurse and social worker palliative telecare team provided structured symptom management, psychosocial care, and individualized medical changes to improve quality of life, depression, and anxiety for patients with COPD, HF, and ILD. In a multi-site RCT, a nurse and social worker palliative telecare team (ADAPT) improved quality of life, disease-specific health status, depression, and anxiety among patients with COPD, HF, and ILD. Understanding intervention content and processes will help with implementation in different contexts. To summarize the content and processes of the core components of the ADAPT intervention as it was delivered. Intervention processes were prospectively tracked. We used descriptive statistics to examine the 3 intervention components: 1) symptom care by a registered nurse (RN), 2) psychosocial care by a social worker (SW), and 3) weekly interdisciplinary collaborative care team (CCT) meetings, including the RN, SW, an internist, a palliative care specialist, and as needed cardiologist and pulmonologist, to make recommendations (many of which were subject to approval by participant's primary care clinician) to improve patient quality of life. Participants (n=153) averaged 8.6 (SD 2.9) visits with the RN, with mean visit length of 42.1 minutes (SD 23.7). Participants averaged 7.3 (SD 2.26) visits with the SW, with mean visit length of 46.4 (SD 22.1) minutes. Over half of the visits (56.2%) were joint visits with both the SW and the RN. 76.5% (n=117) completed all required social work and nurse visits. The CCT discussed each participant an average of 3.7 (SD 1.8) times and made 7 (SD 3.8) recommendations per participant. Of 148 participants who received a recommendation from the CCT, 79.7% (n=118) of participants received a consult recommendation (e.g., mental health, sleep clinic, cardiac/pulmonary clinic), 63.5% (n=94) received a recommendation related to achieving the participant's selected goal (e.g. increase physical activity, start using CPAP consistently) 58.1% (n=86) a medication addition, 33.1% (n=49) had a test ordered, 31.8% (n=47) a medication changed, 21.6% (n=32) lab ordered, 21% (n=31) received a handout (e.g. CPAP education, community resources, advanced care planning), and 15.5% (n=23) had a medication discontinued. Most participants completed all RN and SW visits, over half of which were RN and SW joint visits. CCT recommendations were diverse and individualized to address a variety of participant symptoms and needs. A nurse and social work palliative telecare team used collaborative care to tailor recommendations to the unique needs and symptoms of each patient, thereby improving quality of life. Models of palliative/hospice care delivery/Palliative care in chronic, non-malignant illness [ABSTRACT FROM AUTHOR]

1. Describe themes in goals of care discussions with veterans. 2. Describe clinical implications for incorporating a communication guide into goals of care discussions. Nurse and social worker-led telephone goals of care discussions can effectively explore patient goals, values, and preferences. Conversations were highly individualized, productive, and well-received by veterans. While clinicians, patients, and governing bodies agree that goals of care discussions are essential to provide holistic, person-centered care, it is important to characterize patient responses to better execute these critical discussions. Recorded goals of care discussions offer a rich opportunity for qualitative analysis to reveal more about the dynamics of actual conversations in real-world, outpatient settings. Evaluate goals of care discussions facilitated by a nurse or social worker using inductive thematic analysis. Goals of care discussions led by a nurse or social worker were audio recorded for 141 veterans with chronic heart and lung diseases enrolled in a clinical trial. A semi-structured, 7-question communication guide was used to facilitate discussions. Recordings were randomly ordered and the first 27 meeting inclusion criteria for audio quality and content completeness were transcribed. Three independent coders created a codebook and iteratively developed emerging themes, which were further refined through team consensus. Participants had a mean age of 66 years (SD 6), were 93% male, and 70% self-identified non-Hispanic white. The mean length of recordings was 51 minutes (SD 14). Four themes emerged: (1) participants expressed that the discussions were appreciated and meaningful; (2) participants' sense of readiness to discuss their goals of care varied widely, yet many who expressed initial discomfort eventually engaged and identified goals; (3) participants' goals were highly individualized and frequently achievable by adjusting their medical treatments; and (4) participants conflated medical and legal terminology. A communication guide in the hands of skilled, trained nurses and social workers can lead to highly individualized discussions to inform treatment plans, enable clinicians to engage in whole-person care, and are well received by veterans. A phone call with a nurse or social worker using a communication guide allowed people with heart failure and chronic lung diseases to explore and articulate goals of care. [ABSTRACT FROM AUTHOR]

1. Explain methods for evaluating the costs and benefits of a clinical palliative care intervention. 2. Apply the results of this economic analysis to engage stakeholders considering implementing a similar intervention. A nurse and social worker palliative telecare team improved quality of life, depression, anxiety, and disease-specific health status for patients with heart failure (HF), chronic obstructive pulmonary disease (COPD), and interstitial lung disease for a relatively low cost. In a randomized clinical trial, people with heart failure (HF), chronic obstructive pulmonary disease (COPD), and interstitial lung disease who received a nurse and social worker palliative telecare team intervention had improvements in quality of life, depression, anxiety, and disease-specific health status at 6 months. Understanding intervention costs will inform dissemination and implementation of the intervention. Describe the total cost and incremental costs per 1-unit improvement in outcomes of a palliative telecare team intervention. Per-patient costs were calculated using personnel time-based activity costing which research staff prospectively recorded throughout the study. Time was multiplied by hourly mean wages from the US Bureau of Labor Statistics. Effectiveness was defined as the difference between the intervention and control groups in change from baseline to 6 months on self-report measures. Incremental costs per change in outcome were calculated; a 1-unit change was defined as 1 minimal clinically important difference on the measure used. The mean total cost of the intervention per patient was $1,139.68 US dollars (SD $368.15). Mean disaggregated costs by personnel were 10.02 hours ($448.05) for the nurse, 6.63 hours ($207.76) for the social worker, and 38 minutes ($79.11) on average per collaborating physician (primary care, palliative care, cardiologist, pulmonologist). The incremental costs per change in clinical outcomes were: $247.76 (95%CI $116.27-$379.24) for quality of life, $482.92 (95%CI $164.17-$801.66) for depression, $476.85 (95%CI $153.91-$799.79) for anxiety, $160.97 (95%CI $106.91-$215.03) for HF-specific health status, and $3,561.50 (95%CI $1,994.89-$5,128.11) for COPD-specific health status. This palliative telecare team produced clinically meaningful changes in quality of life for a relatively low cost, potentially justifying dissemination. Estimates of personnel time and costs associated with this effective palliative care intervention can inform decision-makers considering implementation. Models of palliative/hospice care delivery/Economic evaluations [ABSTRACT FROM AUTHOR]

1. To better understand provider barriers faced by organizational leaders when implementing goals of care conversations in primary care settings. 2. To better understand teamwork and system barriers faced by organizational leaders when implementing goals of care conversations in primary care settings. The session will report on research findings that capture the perspectives of organizational leaders on what barriers they face when implementing goals of care conversations in primary care settings. This research is being conducted as part of a large, multi-site pragmatic implementation trial to improve uptake of goals of care conversations within the Veterans Health Administration. Across the Veterans Health Administration (VHA), few goals of care conversations (GoCCs) occur in primary care (PC) settings. We aimed to identify current barriers PC organizational leaders face when implementing GoCC for seriously ill Veterans. We conducted semi-structured interviews with 20 interdisciplinary organizational leaders (physicians, nurses, and social workers) from three VA facilities. We used the Consolidated Framework for Implementation Research (CFIR) to inform interview guide development. Our analytic approach relied on thematic analysis, in conjunction with team and role theories to inform coding. Five themes represented barriers reported by organizational leaders (Table 1). Leaders recognized GoCCs as foundational but would rather focus efforts on engaging patients and iteratively preparing them for future decision making – such as focusing on goals, values, and surrogate decision makers – rather than capturing preferences for life-sustaining treatments alone (Theme 1). Additionally, leaders perceived documentation as burdensome and limited in capturing high-quality GoCC (Theme 2). They viewed documentation by clinicians as often variable, thus variably useful. In addition to describing barriers specific to conversations and documentation, leaders shared factors impeding successful teamwork regarding GoCC. Interdisciplinary team members disagreed about whose role it was to complete tasks. Lack of a shared mental model and insufficient time were commonly reported (Theme 3). Leaders cited difficulties in engaging and training all team members on how to implement GoCC effectively, even when materials were available for dissemination (Theme 4). Lastly, even if there were capacity to train teams, perform GoCC, and document, leaders worried about insufficient prioritization of quality improvement initiatives (Theme 5), largely because quality metrics that facilities are judged on do not pertain to GoCC. We identified key barriers for implementing GOCCs, including beliefs regarding the content of GoCC, challenges with documentation, role identities of interdisciplinary team members, team engagement, and prioritization. Shared Decision Making / Advance Care PlanningPatient Outcomes [ABSTRACT FROM AUTHOR]

Background: Few randomized clinical trials test the effect of interventions on heart failure caregiver well-being., Objective: The aim of this study was to determine the effect of a patient-focused symptom and psychosocial collaborative care intervention (Collaborative Care to Alleviate Symptoms and Adjust to Illness) on heart failure caregiver depression, burden, and benefit-finding., Methods: A sequential explanatory mixed-method design was used in the context of a multisite, randomized clinical trial. Self-reported caregiver depression, burden, and benefit-finding were assessed at baseline and 12 months. Thematic analysis was conducted on social worker documentation of a psychosocial intervention with caregivers., Results: One hundred one caregivers were randomized to usual care or Collaborative Care to Alleviate Symptoms and Adjust to Illness. There were no significant differences in caregiver depression, burden, or benefit-finding between usual care and Collaborative Care to Alleviate Symptoms and Adjust to Illness. Caregiver outcomes were discussed in 42% of intervention notes, highlighting varied and complex caregiver experiences. Inductive analysis reaffirmed the complexity and range of caregiver needs and experiences., Conclusion: A patient symptom/psychosocial intervention did not impact caregiver well-being. Interventions should target specific needs of caregivers., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)