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Key components of advance care planning (ACP) for the elderly include choosing a surrogate decision maker, identifying personal values, communicating with surrogates and clinicians, documenting wishes in advance directives, and translating values and preferences for future medical care into medical orders. ACP often involves multiple brief discussions over time. This article outlines common benefits and barriers to ACP in primary care, and provides practical approaches to integrating key ACP components into primary care for older adults. Opportunities for multidisciplinary teams to incorporate ACP into brief clinic visits are highlighted.

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., (© 2024. The Author(s).)

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., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Published by Elsevier Inc.)

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., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., (© 2024 The American Geriatrics Society.)

Objectives: To elicit perspectives from specialist palliative care (SPC) and cardiology clinicians concerning the necessary components, delivery characteristics and implementation strategies of successful ambulatory SPC for people with heart failure (HF)., Background: Palliative care is a recommended component of guideline-directed care for people with HF. However, optimal strategies to implement SPC within ambulatory settings are unknown., Methods: We conducted a qualitative descriptive study composed of semistructured interviews with SPC and cardiology clinicians at Veterans Affairs Medical Centers (VAMCs) with the highest number of ambulatory SPC consultations within the VA system among people with HF between 2021 and 2022. Clinicians were asked how they provided ambulatory SPC and what they felt were the necessary components, delivery characteristics and implementation strategies of care delivery. Interviews were analyzed using directed content analysis., Results: We interviewed 14 SPC clinicians and 9 cardiology clinicians at 7 national VAMCs; 43% were physicians, and 48% were advanced-practice registered nurses/physician associates. Essential components of ambulatory SPC encompassed discussion of goals of care (eg, prognosis, advance directives) and connecting patients/caregivers to resources (eg, home care). Preferred delivery characteristics included integrated (ie, embedded) approaches to SPC delivery, standardized patient selection and referral procedures, and formalized procedures for handoffs to and from SPC. Strategies that addressed SPC implementation included deploying palliative champions, educating non-SPC clinicians on the value of ambulatory SPC for people with HF and developing ambulatory models through leadership support., Conclusions/implications: Facilitating the broader adoption of ambulatory SPC among people with HF may be achieved by prioritizing these mutually valued and necessary features of SPC delivery., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Few studies have examined how spiritual well-being changes over time in patients with heart failure. We conducted a secondary analysis of data from the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) trial (N = 314). Spiritual well-being was measured using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp) at baseline and 12-month follow-up. Of the 165 patients with spiritual well-being data at follow-up, 65 (39%) experienced probable clinically meaningful changes (> 0.5 SD) in spiritual well-being (35 improved, 30 declined). Increased pain (p = 0.04), decreased dyspnea (p < 0.01), and increased life completion (p = 0.02) were associated with improvement in overall spiritual well-being. Exploratory analyses found different predictors for FACIT-Sp subscales., (© 2022. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)

Background: Documenting goals of care in the electronic health record is meant to relay patient preferences to other clinicians. Evaluating the content and documentation of nurse and social worker led goals of care conversations can inform future goals of care initiative efforts., Methods: As part of the ADvancing symptom Alleviation with Palliative Treatment trial, this study analyzed goals of care conversations led by nurses and social workers and documented in the electronic health record. Informed by a goals of care communication guide, we identified five goals of care components: illness understanding, goals and values, end of life planning, surrogate, and advance directives. Forty conversation transcripts underwent content analysis. Through an iterative team process, we defined documentation accuracy as four categories: (1) Complete-comprehensive accurate documentation of the conversation, (2) Incomplete-partial documentation of the conversation, (3) Missing-discussed and not documented, and (4) Incorrect-misrepresented in documentation. We also defined-Not Discussed-for communication guide questions that were not discussed nor documented. A constant comparative approach was used to determine the presence or absence of conversation content in the documentation., Results: All five goals of care components were discussed in 67% (27/40) of conversation transcripts. Compared to the transcripts, surrogate (37/40, 93%) and advance directives (36/40, 90%) were often documented completely. Almost 40% of goals and values (15/40, 38%) and half of end of life planning (19/40, 48%) were incomplete. Illness understanding was missing (13/40, 33%), not discussed (13/40, 33%), or incorrect (2/40, 5%)., Conclusion: Nurse and social worker led goals of care conversations discussed and documented most components of the goals of care communication guide. Further research may guide how best to determine the relative importance of accuracy, especially in the broad setting of incomplete, missing, and incorrect EHR documentation., (© 2024 The American Geriatrics Society. This article has been contributed to by U.S. Government employees and their work is in the public domain in the USA.)

Objectives: To identify perceptions and experiences related to caring science and collaborative care in intervention participants of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) study, a randomized, multi-site clinical trial for patients with chronic heart failure and reduced health status., Methods: Forty-five participants completed semi-structured, telephone interviews with a focus on intervention components, impact of the intervention on participants' lives, and recommendations for intervention change. Data were analyzed using an inductive content analysis approach focusing on the presence and frequency of text to identify patterns, categories, and themes across participants without an a priori code book. The validity of the identified categories was enhanced through triangulation., Results: Three themes were identified: (1) intervention providers' caring/helping attitude and caring/helping communication; (2) care team availability to respond to concerns or questions; and (3) help with understanding and navigating the healthcare system., Discussion: Patients highly value caring attitudes and communication, availability, and empowerment to understand and navigate healthcare systems. These attitudes and behaviors may be important mediators of the success of collaborative care programs. These are consistent with the theory of caring science, a framework that is relevant more broadly to patient-centered and team-based care models., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., (© 2024 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Context: Use of palliative care interventions in chronic obstructive pulmonary disease (COPD) has increased in recent years and inclusion criteria used to identify patients with COPD appropriate for palliative care vary widely. We evaluated the inclusion criteria to identify ways to improve enrollment opportunities for patients with COPD., Objectives: To determine inclusion criteria used to select patients with COPD for palliative care trials., Methods: A systematic review was conducted to determine criteria used to select patients with COPD for palliative care randomized controlled trials. A narrative synthesis was conducted for all trials., Results: Inclusion criteria were highly heterogeneous. Most studies (n = 11, 79%) used a combination of criteria to identify patients with COPD. Commonly used criteria included hospitalization for an acute exacerbation of COPD (n = 8, 57%), home supplemental oxygen use (n = 8, 57%), and spirometry values confirming COPD (n = 6, 43%). Three studies (21.4%) used Modified Medical Research Council score and two studies (21%) used physician prognosis or a performance scale., Conclusion: The most common criteria, a hospitalization for acute exacerbation of COPD or supplemental oxygen use at home, both have the benefit of selecting patients who have a higher symptom burden or higher healthcare utilization who might therefore benefit more from palliative care. By describing the landscape and variability of previously used inclusion criteria, this article serves as a resource for clinicians and researchers. Developing a consistent set of inclusion criteria in the future would help generate generalizable results that can be translated into clinical practice to improve the lives of patients with COPD., Prospero Registration Number: CRD42022306752., (Copyright © 2024 American Academy of Hospice and Palliative Medicine. All rights reserved.)

Background: "Benefit finding" is a strengths-based strategy for coping with medical illness that may be particularly useful for caregivers of people with heart failure given the highly fluctuating disease course., Objective: The aim of this study was to investigate benefit finding's association with the caregiver-care recipient relationship, depression, and burden at baseline and longitudinally., Methods: This is a longitudinal observational study of caregivers' benefit finding, relationship quality, depression, and burden. Correlation and multiple regression analyses identify baseline associations and predictors of 12-month change in benefit finding., Results: At baseline (n = 100; median, 60 years [interquartile range, 46-69]; 81% female, 70% partner/spouse), increased benefit finding correlated with higher relationship quality (r = 0.53; 95% confidence interval [CI], 0.38-0.67), lower depression (r = -0.33; 95% CI, -0.49 to -0.14), and lower burden (r = -0.31; 95% CI, -0.47 to -0.11). Twelve-month change in benefit finding was predicted by change in relationship quality (ß = 7.12; 95% CI, 0.62-13.61) but not depression or burden., Conclusions: Relationship quality and benefit finding changed together over time. Interventions strengthening the caregiver-care recipient bond may be especially impactful for heart failure caregivers., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Importance: Many patients with chronic obstructive pulmonary disease (COPD), heart failure (HF), and interstitial lung disease (ILD) endure poor quality of life despite conventional therapy. Palliative care approaches may benefit this population prior to end of life., Objective: Determine the effect of a nurse and social worker palliative telecare team on quality of life in outpatients with COPD, HF, or ILD compared with usual care., Design, Setting, and Participants: Single-blind, 2-group, multisite randomized clinical trial with accrual between October 27, 2016, and April 2, 2020, in 2 Veterans Administration health care systems (Colorado and Washington), and including community-based outpatient clinics. Outpatients with COPD, HF, or ILD at high risk of hospitalization or death who reported poor quality of life participated., Intervention: The intervention involved 6 phone calls with a nurse to help with symptom management and 6 phone calls with a social worker to provide psychosocial care. The nurse and social worker met weekly with a study primary care and palliative care physician and as needed, a pulmonologist, and cardiologist. Usual care included an educational handout developed for the study that outlined self-care for COPD, ILD, or HF. Patients in both groups received care at the discretion of their clinicians, which could include care from nurses and social workers, and specialists in cardiology, pulmonology, palliative care, and mental health., Main Outcomes and Measures: The primary outcome was difference in change in quality of life from baseline to 6 months between the intervention and usual care groups (FACT-G score range, 0-100, with higher scores indicating better quality of life, clinically meaningful change ≥4 points). Secondary quality-of-life outcomes at 6 months included disease-specific health status (Clinical COPD Questionnaire; Kansas City Cardiomyopathy Questionnaire-12), depression (Patient Health Questionnaire-8) and anxiety (Generalized Anxiety Disorder-7) symptoms., Results: Among 306 randomized patients (mean [SD] age, 68.9 [7.7] years; 276 male [90.2%], 30 female [9.8%]; 245 White [80.1%]), 177 (57.8%) had COPD, 67 (21.9%) HF, 49 (16%) both COPD and HF, and 13 (4.2%) ILD. Baseline FACT-G scores were similar (intervention, 52.9; usual care, 52.7). FACT-G completion was 76% (intervention, 117 of 154; usual care, 116 of 152) at 6 months for both groups. Mean (SD) length of intervention was 115.1 (33.4) days and included a mean of 10.4 (3.3) intervention calls per patient. In the intervention group, 112 of 154 (73%) patients received the intervention as randomized. At 6 months, mean FACT-G score improved 6.0 points in the intervention group and 1.4 points in the usual care group (difference, 4.6 points [95% CI, 1.8-7.4]; P = .001; standardized mean difference, 0.41). The intervention also improved COPD health status (standardized mean difference, 0.44; P = .04), HF health status (standardized mean difference, 0.41; P = .01), depression (standardized mean difference, -0.50; P < .001), and anxiety (standardized mean difference, -0.51; P < .001) at 6 months., Conclusions and Relevance: For adults with COPD, HF, or ILD who were at high risk of death and had poor quality of life, a nurse and social worker palliative telecare team produced clinically meaningful improvements in quality of life at 6 months compared with usual care., Trial Registration: ClinicalTrials.gov Identifier: NCT02713347.

Objectives: To inform personalised home-based rehabilitation interventions, we sought to gain in-depth understanding of lung cancer survivors' (1) attitudes and perceived self-efficacy towards telemedicine; (2) knowledge of the benefits of rehabilitation and exercise training; (3) perceived facilitators and preferences for telerehabilitation; and (4) health goals following curative intent therapy., Design: We conducted semi-structured interviews guided by Bandura's Social Cognitive Theory and used directed content analysis to identify salient themes., Setting: One USA Veterans Affairs Medical Center., Participants: We enrolled 20 stage I-IIIA lung cancer survivors who completed curative intent therapy in the prior 1-6 months. Eighty-five percent of participants had prior experience with telemedicine, but none with telerehabilitation or rehabilitation for lung cancer., Results: Participants viewed telemedicine as convenient, however impersonal and technologically challenging, with most reporting low self-efficacy in their ability to use technology. Most reported little to no knowledge of the potential benefits of specific exercise training regimens, including those directed towards reducing dyspnoea, fatigue or falls. If they were to design their own telerehabilitation programme, participants had a predominant preference for live and one-on-one interaction with a therapist, to enhance therapeutic relationship and ensure correct learning of the training techniques. Most participants had trouble stating their explicit health goals, with many having questions or concerns about their lung cancer status. Some wanted better control of symptoms and functional challenges or engage in healthful behaviours., Conclusions: Features of telerehabilitation interventions for lung cancer survivors following curative intent therapy may need to include strategies to improve self-efficacy and skills with telemedicine. Education to improve knowledge of the benefits of rehabilitation and exercise training, with alignment to patient-formulated goals, may increase uptake. Exercise training with live and one-on-one therapist interaction may enhance learning, adherence, and completion. Future work should determine how to incorporate these features into telerehabilitation., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Providing palliative care to patients with chronic obstructive pulmonary disease (COPD) is a priority. Spirometry demonstrating airflow limitation is a diagnostic test for COPD and a common inclusion criterion for palliative care research. However, requiring spirometry with airflow limitation may exclude appropriate patients unable to complete spirometry, or patients with preserved-ratio impaired spirometry and symptoms or imaging consistent with COPD., Measures: To determine differences in quality of life (QOL) and symptoms between patients with COPD identified based on International Classification of Diseases (ICD) codes and spirometry with airflow limitation compared to ICD codes only., Intervention: Patients with COPD enrolled in a palliative care trial were included. Patients were at high risk of hospitalization and death and reported poor QOL. Baseline measures of QOL (Functional Assessment of Cancer Therapy-General (FACT-G), the Clinical COPD Questionnaire, and Quality of Life at the End of Life), and symptoms (Patient Health Questionnaire-8, Generalized Anxiety Disorder-7, fatigue, Insomnia Severity Index) were compared., Outcomes: Two hundred eight patients with COPD were predominantly male, White, and average age was 68.4. Between patients with ICD codes and spirometry with airflow limitation compared to patients with ICD codes only, there were no significant differences in FACT-G (59.0 vs. 55.0, P = 0.33), other measures of QOL, or symptoms between groups., Conclusion: These results imply that spirometry may not need to be a requirement for inclusion into palliative care research or clinical care for patients with poor quality of life and at high risk for adverse outcomes., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. All rights reserved.)

Background: Heart failure is characterized by physical and emotional symptoms and decreased quality of life (QoL). Palliative care can reduce burdens of serious illness but often is limited to inpatient or academic settings., Objectives: To develop and test the Primary Education for Nurses in Palliative care-HF (PENPal-HF) intervention, training outpatient cardiology nurses to address symptom burden, patient priorities for care and QoL, and advance care planning as part of quarterly HF visits., Methods: We conducted a pilot randomized clinical trial for adults with NYHA Stage III or IV HF and ≥ 2 hospitalizations in the past 12 months, recruited from a community-based cardiology clinic. Participants were randomized 2:1, PENPal-HF plus usual care versus usual care alone. Primary outcomes were feasibility and acceptability., Results: We randomized 30 adults with Stage III HF - 20 to PENPal-HF and 10 to usual care. Most in the intervention group (71%) and in the control group (62%) completed the study through the final outcome assessment in week 56; 5 participants died. Of 20 participants in the intervention, 14 (70%) remained in the study through the end of intervention visits; 11 (55%) completed all visits. Most intervention participants (93.75%) agreed or strongly agreed that they were satisfied with their care, and 87.5% agreed or strongly agreed that all people with HF should receive the intervention. Most intervention group participants (93.75%) reported a perceived improvement in physical symptoms, mood, and/or QoL., Conclusions: This pilot study suggests that nurse-led primary palliative care in outpatient cardiology settings is promising. Research is warranted to determine efficacy and effectiveness., Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests. Dio Kavalieratos reports financial support was provided by National Heart Lung and Blood Institute. Dio Kavalieratos reports a relationship with Cystic Fibrosis Foundation that includes: funding grants. Larry Allen reports a relationship with American Heart Association Inc that includes: funding grants. Larry Allen reports a relationship with National Institutes of Health that includes: funding grants. Larry Allen reports a relationship with Patient-Centered Outcomes Research Institute that includes: funding grants. Larry Allen reports a relationship with Boston Scientific Corp that includes: consulting or advisory. Larry Allen reports a relationship with Cytokinetics Inc that includes: consulting or advisory. Larry Allen reports a relationship with Novartis that includes: consulting or advisory. Larry Allen reports a relationship with UptoDate Inc that includes: consulting or advisory. Larry Allen reports a relationship with WCG that includes: consulting or advisory, (Copyright © 2022 Elsevier Inc. All rights reserved.)

Background: Understanding patients' preferred role in decision making can improve patient-centered care. This study aimed to determine change and the predictors of change in preferred decision-making roles over time in patients with heart failure., Methods and Results: During the CASA (Collaborative Care to Alleviate Symptoms and Adjust to Illness) trial, patients' preferred roles in decision making were measured using the Control Preferences Scale (range 1-5; higher = less active; n = 312) at 4 timepoints over 1 year. The effect of the CASA intervention on preferred decision-making roles was tested using generalized linear mixed models. Whether preferences changed over time in the whole population was determined using linear regression. Demographic and health-related factors were examined as predictors of change using multiple linear regression. At baseline, most participants preferred active (score 1-2, 37.2%) or collaborative (score 3, 44.9%) roles. The CASA intervention did not influence preferred decision-making roles (P > 0.1). Preferences significantly changed over 1 year (P < 0.01), becoming more active (82.1%, 84.2%, 89.0%, 90.1% active/collaborative at each timepoint). Among all models and covariates, there were no significant predictors of change (P > 0.1)., Conclusions: Patients' preferred roles in decision making change over time, but changes are not well predicted. Clinicians should frequently and directly communicate with patients about their preferred decision-making roles., (Published by Elsevier Inc.)

Background: Dyspnea is a common and debilitating symptom that affects many different patient populations. Dyspnea measures should assess multiple domains., Objective: To evaluate the reliability, validity, and responsiveness of an ultra-brief, multi-dimensional dyspnea measure., Design: We adapted the DEG from the PEG, a valid 3-item pain measure, to assess average dyspnea intensity (D), interference with enjoyment of life (E), and dyspnea burden with general activity (G)., Participants: We used data from a multi-site randomized clinical trial among outpatients with heart failure., Main Measures: We evaluated reliability (Cronbach's alpha), concurrent validity with the Memorial-Symptom-Assessment-Scale (MSAS) shortness-of-breath distress-orbothersome item and 7-item Generalized-Anxiety-Disorder (GAD-7) scale, knowngroups validity with New-York-Heart-Association-Functional-Classification (NYHA) 1-2 or 3-4 and presence or absence of comorbid chronic obstructive pulmonary disease (COPD), responsiveness with the MSAS item as an anchor, and calculated a minimal clinically important difference (MCID) using distribution methods., Key Results: Among 312 participants, the DEG was reliable (Cronbach's alpha 0.92). The mean (standard deviation) DEG score was 5.26 (2.36) (range 0-10) points. DEG scores correlated strongly with the MSAS shortness of breath distress-or-bothersome item (r=0.66) and moderately with GAD-7 categories (ρ=0.36). DEG scores were statistically significantly lower among patients with NYHA 1-2 compared to 3-4 [mean difference (standard error): 1.22 (0.27) points, p<0.01], and those without compared to with comorbid COPD [0.87 (0.27) points, p<0.01]. The DEG was highly sensitive to change, with MCID of 0.59-1.34 points, or 11-25% change., Conclusions: The novel, ultra-brief DEG measure is reliable, valid, and highly responsive. Future studies should evaluate the DEG's sensitivity to interventions, use anchor-based methods to triangulate MCID estimates, and determine its prognostic usefulness among patients with chronic cardiopulmonary and other diseases., (© 2021. This is a U.S. government work and not under copyright protection in the U.S.; foreign copyright protection may apply.)

Context: The Life Sustaining Treatment Decision Initiative is a national effort by the Veterans Health Administration to ensure goals of care documentation occurs among all patients at high risk of life-threatening events., Objectives: Examine likelihood to receive goals of care documentation and explore associations between documentation and perceived patient care experience at the individual and site level., Methods: Retrospective, quality improvement analysis of initiative pilot data from four geographically diverse Veterans Affairs (VA) sites (Fall 2014-Winter 2016) before national roll-out. Goals of care documentation according to gender, marital status, urban/rural status, race/ethnicity, age, serious health condition, and Care Assessment Needs scores. Association between goals of care documentation and perceived patient care experience analyzed based on Bereaved Family Survey outcomes of overall care, communication, and support., Results: Veterans were more likely to have goals of care documentation if widowed, urban residents, and of white race. Patients older than 65-years and those with a higher Care Assessment Needs score were twice as likely as a frail patient to have goals of care documented. One pilot site demonstrated a positive association between documentation and perceived support. Pilot site was a statistically significant predictor of the occurrence of goals of care documentation and Bereaved Family Survey scores., Conclusion: Older and seriously ill patients were most likely to have goals of care documented. Association between a documented goals of care conversation and perceived patient care experience were largely unsupported. Site-level largely contributed to understanding the likelihood of documentation and care experience., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Primary palliative care is needed to meet the complex needs of patients with serious illness and their families. However, patient perceptions of primary palliative care are not well understood and can inform subsequent primary palliative care interventions and implementation. Objective: Elicit the patient perspective on a primary palliative care intervention, Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA), from patient perspectives. Design: Qualitative study using patient interviews and two methods of triangulation. Setting/Subjects: Between July 2014 and September 2015, we interviewed 45 patients who participated in the intervention in a Veterans Affairs (VA) (primary site), academic, and urban safety-net health system in the United States. Main Measures: Participants were asked about what was most and least helpful, how the intervention affected participants' lives, and what should be changed about the intervention. Data were analyzed using a general inductive approach. To enhance validity of the results, we triangulated the findings from patient interviews, reviews of care coordinator documentation, and interprofessional palliative care providers. Results: The six themes identified that primary care intervention: (1) Cared for My Psychosocial Needs, (2) Encouraged Self-Management, (3) Medication Recommendations Worked, (4) Facilitated Goal Attainment, (5) Team was Beneficial, and (6) Good Visit Timing. Conclusions: Participants experienced benefits from the primary palliative care intervention and attributed these benefits to individualized assessment and support, facilitation of skill building and self-management, and oversight from an interprofessional care team. Future primary palliative care interventions may benefit from targeting these specific patient-valued processes.

Objective: The number of lung cancer survivors is increasing along with advances in screening, diagnosis, and treatment. Following curative intent therapy, many lung cancer survivors experience significant health-related quality of life (HRQL) impairments. We sought to identify potentially modifiable factors that contribute to the HRQL of these patients., Materials and Methods: In this cross-sectional observational study of disease-free, stage I-IIIA lung cancer survivors following curative intent therapy, we used a conceptual model to examine factors that included behavioral, objective functional and physiologic, self-rated function and symptom burden, specific comorbidities, and non-modifiable demographic and clinical lung cancer-related characteristics. We assessed HRQL using the valid and prognostic European Organization for Research and Treatment of Cancer Quality of Life (QoL) Core 30 global health/QoL subscale. We used univariable and multivariable linear regression modeling with backward elimination of potentially modifiable and non-modifiable factors, and interpreted clinically and statistically significant, consistent, and independent modifiable factors as meaningful., Results: Among 75 participants at a median of 12 months since treatment completion, the mean (standard deviation) C30 global health/QoL score was 62.7 (23.3) points (0-100 scale range). In multivariable analysis, with and without non-modifiable factors, we identified three clinically and statistically significant, consistent, and independent factors (unstandardized β range) associated with global health/QoL: 1) abnormal exercise-induced dyspnea (-9.23 to -10.0 points); 2) impaired self-rated role function (or inability to perform work or daily activities and pursuing leisure-time activities) (-12.6 to -16.4 points); and 3) abnormal insomnia (or trouble sleeping) (-12.6 to -16.4 points)., Conclusion: We identified meaningful modifiable factors associated with the HRQL of disease-free, stage I-IIIA lung cancer survivors following curative intent therapy. Interventions to improve the HRQL of these patients should aim to reduce exercise-induced dyspnea, improve role function - the ability to perform work and other daily including leisure-time activities, and control insomnia., (Published by Elsevier B.V.)

Objectives: Depression, pain, and fatigue are common and bothersome symptoms in heart failure, a serious illness in older adults. Understanding longitudinal pathways among depression, pain, and fatigue in heart failure could inform treatment and improve quality of life., Methods: We completed secondary, longitudinal data analyses of a sample of older adults with heart failure (baseline N  = 317). Bootstrapped mediation was used to examine two longitudinal models of pain and depression, with fatigue at 6-months as the mediator. The outcome variables were 12-month pain and depression., Results: Depressive symptoms were associated with new onset of pain symptoms; however, this association was mediated by fatigue. Pain was not associated with new depression or fatigue symptoms in this sample., Discussion: In patients with heart-failure, worsening pain symptoms appear to be directly related to levels of depression and fatigue. These findings demonstrate that depression and fatigue may be key to reducing pain symptoms in this population.

Background: There are few studies examining the usage and utility of patient portals among seriously ill and end-of-life populations and their caregivers. Objective: The aim of this study was to describe portal user characteristics among patients and their caregivers (proxy login) at two time points: (1) the 12 months following an electronic medical record flag for serious illness and (2) during the last 12 months of life. Methods: A retrospective cohort analysis of Kaiser Permanente Colorado (KPCO) patients with serious illness, as defined by Kaiser Permanente's prognostic algorithm, and their proxy caregivers was performed for the two time periods. Use was characterized as (1) the discrete number of days the portal was used and (2) the number of days that portal features were accessed. Differences in use by user characteristics were assessed. Results: Patients flagged for serious illness ( N  = 6129) were 70.4 ± 14.2 years of age, and used the portal on average 50.4 days. Patients ( N  = 6517) in the last year of life were 76.7 ± 13.7 years of age and used the portal on average 43 days. Caregiver proxy use of the portal was low in both cohorts. Patients who were older, female, non-White, and healthier were less likely to use the portal. Conclusions: In comparison with overall KPCO portal use and recent patient portal studies examining use patterns, patient portal use was high among patients flagged with serious illness and nearing the end of life. However, because use was associated with age, gender, and race, addressing barriers to portal adoption among underserved populations and caregiver proxies is key to better leveraging patient portal systems for palliative and end-of-life care.

Context: The Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp) is a 12-item measure of spiritual well-being in chronic illness originally developed in patients with cancer. The overall scale, a two-factor model (meaning/peace, faith), and a three-factor model (meaning, peace, faith) have been proposed for the FACIT-Sp, and consensus on the best factor structure has not been reached. In addition, the factor structure of the FACIT-Sp has not been considered in patients with heart failure., Objectives: To examine the factor structure of the FACIT-Sp in heart failure patients., Methods: A confirmatory factor analysis framework was used to test three competing models on 217 patients with heart failure using data from the CASA (Collaborative Care to Alleviate Symptoms and Adjust to Illness) trial. The overall scale (single factor), two-factor, and three-factor models were tested using baseline data, then confirmed with 12-month data. Model modifications were made based on empirical inspection of baseline data and replicated using 12-month data. Cronbach's alpha and correlations with measures of quality of life and psychological health were examined., Results: All three models had strong factor loadings on all items except the negatively worded items. The two-factor and three-factor models fit reasonably well after modifications, but the single factor did not fit well (1/2/3-factor: RMSEA 0.14/0.09/0.06, CFI 0.85/0.93/0.97, SRMR 0.09/0.05/0.04). Internal consistency was sufficient for all factors., Conclusion: The two-factor and three-factor models were supported in heart failure patients. The three-factor model demonstrated better statistical fit but was not more interpretable., Key Message: This study investigated the factor structure of the FACIT-Sp in patients with heart failure. The two-factor and three-factor models were supported, but the single factor model was not. Negatively worded items did not perform well., (Published by Elsevier Inc.)

Objective: Advance care planning (ACP) is critically important for heart failure patients, yet important challenges exist. Group visits can be a helpful way to engage patients and caregivers in identifying values and preferences for future care in a resource-efficient way. We sought to evaluate the impact of group visits for ACP among older adults with heart failure and their caregivers on ACP-related outcomes., Methods: We conducted a mixed-methods pilot study evaluating the impact of an ACP group visit for older adults with heart failure and their caregivers on ACP-related outcomes including readiness and self-efficacy. The evidence-based PREPARE for Your Care video-based intervention was used to guide the group visits. Twenty patients and 10 caregivers attended one of the five 90-min group visits led by a trained facilitator. Group visit participants completed pre-, post-, and 1-month follow-up surveys using validated 5-point ACP readiness and self-efficacy scales. Qualitative feedback obtained within 3 days of a group visit was analyzed using a directed content analysis., Results: Patient participants had a median age of 78 years. Approximately half were female while caregiver participants were mostly female. Participants were predominantly white. Patient readiness scores improved significantly pre-to-post (+0.53; p = 0.002) but was not sustained at 1-month follow-up. Patient and caregiver self-efficacy showed some improvement pre-to-post but was also not sustained at follow-up. Interviews revealed positive impacts of group visits across the three themes: encouraging reviewing or revisiting prior ACP activities, motivating patients to take direct steps towards ACP, and serving as a "wake-up" call to action., Conclusions: Disease-focused group visits may have a short-term effect on ACP outcomes but ongoing touchpoints are likely necessary to sustain ACP over time. The results highlight a need for follow-up ACP conversations after a single group visit. Timing for follow-ups and the ideal person to follow-up ACP conversations needs to be explored., (© 2021 The American Geriatrics Society.)

Background: The United States Veterans Health Administration National Center for Ethics in Health Care implemented the Life-Sustaining Treatment Decisions Initiative throughout the Veterans Health Administration health care system in 2017. This policy encourages goals of care conversations, referring to conversations about patient's treatment and end-of-life wishes for life-sustaining treatments, among Veterans with serious illnesses. A key component of the initiative is expanding interdisciplinary provider roles in having goals of care conversations., Aim: Use organizational role theory to explore medical center experiences with expanding interdisciplinary roles in the implementation of a goals of care initiative., Design: A qualitative thematic analysis of semi-structured interviews., Setting/participants: Initial participants were recruited using purposive sampling of local medical center champions. Snowball sampling identified additional participants. Participants included thirty-one interdisciplinary providers from 12 geographically diverse initiative pilot and spread medical centers., Results: Five themes were identified. Expanding provider roles in goals of care conversations (1) involves organizational culture change; (2) is influenced by medical center leadership; (3) is supported by provider role readiness; (4) benefits from cross-disciplinary role agreement; and (5) can "overwhelm" providers., Conclusions: Organizational role theory is a helpful framework for exploring interdisciplinary roles in a goals of care initiative. Support and recognition of provider role expansion in goals of care conversations was important for the adoption of a goals of care initiative. Actionable strategies, including multi-level leadership support and the use of interdisciplinary champions, facilitate role change and have potential to strengthen uptake of a goals of care initiative.

Background: Caregivers to patients with heart failure (HF) may experience substantial burden in their roles, yet little is known about factors that exacerbate caregiver burden over time., Objectives: We test the moderating role of changes in caregivers' social support and patient-caregiver relationship mutuality in the association between HF patient functioning and caregiver burden., Methods: Data were analyzed using Stata 13.1 for 100 HF primary caregivers, the majority of whom were female (81%), living with the patient (87%), and married or partnered to the patient (70%). Patients reported on dyspnea, disability level, and symptom severity, and caregivers reported on patient-caregiver mutuality, social support, and perceived caregiver burden at both baseline and a 12-month follow-up., Results: Regression analyses using the Structural Equation Modeling framework revealed that declines in caregiver-patient mutuality over the 12 months of the study amplified the association between patient functioning (ie, dyspnea, symptom severity, and disability) and caregiver burden. Change in social support did not significantly moderate the association between any of the patient functioning variables and caregiver burden., Conclusions: Caregivers' relationships with their care recipient shape how they respond to and interpret the demands of caregiving, and relationships experiencing negative changes over time contribute to caregiver burden. Promoting and sustaining positive social relationships within the caregiver-patient dyad is thus a promising avenue for interventions aimed at reducing the burden experienced by caregivers to patients with HF., Competing Interests: The authors have no funding or conflicts of interest to disclose., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Palliative care-related postdoctoral training opportunities are critical to increase the quantity and quality of palliative care research. Objective: To describe the history, activities, challenges, and future goals of the National Postdoctoral Palliative Care Research Training Collaborative. Design: National web-based survey of participating program leaders. Measurements: Information about participating programs, trainees, challenges faced, and future goals. Results: Nine participating programs at academic institutions across the United States focus on diverse aspects of palliative care research. The majority of 73 current and former fellows are female (75%) and white (84%). In total, 38% of fellows ( n  = 28) have MD backgrounds, of whom less than half ( n  = 12) completed hospice and palliative medicine fellowships. An additional 38% of fellows ( n  = 28) have nursing PhD backgrounds and 23% ( n  = 17) have other diverse types of PhD backgrounds. Key challenges relate to recruiting diverse trainees, fostering a shared identity, effectively advocating for trainees, and securing funding. Future goals include expanding efforts to engage clinician and nonclinician scientists, fostering the pipeline of palliative care researchers through expanded mentorship of predoctoral and clinical trainees, increasing the number of postdoctoral palliative care training programs, and expanding funding support for career development grants. Conclusion: The National Postdoctoral Palliative Care Research Training Collaborative fills an important role in creating a community for palliative care research trainees and developing strategies to address shared challenges.

Rationale: Patients with chronic obstructive pulmonary disease (COPD) and anxiety or depression experience more symptoms and exacerbations than patients without these comorbidities. Failure to provide beneficial COPD therapies to appropriate patients (underuse) and provision of potentially harmful therapies to patients without an appropriate indication (overuse) could contribute to respiratory symptoms and exacerbations. Anxiety and depression are known to affect the provision of health services for other comorbid conditions; therefore, underuse or overuse of therapies may explain the increased risk of severe symptoms among these patients. Objectives: To determine whether diagnosed anxiety and depression, as well as significant anxiety and depression symptoms, are associated with underuse and overuse of appropriate COPD therapies. Methods: We analyzed data from a multicenter prospective cohort study of 2,376 participants (smokers and control subjects) enrolled between 2010 and 2015. We identified two subgroups of participants, one at risk for inhaled corticosteroid (ICS) overuse and one at risk for long-acting bronchodilator (LABD) underuse based on the 2011 Global Initiative for Chronic Obstructive Lung Disease statement. Our primary outcomes were self-reported overuse and underuse. Our primary exposures of interest were self-reported anxiety and depression and significant anxiety and depression symptoms. We adopted a propensity-score method with inverse probability of treatment weighting adjusting for differences in prevalence of confounders and performed inverse probability of treatment weighting logistic regression to evaluate all associations between the exposures and outcomes. Results: Among the 1,783 study participants with COPD confirmed by spirometry, 667 (37.4%) did not have an indication for ICS use, whereas 985 (55.2%) had an indication for LABD use. Twenty-five percent ( n  = 167) of patients reported ICS use, and 72% ( n  = 709) denied LABD use in each subgroup, respectively. Neither self-reported anxiety and depression nor significant anxiety and depression symptoms were associated with overuse or underuse. At least 50% of patients in both subgroups with significant symptoms of anxiety or depression did not report a preexisting mental health diagnosis. Conclusions: Underuse of LABDs and overuse of ICSs are common but are not associated with comorbid anxiety or depression diagnosis or symptoms. Approximately one-third of individuals with COPD experience anxiety or depression, and most are undiagnosed. There are significant opportunities to improve disease-specific and patient-centered treatment for individuals with COPD.

Context: The Veterans Health Administration (VA) National Center for Ethics in Healthcare implemented the Life-Sustaining Treatment Decisions Initiative, including policy and practice standards, clinician communication training, a documentation template, and central implementation support to foster advance care planning via goals-of-care conversations for seriously ill veterans in 2014, spreading nationally to other Veterans Health Affairs (VA) sites in 2017., Objectives: Our goal was to describe the range of early implementation experiences among the pilot sites, and compare them with spread sites that implemented LSTDI about two years later, identifying cross-site best practices and pitfalls., Methods: We conducted semistructured interviews with 32 key stakeholders from 12 sites to identify cross-site best practices and pitfalls related to implementation., Results: Three primary implementation themes emerged: organizational readiness for transformation, importance of champions, and time and resources needed to achieve implementation. Each theme's barriers and facilitators highlighted variability in success based on complexity in terms of vertical hierarchy and horizontal cross-role/cross-clinic relationships., Conclusion: Learning health care systems need multilevel interdisciplinary implementation approaches to support communication about serious illness, from broad-based system-level training and education to build communication skills, to focusing on characteristics of successful individual champions who listen to critics and are tenacious in addressing concerns., (Published by Elsevier Inc.)

Background: Physical activity and exercise improve function, symptom control, and health-related quality of life (QoL) for many cancer survivors; however, the evidence is limited and inconsistent in lung cancer. We examined the relationship between leisure-time physical activity (LTPA) and health-related QoL in a national sample of US lung cancer survivors., Methods: We conducted a cross-sectional study using the Centers for Disease Control and Prevention Behavioral Risk Factor Surveillance System. We defined LTPA as a self-report of engaging in any physical activity or exercise such as running, calisthenics, golf, gardening, or walking for exercise in the past 30 days, health-related QoL as the number of days of having poor physical or mental health in the past 30 days, and general health status. We analyzed using multivariable logistic regressions with 95% confidence intervals (CIs)., Results: Among 614 lung cancer survivors, 316 (51.5%) reported engaging in LTPA. The counts (and proportions) of participants who engaged in LTPA vs no LTPA were, respectively, 135 (42.7%) vs 63 (21.1%) for 0 days of poor physical health, 222 (70.3%) vs 174 (58.4%) for 0 days of poor mental health, and 158 (50.0%) vs 77 (25.8%) for good to excellent general health. In multivariable analyses, participating in LTPA was associated with odds ratios of 2.64 (95% CI = 1.76 to 3.96) and 1.43 (95% CI = 0.97 to 2.10) for 0 days of poor physical and mental health, respectively, and 2.61 (95% CI = 1.74 to 3.91) for good to excellent general health., Conclusions: Participating in LTPA was associated with improved health-related QoL. Interventions to promote LTPA and/or exercise-based rehabilitation may improve QoL among lung cancer survivors., (Published by Oxford University Press 2021.)

Background: Group visits have the potential to help patients identify their health care values and engage in the emotionally and cognitively challenging task of advance care planning (ACP) in a resource-efficient manner by providing a forum for social learning and social support., Objective: To evaluate the feasibility and acceptability of disease-specific group visits for patients with heart failure and their caregivers., Design: Feasibility trial of a 90-minute group visit held for 10 separate groups and led by a trained facilitator using the video-based PREPARE for Your Care ACP tool., Setting/subjects: Older adults with recent hospitalization for heart failure (n = 36; median age, 74 years) and their caregivers (n = 21)., Measurements: Pre- and post-visit surveys and a postvisit telephone interview assessing perceived value and acceptability; structured nonparticipant observations to assess process and feasibility., Results: Mean scores from the postgroup visit evaluation showed that participants reported that they felt comfortable discussing ACP in a group (4.59), understood the information covered (4.70), and were able to identify and clarify their health care values (4.43). Interview and observation data demonstrated that participants were able to identify and clarify their preferences by listening and learning from a diverse range of perspectives in the group and that the disease-focused nature of the group visit created a supportive space for participants to share their experiences., Conclusions: Disease-focused ACP group visits were feasible to conduct and acceptable to participants, underscoring their value as an efficient intervention to engage patients and caregivers in the otherwise time- and resource-intensive task of ACP., Competing Interests: Conflict of interest: None., (© Copyright 2021 by the American Board of Family Medicine.)

Context: Digital health offers innovative mechanisms to engage in palliative care, yet digital systems are typically designed for individual users, rather than integrating the patient's caregiving "social convoy" (i.e., family members, friends, neighbors, formal caregiving supports) to maximize benefit. As older adults with serious illness increasingly rely on the support of others, there is a need to foster effective integration of the social convoy in digitally supported palliative care., Objectives: Conduct a qualitative study examining patient, social convoy, and health care provider perspectives on digital health for palliative care to inform the design of future digital solutions for older adults with serious illness and their social convoy., Methods: Grounded theory approach using semi-structured interviews (N = 81) with interprofessional health care providers, older adults with serious illness, and their social convoy participants at home, clinic, or Zoom. Interviews were conducted using question guides relevant to the participant group and audio-recorded for verbatim transcription. Two coders lead the inductive analysis using open and axial coding., Results: Thematic results aligned with the human-centered design framework, which is a participatory approach to the design process that incorporates multiple user stakeholders to develop health solutions. The human-centered design process and corresponding theme included the following: 1) Empathy: Patient, Caregiver, and Provider Experience reports participants' experience with managing serious illness, caregiving, social support, and technology use. 2) Define: Reactions to Evidence-Based Care Concepts and Barriers illustrates participants' perspectives on the domains of palliative care ranging from symptom management to psychosocial-spiritual care. 3) Ideation: Desired Features reports participant recommendations for designing digital health tools for palliative care domains., Conclusion: Digital health provides an opportunity to expand the reach of geriatric palliative care interventions. This paper documents human-centered preferences of geriatric palliative care digital health to ensure technologies are relevant and meaningful to health care providers, patients, and the caregiving social convoy., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Many mobile health (mHealth) technologies exist for patients with heart failure (HF). However, HF mhealth lacks evidence of efficacy, caregiver involvement, and clinically useful real-time data., Objective: We aim to capture health care providers' perceived value of HF mHealth, particularly for pairing patient-caregiver-generated data with clinical intervention to inform the design of future HF mHealth., Methods: This study is a subanalysis of a larger qualitative study based on interviewing patients with HF, their caregivers, and health care providers. This analysis included interviews with health care providers (N=20), focusing on their perceived usefulness of HF mHealth tools and interventions., Results: A total of 5 themes emerged: (1) bio-psychosocial-spiritual monitoring, (2) use of sensors, (3) interoperability, (4) data sharing, and (5) usefulness of patient-reported outcomes in practice. Providers remain interested in mHealth technologies for HF patients and their caregivers. However, providers report being unconvinced of the clinical usefulness of robust real-time patient-reported outcomes., Conclusions: The use of assessments, sensors, and real-time data collection could provide value in patient care. Future research must continually explore how to maximize the utility of mHealth for HF patients, their caregivers, and health care providers., (©Jennifer Dickman Portz, Kelsey Lynett Ford, Kira Elsbernd, Christopher E Knoepke, Kelsey Flint, David B Bekelman, Rebecca S Boxer, Sheana Bull. Originally published in JMIR Cardio (http://cardio.jmir.org), 04.09.2020.)

Patient portals can play an innovative role in facilitating advanced care planning (ACP) and documenting advance directives (ADs) among older adults with multiple chronic conditions. The objective of this qualitative sub-study was to (1) understand older adults' use of an ACP patient portal section and (2) obtain user-design input on AD documentation features. Although some older adults may be reluctant, participants reported likely to use a portal for ADs with proper portal design and support.

Objectives: To identify patient perceptions of how and when palliative care (PC) could complement usual heart failure (HF) management. Background: Despite guidelines calling for the integration of PC into the management of HF, PC services remain underutilized by this population. Patient preferences regarding delivery of and triggers for PC are unknown. Setting/subjects: Individuals with New York Heart Association Class II-IV disease were recruited from inpatient and outpatient settings at an academic quaternary care hospital. Measurements: Participants completed semistructured interviews discussing perceptions, knowledge, and preferences regarding PC. They also addressed barriers and facilitators to PC delivery. Two investigators independently analyzed data using template analysis. Results: We interviewed 27 adults with HF (mean age 63, 85% white, 63% male, 30% Class II, 48% Class III, and 22% Class IV). Participants frequently conflated PC with hospice; once corrected, they expressed variable preferences for primary versus specialist services. Proponents of primary PC cited continuity in care, HF-specific expertise, convenience, and cost, whereas advocates for specialist care highlighted expertise in symptom management and caregiver support, reduced time constraints, and a comprehensive approach to care. Triggers for specialist PC focused on late-stage manifestations of disease such as loss of independence and absence of disease-directed therapies. Conclusions: Patients with HF demonstrated variable conceptions of PC and its relevance to their disease management. Although preferences for delivery model were based on a variety of logistical and relational factors, triggers for initiation remained focused on late-stage disease, suggesting that patients with HF may misconceive PC is an option of last resort.

Objective: Interventions are needed to improve mental health (ie, depression, anxiety) and palliative care (ie, symptoms, goals of care, and advance care planning) outcomes in Latino/as with advanced cancer., Methods: An interprofessional study team used the ecological validity model and a participatory approach to adapt an evidence-based counseling intervention for Latino/as and integrate the counseling intervention with an evidence-based patient navigator intervention. Next, a small pilot study was conducted to understand and improve the feasibility of the integrated puente para cuidar intervention., Results: Adaptations were made to language, literacy, and content of the counseling intervention, and video vignettes of the counseling case studies were produced on the recommendation of Latino/a stakeholders. Bicultural, bilingual patient navigators were used as "cultural brokers" between Latino/a patients and the counselor. The pilot study of puente para cuidar demonstrated feasibility based on participant perception of helpfulness and acceptability and nearing goal visit completion rates., Conclusions: A culturally adapted intervention to address mental health and palliative care needs in Latino/as with advanced cancer was developed from prior evidenced-based interventions using a cultural adaptation model and a participatory approach. The intervention is ready for effectiveness testing., (© 2019 John Wiley & Sons, Ltd.)

Background: Mobile health (mHealth) is a promising tool for improving health outcomes. However, the benefits of using mHealth in palliative care are under studied. Objective: As a first step to designing meaningful palliative care-specific mobile applications, this research explored provider perspectives regarding the utility of mHealth in palliative care. Design: A qualitative phenomenological study with semistructured interviews. Setting/Subjects: Providers from multiple disciplines working in palliative care settings at an academic medical center. Results: Thematic analysis resulted in five provider recommendations regarding the utility and design of palliative care-specific mHealth, including (i) thoughtfulness to language, context, and delivery when assessing palliative care needs; (ii) include tools for prognosis and advance care planning; (iii) tailor health and quality-of-life goals; (iv) emphasize supports for family and caregivers; and (v) consider technology abilities of older adults. Conclusions: Palliative care providers are enthusiastic about the use of mHealth to improve care coordination, facilitate communication, enhance symptom monitoring, and improve patient-family support. However, providers have reservations about mobile functionality and depersonalized assessment and care. Providers stress the utility of mHealth to facilitate palliative care rather than replace important multidisciplinary services.

Objective: In seriously ill cardiac patients, several psychotherapy efficacy studies demonstrate little to no reduction in depression or improvement in quality of life, and little is known about how to improve psychotherapies to best address the range of patient needs. An interpersonal and behavioral activation psychotherapy was a key component of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) multisite randomized clinical trial. Although depressive symptoms did improve in the CASA trial, questions remain about how best to tailor psychotherapies to the needs of seriously ill patient populations. The study objective was to describe psychosocial needs emerging during a clinical trial of a palliative care and interpersonal and behavioral activation psychotherapy intervention that were not specifically addressed by the psychotherapy., Method: During the CASA trial, patient needs were prospectively tracked by the psychotherapist in each visit note using an a priori code list. Preplanned analysis of study data using directed content analysis was conducted analyzing the a priori code list, which were collapsed by team consensus into larger themes. The frequency of each code and theme were calculated into a percentage of visits., Result: A total of 150 patients received one or more visits from the therapist and were included in the analysis. Participants screened positive for depressive disorder (47%), had poor heart failure-specific health status (mean Kansas City Cardiomyopathy Questionnaire score = 48.6; SD = 17.4), and multiple comorbidities (median 4.3). Common needs that emerged during the therapy included difficulty coping with fatigue (48%), pain (28%), and satisfaction issues with medical care (43%). The following broader themes emerged: social support (77% of sessions), unmet symptom needs (67%), healthcare navigation (48%), housing, legal, safety, and transportation (32%), and end of life (12%)., Significance of Results: Coping with chronic symptoms and case management needs commonly emerged during psychotherapy visits. Future psychotherapy interventions in seriously ill populations should consider the importance of coping with chronic symptoms and case management.

Aims: Patients with heart failure often have under-recognized symptoms, depression, anxiety, and poorer spiritual well-being ('QoL domains'). Ideally all patients should have heart failure-specific health status and quality of life (QoL) domains routinely evaluated; however, lack of time and resources are limiting in most clinical settings. Therefore, we aimed to evaluate whether heart failure-specific health status was associated with QoL domains and to identify a score warranting further evaluation of QoL domain deficits., Methods and Results: Participants (N = 314) enrolled in the Collaborative Care to Alleviate Symptoms and Adjust to Illness trial completed measures of heart failure-specific health status [Kansas City Cardiomyopathy Questionnaire, KCCQ (score 0-100, 0 = worst health status)], additional symptoms (Memorial Symptom Assessment Scale), depression (Patient Health Questionnaire-9), anxiety (Generalized Anxiety Disorder-7), and spiritual well-being (Facit-Sp) at baseline. Mean ± standard deviation (SD) KCCQ score was 46.9 ± 19.3, mean age was 65.5 ± 11.4, and 79% were male. Prevalence of QoL domain deficits ranged from 11% (nausea) to 47% (depression). Sensitivity/specificity of KCCQ for each QoL domain ranged from 20-40%/80-96% for KCCQ ≤ 25, 61-84%/48-62% for KCCQ ≤ 50, 84-97%/26-40% for KCCQ ≤ 60, and 96-100%/8-13% for KCCQ ≤ 75. Patients with KCCQ ≤ 60 had mean ± SD 4.5 ± 2.5 QoL domain deficits (maximum 12), vs. 1.6 ± 1.6 for KCCQ > 60 (P < 0.001). Similar results were seen for KCCQ ≤25 (6.6 ± 2.4 vs. 3.3 ± 2.4), KCCQ ≤ 50 (4.8 ± 2.6 vs. 2.5 ± 2) and KCCQ ≤ 75 (4.0 ± 2.6 vs. 1.0 ± 1.2) (all P < 00001)., Conclusion: KCCQ ≤ 60 had good sensitivity for each QoL domain deficit and for patients with at least one QoL domain deficit. Screening for QoL domain deficits should target patients with lower KCCQ scores based on a clinic's KCCQ score distribution and clinical resources for addressing QoL domain deficits., (Published on behalf of the European Society of Cardiology. All rights reserved. © The Author(s) 2019. For permissions, please email: journals.permissions@oup.com.)

Background: People living with chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD), and interstitial lung disease (ILD) suffer impaired quality of life due to burdensome symptoms and depression. The Advancing Symptom Alleviation with Palliative Treatment (ADAPT) trial aims to determine the effect of a multidisciplinary, team-based intervention on quality of life in people with these common diseases., Methods/design: The ADAPT trial is a two-site, patient-level randomized clinical trial that examines the effectiveness of the ADAPT intervention compared to usual care on patient-reported quality of life at 6 months in veterans with CHF, COPD or ILD with poor quality of life and increased risk for hospitalization or death. The ADAPT intervention involves a multidisciplinary team-a registered nurse, social worker, palliative care specialist, and primary care provider (with access to a pulmonologist and cardiologist)-who meet weekly to make recommendations and write orders for consideration by participants' individual primary care providers. The nurse and social worker interact with participants over six visits to identify and manage a primary bothersome symptom and complete a structured psychosocial intervention and advance care planning. The primary outcome is change in patient-reported quality of life at 6 months as measured by the Functional Assessment of Chronic Illness Therapy-General questionnaire. Secondary outcomes at 6 months include change in symptom distress, depression, anxiety, disease-specific quality of life hospitalizations, and advance care planning communication and documentation. Intervention implementation will be assessed using a mixed-methods approach including a qualitative assessment of participants' and intervention personnel experiences and a quantitative assessment of care delivery, resources, and cost., Discussion: The ADAPT trial studies an innovative intervention designed to improve quality of life for veterans with common, burdensome illnesses by targeting key underlying factors-symptoms and depression-that impair quality of life but persist despite disease-specific therapies. Leveraging the skills of affiliate health providers with physician supervision will extend the reach of palliative care and improve quality of life for those with advanced disease within routine outpatient care. The hybrid effectiveness/implementation design of the ADAPT trial will shorten the time to broader dissemination if effective and create avenues for future research., Trial Registration: ClinicalTrials.gov, NCT02713347 . Registered March 19, 2016.

Background: Although family technical support seems intuitive, there is very little research exploring this topic., Objective: The objective of this study was to conduct a subanalysis of data collected from a large-scale qualitative project regarding older adults' experiences in using health information technology. Specifically, the subanalysis explored older adults' experiences with technology support from family members to inform strategies for promoting older adults' engagement with new health technologies. Although the primary analysis of the original study was theoretically driven, this paper reports results from an inductive, open-coding analysis., Methods: This is a subanalysis of a major code identified unexpectedly from a qualitative study investigating older adults' use experience of a widespread health technology, the patient portal. A total of 24 older patients (≥65 years) with multiple chronic conditions (Charlson Comorbidity Index >2) participated in focus groups conducted at the patients' primary clinic. While conducting the primary theoretically driven analysis, coders utilized an open-coding approach to ensure important ideas not reflected in the theoretical code book were captured. Open coding resulted in 1 code: family support. This subanalysis further categorized family support by who provided tech support, how tech support was offered, and the opinions of older participants about receiving family tech support., Results: The participants were not specifically asked about family support, yet themes around family assistance and encouragement for technology emerged from every focus group. Participants repeatedly mentioned that they called their grandchildren and adult children if they needed help with technology. Participants also reported that family members experienced difficulty when teaching technology use. Family members struggled to explain simple technology tasks and were frustrated by the slow teaching process., Conclusions: The results suggest that older adults ask their family members, particularly grandchildren, to support them in the use of new technologies. However, family may experience difficulties in providing this support. Older adults will be increasingly expected to use health technologies, and family members may help with tech support. Providers and health systems should consider potential family support and engagement strategies to foster adoption and use among older patients., (©Jennifer Dickman Portz, Christine Fruhauf, Sheana Bull, Rebecca S Boxer, David B Bekelman, Alejandra Casillas, Kathy Gleason, Elizabeth A Bayliss. Originally published in JMIR Aging (http://aging.jmir.org), 06.06.2019.)

Background: Although cardiology organizations recommend early introduction of palliative care for patients with heart failure (HF), integration has remained challenging, particularly in patients with cardiac devices such as cardiac implantable electronic devices and left ventricular assist devices. Study authors suggest that patients often have limited and erroneous understanding of these devices and their implications for future care., Objective: The aim of this study was to assess perceptions of cardiac devices in patients with HF and how these perceptions impacted advance care planning and future expectations., Methods: This study used qualitative semistructured interviews with 18 community-dwelling patients with New York Heart Association stage II to IV HF., Results: We interviewed 18 patients (mean ejection fraction, 38%; mean age, 64 years; 33% female; 83% white; 39% New York Heart Association class II, 39% class III, and 22% class IV). All had a cardiac implantable electronic device (6% permanent pacemaker, 56% implantable cardioverter-defibrillator, 28% biventricular implantable cardioverter-defibrillator); 11% had left ventricular assist devices. Patients with devices frequently misunderstood the impact of their device on cardiac function. A majority expressed the belief that the device would forestall further deterioration, regardless of whether this was the case. This anticipation of stability was often accompanied by the expectation that emerging technologies would continue to preempt decline. Citing this faith in technology, these patients frequently saw limited value in advance care planning., Conclusions: In our sample, patients with cardiac devices overestimated the impact of their devices on preventing disease progression and death and deprioritized advance care planning as a result.

Background: Patient portals offer modern digital tools for older adults with multiple chronic conditions (MCC) to engage in their health management. However, there are barriers to portal adoption among older adults. Understanding portal user interface and user experience (UI and UX) preferences of older adults with MCC may improve the accessibility, acceptability, and adoption of patient portals., Objective: The aim of this study was to use the Technology Acceptance Model (TAM) as a framework for qualitatively describing the UI and UX, intent to use, and use behaviors among older patients with MCC., Methods: We carried out a qualitative descriptive study of Kaiser Permanente Colorado's established patient portal, My Health Manager. Older patients (N=24; mean 78.41 (SD 5.4) years) with MCC participated in focus groups. Stratified random sampling was used to maximize age and experience with the portal among participants. The semistructured focus groups used a combination of discussion and think-aloud strategies. A total of 2 coders led the theoretically driven analysis based on the TAM to determine themes related to use behavior, portal usefulness and ease of use, and intent to use., Results: Portal users commonly used email, pharmacy, and lab results sections of the portal. Although, generally, the portal was seen to be easy to use, simple, and quick, challenges related to log-ins, UI design (color and font), and specific features were identified. Such challenges inhibited participants' intent to use the portal entirely or specific features. Participants indicated that the portal improved patient-provider communication, saved time and money, and provided relevant health information. Participants intended to use features that were beneficial to their health management and easy to use., Conclusions: Older adults are interested in using patient portals and are already taking advantage of the features available to them. We have the opportunity to better engage older adults in portal use but need to pay close attention to key considerations promoting usefulness and ease of use., (©Jennifer Dickman Portz, Elizabeth A Bayliss, Sheana Bull, Rebecca S Boxer, David B Bekelman, Kathy Gleason, Sara Czaja. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 08.04.2019.)