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Purpose Values are critical to how individuals make decisions and cope, yet the values of heart failure (HF) patients and their family caregivers (FCGs) remain understudied. We sought to report the state of the science on how values are discussed, reflected upon, and acted on by patients with HF, their FCGs, or both related to health-related decision making and coping. Method A scoping review was conducted of empirical studies using the following keywords: “heart failure,” “values,” “decision-making,” and “coping.” PubMed, PsycINFO, and Scopus were searched from inception to June 2022 in English. Included articles reported values as a key finding (outcome/theme) in their abstract. Results Of 448 articles screened for eligibility, 16 met the inclusion criteria. Twelve articles reported findings addressing patient values, 3 addressed patient and FCG values, and 1 addressed FCG values. Values were reported to influence patient self-care behaviors and left ventricular assist device (LVAD) implantation decisions, although their prioritization varied across time and contexts. When prioritized values conflicted with recommended self-care activities, some patients modified their approach to achieving the value. Others modified or abandoned tasks in favor of the value and accompanying goals. Low motivation and alignment between unhealthy behaviors and values often led to nonadherent decisions. Five of 8 articles focusing on cardiac devices reported patient survival as the most prioritized value during implantation decisions. FCG values were rarely reported or evaluated separately from patient values. Patients leveraged several coping strategies, although the processes through which values affected coping was not described. Conclusions Prioritized values influenced HF-related decisions, including self-care and LVAD implantation. While several articles reported on coping and values, none described processes through which values affect coping, which highlights a research gap. Highlights Family caregiver values were rarely reported or evaluated separately from patient values, highlighting a gap in the literature.

To assess the interaction of health literacy and a shared intervention concerning decision quality in patients considering the destination therapy of left ventricular assist device (DT LVAD) implantation.Evidence is limited for the use of decision aids by patients with low health literacy and with life-threatening illnesses.We performed a secondary analysis of the DECIDE-LVAD Trial, a randomized, stepped-wedge trial conducted from 2015-2017 in the United States. The intervention was the integration of a formal shared decision-making intervention. The main outcome was decision quality as measured by LVAD knowledge and values-treatment concordance. Two components of health literacy were measured by the Rapid Estimate of Adult Literacy in Medicine and Subjective Numeracy Scale instruments.Of the 228 patients studied, 44% (n = 101) received the formal shared decision-making intervention, and half had low health literacy. Knowledge of LVAD improved for patients with low literacy in the intervention group compared to the control group: the difference in increased knowledge score was 10.6%; P = 0.04. Values-treatment concordance improved significantly for patients with low literacy in the intervention group compared to the control group: the median improvement in values-treatment correlation coefficient was 0.43; P = 0.03. These benefits were not significant in those with adequate literacy (n = 171). Patients with low numeracy (n = 94) did not show significant improvements in either measure of decision quality, and patients with adequate numeracy (n = 134) showed improvement in LVAD knowledge but not in values-treatment concordance.Patients considering DT LVAD implantation with low literacy showed improvement in decision quality after the integration of a shared decision-making intervention.

Psychosocial distress screening, mandated by the American College Surgeons’ Commission on Cancer, continues to be implemented across cancer centers nationwide. Although measuring distress is critical to identifying patients who may benefit from additional support, several studies suggest that distress screening may not actually increase patients’ utilization of psychosocial services. While various investigators have identified barriers that may impede effective implementation of distress screening, we posit that patients’ intrinsic motivation, which we term patients’ willingness, may be the biggest predictor for whether cancer patients choose to engage with psychosocial services. In this commentary, we define patient willingness towards psychosocial services as a novel construct, distinct from the intention toward a certain behavior described across pre-existing models of health behavior change. Further, we offer a critical perspective of models of intervention design that focus on acceptability and feasibility as preliminary outcomes thought to encompass the willingness construct described herein. Finally, we summarize several health service models that successfully integrate psychosocial services alongside routine oncology care. Overall, we present an innovative model that acknowledges barriers and facilitators and underscores the critical role of willingness in health behavior change. Consideration of patients’ willingness toward psychosocial care will move the field of psychosocial oncology forward in clinical practice, policy initiatives, and study design.

BACKGROUND: Many older adults face the difficult decision of when to stop driving. We sought to test whether an online driving decision aid (DDA) would improve decision quality. METHODS: This prospective two-arm randomized trial enrolled English-speaking licensed drivers (age ≥70 years) without significant cognitive impairment but with ≥1 diagnosis associated with increased likelihood of driving cessation); all participants received primary care in clinics associated with study sites in three states. The intervention was the online Healthwise® DDA for older adults addressing “Is it time to stop driving?”; control was web-based information for older drivers only. The primary outcome was decision conflict as estimated by the Decisional Conflict Scale (DCS; lower scores indicate higher quality). Secondary outcomes were knowledge and decision self-efficacy about driving decisions. We examined post-randomization differences in primary and secondary outcomes by study arm using generalized linear mixed-effects models with adjustment for site and pre-randomization scores. RESULTS: Among 301 participants (mean age: 77.1 years), 51.2% identified as female and the majority as non-Hispanic (99.0%) and White (95.3%); 98.0% lived in an urban area. Participant characteristics were similar by study arm but differed across sites. Intervention participants had a lower mean DCS score (12.3 DDA vs 15.2 control; adjusted mean ratio [AMR] 0.76, 95%CI 0.61–0.95; p=0.017). Intervention participants had higher mean knowledge scores (88.9 DDA vs 79.9 control; OR 1.13, 95%CI 1.01–1.27, p=0.038); there was no difference between groups in self-efficacy scores. The DDA had high acceptability; 86.9% of those who viewed it said they would recommend it to others in similar situations. CONCLUSIONS: The online Healthwise® DDA decreased decision conflict and increased knowledge in this sample of English-speaking, older adults without significant cognitive impairment, although most chose to continue driving. Use of such resources in clinical or community settings may support older adults as they transition from driving to other forms of mobility. TRIAL REGISTRATION: ClinicalTrials.gov identifier “Advancing Understanding of Transportation Options (AUTO)” NCT04141891.

Context Heart failure (HF) and chronic kidney disease (CKD) are associated with high morbidity and mortality, especially in combination, yet little is known about the impact of these conditions together on end-of-life care. Objectives Compare end-of-life care and advance care planning (ACP) documentation among patients with both HF and CKD to those with either condition. Methods We conducted a retrospective analysis of deceased patients (2010-2017) with HF and CKD (n = 1673), HF without CKD (n = 2671), and CKD without HF (n = 1706), excluding patients with cancer or dementia. We compared hospitalizations and intensive care unit (ICU) admissions in the last 30 days of life, hospital deaths, and ACP documentation >30 days before death. Results 39% of patients with HF and CKD were hospitalized and 33% were admitted to the ICU in the last 30 days vs. 30% and 28%, respectively, for HF, and 26% and 23% for CKD. Compared to patients with both conditions, those with only 1 were less likely to be admitted to the hospital [HF: adjusted odds ratio (aOR) 0.72, 95%CI 0.63-0.83; CKD: aOR 0.63, 95%CI 0.53-0.75] and ICU (HF: aOR 0.83, 95%CI 0.71-0.94; CKD: aOR 0.68, 95%CI 0.56-0.80) and less likely to have ACP documentation (aOR 0.53, 95%CI 0.47-0.61 and aOR 0.70, 95%CI 0.60-0.81). Conclusions Decedents with both HF and CKD had more ACP documentation and received more intensive end-of-life care than those with only 1 condition. These findings suggest that patients with co-existing HF and CKD may benefit from interventions to ensure care received aligns with their goals.

OBJECTIVES Availability of long-term acute care hospitals has been associated with hospital discharge practices. It is unclear if long-term acute care hospital availability can influence patient care decisions. We sought to determine the association of long-term acute care hospital availability at different hospitals with the likelihood of tracheostomy. DESIGN Retrospective cohort study. SETTING California Patient Discharge Database, 2016-2018. PATIENTS Adult patients receiving mechanical ventilation for respiratory failure. INTERVENTIONS None. MEASUREMENTS AND MAIN RESULTS Using the California Patient Discharge Database 2016-2018, we identified all mechanically ventilated patients and those who received tracheostomy. We determine the association between tracheostomy and the distance between each hospital and the nearest long-term acute care hospital and the number of long-term acute care hospital beds within 20 miles of each hospital. Among 281,502 hospitalizations where a patient received mechanical ventilation, 22,899 (8.1%) received a tracheostomy. Patients admitted to a hospital closer to a long-term acute care hospital compared with those furthest from a long-term acute care hospital had 38.9% (95% CI, 33.3-44.6%) higher odds of tracheostomy (closest hospitals 8.7% vs furthest hospitals 6.3%, adjusted odds ratio = 1.65; 95% CI, 1.40-1.95). Patients had a 32.4% (95% CI, 27.6-37.3%) higher risk of tracheostomy when admitted to a hospital with more long-term acute care hospital beds in the immediate vicinity (most long-term acute care hospital beds within 20 miles 8.9% vs fewest long-term acute care hospital beds 6.7%, adjusted odds ratio = 1.54; 95% CI, 1.31-1.80). Distance to the nearest long-term acute care hospital was inversely correlated with hospital risk-adjusted tracheostomy rates (ρ = -0.25; p < 0.0001). The number of long-term acute care hospital beds within 20 miles was positively correlated with hospital risk-adjusted tracheostomy rates (ρ = 0.22; p < 0.0001). CONCLUSIONS Proximity and availability of long-term acute care hospital beds were associated with patient odds of tracheostomy and hospital tracheostomy practices. These findings suggest a hospital effect on tracheostomy decision-making over and above patient case-mix. Future studies focusing on shared decision-making for tracheostomy are needed to ensure goal-concordant care for prolonged mechanical ventilation.

ImportanceOnly modest attention has been paid to the contributions of social determinants of health to atrial fibrillation (AF) risk factors, diagnosis, symptoms, management, and outcomes. The diagnosis of AF provides unique challenges exacerbated by the arrhythmia’s often paroxysmal nature and individuals’ disparate access to health care and technologies that facilitate detection. Social determinants of health affect access to care and management decisions for AF, increasing the likelihood of adverse outcomes among individuals who experience systemic disadvantages. Developing effective approaches to address modifiable social determinants of health requires research to eliminate the substantive inequities in health care delivery and outcomes in AF.ObservationsThe National Heart, Lung, and Blood Institute convened an expert panel to identify major knowledge gaps and research opportunities in the field of social determinants of AF. The workshop addressed the following social determinants: (1) socioeconomic status and access to care; (2) health literacy; (3) race, ethnicity, and racism; (4) sex and gender; (5) shared decision-making in systemically disadvantaged populations; and (6) place, including rurality, neighborhood, and community. Many individuals with AF have multiple adverse social determinants, which may cluster in the individual and in systemically disadvantaged places (eg, rural locations, urban neighborhoods). Cumulative disadvantages may accumulate over the life course and contribute to inequities in the diagnosis, management, and outcomes in AF.Conclusions and RelevanceWorkshop participants identified multiple critical research questions and approaches to catalyze social determinants of health research that address the distinctive aspects of AF. The long-term aspiration of this work is to eradicate the substantive inequities in AF diagnosis, management, and outcomes across populations.

BACKGROUND Firearm safety among individuals with Alzheimer disease and related dementias (ADRD) is an underdiscussed and underresearched concern in the United States, especially given the growing population of community-dwelling adults with ADRD. The “Safety in Dementia” (SiD) web-based decision aid was developed to support caregivers in addressing firearm access; the efficacy of SiD is unknown. OBJECTIVE Through the SiD decision aid, the Safe at Home (S@H) study aims to support caregivers in making decisions about home safety that align with their goals and values, and behaviors regarding firearm access for persons with ADRD and firearm access. METHODS The S@H study is a 2-armed randomized controlled trial to test the effect of the SiD decision aid on caregivers of community-dwelling adults with ADRD who have firearm access. S@H aims to recruit 500 ADRD caregivers (age ≥18 years, fluent in English or Spanish, and in the United States) through online or social media advertisements and through relevant organizations. Participants are randomized to view SiD or a control website at their own pace; all participants complete web-based questionnaires at baseline, 2 weeks, 2 months, and 6 months. The primary outcome is immediate preparation for decision-making; secondary outcomes include longitudinal decision outcomes and self-reported modifications to firearm access. The relative reach and effectiveness of each recruitment method (online/social media and through relevant organizations) will be assessed by examining differences in caregiver participation, retention rates, and relative cost. RESULTS The study enrollment began in May 2022. As of December 2022, a total of 117 participants had enrolled. CONCLUSIONS The S@H study is the first randomized trial of a firearm safety decision aid for ADRD caregivers. The results from this study will inform how best to support caregivers in decision-making regarding firearm safety. Further, results may guide approaches for recruiting caregivers and for dissemination of resources. CLINICALTRIAL ClinicalTrials.gov NCT05173922; https://clinicaltrials.gov/ct2/show/NCT05173922 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/43702

Background Patient-centered care includes matching treatments to patient values and preferences. This assumes clarity and consistency of values and preferences relevant to major medical decisions. We sought to describe stability of patient-reported values regarding aggressiveness of care and preferences for left ventricular assist devices (LVADs) for advanced heart failure. Methods and Results We conducted a secondary analysis of patients undergoing LVAD evaluation at 6 US centers. Surveys at baseline, 1 month, and 6 months included a single 10-point scale on the value of aggressive care (score 1 = “do everything,” 10 = “live with whatever time I have left”) and treatment preference (LVAD, unsure, no LVAD). Data were captured for 232 patients, of whom 196 were ultimately deemed medically eligible for LVAD, and 161 were surgically implanted by 1 month. Values at baseline favored aggressive care (mean [SD], 2.49 [2.63]), trending toward less aggressive over time (1 month, 2.63 [2.05]; 6 months, 3.22 [2.70]). Between baseline and 1 month, values scores changed by ≥2 points in 28% (50/176), as did treatment preferences for 18% (29/161) of patients. Values score changes over time were associated with lower illness acceptance, depression, and eventual LVAD ineligibility. Treatment preference change was associated with values score change. Conclusion Most patients considering LVAD were stable in their values and treatment preferences. This stability, as well as the association between unstable treatment preferences and changes to stated values, highlighted the clinical utility of the values scale of aggressiveness. However, a substantial minority reported significant changes over time that may complicate the process of shared decision making. Improved methods to elicit and clarify values, including support to those with depression and low illness acceptance, is critical for patient-centered care. [Box: see text]

This study was designed to: (1) characterize longitudinal patient-reported outcomes (PROs) between breast cancer patients undergoing lumpectomy and mastectomy and (2) compare return to baseline scores at 3 months and 6 months postoperatively. Newly diagnosed breast cancer patients seen at an academic breast center between June 2019 and February 2021 were invited to participate in longitudinal PRO surveys at their initial clinic visit. If willing to participate, patients were emailed the validated BREAST-Q™ questionnaire at the initial clinic visit (baseline), 2 weeks after surgery, and then every 3 months for the first year. We used linear mixed models to estimate the differences in slopes over time between lumpectomy and mastectomy for each PRO measure. Pearson’s Chi-square tests with Yates’ continuity correction were used to compare proportions of patients who return to baseline PRO scores. P < 0.05 was considered significant. Of 164 patients invited to participate, 100 (61%) completed a baseline survey and were included in analyses. Mastectomy patients had significantly greater decreases in breast satisfaction (P = 0.002), psychosocial well-being (P < 0.0001), and sexual well-being (P < 0.0001) over time compared with lumpectomy patients. Both surgical groups reported a decrease in physical well-being, although the decline was more significant in lumpectomy patients (P = 0.005). At 3 months and 6 months after surgery, significantly larger proportions of lumpectomy patients returned to their baseline breast satisfaction, psychosocial well-being, and physical well-being compared with mastectomy patients. Understanding how outcomes important to patients change over the care continuum can provide opportunities for early intervention and may prevent debilitating long-term morbidities of treatment.

Rationale: Clinical critical care research often hinges on surrogate informed consent, as patients commonly lack decision-making capacity because of their acute illness. The surrogate informed consent process has been identified as having flaws and needing improvement. A better understanding of surrogates' perspectives is required to understand and address these shortcomings and thereby improve this process. Objectives: To explore the perspectives of surrogate decision makers of critically ill, mechanically ventilated patients about being approached about having their loved one participate in hypothetical research studies. Methods: We performed semistructured qualitative interviews of surrogate decision makers of critically ill, mechanically ventilated patients, exploring their decisional needs surrounding participation in research. These interviews were recorded and transcribed verbatim. A thematic analysis of transcripts was performed with an iterative group framework using a mixed inductive and deductive approach. Results: A sample of 21 surrogate decision makers were interviewed. Thematic saturation was achieved by the consensus of the investigators. We identified trust as a unifying domain for the themes that emerged through the analytic process. Embedded within the domain of trust, two central themes became apparent: knowledge-based trust and context-based trust. Knowledge-based trust includes subthemes of logistics, accountability, and mutual respect, whereas context-based trust includes trust in the individual clinicians and trust in the hospital system. Conclusions: Our findings highlight the nuanced layers of trust central to the surrogate informed consent process. To enhance the surrogate informed consent process for participation in critical care research studies, it is crucial that researchers recognize the inherent importance of trust to ensure an effective informed consent process.

Despite efforts to enhance serious illness communication, patients with advanced heart failure (HF) lack prognostic understanding.To determine rate of concordance between HF patients' estimation of their prognosis and their physician's estimate of the patient's prognosis, and to compare patient characteristics associated with concordance.Cross-sectional analysis of a cluster randomized controlled trial with 24-month follow-up and analysis completed on 09/01/2020. Patients were enrolled in inpatient and outpatient settings between September 2011 to February 2016 and data collection continued until the last quarter of 2017.Six teaching hospitals in the U.S.Patients with advanced HF and implantable cardioverter defibrillators (ICDs) at high risk of death. Of 537 patients in the parent study, 407 had complete data for this analysis.A multi-component communication intervention on conversations between HF clinicians and their patients regarding ICD deactivation and advance care planning.Patient self-report of prognosis and physician response to the "surprise question" of 12-month prognosis. Patient-physician prognostic concordance (PPPC) measured in percentage agreement and kappa. Bivariate analyses of characteristics of patients with and without PPPC.Among 407 patients (mean age 62.1 years, 29.5% female, 42.4% non-white), 300 (73.7%) dyads had non-PPPC; of which 252 (84.0%) reported a prognosis1 year when their physician estimated1 year. Only 107 (26.3%) had PPPC with prognosis of ≤ 1 year (n=20 patients) or1 year (n=87 patients); (Κ = -0.20, p = 1.0). Of those with physician estimated prognosis of1 year, non-PPPC was more likely among patients with lower symptom burden- number and severity (both p ≤.001), without completed advance directive (p=.001). Among those with physician prognosis estimate1 year, no patient characteristic was associated with PPPC or non-PPPC.Non-PPPC between HF patients and their physicians is high. HF patients are more optimistic than clinicians in estimating life expectancy. These data demonstrate there are opportunities to improve the quality of prognosis disclosure between patients with advanced HF and their physicians. Interventions to improve PPPC might include serious illness communication training.

Background: Left ventricular assist device (LVAD) evaluation includes a psychosocial assessment, conducted by social workers (SWs) on the advanced heart failure multidisciplinary team. Postdischarge caregiving plans are central to psychosocial evaluation. Caregiving’s relationship with LVAD outcomes is mixed, and testing patients’ social resources may disadvantage those from historically undertreated groups. We describe variation in policies defining adequate caregiving plans post-LVAD implant and possible impacts on patients from marginalized groups. Methods: This was a 2-phase sequential mixed-methods study: (1) phase 1, survey of US-based LVAD SWs, describing assessment structure and policies guiding candidacy outcomes; and (2) phase 2, individual interviews with SWs to further describe how caregiving plan adequacy impacts LVAD candidacy. Results: Sixty-seven SWs returned surveys (rr=47%) from unique programs. Caregiving plan inadequacy (n=30) was the most common psychosocial dealbreaker. When asked what duration of caregiving is required, 23% indicated ≥3 months, 27% 4 to 12 weeks, and 30% Conclusions: Policies regarding adequate duration of 24/7 caregiving vary, but inadequate caregiving plans are the most common psychosocial contraindication. Participants worry about patients’ ability to meet restrictive requirements, particularly from historically undertreated groups. This highlights a need to operationalize quality caregiving, standardize assessment, and support medically appropriate patients with strained social resources.

Background In 2014, a systematic review found large gaps in the quality of reporting of measures used in 86 published trials evaluating the effectiveness of patient decision aids (PtDAs). The purpose of this study was to update that review. Methods We examined measures of decision making used in 49 randomized controlled trials included in the 2014 and 2017 Cochrane Collaboration systematic review of PtDAs. Data on development of the measures, reliability, validity, responsiveness, precision, interpretability, feasibility, and acceptability were independently abstracted by 2 paired reviewers. Results Information from 273 measures was abstracted, and 109 of these covered the core domains of decision processes ( n = 55) and decision quality including informed choice/knowledge ( n = 48) and values-choice concordance ( n = 12). Very few studies reported data on the performance and clinical sensibility of measures, with reliability (23%) and validity (6%) being the most common. Studies using new measures were less likely to include information about their psychometric performance compared with previously published measures. Limitations The review was limited to reporting of measures in studies included in the Cochrane review and did not consult prior publications. Conclusion There continues to be very little reported about the development or performance of measures used to evaluate the effectiveness of PtDAs in published trials. Minimum reporting standards have been published, and efforts to require investigators to use them are needed.

Background A left ventricular assist device (LVAD) is a treatment option available to select patients with advanced heart failure. However, there are important social determinants of health that can play a role in determining patients’ outcomes after device placement. Methods and Results We leveraged the DECIDE-LVAD Trial to assess social determinants of health—relationship status, household income, race/ethnicity, educational attainment, and health insurance—at the time of evaluation, and their association with rate of LVAD placement in the subsequent year. About a quarter of patients were unpartnered (i.e., single/divorced/widowed/separated; n = 55 [26%]). A similar proportion had a household income of less than $20,000 per year (n = 50 [24%]). Few patients were other race (n = 39 [18%]), had less than a high school education (n = 14 [6.6%]), or had Medicaid as their primary payor (n = 17 [8.4%]). LVAD implantation was significantly lower among patients who were unpartnered compared with patients who were married or partnered. LVAD implantation was not associated with income, race, educational attainment or insurance status. Conclusions Our data from diverse LVAD centers at U.S. private and academic hospitals found that, among a broad sample of patients being evaluated for LVAD, married or partnered status was favorably associated with LVAD implantation, but other social determinants of health were not. Future research and policy changes should consider novel interventions for improving access to LVAD implantation for patients with inadequate social support.

The prevalence of Alzheimer's disease and related dementias (ADRD) is increasing. In the United States, older adults are among those most likely to have firearms in the home. Addressing firearm access among persons with ADRD can be confusing and stressful for family caregivers, healthcare providers, firearm industry representatives and law enforcement. This study sought to examine key stakeholder perspectives concerning legal and logistic considerations for temporary firearm transfers when a person with ADRD owned firearms. A secondary analysis of 24 qualitative interviews conducted to inform the development of a firearm safety tool for ADRD caregivers revealed four types of barriers. These barriers were each associated with logistical challenges and legal ambiguities that hampered ADRD-related firearm transfers: (1) legal questions on firearm ownership and permitted transferees; (2) transfer logistics and duration; (3) issues of engaging law enforcement or retailers for transfers; and, (4) lack of information resources and guidance. Siloes between stakeholder groups persist and limit information sharing. Broad initiatives engaging caregivers, older adults, clinicians, aging service providers, law enforcement, and firearm outlets could inform the development of policies, programs, and practices to enhance the safety and well-being of people with ADRD and their caregivers.

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA. Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions. Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care. Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration (NCT03794700 & NCT04458090).

Background CMS reimbursement guidelines for implantable cardioverter-defibrillators (ICDs) include mandated shared decision making, but without any manner of assessing the quality of decisions made. We developed and tested a scale meant to assess patients' knowledge of and preferences specific to ICDs. Such a tool would assess these constructs in the clinical environment, targeting resources and support for patients considering a primary prevention ICD. Methods Development of the ICD decision quality (ICD-DQ) scale included 1) item creation, 2) content validation using surveys of patients (n = 23) and clinicians (n = 31), and 3) examination of validity and reliability using a survey of patients who previously received an ICD (n = 295, response rate = 72%). Results The final scale consists of 12 knowledge and 8 preference items. With respect to content validity, clinician and patient respondents agreed on the importance of 19 of 24 candidate knowledge items (79%), and 9 of 11 treatment preference items (81%). Knowledge items exhibited moderate internal validity (α = 0.62, 1 factor), strong test-retest reliability (mean % correct at first administration = 59%, 62% at follow-up, p>.1) and discriminant validity (59% correct for patients, 93% among cardiologists). Short versions of the ICD-DQ were developed for clinical settings, the scores from both of which correlated with the long version in this cohort (11- item (r = 0.90) and a 5-item (r = 0.75)). Conclusions The ICD-DQ fills a critical gap in measuring the quality of patients' ICD decisions. They may be used to evaluate the effectiveness of patient decision aids or the quality of shared decision making in clinical practice. This article is protected by copyright. All rights reserved.

BACKGROUND: In 2019, the Advisory Committee on Immunization Practices (ACIP) incorporated the terminology “shared clinical decision-making” (SDM) into recommendations for two adult vaccines. OBJECTIVE: To assess among general internal medicine physicians (GIMs) and family physicians (FPs) nationally (1) attitudes about and experience with ACIP SDM recommendations, (2) knowledge of insurance reimbursement for vaccines with SDM recommendations, (3) how SDM recommendations are incorporated into vaccine forecasting software, and (4) physician and practice characteristics associated with not knowing how to implement SDM. DESIGN: Survey conducted in October 2019–January 2020 by mail or internet based on preference. PARTICIPANTS: Networks of GIMs and FPs recruited from American College of Physicians (ACP) and American Academy of Family Physicians (AAFP) who practice ≥ 50% in primary care. Post-stratification quota sampling performed to ensure networks similar to ACP and AAFP memberships. MAIN MEASURES: Responses on 4-point Likert scales (attitudes/experiences), true/false options (knowledge), and categorical response options (forecasting). Multivariable modeling with outcome of “not knowing how to implement SDM” conducted. KEY RESULTS: Response rate was 64% (617/968). Most physicians strongly/somewhat agreed SDM requires more time than routine recommendations (90%FP; 95%GIM, p = 0.02) and that they need specific talking points to guide SDM discussions (79%FP; 84%GIM, p = NS). There was both support for SDM recommendations for certain vaccines (81%FP; 75%GIM, p = 0.06) and agreement that SDM creates confusion (64%FP; 76%GIM, p = 0.001). Only 41%FP and 43%GIM knew vaccines recommended for SDM would be covered by most health insurance. Overall, 38% reported SDM recommendations are displayed as “recommended” and 23% that they did not result in any recommendation in forecasting software. In adjusted multivariable models, GIMs [risk ratio 1.44 (1.15–1.81)] and females [1.28 (1.02–1.60)] were significantly associated with not knowing how to implement SDM recommendations CONCLUSIONS: To be successful in a primary care setting, SDM for adult vaccination will require thoughtful implementation with decision-making support for patients and physicians.

Background: Major gaps exist in the routine initiation and dose up-titration of guideline-directed medical therapies (GDMT) for patients with heart failure with reduced ejection fraction. Without novel approaches to improve prescribing, the cumulative benefits of heart failure with reduced ejection fraction treatment will be largely unrealized. Direct-to-consumer marketing and shared decision making reflect a culture where patients are increasingly involved in treatment choices, creating opportunities for prescribing interventions that engage patients. Methods: The EPIC-HF (Electronically Delivered, Patient-Activation Tool for Intensification of Medications for Chronic Heart Failure with Reduced Ejection Fraction) trial randomized patients with heart failure with reduced ejection fraction from a diverse health system to usual care versus patient activation tools—a 3-minute video and 1-page checklist—delivered electronically 1 week before, 3 days before, and 24 hours before a cardiology clinic visit. The tools encouraged patients to work collaboratively with their clinicians to “make one positive change” in heart failure with reduced ejection fraction prescribing. The primary endpoint was the percentage of patients with GDMT medication initiations and dose intensifications from immediately preceding the cardiology clinic visit to 30 days after, compared with usual care during the same period. Results: EPIC-HF enrolled 306 patients, 290 of whom attended a clinic visit during the study period: 145 were sent the patient activation tools and 145 were controls. The median age of patients was 65 years; 29% were female, 11% were Black, 7% were Hispanic, and the median ejection fraction was 32%. Preclinic data revealed significant GDMT opportunities, with no patients on target doses of β-blocker, sacubitril/valsartan, and mineralocorticoid receptor antagonists. From immediately preceding the cardiology clinic visit to 30 days after, 49.0% in the intervention and 29.7% in the control experienced an initiation or intensification of their GDMT ( P =0.001). The majority of these changes were made at the clinician encounter itself and involved dose uptitrations. There were no deaths and no significant differences in hospitalization or emergency department visits at 30 days between groups. Conclusions: A patient activation tool delivered electronically before a cardiology clinic visit improved clinician intensification of GDMT. Registration: URL: https://www.clinicaltrials.gov ; Unique identifier: NCT03334188.

Prior work has shown substantial between-hospital variation in do-not-resuscitate orders, but stability of do-not-resuscitate preferences between hospitalizations and the institutional influence on do-not-resuscitate reversals are unclear. We determined the extent of do-not-resuscitate reversals between hospitalizations and the association of the readmission hospital with do-not-resuscitate reversal.Retrospective cohort study.California Patient Discharge Database, 2016-2018.Nonsurgical patients admitted to an acute care hospital with an early do-not-resuscitate order (within 24 hr of admission).None.We identified nonsurgical adult patients who survived an initial hospitalization with an early-do-not-resuscitate order and were readmitted within 30 days. The primary outcome was the association of do-not-resuscitate reversal with readmission to the same or different hospital from the initial hospital. Secondary outcomes included association of readmission to a low versus high do-not-resuscitate-rate hospital with do-not-resuscitate reversal. Among 49,336 patients readmitted within 30 days following a first do-not-resuscitate hospitalization, 22,251 (45.1%) experienced do-not-resuscitate reversal upon readmission. Patients readmitted to a different hospital versus the same hospital were at higher risk of do-not-resuscitate reversal (59.5% vs 38.5%; p0.001; adjusted odds ratio = 2.4; 95% CI, 2.3-2.5). Patients readmitted to low versus high do-not-resuscitate-rate hospitals were more likely to have do-not-resuscitate reversals (do-not-resuscitate-rate quartile 1 77.0% vs quartile 4 27.2%; p0.001; adjusted odds ratio = 11.9; 95% CI, 10.7-13.2). When readmitted to a different versus the same hospital, patients with do-not-resuscitate reversal had higher rates of mechanical ventilation (adjusted odds ratio = 1.9; 95% CI, 1.6-2.1) and hospital death (adjusted odds ratio = 1.2; 95% CI, 1.1-1.3).Do-not-resuscitate reversals at the time of readmission are more common than previously reported. Although changes in patient preferences may partially explain between-hospital differences, we observed a strong hospital effect contributing to high do-not-resuscitate-reversal rates with significant implications for patient outcomes and resource.

Background: Implantable cardioverter-defibrillators (ICDs) reduce the incidence of sudden cardiac death for high-risk patients with heart failure (HF), but shocks from these devices can also cause pain and anxiety at the end of life. Although professional society recommendations encourage proactive discussions about ICD deactivation, clinicians lack training in conducting these conversations, and they occur infrequently. Methods: As part of a six-center randomized controlled trial, we evaluated the educational component of a multicomponent intervention shown to increase conversations about ICD deactivation by clinicians who care for a subset of patients with advanced HF. This consisted of a 90-minute training workshop designed to improve the quality and frequency of conversations about ICD management. To characterize its utility as an isolated intervention, we compared HF clinicians' pre- and postworkshop scores (on a 5-point Likert scale) assessing self-reported confidence and skills in specific practices of advance care planning, ICD deactivation discussions, and empathic communication. Results: Forty intervention-group HF clinicians completed both pre- and postworkshop surveys. Preworkshop scores showed high baseline levels of confidence (4.36, standard deviation [SD] = 0.70) and skill (4.08, SD = 0.72), whereas comparisons of pre- and postworkshop scores showed nonsignificant decreases in confidence (−1.16, p = 0.252) and skill (−0.20, p = 0.843) after the training session. Conclusions: Our findings showed no significant changes in self-assessment ratings immediately after the educational intervention. However, our data did demonstrate that HF clinicians had high baseline self-perceptions of their skills in advance care planning conversations and appear to be well-primed for further professional development to improve communication in the setting of advanced HF.

Deprescribing has emerged as an important aspect of patient-centred medication management but is vastly underutilized in clinical practice. The current narrative review will describe an innovative patient-centred approach to deprescribing-N-of-1 trials. N-of-1 trials involve multiple-period crossover design experiments conducted within individual patients. They enable patients to compare the effects of two or more treatments or, in the case of deprescribing N-of-1 trials, continuation with a current treatment versus no treatment or placebo. N-of-1 trials are distinct from traditional between-patient studies such as parallel-group or crossover designs which provide an average effect across a group of patients and obscure differences between individuals. By generating data on the effect of an intervention for the individual rather than the population, N-of-1 trials can promote therapeutic precision. N-of-1 trials are a particularly appealing strategy to inform deprescribing because they can generate individual-level evidence for deprescribing when evidence is uncertain, and can thus allay patient and physician concerns about discontinuing medications. To illustrate the use of deprescribing N-of-1 trials, we share a case example of an ongoing series of N-of-1 trials that compare maintenance versus deprescribing of beta-blockers in patients with heart failure with preserved ejection fraction. By providing quantifiable data on patient-reported outcomes, promoting personalized pharmacotherapy, and facilitating shared decision making, N-of-1 trials represent a potentially transformative strategy to address polypharmacy.

Patient-clinician relationship quality and patient activation can both improve patient health outcomes, but prior work has primarily examined these factors independently. We examine how these two factors shape patient behavior in the setting of ambulatory heart failure care, where serial intensification of multiple medications is central to chronic care delivery.We used content analysis to analyze 22 in-depth patient interviews and 32 audio-recorded clinic visits collected for the EPIC-HF Trial. This was a secondary analysis providing qualitative depth to the parent RCT.We identified a typology of patient activation and patient-clinician relationship quality, with four types: Supported, Skeptical, Deferential, and Unempowered. Types were sensitive to time and context; a given patient might occupy multiple types throughout the course of a single clinic visit. The effects of patient-activation and the patient-clinician relationship appeared to be bidirectional, with each influencing the other.Patient-clinician relationship quality and patient activation are dominant in shaping clinical interactions and disease management. This interaction is dynamic, and patients may change types depending on time, place, or context.These findings suggest that both patient activation and high relationship quality work together to create a supportive environment for chronic care, where intermittent skepticism, deference or empowerment may be useful at particular times or in certain situations.

Use of dual-chamber implantable cardioverter-defibrillator (ICD) systems among patients without a pacing indication is an example of low-value care given higher procedural risks, higher costs, and little evidence for benefit from an atrial lead. However, variation in the use of dual-chamber systems was present among patients without a pacing indication.To examine the temporal trends and hospital variation in use of single- and dual-chamber ICD implantation among patients without a pacing indication undergoing first-time ICD implantation.A multicenter cross-sectional study was conducted using the US National Cardiovascular Data Registry ICD Registry. A total of 266 182 patients undergoing initial implantation of a single- or dual-chamber transvenous ICD without a bradycardia pacing indication, class I or II cardiac resynchronization therapy indication, or history of atrial fibrillation or atrial flutter were included. The study was conducted from April 1, 2010, to December 31, 2018; data analysis was performed from October 19, 2020, to January 5, 2022.Implantation of a single- or dual-chamber ICD.Temporal trends among patients undergoing single- vs dual-chamber ICDs were determined using the Cochran-Armitage trend test, and hospital-level variation using adjusted hospital median odds ratios was examined.A total of 266 182 patients (single-chamber ICD, 134 925; dual-chamber ICD, 131 257) were included in this analysis; mean (SD) age was 58.0 (14.0) years and 91 990 patients (68.2%) were men. The use of dual-chamber ICDs decreased from 64.7% (n = 15 694) in 2010 to 42.2% (n = 9762) in 2018 (P .001). Adjusted for patient characteristics, the median hospital-level proportion of single-chamber ICDs increased from 42.9% (95% CI, 42.6%-45.0%) in 2010 to 50.0% (95% CI, 47.8%-51.0%) in 2018. The median odds ratio for the use of dual-chamber ICDs, adjusted for patient characteristics, was 1.6 (95% CI, 1.6-1.8) in 2010 and 1.5 (95% CI, 1.5-1.8) in 2018, indicating decreasing but persistent variation in use.In this national study of US patients undergoing first-time ICD implantation without a clinical indication for an atrial lead, the use of dual-chamber devices decreased. However, institutional variability in the use of atrial leads persists, suggesting differences in individual or institutional cultures of real-world practice and opportunity to reduce this low-value practice.

Introduction Consideration of patient preferences for guideline-directed medical therapies (GDMT) for heart failure with reduced ejection fraction (HFrEF) may help improve major gaps in prescribing and adherence. This study aimed to identify the range and relative priority of factors influencing patients’ decisions to take HFrEF medications. Materials and Methods This was a convergent mixed methods study of patients with HFrEF. Focus groups were conducted to identify a list of factors followed by individuals rating and ranking the influence of each factor on their decision to take a medication. Using thematic analysis, we summarized preferences into categories. Results Two focus groups with 13 participants reported 22 factors. Of the factors, “keeping you alive” was most commonly ranked in the top three (seven participants), followed by “communication and understanding” (six participants). Factors were summarized into six categories (listed in order of patient-reported influence): 1) demonstrated improvements in quality of life and longevity, 2) decreased risk of hospitalization, 3) opportunity for shared decision-making and trust in provider, 4) absence of adverse events, 5) affordability, and 6) convenience of taking and absence of interference with daily life. Conclusion Patients prioritize treatment benefits and being informed more than risks, cost and inconvenience of taking HFrEF medications.

Background Shared decision making (SDM) is the process through which patients and their medical provider mutually explore therapy goals, risk/benefit, and treatment options regarding medical care. Decision aids are tools that aid in the process of values clarification and help assess decisional needs and potential decisional conflicts. Objective To develop and assess acceptability of a decision aid for commercial peanut allergy therapies. Methods The creation of this decision aid occurred in 3 stages, including a qualitative study to assess decisional needs, development of a draft decision aid through multiple iterations in accordance with international guidelines and decision aid experts, and assessment of decisional acceptability, decisional conflict, and decisional self-efficacy related to using the decision aid. Results The decision aid went through 9 iterations, resulting in a 4-page aid with 7 parts, explaining the therapies, key risks and benefits of therapy choices, relative importance of key attributes of the therapies, and a self-check assessment regarding informational adequacy and how to take the next steps. A total of 24 subjects assessed the decision aid, noting it had good acceptability, high decisional self-efficacy (mean score 91.9/100), and low decisional conflict (mean score 20.2/100). Respondents rated the information content as adequate and sufficient and the information regarding the therapy choices as fair and balanced without a clear bias or presenting a “best choice.” Conclusion We have developed this decision aid as a tool to help caregivers navigate the complexity of decision making for peanut allergy treatment options. The decision aid was noted to have good acceptability, with scores reflective of the instrument enhancing decisional self-efficacy and reducing decisional conflict.