BACKGROUND: Intentional exploration, or elicitation, of patient and family values-who/what matters most-is critical to the delivery of person-centered care, yet the values elicitation experiences of family caregivers have been understudied. Understanding caregiver experiences discussing, reflecting upon, and acting on their values is critical to optimizing health decisions after left ventricular assist device (LVAD) implantation. OBJECTIVE: The aim of this study was to explore the values elicitation experiences of family caregivers of individuals with an LVAD in the postimplantation period. METHODS: This was a qualitative descriptive study of LVAD caregivers recruited from an outpatient clinic in the southeast United States. After completing one-on-one semistructured interviews, participants' transcripts were analyzed using thematic analysis. RESULTS: Interviewed caregivers (n = 21) were 27 to 76 years old, with 67% African American, 76% female, 76% urban-dwelling, and 62% a spouse/partner. LVAD implantation was an impactful experience prompting caregiver reevaluation of their values; these values became instrumental to navigating decisions and managing stressors from their caregiving role. Three broad themes of caregiver values elicitation experiences emerged: (1) caregivers leverage their values for strength and guidance in navigating their caregiving role, (2) LVAD implantation prompts (re)evaluation of relationships and priorities, and (3) caregivers convey their goals and priorities when deemed relevant to patient care. CONCLUSIONS: Having a care recipient undergo LVAD implantation prompted caregivers to reevaluate their values, which were used to navigate caregiving decisions and stressors. Findings highlight the need for healthcare professionals to engage and support caregivers after LVAD implantation.
BACKGROUND: Values are broadly understood to have implications for how individuals make decisions and cope with serious illness stressors, yet it remains uncertain how patients and their family and friend caregivers discuss, reflect upon, and act on their values in the post-left ventricular assist device (LVAD) implantation context. This study aimed to explore the values elicitation experiences of patients with an LVAD in the post-implantation period. METHODS: Qualitative descriptive study of LVAD recipients. Socio-demographics and patient resource use were analyzed using descriptive statistics and semi-structured interview data using thematic analysis. Adult (> 18 years) patients with an LVAD receiving care at an outpatient clinic in the Southeastern United States. RESULTS: Interviewed patients (n = 27) were 30-76 years, 59% male, 67% non-Hispanic Black, 70% married/living with a partner, and 70% urban-dwelling. Three broad themes of patient values elicitation experiences emerged: 1) LVAD implantation prompts deep reflection about life and what is important, 2) patient values are communicated in various circumstances to convey personal goals and priorities to caregivers and clinicians, and 3) patients leverage their values for strength and guidance in navigating life post-LVAD implantation. LVAD implantation was an impactful experience often leading to reevaluation of patients' values; these values became instrumental to making health decisions and coping with stressors during the post-LVAD implantation period. Patient values arose within broad, informal exchanges and focused, decision-making conversations with their caregiver and the healthcare team. CONCLUSIONS: Clinicians should consider assessing the values of patients post-implantation to facilitate shared understanding of their goals/priorities and identify potential changes in their coping.
Heart-Assist Devices , Qualitative Research , Humans , Heart-Assist Devices/psychology , Male , Middle Aged , Female , Adult , Aged , Adaptation, Psychological
Despite considerable progress in recent years, research in cardiac psychology is not widely translated into routine practice by clinical cardiologists or clinical health psychologists. Self-determination theory (SDT), which addresses how basic psychological needs of autonomy, competence, and relatedness contribute to the internalization of motivation, may help bridge this research-practice gap through its application to shared decision-making (SDM). This narrative review discusses the following: (a) brief background information on SDT and SDM, (b) the application of SDT to health behavior change and cardiology interventions, and (c) how SDT and SDM may be merged using a dissemination and implementation (D&I) framework. We address barriers to implementing SDM in cardiology, how SDM and SDT address the need for respect of patient autonomy, and how SDT can enhance D&I of SDM interventions through its focus on autonomy, competence, and relatedness and its consideration of other constructs that facilitate the internalization of motivation.
Guideline-directed medical therapies and guideline-directed nonpharmacological therapies improve quality of life and survival in patients with heart failure (HF), but eligible patients, particularly women and individuals from underrepresented racial and ethnic groups, are often not treated with these therapies. Implementation science uses evidence-based theories and frameworks to identify strategies that facilitate uptake of evidence to improve health. In this scientific statement, we provide an overview of implementation trials in HF, assess their use of conceptual frameworks and health equity principles, and provide pragmatic guidance for equity in HF. Overall, behavioral nudges, multidisciplinary care, and digital health strategies increased uptake of therapies in HF effectively but did not include equity goals. Few HF studies focused on achieving equity in HF by engaging stakeholders, quantifying barriers and facilitators to HF therapies, developing strategies for equity informed by theory or frameworks, evaluating implementation measures for equity, and titrating strategies for equity. Among these HF equity studies, feasibility was established in using various educational strategies to promote organizational change and equitable care. A couple include ongoing randomized controlled pragmatic trials for HF equity. There is great need for additional HF implementation trials designed to promote delivery of equitable guideline-directed therapy.
American Heart Association , Health Equity , Heart Failure , Implementation Science , Heart Failure/therapy , Heart Failure/diagnosis , Humans , United States , Healthcare Disparities
BACKGROUND: Women who suffer a witnessed out-of-hospital cardiac arrest receive bystander cardiopulmonary resuscitation (CPR) less often than men. To understand this phenomenon, we queried whether there are differences in deterrents to providing CPR based on the rescuer's gender. METHODS: Participants were surveyed using a national crowdsourcing platform. Participants ranked the following 5 previously identified themes as reasons: rescuers are afraid to injure or hurt women; rescuers might have a misconception that women do not suffer cardiac arrest; rescuers are afraid to be accused of sexual assault or sexual harassment; rescuers have a fear of touching women or that their touch might be inappropriate; and rescuers think that women are faking it or being overdramatic. Participants were adult US residents able to correctly define CPR. Participants ranked the themes if the rescuer was gender unidentified, a man, and a woman, in variable order. RESULTS: In November 2018, 520 surveys were completed. The respondents identified as 42.3% women, 74.2% White, 10.4% Black, and 6.7% Hispanic. Approximately half (48.1%) of the cohort knew how to perform CPR, but only 7.9% had ever performed CPR. When the rescuer was identified as a man, survey participants ranked fear of sexual assault or sexual harassment and fear of touching women or that the touch might be inappropriate as the top reasons (36.2% and 34.0% of responses, respectively). Conversely, when the rescuer was identified as a woman, survey respondents reported fear of hurting or injuring as the top reason (41.2%). CONCLUSIONS: Public perceptions as to why women receive less bystander CPR than men were different based on the gender of the rescuer. Participants reported that men rescuers would potentially be hindered by fears of accusations of sexual assault/harassment or inappropriate touch, while women rescuers would be deterred due to fears of causing physical injury.
Cardiopulmonary Resuscitation , Out-of-Hospital Cardiac Arrest , Touch Perception , Adult , Male , Humans , Female , Out-of-Hospital Cardiac Arrest/diagnosis , Out-of-Hospital Cardiac Arrest/therapy , Surveys and Questionnaires , Health Knowledge, Attitudes, Practice
Background: Decision-making about tracheostomy and prolonged mechanical ventilation (PMV) is emotionally complex. Expectations of surrogate decision-makers and physicians rarely align. Little is known about what surrogates need to make goal-concordant decisions. We sought to identify drivers of tracheostomy and PMV decision-making. Methods: Using Grounded Theory, we performed a qualitative study with semi-structured interviews with surrogates of patients receiving mechanical ventilation (MV) being considered for tracheostomy and physicians routinely caring for patients receiving MV. Recruitment was stopped when thematic saturation was reached. Separate codebooks were created for surrogate and physician interviews. Themes and factors affecting decision-making were identified and a theoretical model tracheostomy decision-making was developed. Results: 43 participants (23 surrogates and 20 physicians) completed interviews. A theoretical model of themes and factors driving decision-making emerged for the data. Hope, Lack of Knowledge & Data, and Uncertainty emerged as the three main themes all which were interconnected with one another and, at times, opposed each other. Patient Wishes, Past Activity/Medical History, Short and Long-Term Outcomes, and Meaningful Recovery were key factors upon which surrogates and physicians based decision-making. The themes were the lens through which the factors were viewed and decision-making existed as a balance between surrogate emotions and understanding and physician recommendations. Conclusions: Tracheostomy and prolonged MV decision-making is complex. Hope and Uncertainty were conceptual themes that often battled with one another. Lack of Knowledge & Data plagued both surrogates and physicians. Multiple tangible factors were identified that affected surrogate decision-making and physician recommendations. Implications: Understanding this complex decision-making process has the potential to improve the information provided to surrogates and, potentially, increase the goal concordant care and alignment of surrogate and physician expectations. Highlights: Decision-making for tracheostomy and prolonged mechanical ventilation is a complex interactive process between surrogate decision-makers and providers.Using a Grounded Theory framework, a theoretical model emerged from the data with core themes of Hope, Uncertainty, and Lack of Knowledge & Data that was shared by both providers and surrogates.The core themes were the lenses through which the key decision-making factors of Patient Wishes, Past Activity/Medical History, Short and Long-Term Outcomes, and Meaningful Recovery were viewed.The theoretical model provides a roadmap to design a shared decision-making intervention to improve tracheostomy and prolonged mechanical ventilation decision-making.
Background: We tested a novel hospice-specific patient decision aid to determine whether the decision aid could improve hospice knowledge, opinions of hospice, and decision self-efficacy in making decisions about hospice. Methods: Two patient-level randomized studies were conducted using two different cohorts. Recruitment was completed from March 2019 through May 2020. Cohort #1 was recruited from an academic hospital and a safety-net hospital and Cohort #2 was recruited from community members. Participants were randomized to review a hospice-specific patient decision aid. The primary outcomes were change in hospice knowledge, hospice beliefs and attitudes, and decision self-efficacy Wilcoxon signed rank tests were used to evaluate differences on the primary outcomes between baseline and 1-month. Participants: Participants were at least 65 years of age. A total of 266 participants enrolled (131 in Cohort #1 and 135 in Cohort #2). Participants were randomized to the intervention group (n = 156) or control group (n = 109). The sample was 74% (n = 197) female, 58% (n = 156) African American and mean age was 74.9. Results: Improvements in hospice knowledge between baseline and 1-month were observed in both the intervention and the control groups with no differences between groups (.43 vs .275 points, P = .823). There were no observed differences between groups on Hospice Beliefs and Attitudes scale (3.29 vs 3.08, P = .076). In contrast, Decision Self-Efficacy improved in both groups and the effect of the intervention was significant (8.04 vs 2.90, P = -.027). Conclusions: The intervention demonstrated significant improvements in decision self-efficacy but not in hospice knowledge or hospice beliefs and attitudes.
Decision Support Techniques , Hospice Care , Aged , Female , Humans , Black or African American , Decision Making , Hospices , Male
BACKGROUND: Patient reported outcome measures (PROMs) are important for patient-centered, value-based care; however, implementation into surgical practice remains limited. We aimed to demonstrate feasibility of measuring PROMs in an academic breast cancer clinic. METHODS: We conducted a pilot study implementing the patient-reported outcome measure BREAST-Q among patients with Stage 0-III breast cancer at a single institution from 06/2019-03/2023 using the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. Barriers and facilitators were characterized. Survey completion was assessed pre-operatively and up to 12 months post-operatively. RESULTS: Barriers included limited time and lack of incorporation into the electronic medical record. Facilitators included utilizing trained team members and an automated workflow. Among eligible patients, 74% completed BREAST-Q at 2-weeks post-operatively and 55% at 12 months post-operatively. CONCLUSIONS: We describe the implementation of a PROM using the RE-AIM framework, highlighting facilitators and barriers that may assist others in collecting patient-reported outcome data.
Breast Neoplasms , Humans , Female , Breast Neoplasms/surgery , Pilot Projects , Patient Reported Outcome Measures , Surveys and Questionnaires , Patients
BACKGROUND: Evidence-based medical therapy for heart failure with reduced ejection fraction (HFrEF) often entails substantial out-of-pocket costs that can vary appreciably between patients. This has raised concerns regarding financial toxicity, equity, and adherence to medical therapy. In spite of these concerns, cost discussions in the HFrEF population appear to be rare, partly because out-of-pocket costs are generally unavailable during clinical encounters. In this trial, out-of-pocket cost information is given to patients and clinicians during outpatient encounters with the aim to assess the impact of providing this information on medication discussions and decisions. HYPOTHESIS: Cost-informed decision-making will be facilitated by providing access to patient-specific out-of-pocket cost estimates at the time of clinical encounter. DESIGN: Integrating Cost into Shared Decision-Making for Heart Failure with Reduced Ejection Fraction (POCKET-COST-HF) is a multicenter trial based at Emory Healthcare and University of Colorado Health. Adapting an existing patient activation tool from the EPIC-HF trial, patients and clinicians are presented a checklist with medications approved for treatment of HFrEF with or without patient-specific out-of-pocket costs (obtained from a financial navigation firm). Clinical encounters are audio-recorded, and patients are surveyed about their experience. The trial utilizes a stepped-wedge cluster randomized design, allowing for each site to enroll control and intervention group patients while minimizing contamination of the control arm. DISCUSSION: This trial will elucidate the potential impact of robust cost disclosure efforts and key information regarding patient and clinician perspectives related to cost and cost communication. It also will reveal important challenges associated with providing out-of-pocket costs for medications during clinical encounters. Acquiring medication costs for this trial requires an involved process and outsourcing of work. In addition, costs may change throughout the year, raising questions regarding what specific information is most valuable. These data will represent an important step towards understanding the role of integrating cost discussions into heart failure care. GOV IDENTIFIER: NCT04793880.
Heart Failure , Ventricular Dysfunction, Left , Humans , Heart Failure/therapy , Health Expenditures , Stroke Volume , Delivery of Health Care
BACKGROUND: Despite significant family caregiver (FCG) burnout, there are currently no tested interventions to support the FCG role after left ventricular assist device (LVAD) implantation or formalized training for clinicians to support FCGs. OBJECTIVE: We adapted the existing ENABLE (Educate, Nurture, Advise Before Life Ends) intervention to LVAD clinicians and FCGs and assessed clinical implementation and dissemination. METHODS: ENABLE-LVAD is an interactive, self-paced clinician training coupled with FCG-facing guidebooks and resources. Implementation and dissemination were evaluated by the RE-AIM (reach, effectiveness, adoption, implementation, and maintenance) framework. RESULTS: As of May 2023, 187 clinicians registered for the training, and 41 completed all modules (22.0% completion rate). Of those who completed the training and responded to a 6-month survey, one-third (n = 10, 33.3%) used ENABLE-LVAD with FCGs, and 100% of those planned to continue using it. The primary barrier to completing the training was time. CONCLUSIONS: The ENABLE-LVAD clinician training was successfully disseminated and implemented as a useful resource to support LVAD FCGs.
OBJECTIVES: In a randomized controlled trial, we found that applying implementation science (IS) methods and best practices in clinical decision support (CDS) design to create a locally customized, "enhanced" CDS significantly improved evidence-based prescribing of ß blockers (BB) for heart failure compared with an unmodified commercially available CDS. At trial conclusion, the enhanced CDS was expanded to all sites. The purpose of this study was to evaluate the real-world sustained effect of the enhanced CDS compared with the commercial CDS. METHODS: In this natural experiment of 28 primary care clinics, we compared clinics exposed to the commercial CDS (preperiod) to clinics exposed to the enhanced CDS (both periods). The primary effectiveness outcome was the proportion of alerts resulting in a BB prescription. Secondary outcomes included patient reach and clinician adoption (dismissals). RESULTS: There were 367 alerts for 183 unique patients and 171 unique clinicians (pre: March 2019-August 2019; post: October 2019-March 2020). The enhanced CDS increased prescribing by 26.1% compared with the commercial (95% confidence interval [CI]: 17.0-35.1%), which is consistent with the 24% increase in the previous study. The odds of adopting the enhanced CDS was 81% compared with 29% with the commercial (odds ratio: 4.17, 95% CI: 1.96-8.85). The enhanced CDS adoption and effectiveness rates were 62 and 14% in the preperiod and 92 and 10% in the postperiod. CONCLUSION: Applying IS methods with CDS best practices was associated with improved and sustained clinician adoption and effectiveness compared with a commercially available CDS tool.
Decision Support Systems, Clinical , Heart Failure , Humans , Heart Failure/drug therapy , Implementation Science
BACKGROUND: Women are less likely to receive left ventricular assist devices and are more likely to experience poor outcomes. However, how gender impacts LVAD decision-making regarding LVAD implantation and the effects of that decision remains unknown. METHODS: We performed a sub-group analysis from the stepped-wedge DECIDE-LVAD trial, which tested a decision-support intervention for patients considering LVAD therapy. RESULTS: Excluding 9 patients who withdrew from assessments, of the 239 patients analyzed, 203 (85%) were men and 36 (15%) were women. More men received LVADs (70%) than women (61%) and more men were alive at 6 months compared to women, both among those who received LVADs (87% vs 82%) and those who did not (74% vs 50%) (p = 0.002). Compared to men, women were more likely to have decision regret, depressive symptoms and perceived stress at baseline but not at follow-up. At 6-month follow-up, men experience improvements in decisional conflict, acceptance of illness, struggle with illness, and perceived stress-none of those improvements were noted amongst women. Compared to men who received LVADs, women receiving LVADs had worse decision regret and depressive symptoms at baseline and worse acceptance of illness and perceived stress at six months. Men who received LVADs experienced improvement in decisional conflict and perceived stress, while women did not experience these improvements. Both men and women who received LVADs experienced improvement in depressive symptoms. Quality of life as assessed by EuroQol visual analog scale improved for both men and women who received LVADs but not for those who did not receive LVADs; no gender differences in quality of life were noted. CONCLUSION: Women require greater decisional support at time of decision to undergo LVAD implantation and subsequently might benefit from more intensive psychosocial support.
Heart Failure , Heart-Assist Devices , Male , Humans , Female , Quality of Life , Heart-Assist Devices/adverse effects , Emotions , Decision Making
OBJECTIVES: To define healthcare trajectories after tracheostomy to inform shared decision-making efforts for critically ill patients. DESIGN: Retrospective epidemiologic cohort study. SETTING: California Patient Discharge Database 2018-2019. PATIENTS: Patients who received a tracheostomy. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We tracked 1-year outcomes after tracheostomy, including survival and time alive in and out of a healthcare facility (HCF. Patients were stratified based on surgical status (did the patient require a major operating room procedure or not), age (65 yr old or older and less than 65 yr), pre-ICU comorbid states (frailty, chronic organ dysfunction, cancer, and robustness), and the need for dialysis during the tracheostomy admission. We identified 4,274 nonsurgical adults who received a tracheostomy during the study period with 50.9% being 65 years old or older. Among adults 65 years old or older, median survival after tracheostomy was less than 3 months for individuals with frailty, chronic organ dysfunction, cancer, or dialysis. Median survival was 3 months for adults younger than 65 years with cancer or dialysis. Most patients spent the majority of days alive after a tracheostomy in an HCF in the first 3 months. Older adults had very few days alive and out of an HCF in the first 3 months after tracheostomy. Most patients who ultimately died in the first year after tracheostomy spent almost all days alive in an HCF. CONCLUSIONS: Cumulative mortality and median survival after a tracheostomy were very poor across most ages and groups. Older adults and several subgroups of younger adults experienced high rates of prolonged hospitalization with few days alive and out of an HCF. This information may aid some patients, surrogates, and providers in decision-making.
Frailty , Neoplasms , Humans , Aged , Cohort Studies , Retrospective Studies , Tracheostomy , Multiple Organ Failure , Renal Dialysis , Delivery of Health Care
BACKGROUND: Shared decision-making is mandated for patients receiving primary prevention implantable cardioverter defibrillators (ICDs). Less attention has been paid to generator exchange decisions, although at the time of generator exchange, patients' risk of sudden cardiac death, risk of procedural complications, quality of life, or prognosis may have changed. This study was designed to explore how patients make ICD generator exchange decisions. METHODS: Emory Healthcare patients with primary prevention ICDs implanted from 2013 to 2021 were recruited to complete in-depth interviews exploring perspectives regarding generator exchanges. Interviews were conducted in 2021. Transcribed interviews were qualitatively coded using multilevel template analytic methods. To investigate benefit thresholds for pursuing generator exchanges, patients were presented standard-gamble type hypothetical scenarios where their ICD battery was depleted but their 5-year risk of sudden cardiac death at that time varied (10%, 5%, and 1%). RESULTS: Fifty patients were interviewed; 18 had a prior generator exchange, 16 had received ICD therapy, and 17 had improved left ventricular ejection fraction. As sudden cardiac death risk decreased from 10% to 5% to 1%, the number of participants willing to undergo a generator exchange decreased from 48 to 42 to 33, respectively. Responses suggest that doctor's recommendations are likely to substantially impact patients' decision-making. Other drivers of decision-making included past experiences with ICD therapy and device implantation, as well as risk aversion. Therapeutic inertia and misconceptions about ICD therapy were common and represent substantive barriers to effective shared decision-making in this context. CONCLUSIONS: Strong defaults may exist to continue therapy and exchange ICD generators. Updated risk stratification may facilitate shared decision-making and reduce generator exchanges in very low-risk patients, especially if these interventions are directed toward clinicians. Interventions targeting phenomena such as therapeutic inertia may be more impactful and warrant exploration in randomized trials.
Defibrillators, Implantable , Humans , Stroke Volume , Ventricular Function, Left , Quality of Life , Death, Sudden, Cardiac/prevention & control , Death, Sudden, Cardiac/etiology , Primary Prevention/methods , Risk Factors
BACKGROUND: Older adults are faced with many unique and highly consequential decisions such as those related to finances, healthcare, and everyday functioning (e.g., driving cessation). Given the significant impact of these decisions on independence, wellbeing, and safety, an understanding of how cognitive impairment may impact decision making in older age is important. OBJECTIVE: To examine the impact of mild cognitive impairment (MCI) on responses to a modified version of the Short Portable Assessment of Capacity for Everyday Decision making (SPACED). METHODS: Participants were community-dwelling, actively driving older adults (Nâ=â301; M ageâ=â77.1 years, SDâ=â5.1; 69.4% with a college degree or higher; 51.2% female; 95.3% White) enrolled in the Advancing Understanding of Transportation Options (AUTO) study. A generalized linear model adjusted for age, education, sex, randomization group, cognitive assessment method, and study site was used to examine the relationship between MCI status and decision making. RESULTS: MCI status was associated with poorer decision making; participants with MCI missed an average of 2.17 times more points on the SPACED than those without MCI (adjusted mean ratio: 2.17, 95% CI: 1.02, 4.61, pâ=â0.044). CONCLUSION: This finding supports the idea that older adults with MCI exhibit poorer decision-making abilities than cognitively normal older adults. It also suggests that older adults with MCI may exhibit poorer decision making across a wide range of decision contexts.
Cognitive Dysfunction , Humans , Female , Aged , Male , Cognitive Dysfunction/diagnosis , Cognitive Dysfunction/psychology , Independent Living , Delivery of Health Care , Educational Status , Decision Making
BACKGROUND: Terror management theory (TMT) posits that people manage death-related anxiety through the meaning provided by their cultural world-views and the sense of personal value provided by self-esteem. While a large body of research has supported the core propositions of TMT, little research has focused on its application to individuals with terminal illness. If TMT can help healthcare providers better understand how belief systems adapt and change in life-threatening illness, and the role they play in managing death-related anxiety, it may provide guidance on how to improve communication around treatments near the end of life. As such, we set out to review the available research articles that focus on describing the relationship between TMT and life-threatening illness. METHODS: We reviewed PubMed, PsycINFO, Google Scholar, and EMBASE through May 2022 for original research articles focused on TMT and life-threatening illness. Articles were only deemed appropriate for inclusion if direct incorporation of the principles of TMT were made in reference to a population of interest whom had life-threatening illness Results were screened by title and abstract, followed by full review of candidate articles. References were also scanned. Articles were assessed qualitatively. RESULTS: Six relevant and original research articles were published which provide varied levels of support for TMT's application in critical illness, each article detailed evidence of ideological changes consistent with what TMT would predict. Building self-esteem, enhancing the experience of life as meaningful, incorporating spirituality, engaging family members, and caring for patients at home where meaning and self-esteem can be better maintained are strategies supported by the studies and serve as starting points for further research. CONCLUSION: These articles suggest that applying TMT to life-threatening illness can help identify psychological changes that may effectively minimize the distress from dying. Limitations of this study include a heterogenous group of relevant studies and qualitative assessment.
Family , Spirituality , Humans , Death , Attitude to Death
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.
Heart Failure , Heart-Assist Devices , Humans , Caregivers , Adaptation, Psychological , Patients , Heart Failure/therapy
BACKGROUND: Racial disparities in implantable cardioverter-defibrillator (ICD) implantation are multifactorial and are partly explained by higher refusal rates. OBJECTIVE: To assess the effectiveness of a video decision support tool for Black patients eligible for an ICD. DESIGN: Multicenter, randomized clinical trial conducted between September 2016 and April 2020. (ClinicalTrials.gov: NCT02819973). SETTING: Fourteen academic and community-based electrophysiology clinics in the United States. PARTICIPANTS: Black adults with heart failure who were eligible for a primary prevention ICD. INTERVENTION: An encounter-based video decision support tool or usual care. MEASUREMENTS: The primary outcome was the decision regarding ICD implantation. Additional outcomes included patient knowledge, decisional conflict, ICD implantation within 90 days, the effect of racial concordance on outcomes, and the time patients spent with clinicians. RESULTS: Of the 330 randomly assigned patients, 311 contributed data for the primary outcome. Among those randomly assigned to the video group, assent to ICD implantation was 58.6% compared with 59.4% in the usual care group (difference, -0.8 percentage point [95% CI, -13.2 to 11.1 percentage points]). Compared with usual care, participants in the video group had a higher mean knowledge score (difference, 0.7 [CI, 0.2 to 1.1]) and a similar decisional conflict score (difference, -2.6 [CI, -5.7 to 0.4]). The ICD implantation rate within 90 days was 65.7%, with no differences by intervention. Participants randomly assigned to the video group spent less time with their clinician than those in the usual care group (mean, 22.1 vs. 27.0 minutes; difference, -4.9 minutes [CI, -9.4 to -0.3 minutes]). Racial concordance between video and study participants did not affect study outcomes. LIMITATION: The Centers for Medicare & Medicaid Services implemented a requirement for shared decision making for ICD implantation during the study. CONCLUSION: A video-based decision support tool increased patient knowledge but did not increase assent to ICD implantation. PRIMARY FUNDING SOURCE: Patient-Centered Outcomes Research Institute.
Decision Making, Shared , Defibrillators, Implantable , Adult , Aged , Humans , Death, Sudden, Cardiac/prevention & control , Decision Making , Medicare , United States , Black or African American
BACKGROUND: Guidelines recommend incorporation of caregiver burden assessment and list significant caregiver burden as a relative contraindication when considering left-ventricular assist device (LVAD) implantation. METHODS: To assess national practices regarding caregiver burden assessment, in 2019 we administered a 47-item survey to LVAD clinicians using 4 convenience samples. RESULTS: Responses were obtained from 191 registered nurses, 109 advance practice providers, 71 physicians, 59 social workers, and 40 others representing 132 LVAD programs; 125 of 173 total United States programs were included in the final analysis. While most programs (83.2%) assessed caregiver burden, assessment was most frequently conducted informally during social work evaluation (83.2%), with only 8.8% incorporating validated measures of caregiver burden. Larger programs were more likely to use a validated assessment measure (OR 6.68 [1.33-33.52]). CONCLUSIONS: Future research should focus on how programs can standardize caregiver burden assessment and how the level of burden may impact patient and caregiver outcomes.
Heart Failure , Heart-Assist Devices , Humans , Caregiver Burden , Treatment Outcome , Caregivers , Patients , Heart Failure/surgery
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.
This commentary focuses on individual motivation to pursue psychosocial support within the context of routine oncologic treatment. We term this novel idea as patients' willingness to pursue psychosocial treatment and review how this construct is discussed across various models of intervention design, health behavior change, and health delivery. We conclude that patients' willingness towards psychosocial support is one of the most important predictors to whether a patient with cancer may choose to engage with psychosocial services.
Neoplasms , Psychiatric Rehabilitation , Humans , United States , Psychosocial Support Systems , Neoplasms/psychology , Medical Oncology , Health Behavior
