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BACKGROUND: Individuals living with heart failure often require informal caregiving assistance for optimal self-care maintenance. The influence of caregiver burden and resilience on dyadic congruence is not well understood. OBJECTIVE: To compare how dyadic congruence is influenced by level of burden and resilience expressed by caregivers of patients with heart failure. METHODS: Mixed-methods analysis of individuals with heart failure and their caregivers, focusing on measures of caregiver burden (Zarit Burden Interview) and resilience (Brief Resilience Scale). Data were integrated using the Heart Failure Care Dyadic Typology. RESULTS: Twelve dyads (n=24 participants) were classified as Type II (n=7) and Type III (n=5) dyads. Among Type II dyads, average caregiver burden was 19.43 (± 13.89) and resilience was 3.16 (± 1.04). For Type III dyads, average caregiver burden was 3.80 (± 4.27) and resilience 4.07 (± 1.36), respectively. Two key themes were derived: 1) caregivers’ tendency to take the lead, and 2) the usefulness of cognitive reframing. Data integration elucidated that theme 1 was more common among Type II dyads and those with higher burden, and theme 2 was more prevalent among Type III dyads and those with higher resilience. CONCLUSION: Findings highlight important variances in how dyads collectively manage heart failure. Future inquiry should involve tailored intervention development to bolster informal caregivers’ quality of life and ability to better support patients throughout their heart failure trajectory.

Cardiac sarcoidosis (CS) is an important cause of cardiomyopathy. The trajectory of left ventricular ejection fraction (LVEF) in patients with CS undergoing treatment remains unclear. Patients with CS who were treated with corticosteroids and who underwent transthoracic echocardiography were studied. Baseline characteristics, treatment, echocardiographic data (including baseline to follow-up change in LVEF), and outcomes were retrospectively evaluated. Among 100 patients, 55 had baseline reduced LVEF (50%), and 45 had preserved LVEF (≥50%). At follow-up, 82% of patients demonstrated stable or improved LVEF. Change in LVEF was significantly higher in the baseline reduced than in the preserved LVEF group (5% [interquartile range 0 to 15] vs 0% [interquartile range -10% to 5%], p = 0.001). There was no difference in corticosteroid exposure or use of heart failure guideline-directed medical therapy between patients who did experience improvement in LVEF and those who did not experience improvement in LVEF. On multivariable analysis, baseline reduced LVEF (Odds ratio 54.89, 95% confidence interval 3.84 to 785.09, p = 0.003) and complete heart block (Odds ratio 28.88, 95% confidence interval 2.17 to 383.74, p = 0.011) at presentation were significantly associated with reduced LVEF after treatment. In conclusion, most patients with CS treated with corticosteroids maintain or improve LV systolic function. Cardiac characteristics at presentation impact prognosis in CS, despite treatment.

BACKGROUND: Fatigue is a common and distressing symptom of heart failure and has important implications for patient-reported and clinical outcomes. Despite being a common and bothersome symptom, fatigue has been understudied in heart failure. OBJECTIVE: To synthesize existing literature on fatigue in heart failure through a systematic literature review guided by the biopsychosocial model of health. METHODS: A systematic search of the literature was performed on March 18(th), 2020, using Pubmed, Embase, and CINAHL. Full-text, primary research articles, written in English, in which fatigue was a primary symptom of interest in adults with a diagnosis of heart failure were included. RESULTS: The search yielded 1138 articles; 33 articles that met inclusion criteria were selected for extraction and synthesis. Biological and psychological factors associated with fatigue were New York Heart Association functional class, hemoglobin level, history of stroke, and depression. However, there are limited HF specific factors linked to fatigue. Social factors related to fatigue included social roles, relationship strain, and loneliness/isolation. Few non-pharmacologic interventions have been tested by show some promise for alleviating fatigue in HF. Studies show conflicting evidence related to the prognostic implications of fatigue. CONCLUSIONS: Important biological correlates of fatigue were identified; however, psychological and social variables were limited to qualitative description. There is need for expanded models to better understand the complex physiologic nature of fatigue in HF. Additionally, more research is needed to 1) define the relationships between fatigue and both psychological and social factors, 2) better describe the prognostic implications of fatigue, and 3) develop more therapeutic approaches to alleviate fatigue with the goal of improving overall quality of life.

The prevalence of sarcoidosis-related cardiomyopathy is increasing. Sarcoidosis impacts cardiac function through granulomatous infiltration of the heart, resulting in conduction disease, arrhythmia and/or heart failure. Diagnosis of cardiac sarcoidosis can be challenging and requires clinician awareness as well as differentiation from overlapping diagnostic phenotypes such as other forms of myocarditis and arrhythmogenic cardiomyopathy. Clinical manifestations, extracardiac involvement, histopathology, and advanced cardiac imaging can all lend support to a diagnosis of cardiac sarcoidosis. Mainstay therapy for cardiac sarcoidosis is immunosuppression, however no prospective clinical trials exist to guide management. Patients may progress to developing advanced heart failure or ventricular arrhythmia, for which ventricular assist device therapies or heart transplantation may be considered. The existing knowledge gaps in cardiac sarcoidosis call for an interdisciplinary approach to both patient care and future investigation to improve mechanistic understanding and therapeutic strategies.

Aims Caregivers of persons living with ventricular assist devices (VADs) are integrally involved in both medical and non-medical care. We sought to understand tasks caregivers perform after surgical recovery, ways the home is adapted for those tasks, and presence of home safety hazards. Methods and results We conducted semi-structured interviews with persons living with a VAD and their caregivers. Pictures were taken of areas in the home where: (i) caregiving activities occurred, (ii) VAD or medical supplies were kept, and (iii) home adaptations were made for VAD care. Pictures were described in written detail and analysed. A qualitative descriptive approach was used for analysis. The sample consisted of 10 dyads, with mostly spousal relationships (60%) between male patients (60%) and female caregivers (80%). Three themes were identified: (i) Evolution of Caregiving and Support: Patients gain independence, but caregivers are still needed, (ii) Adapting the Home Environment: Changes are focused on functional needs, and (iii) Hidden Dangers: Illumination of safety concerns by photographs. Assistance with bathing, driveline care, and medication management were common caregiving tasks. Most home adaptations occurred in the bathroom and bedroom including sleeping recliners, shower chairs, removable shower heads, and hanging hooks to hold VAD equipment. Safety hazards included minimal space for safe ambulation, infection risk, and home-made adaptations to the environment. Conclusions These findings describe key home caregiving tasks, home adaptations, and safety concerns that require further education and support. Utilizing pictures may be a feasible method for assessing VAD teaching, caregiving needs, and identifying potential risks.

Use of technology in older adult populations is growing, therefore it is important to understand opportunities for healthcare initiatives that support older adults using technology. The aim of the pilot study was to test Caregiver Support, a self-care and social support intervention, for caregivers of persons living with heart failure (N=24). Originally, the protocol was designed with in-person visits. We expected this option to reduce participant burden: the caregiver would not have to travel, and the interventionist would gain more insight about the home context to aid with intervention delivery. However, due to the COVID-19 pandemic, it became necessary to conduct the visits virtually. All participants completed the 5-component intervention via virtual meeting and there were no dropouts related to technology use. When asked about the virtual modality, participants emphasized the flexibility of virtual meetings. In summary, the intervention visits conducted virtually were perceived as a caregiver-centered approach.

Background: Heart failure (HF) affects ~6 million people in the US and is associated with marked morbidity and adverse clinical outcomes. Among HF patients, fatigue is common and distressing symptoms that significantly impacts patient quality of life and function. Current literature primarily examines fatigue as a single and generalized symptom. Fatigue is hypothesized, however, to manifest as multiple types, with both general and exertional components. Unique subtypes of fatigue in HF may require differential assessment and treatment to improve patient-reported and clinical outcomes. Objective: To identify unique fatigue subtypes in persons with prevalent HF in the Atherosclerosis Risk in Communities (ARIC) study. Methods: We performed a cross-sectional analysis of 1,114 participants at Visit 5 (2011-13) of the ARIC study with prevalent HF. We used the Modified Medical Research Council Breathlessness scale obtained at Visit 5 to assess exertional fatigue, and the PROMIS fatigue scale obtained at the 1 st semi-annual follow up after Visit 5 (2012-2014) to assess general fatigue. We used latent class analysis to identify unique subtypes of fatigue based on patterns of responses to each of the scales. Results: Participants were 54% female and 38% Black with a mean age of 77 ± 5.5. We identified four latent classes of fatigue symptoms: 1) low/no fatigue, 2) high exertional & moderate general fatigue, 3) high general & low exertional fatigue, and 4) high general & exertional fatigue. The low/no fatigue class was the largest with an estimated 35.2% of the sample. The high exertional & moderate general class and the high general & low exertional class had similar estimated prevalences (23.5% and 23.8%, respectively). The high general & high exertional class was the smallest with an estimated 17.4% prevalence. Conclusions: We identified unique subtypes of fatigue in HF patients that have not been previously described in the literature. Future studies should examine the relationship between these latent classes of fatigue type and important patient-reported and clinical HF outcomes. Understanding these fatigue types and their relationships to outcomes may enhance our understanding of the symptom experience and inform prognostication in patients with HF.

Background: Caregivers of persons with heart failure must manage high levels of patient health care utilization, treatment complexity and often unpredictable stressors associated with intermittent symptom exacerbations and mortality. Interventions have often focused on the needs of the person with HF, not the caregiver. Therefore, we developed an intervention using human-centered design to provide caregiver-targeted support for this population. Objective: Pilot test the feasibility and gauge initial effect size of the Caregiver Support intervention to improve quality of life (mental and physical), caregiver burden, and self-efficacy among family caregivers from baseline to 16 weeks. Methods: The intervention includes five individualized, nurse-led sessions over 10 weeks conducted remotely (due to COVID-19). Intervention components focus on 1) nature of caregiving, 2) life purpose, 3) co-development of an action plan to address caregiver goals to reduce caregiver burden and improve caregiver well-being, 4) exploration of social and community resources to support unmet needs, and 5) building a sustainability plan for addressing future caregiver needs. We tested our approach in a randomized waitlist control pilot trial (N=35) from August 2020 through March 2022. We calculated enrollment and retention rates, described acceptability, and computed intervention effect sizes from baseline to 16 weeks. Results: 35 out of 101 (35%) eligible caregivers enrolled and were majority female (93.3%), White (60%) and spousal caregivers (63.3%). Average age was 59.4 ± 16.6 years. Overall retention was 69%. All intervention participants completed the five core components, reporting high levels of satisfaction and acceptability of activities. Between-group effect sizes (n=21) at 16 weeks suggest improvement in the mental health component of quality of life, caregiver burden, and self-efficacy (effect sizes 0.88, 0.31, and 0.63, respectively). Conclusion: Caregivers found Caregiver Support acceptable and study methods were feasible, despite challenges to engaging during the COVID-19 pandemic. Findings provide foundational evidence that this person-centered behavioral intervention can contribute to enhanced caregiver outcomes.

Sarcoidosis is a systemic disease characterized by granulomatous inflammation. Cardiac involvement is associated with increased morbidity. However, differences in clinical characteristics and outcomes based on initial sarcoidosis organ manifestation in patients with cardiac sarcoidosis (CS) have not been described.A retrospective cohort of 252 patients with CS at an urban, quaternary medical center was studied. Presentation, treatment and outcomes of de novo CS and prior ECS groups were compared. Survival free of primary composite outcome (left ventricular assist device implantation, orthotopic heart transplantation (OHT), or death) was assessed.There were 124 de novo CS patients and 128 with prior ECS at time of CS diagnosis. De novo CS patients were younger at CS diagnosis (p = 0.020). De novo CS patients had a more advanced cardiac presentation: lower left ventricular ejection fraction (LVEF) (p 0.001), more frequent sustained ventricular arrhythmias (VA) (p = 0.001), and complete heart block (p = 0.001). During follow-up, new VA (p 0.001), ventricular tachycardia ablation (p 0.001), and OHT (p = 0.003) were more common in the de novo CS group. Outcome free survival was significantly shorter for de novo CS patients (p = 0.005), with increased hazard of primary composite outcome (p = 0.034) and development of new VA (p = 0.027) when compared to ECS patients. Overall mortality was similar between groups.Patients presenting with CS as their first recognized organ manifestation of sarcoidosis have an increased risk of adverse cardiac outcomes as compared to those with a prior history of ECS. Improved awareness and diagnosis of CS is warranted for earlier recognition.

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

Purpose Persons living with a ventricular assist device (VAD) and their caregivers experience unique stresses however, caregiver experience is inconsistently assessed, so little is known about caregiver contributions to disease and device management, or the effects they experience. The purpose of this mixed methods study is to describe the context of VAD caregiving and explore burdensome elements of caregiving. Methods We recruited VAD patients and caregivers (N=14, 7 dyads) who had been implanted within the past 3-12 months, or had experienced a recent hospital-to-home transition (within 60 days). We administered surveys and conducted semi-structured qualitative interviews from patient and caregiver perspectives. Analysis includes descriptive statistics and thematic analysis of interviews. Results Mean age of VAD patients and caregivers was 55.7 ± 14.2 years and 53.1± 15.8 years, respectively. Most patients were male (75%) and most caregivers were female (87.5%), and most caregiver-patient dyads were spousal (85.7%). Mean caregiver burden (short-form Zarit Burden Interview) score was 12.4 ± 4.4. From qualitative interviews, the areas of the home most commonly modified to support patient needs or make caregiving tasks easier were bathrooms (i.e. railings, shower chairs) and the bedroom (sleeping arrangements). The most common caregiving tasks reported were 1)“monitoring” (i.e. for complications, anticipating needs), 2) managing medications, equipment and appointments, 3) helping with bathing, and 4) changing the driveline dressing. Even when caregivers reported low burden quantitatively, caregivers expressed that they felt overwhelmed with the complexity and intensity of caregiving responsibilities on themselves and their relationships, like a “ball and chain” or like a “cascade that effects everybody.” Conclusion These preliminary findings provide new data on the changes caregivers and patients make to their home environments, and elucidate a potential mismatch between quantitative and qualitative assessments of care burden. Both of these findings require further investigation. Resources to support home changes and living at home following VAD implant may be insufficient to address needs. It may also be helpful to implement more frequent, formal evaluation of caregiving needs and burden using additional instruments that capture elements of caregiving that are unique to the VAD context.

Background Left ventricular assist devices (LVADs) improve quality of life in end-stage heart failure but can cause serious complications such as infections with driveline infection causing significant morbidity and mortality. Objectives The purpose of this systematic literature review is to synthesize the literature to determine variables associated with driveline infection and seek opportunities to improve nursing management of LVAD drivelines. Methods A systematic literature review was performed. The evidence was synthesized using the Johns Hopkins Nursing Evidence-Based Practice tools and the Chain of Infection epidemiological framework. Results Thirty-four studies focused on vulnerable host, portal of entry, and causative organism aspects of the Chain of Infection. Increased BMI, younger age, exposed driveline velour showed increased risk of infection and driveline dressing protocol change showed lower risk of infection. Conclusions Although some risk factors for infection were identified, evidence is still limited. Nurses are uniquely positioned to improve driveline management, disrupting the chain of infection.

Introduction Infection in patients with left ventricular assist device is a leading cause of morbidity and mortality resulting in increased risk for additional complications such as bleeding, thrombosis and stroke. The purpose of this quality improvement project was to reduce driveline infections through implementation of an evidence-based bundled dressing kit and education to nursing staff. Hypothesis Education of nurses and implementation of a standardized kit for driveline dressing changes will reduce driveline infection rates and improve nurse knowledge, satisfaction and confidence with infection prevention practices. Methods A multifocal intervention to improve standardization of care related to LVAD driveline care practices was initiated in 2018 on 5 nursing units. A multidisciplinary group contributed to creation of a driveline dressing kit. Nursing unit champions were identified and educated regarding driveline care knowledge and dressing change techniques. The institutional policy was updated to reflect new practices. In-person teaching and online educational videos were used to deliver education to nursing staff from the 5 units. A knowledge survey was used to test nursing knowledge immediately following the initial education and was repeated after 6 months to assess knowledge retention. Nurses were additionally asked to respond to questions regarding satisfaction and confidence with practice changes at the 6-month follow-up. Results An overall reduction in driveline infection rate from 35.7% in the 8 months prior to implementation of the DL dressing kit to 12.5% in the 8 months post implementation. Of the champion group, 26 nurses received 100% on their knowledge assessment. After in-servicing, 50% of floor nurses scored higher than 90% on their knowledge assessment. After 6 months, 57% of floor nurses scored greater than 90%. Of respondents, 93.6% agreed or strongly agreed that they “feel confident to expertly provide driveline dressing changes to LVAD patients using the new kit,” and 89.4% agreed or strongly agreed that they “feel confident that I can teach patients and their caregivers on how to use the new driveline dressing kit.” Conclusions While we have seen a great improvement in the rate of DLI, there are continued needs to reinforce nursing knowledge and skills related to driveline care and dressing change practices. Ongoing monitoring of driveline infection rates and further efforts to establish best practices are needed.