Many individuals living with heart failure (HF) rely on unpaid support from their partners, family members, friends, or neighbors as caregivers to help manage their chronic disease. Given the advancements in treatments and devices for patients with HF, caregiving responsibilities have expanded in recent decades to include more intensive care for increasingly precarious patients with HF—tasks that would previously have been undertaken by healthcare professionals in clinical settings. The specific tasks of caregivers of patients with HF vary widely based on the patient’s symptoms and comorbidities, the relationship between patient and caregiver, and the complexity of the treatment regimen. Effects of caregiving on the caregiver and patient range from physical and psychological to financial. Therefore, it is critically important to understand the needs of caregivers to support the increasingly complex medical care they provide to patients living with HF. This scientific statement synthesizes the evidence pertaining to caregiving of adult individuals with HF in order to (1) characterize the HF caregiving role and how it changes with illness trajectory; (2) describe the financial, health, and well-being implications of caregiving in HF; (3) evaluate HF caregiving interventions to support caregiver and patient outcomes; (4) summarize existing policies and resources that support HF caregivers; and (5) identify knowledge gaps and future directions for providers, investigators, health systems, and policymakers.

Disease self-management is a critical component of maintaining clinical stability for patients with chronic illness. This is particularly evident in the context of heart failure (HF), which is the leading cause of hospitalization for older adults. HF self- management, commonly known as HF self-care, is often performed with the support of informal caregivers. However, little is known about how HF dyads manage the patient’s care together. The purpose of this study was to identify determinants of patient and caregiver contributions to HF self-care maintenance (i.e., daily adherence and symptom monitoring) and management (i.e., appropriate recognition & response to symptoms), utilizing an approach that controls for dyadic interdependence. This was a secondary analysis of cross-sectional data from 364 Italian HF patients and caregivers. Multilevel modeling was used to identify determinants of HF self-care within patient-caregiver dyads. Patients were 76.2 (SD=10.7) years, a slight majority (56.9%) was male, while caregivers were 57.4 (SD=14.6) years, and fewer than half (48.1%) were male. Most caregivers were adult children (48.4%) or spouses (32.7%) of patients. Both patients and caregivers reported low levels of HF maintenance and management behaviors. Several significant individual and dyadic determinants of self-care maintenance and self-care management were identified, including gender, quality of life, comorbid burden, impaired ADLs, cognition, hospitalizations, HF duration, relationship type, relationship quality, and social support. These comprehensive dyadic models assist in elucidating the complex nature of patient-caregiver relationships and their influence on HF self-care, leading to more effective ways to intervene and maximize outcomes.

Background: Despite evidence from the broader caregiving literature about the interdependent nature of the caregiving dyad, few studies in heart failure (HF) have examined associations between caregiver and patient characteristics. Objective: The aim of this study is to quantitatively synthesize the relationships between caregiver well-being and patient outcomes. Methods: The MEDLINE, PsycINFO, and CINAHL databases were searched for studies of adult HF patients and informal caregivers that tested the relationship between caregiver well-being (perceived strain and psychological distress) and patient outcomes of interest. Summary effects across studies were estimated using random effects meta-analysis following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Results: A total of 15 articles meeting inclusion criteria were included in the meta-analysis. Taking into account differences across studies, higher caregiver strain was associated significantly with greater patient symptoms (Fisher z = 0.22, P < .001) and higher caregiver strain was associated significantly with lower patient quality of life (Fisher z = −0.36, P < .001). Relationships between caregiver psychological distress and both patient symptoms and quality of life were not significant. Although individual studies largely found significant relationships between worse caregiver well-being and higher patient clinical event-risk, these studies were not amenable to meta-analysis because of substantial variation in event-risk measures. Conclusions: Clinical management and research approaches that acknowledge the interdependent nature of the caregiving dyad hold great potential to benefit both patients and caregivers.

Self-care is significantly associated with clinical events. Routine assessment, mitigation of barriers, and interventions targeting self-care are needed to reduce clinical events in HF patients.

A B S T R A C TBackground: Heart failure is a burdensome clinical syndrome, and patients and their caregivers are responsible for the vast majority of heart failure care. Objectives: This study aimed to characterize naturally occurring archetypes of patientcaregiver dyads with respect to patient and caregiver contributions to heart failure selfcare, and to identify patient-, caregiver-and dyadic-level determinants thereof. Design: Dyadic analysis of cross-sectional data on patients and their caregivers. Setting: Outpatient heart failure clinics in 28 Italian provinces. Participants: 509 Italian heart failure patients and their primary caregivers. Methods: Multilevel and mixture modeling were used to generate dyadic averages and incongruence in patient and caregiver contributions to heart failure self-care and identify common dyadic archetypes, respectively. Results: Three distinct archetypes were observed. 22.4% of dyads were labeled as novice and complementary because patients and caregivers contributed to different aspects of heart failure self-care that was generally poor; these dyads were predominantly older adults with less severe heart failure and their adult child caregivers. 56.4% of dyads were labeled as inconsistent and compensatory because caregivers reported greater contributions to the areas of self-care most insufficient on the part of the patients; patients in these dyads had the highest prevalence of hospitalizations for heart failure in the past year and the fewest limitations to performing activities of daily living independently. Finally, 21.2% of dyads were labeled as expert and collaborative because of high contributions to all aspects of heart failure self-care, the best relationship quality and lowest caregiver strain compared with the other archetypes; patients in this archetype were likely the sickest because they also had the worst heart failure-related quality of life. Conclusion: Three distinct archetypes of dyadic contributions to heart failure care were observed that represent a gradient in the level of contributions to self-care, in addition to different approaches to working together to manage heart failure. Interventions and

Background: The majority of heart failure (HF) self-care research remains focused on patients, despite the important involvement of family caregivers. Although self-care confidence has been found to play an important role in the effectiveness of HF self-care management on patient outcomes, no known research has examined self-care confidence within a dyadic context. Objective: The purpose of this study was to identify individual and dyadic determinants of self-care confidence in HF care dyads. Methods: Multilevel modeling, which controls for the interdependent nature of dyadic data, was used to examine 329 Italian HF dyads (caregivers were either spouses or adult children). Results: Both patients and caregivers reported lower-than-adequate levels of confidence, with caregivers reporting slightly higher confidence than patients. Patient and caregiver levels of confidence were significantly associated with greater patient-reported relationship quality and better caregiver mental health. Patient confidence in self-care was significantly associated with patient female gender, nonspousal care dyads, poor caregiver physical health, and low care strain. Caregiver confidence to contribute to self-care was significantly associated with poor emotional quality of life in patients and greater perceived social support by caregivers. Conclusions: Findings are supportive of the need for a dyadic perspective of HF self-care in practice and research as well as the importance of addressing the needs of both members of the dyad to maximize optimal outcomes for both.

BackgroundTreatment of heart failure (HF) is particularly complex in the presence of comorbidities. We sought to identify and associate comorbidity profiles with inpatient outcomes during HF hospitalizations.MethodsLatent mixture modeling was used to identify common profiles of comorbidities during adult hospitalizations for HF from the 2009 Nationwide Inpatient Sample (n = 192,327).ResultsMost discharges were characterized by "common" comorbidities. A "lifestyle" profile was characterized by a high prevalence of uncomplicated diabetes, hypertension, chronic pulmonary disorders and obesity. A "renal" profile had the highest prevalence of renal disease, complicated diabetes, and fluid and electrolyte imbalances. A "neurovascular" profile represented the highest prevalence of cerebrovascular disease, paralysis, myocardial infarction and peripheral vascular disease. Relative to the common profile, the lifestyle profile was associated with a 15% longer length of stay (LOS) and 12% greater cost, the renal profile was associated with a 30% higher risk of death, 27% longer LOS and 24% greater cost, and the neurovascular profile was associated with a 45% higher risk of death, 34% longer LOS and 37% greater cost (all p < 0.001).ConclusionsComorbidity profiles are helpful in identifying adults at higher risk of death, longer length of stay, and accumulating greater costs during hospitalizations for HF.

A disease-specific cutoff for mild cognitive dysfunction reveals marked differences patients' ability to recognize and respond to HF symptoms when they occur. Adults with HF and mild cognitive dysfunction are a vulnerable patient group in great need of interventions that complement HF self-care.