Julie T. Bidwell

Patterns and predictors of patient and caregiver engagement in heart failure care: A multi-level dyadic study

BACKGROUND 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 patient-caregiver dyads with respect to patient and caregiver contributions to heart failure self-care, 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 clinical programs that involve heart failure dyads should tailor strategies to take into consideration these distinct archetypes and their attributes.

Determinants of Heart Failure Self‐Care Maintenance and Management in Patients and Caregivers: A Dyadic Analysis

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 a HF dyad manages the patients care together. The purpose of this study was to identify determinants of patient and caregiver contributions to HF self-care maintenance (daily adherence and symptom monitoring) and management (appropriate recognition and response to symptoms), utilizing an approach that controls for dyadic interdependence. This was a secondary analysis of cross-sectional data from 364 dyads of Italian HF patients and caregivers. Multilevel modeling was used to identify determinants of HF self-care within patient-caregiver dyads. Patients averaged 76.2 (SD = 10.7) years old, and a slight majority (56.9%) was male, whereas caregivers averaged 57.4 (SD = 14.6) years old, and about 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. Significant individual and dyadic determinants of self-care maintenance and self-care management included 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 optimize outcomes.

A Dyadic Approach to Managing Heart Failure With Confidence

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.

Blunted Responses to Heart Failure Symptoms in Adults With Mild Cognitive Dysfunction

Introduction:Mild cognitive dysfunction is common among adults with heart failure (HF). We hypothesized that mild cognitive dysfunction would be associated with poor HF self-care behaviors, particularly patients’ ability to respond to symptoms. Methods:We analyzed data on 148 participants in an observational study of symptoms in adults with moderate-to-advanced HF. Mild cognitive dysfunction was measured with the Montreal Cognitive Assessment (MoCA; range, 0–30), using cutoff scores for the general population (26) and for adults with cardiovascular disease (24). Heart failure self-care management (evaluation and response to HF symptoms) was measured with the Self-care of HF Index, and consulting behaviors (calling a provider when symptoms occur) were measured using the European HF Self-care Behavior Scale-9. Generalized linear modeling and hierarchical linear modeling were used to quantify the relationship between MoCA cutoff scores and indices of HF self-care. Results:The mean age of the sample was 57 ± 12 years, 61.5% were men, and 58.8% had class III/IV HF; the mean left ventricular ejection fraction was 28% ± 12%. Using MoCA scores of 26 and 24, respectively, 33.1% and 14.2% of the sample had mild cognitive dysfunction. Controlling for common confounders, participants with MoCA scores lower than 26 reported self-care comparable with that of participants with MoCA scores of 26 or higher. Participants with MoCA scores lower than 24, however, reported 21.5% worse self-care management (P = 0.014) and 51% worse consulting behaviors (P < 0.001) compared with participants with MoCA scores of 24 or higher. Conclusions: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.

Caregiver Well-being and Patient Outcomes in Heart Failure: A Meta-analysis

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.

Quality of Life, Depression, and Anxiety in Ventricular Assist Device Therapy: Longitudinal Outcomes for Patients and Family Caregivers

Background: Patients who receive ventricular assist device (VAD) therapy typically rely on informal caregivers (family members or friends) to assist them in managing their device. Objective: The purpose of this study is to characterize changes in person-oriented outcomes (quality of life [QOL], depression, and anxiety) for VAD patients and their caregivers together from pre-implantation to 3 months post-implantation. Methods: This was a formal interim analysis from an ongoing prospective study of VAD patients and caregivers (n = 41 dyads). Data on person-oriented outcomes (QOL: EuroQol 5 Dimensions Visual Analog Scale; depression: Patient Health Questionnaire-8; anxiety: Brief Symptom Inventory) were collected at 3 time points (just prior to implantation and at 1 and 3 months post-implantation). Trajectories of change for patients and caregivers on each measure were estimated using latent growth modeling with parallel processes. Results: Patients’ QOL improved significantly over time, whereas caregiver QOL worsened. Depression and anxiety also improved significantly among patients but did not change among caregivers. There was substantial variability in change on all outcomes for both patients and their caregivers. Conclusions: This is the first quantitative study of VAD patient-caregiver dyads in modern devices that describes change in person-oriented outcomes from pre-implantation to post-implantation. This work supports the need for future studies that account for the inherent relationships between patient and caregiver outcomes and examine variability in patient and caregiver responses to VAD therapy.

Patterns of self-care and clinical events in a cohort of adults with heart failure: 1 year follow-up

Background: Heart failure (HF) self‐care is important in reducing clinical events (all‐cause mortality, emergency room visits and hospitalizations). HF self‐care behaviors are multidimensional and include maintenance (i.e. daily adherence behaviors), management (i.e. symptom response behaviors) and consulting behaviors (i.e. contacting a provider when appropriate). Across these dimensions, patterns of successful patient engagement in self‐care have been observed (e.g. successful in one dimension but not in others), but no previous studies have linked patterns of HF self‐care to clinical events. Objectives: To identify patterns of self‐care behaviors in HF patients and their association with clinical events. Methods: This was a prospective, non‐experimental, cohort study. Community‐dwelling HF patients (n = 459) were enrolled across Italy, and clinical events were collected one year after enrollment. We measured dimensions of self‐care behavior with the Self‐Care of HF Index (maintenance, management, and confidence) and the European HF Self‐care Behavior Scale (consulting behaviors). We used latent class mixture modeling to identify patterns of HF self‐care across dimensions, and Cox proportional hazards modeling to quantify event‐free survival over 12 months of follow‐up. Results: Patients (mean age 71.8 ± 12.1 years) were mostly males (54.9%). Three patterns of self‐care behavior were identified; we labeled each by their most prominent dimensional characteristic: poor symptom response, good symptom response, and maintenance‐focused behaviors. Patients with good symptom response behaviors had fewer clinical events compared with those who had poor symptom response behaviors (adjusted hazard ratio = 0.66 [0.46–0.96], p = 0.03). Patients with poor symptom response behaviors had the most frequent clinical events. Patients with poor symptom response and those with maintenance‐focused behaviors had a similar frequency of clinical events. Conclusions: 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.

Caregiver determinants of patient clinical event risk in heart failure

Background: Preventing hospitalization and improving event-free survival are primary goals of heart failure (HF) treatment according to current European Society of Cardiology guidelines; however, substantial uncertainty remains in our ability to predict risk and improve outcomes. Although caregivers often assist patients to manage their HF, little is known about their influence on clinical outcomes. Aims: To quantify the influence of patient and caregiver characteristics on patient clinical event risk in HF. Methods: This was a secondary analysis of data using a sample of Italian adults with HF and their informal caregivers (n = 183 patient–caregiver dyads). HF patients were followed over 12 months for the following clinical events: hospitalization for HF, emergency room visit for HF or all-cause mortality. Influence of baseline caregiver- and patient-level factors (patient and caregiver age; dyad relationship type; patient New York Heart Association (NYHA) Class, cognition, and comorbidities; and caregiver strain, mental health status, and contributions to HF self-care) on patient risk of death or hospitalization/emergency room use was quantified using Cox proportional hazards regression. Results: Over the course of follow up, 32.8% of patients died, 19.7% were hospitalized for HF and 10.4% visited the emergency room. Higher caregiver strain, better caregiver mental health status and greater caregiver contributions to HF self-care maintenance were associated with significantly better event-free survival. Worse patient functional class and greater caregiver contributions to patient self-care management were associated with significantly worse patient event-free survival. Conclusion: Considering caregiving factors together with patient factors significantly increases our understanding of patient clinical event risk in HF.

Patterns, relevance and predictors of heart failure dyadic symptom appraisal

Background: Caregivers are thought to play a major role in helping patients first appraise and then respond to heart failure (HF) symptoms. Aims: The aims of this study were to: (a) characterise distinct patterns of HF patient–caregiver dyads with respect to symptom appraisal; and (b) link dyadic symptom appraisal to contributions to self-care and caregiver strain. Methods and results: A cross-sectional dyadic descriptive design was used to capture patient and caregiver appraisal of patient HF symptoms (i.e. dyspnoea, fatigue, pain and anxiety). Contributions to self-care were measured using patient and caregiver versions of the Self-Care of Heart Failure Index and the European Heart Failure Self-care Behaviour Scale. Caregiver strain was measured using the Multidimensional Caregiver Strain Index. Multilevel and latent class mixture modelling (LCMM) were used to examine distinct patterns of symptom appraisal. Two patterns of dyadic symptom appraisal were identified: one pattern (n = 24; 38.7%) wherein caregivers appraised patients’ symptoms as being significantly worse than did the patient (labelled as ‘Caregiver > Patient’); and a second pattern (n = 38; 61.3%) wherein patients appraised their symptoms similar to or worse than that as perceived by their caregiver (labelled as ‘Patient ⩾ Caregiver’). Dyads in the Caregiver > Patient pattern of symptom appraisal reported much better contributions to self-care (symptom response behaviours only), but also greater caregiver strain, compared with dyads in the Patient ⩾ Caregiver pattern. Greater patient depression and older caregiver age were significant determinants of fitting the Patient ⩾ Caregiver pattern. Conclusion: Differences in how HF patients and caregivers appraise symptoms together must be taken into consideration when examining contributions to HF care and caregiver outcomes.

Background and design of the profiling biobehavioral responses to mechanical support in advanced heart failure study

Background:Unexplained heterogeneity in response to ventricular assist device (VAD) implantation for the management of advanced heart failure impedes our ability to predict favorable outcomes, provide adequate patient and family education, and personalize monitoring and symptom management strategies. The purpose of this article was to describe the background and the design of a study entitled “Profiling Biobehavioral Responses to Mechanical Support in Advanced Heart Failure” (PREMISE). Study Design and Methods:PREMISE is a prospective cohort study designed to (1) identify common and distinct trajectories of change in physical and psychological symptom burden; (2) characterize common trajectories of change in serum biomarkers of myocardial stress, systemic inflammation, and endothelial dysfunction; and (3) quantify associations between symptoms and biomarkers of pathogenesis in adults undergoing VAD implantation. Latent growth mixture modeling, including parallel process and cross-classification modeling, will be used to address the study aims and will entail identifying trajectories, quantifying associations between trajectories and both clinical and quality-of-life outcomes, and identifying predictors of favorable symptom and biomarker responses to VAD implantation. Conclusions:Research findings from the PREMISE study will be used to enhance shared patient and provider decision making and to shape a much-needed new breed of interventions and clinical management strategies that are tailored to differential symptom and pathogenic responses to VAD implantation.