Shirin O. Hiatt

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.

Provision of Morning Care to Nursing Home Residents With Dementia: Opportunity for Improvement?

Significant contact between nursing staff and nursing home residents with dementia occurs during assistance with activities of daily living during morning care; however, the content and process of morning care have received little attention in the scientific literature. To better understand the morning care process and its role in generation of pain symptoms, 51 videotaped episodes of morning care involving 17 nursing home residents from 3 long-term care facilities were coded and analyzed; each resident had a diagnosis of dementia and concern about possible pain during assistance with activities of daily living. The typical morning care episode involved performance of multiple activities of daily living during a short period of time, during which pain stimulation and expression occurred frequently. Much could be done to make morning care more an activity to be enjoyed rather than a task to be completed.

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.

Trajectories of heart failure self-care management and changes in quality of life

Introduction: Heart failure patients vary considerably in their self-care management behaviors (i.e. recognizing and responding to symptoms). The goal of this study was to identify unique patterns of change in heart failure self-care management and quantify associations between self-care management and quality of life (HRQOL) over time. Methods: A prospective cohort study among adults with symptomatic heart failure was designed to measure changes in self-care management (Self-care of Heart Failure Index) and HRQOL (Kansas City Cardiomyopathy Questionnaire) over six months. Growth mixture modeling was used to identify unique trajectories of change in self-care management. Results: The mean age (n=146) was 57 years, 70% were male, and 41% had class II heart failure. Two trajectories of self-care management were identified (entropy = 0.88). The larger trajectory (73.3%) was characterized by a significant decline in self-care management over time and no change in HRQOL. The smaller trajectory (26.7%) was characterized by marked improvements in self-care management and HRQOL. Changes in heart failure self-care management occurred in the absence of change in routine self-care maintenance behaviors, functional classification, and physical and psychological symptoms. Patients with greater physical symptoms at enrollment (odds ratio (OR) =1.04, p=0.037), larger left ventricles (OR=1.50, p=0.044), and ischemic heart failure (OR=3.84, p=0.014) were more likely to have the declining trajectory of self-care management. Higher levels of depression at enrollment were associated with reduced odds of having a decline in self-care management over time (OR=0.85, p<0.001). Conclusions: There are unique and clinically-relevant trajectories of change in heart failure self-care management that are associated with differences in HRQOL.

Validity and reliability of the European Heart Failure Self-care Behavior Scale among adults from the United States with symptomatic heart failure

Background: Heart failure (HF) self-care is an important component of disease management and the focus of many interventions. Aim: The aim of this study was to evaluate the validity and reliability of the nine-item European HF Self-care Behavior Scale (EHFScB-9) in a sample of 200 adults from the USA with symptomatic HF. Methods: Psychometric tests included item and confirmatory factor analyses, convergent and discriminant validity, and internal consistency. Results: Item-total correlations ranged from 0.25 to 0.65. Many fit indices for the EHFScB-9 and the four-item consulting behaviors scale reached thresholds of acceptability. As expected, the EHFScB-9 was associated with other measures of HF self-care but not with quality-of-life. Coefficient α was 0.80 for the EHFScB-9 and 0.85 for the consulting behaviors subscale. Conclusion: The EHFScB-9 was a valid and reliable measure of HF self-care among English-speaking US adults with symptomatic HF.

Couple perceptions of fibromyalgia symptoms: The role of communication

Summary Significant variability was found across couples in how they rated symptom severity and how much incongruence existed within couples. Interpersonal factors were significantly associated with patient–spouse incongruence. Abstract The objectives of the current study were to describe fibromyalgia patient–spouse incongruence regarding patient pain, fatigue, and physical function; and to examine the associations of individual and interpersonal factors with patient–spouse incongruence. Two hundred four fibromyalgia patients and their coresiding partners rated the patient’s symptoms and function. Multilevel modeling revealed that spouses, on average, rated patient fatigue significantly lower than patients. Couple incongruence was not significantly different from zero, on average, for pain severity, interference, or physical function. However, there was significant variability across couples in how they rated the severity of symptoms and function, and how much incongruence existed within couples. Controlling for individual factors, patient and spouse reports of communication problems were significantly associated with levels of couple incongruence regarding patient fatigue and physical function, albeit in opposing directions. Across couples, incongruence was high when patients rated communication problems as high; incongruence was low when spouses rated communication problems as high. An important within‐couple interaction was found for pain interference, suggesting that couples who are similar on level of communication problems experience low incongruence; those with disparate ratings of communication problems experience high incongruence. Findings suggest the important roles of spouse response and the patient’s perception of how well the couple is communicating. Couple‐level interventions targeting communication or other interpersonal factors may help to decrease incongruence and lead to better patient outcomes.

Profiles of self-care management versus consulting behaviors in adults with heart failure

Introduction: Patients with heart failure (HF) vary in their ability to respond to symptoms when they occur. The goal of this study was to classify common patterns of symptom response behaviors among adults with HF and identify biobehavioral determinants thereof. Methods: Consulting behaviors (i.e. contacting a provider for guidance) were measured using the European Heart Failure Self-care Behavior Scale consulting behaviors subscale, and self-care management (i.e. recognizing and engaging in self-initiated treatment of symptoms) was measured with the Self-Care of HF Index self-care management scale in a prospective cohort study. Latent class mixture modeling was used to identify distinct profiles of consulting and of self-care management behaviors. Results: The mean age (n=146) was 57±13 years, 30% were female, and 59% had class III/IV HF. Two distinct profiles of consulting behaviors (novice and expert) and three distinct profiles of self-care management (novice, inconsistent and expert) were identified. There was a weak association between profiles of consulting behaviors and self-care management (Kendall’s tau-b=0.211). Higher levels of anxiety were associated with worse consulting behaviors (β=1.67±0.60) and worse self-care management (β= −5.82±3.12) and lower odds of exhibiting expert level consulting behaviors (odds ratio (OR)=0.50; 95% confidence interval (CI)=0.26–0.95) and self-care management (OR=0.47; 95% CI=0.24–0.92) (all p<0.05). Higher levels of physical symptoms were associated with better self-care management (β=0.50±0.12; OR =1.02, 95% CI=1.00–1.05; both p<0.05). Conclusions: Expertise in consulting behaviors does not necessarily confer expertise in symptom self-care management and vice versa. Physical and psychological symptoms are strong determinants of symptom response behaviors.

Physical and Psychological Symptom Profiling and Event-Free Survival in Adults With Moderate to Advanced Heart Failure

&NA;Heart failure (HF) is a heterogeneous symptomatic disorder. The goal of this study was to identify and link common profiles of physical and psychological symptoms to 1-year event-free survival in adults with moderate to advanced HF. Methods:Multiple valid, reliable, and domain-specific measures were used to assess physical and psychological symptoms. Latent class mixture modeling was used to identify distinct symptom profiles. Associations between observed symptom profiles and 1-year event-free survival were quantified using Cox proportional hazards modeling. Results:The mean age of the participants (n = 202) was 57 ± 13 years, 50% were men, and 60% had class III/IV HF. Three distinct profiles, mild (41.7%), moderate (30.2%), and severe (28.1%), that captured a gradient of both physical and psychological symptom burden were identified (P < .001 for all comparisons). Controlling for the Seattle HF Score, adults with the moderate symptom profile were 82% more likely (hazard ratio, 1.82; 95% confidence interval, 1.07–3.11; P = .028) and adults with the severe symptom profile were more than twice as likely (hazard ratio, 2.06; 95% confidence interval, 1.21–3.52; P = .001) to have a clinical event within 1 year than patients with the mild symptom profile. Conclusions:Profiling patterns among physical and psychological symptoms identifies HF patient subgroups with significantly worse 1-year event-free survival independent of prognostication based on objective clinical HF data.

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.