Role of Uncertainty in Illness and Coping Strategies in Advance Directive Completion in Patients With End-stage Liver Disease.

OBJECTIVE: We examined the associations among advance directives (ADs) completion, coping, uncertainty in illness, and optimism and pessimism in patients with end-stage liver disease (ESLD). BACKGROUND: Although associations among ADs, coping, and uncertainty have been studied in patients with other life-limiting illnesses, these concepts have not been studied together in patients with ESLD. PATIENTS AND METHODS: Patients were recruited at 2 health care institutions as part of a larger prospective study. They were enrolled if they had a diagnosis of nonhepatocellular carcinoma ESLD, Sodium Model for End-Stage Liver Disease ≥15, and no prior history of liver transplantation. Uncertainty, coping, optimism, and pessimism were assessed using the Uncertainty in Illness Scale for Adults, Revised Ways of Coping Checklist, and Life Orientation Test-revised. AD documentation at the time of study enrollment was retrospectively extracted from patient medical records. RESULTS: In the sample [N = 181; median age = 57 y, 115 (64%) males], male sex [odds ratio (OR) = 4.66; 95% CI: 1.53, 14.17], being listed or under evaluation for liver transplantation (OR = 3.09; 95% CI: 1.10, 8.67), greater Sodium Model for End-Stage Liver Disease scores (OR = 1.10; 95% CI: 1.01, 1.20), and greater uncertainty (OR = 1.04; 95% CI: 1.01, 1.07) were positively associated with AD documentation. Higher coping avoidance was negatively associated with AD documentation (OR = 0.915; 95% CI: 0.840, 0.997). CONCLUSIONS: Clinicians should consider the role of uncertainty and coping measures to improve patient-specific advance care planning conversations and expand opportunities for all patients with ESLD to file an AD, especially women and patients not listed or under evaluation for transplantation.

Informal Family Care Partner Well-Being Is Diminished in End-Stage Liver Disease.

BACKGROUND: Chronic liver disease is a significant global neglected public health problem. End-stage liver disease is associated with substantial symptom complexity, disability, and care needs that require assistance from informal family care partners. Research on these care partners' caregiver burden or strain, symptoms, and quality of life is sparse and has not focused on these variables as co-occurring or in the context of the quality of the relationship care partners have with the patients. OBJECTIVES: The purpose of this study was to provide a collective presentation of patterns and determinants of well-being as measured by caregiver strain, depression, sleep, and quality of life in a cohort of informal family care partners for adult outpatients with end-stage liver disease. METHODS: Care partners (aged >18 years) were recruited from two liver clinics within two tertiary healthcare systems and invited to complete a cross-sectional survey. They completed the Multidimensional Caregiver Strain Index, Patient Health Questionnaire, Pittsburgh Sleep Quality Index, Short Form Health Survey, and Mutuality Scale. Descriptive statistics and latent class mixture modeling were used to analyze these data. RESULTS: The sample was predominantly female and White. The well-being of care partners was diminished. Three distinct classes of well-being were identified: mildly diminished (53.2%), moderately diminished (39.0%), and severely diminished (7.8%). Those at a greater risk of worse well-being were younger and spouses and had poorer relationship quality with the patients. DISCUSSION: To improve the well-being of care partners in moderately and severely diminished classes, assessing and addressing caregiver strain and co-occurring symptoms is essential. Addressing the strain and symptoms has the potential to maintain or optimize care partners' ability to provide care to patients. Future researchers should include longitudinal and dyadic studies to examine how patients' disease progression and symptoms may affect family care partners' well-being and vice versa.

Frequency and Predictors of Falls Among Adults With Heart Failure: A Prospective Study.

OBJECTIVE: Adults with heart failure (HF) may be at high risk for falling due to age, comorbidities and frailty; however, few studies have examined falls in HF. The purpose of this study was to quantify the frequency and predictors of falls over 1 year among adults with HF. METHODS: We conducted a prospective study of adults with New York Heart Association (NYHA) functional class I-IV HF. After baseline assessment of physical frailty and clinical characteristics, participants self-reported falls every 3 months during 1 year. Comparative statistics were used to identify baseline differences between those who fell vs those who did not. A stepwise negative binomial regression model was used to identify predictors of fall rate over 1 year. RESULTS: The sample (n = 111) was 63.4 ± 15.7 years old, 48% were women, 28% had HF with preserved ejection fraction, and 41% were frail. Over 1 year, 43 (39%) of participants reported at least 1 fall and 28 (25%) of participants reported 2+ falls. Among those who fell, 29 (67%) reported injurious falls. Those who fell had significantly higher body mass indexes and were more likely to have NYHA class III/IV, type 2 diabetes and HF with preserved ejection fraction and to meet slowness and physical exhaustion criteria than those who did not fall. The fall rate was elevated among those with type 2 diabetes and those meeting the slowness and physical exhaustion criteria for physical frailty. CONCLUSIONS: Nearly 40% of adults with HF experienced a fall within 1 year. Screening for comorbidities, slowness and exhaustion may help to identify those at risk for a fall.

Are Physical and Depressive Symptoms Different Between Women and Men With Heart Failure?: An Exploration Using Two Analytic Techniques.

BACKGROUND: Adults with heart failure (HF) experience a constellation of symptoms; however, understanding of gender differences in HF symptoms remain elusive. The aim of this study was to determine whether there are gender differences in physical and depressive symptoms and symptom patterns in HF using 2 different analytic techniques. METHODS: We performed a secondary analysis of combined data from 6 studies of adults with HF. Physical symptoms were measured with the HF Somatic Perception Scale, and depressive symptoms were measured with the Patient Health Questionnaire-9. First, we performed propensity matching with the nearest neighbor to examine the average treatment effect for HF Somatic Perception Scale and Patient Health Questionnaire-9 in the matched sample of women and men. Next, we used the entire data set in a latent class mixture model to determine patterns of symptoms. Finally, we calculated predictors of class membership with multinomial logistic regression. RESULTS: The sample (n = 524, 86.5% systolic HF) was 37% women with a mean age of 58.3 ± 13.9 years and mean number of years with HF of 6.9 ± 6.9. Three hundred sixty-six participants were matched on propensity scores; there were no significant gender differences in symptom scores between matched women (n = 183) and men (n = 183). Among all 524 participants, 4 distinct latent classes of symptom patterns indicate that many patients with HF are fatigued, some have more depressive symptoms, and others have significantly more edema or cough. Gender did not predict membership to any symptom pattern. CONCLUSIONS: There were significant gender differences in sociodemographics, health behaviors, and clinical characteristics, but not HF symptoms or symptom patterns, using either analytic technique.

Symptom Classes in Decompensated Liver Disease.

BACKGROUND & AIMS: Patients with decompensated liver disease have been categorized by disease severity. This analysis sought to classify patients with end-stage liver disease based on symptoms rather than disease state and to identify distinct severity classes of physical and psychological symptoms. METHODS: Patients with a model for end-stage liver disease-sodium score of 15 or higher were recruited from liver clinics in 2 health care organizations. They completed the Condensed Memorial Symptom Assessment Scale, Revised Ways of Coping Checklist, Patient Health Questionnaire, Life Orientation Test-Revised, and the Short-Form Health Survey. Cross-sectional data were analyzed using latent class mixture modeling. RESULTS: The sample (N = 191; age, 56.6 ± 11.1 y; 33.5% ETOH; 28.3% nonalcoholic fatty liver disease; 13.1% autoimmune/primary biliary cholangitis/primary sclerosing cholangitis) was predominantly male (64.2%), Child-Turcotte-Pugh class C (49.5%), with an average model for end-stage liver disease-sodium score of 18.7 ± 4.9. Three distinct classes of symptoms were identified, as follows: mild (26.7%), moderate (41.4%), or severe (31.9%) symptoms. Symptom classes were independent of disease severity and demographic characteristics, except age. All Condensed Memorial Symptom Assessment Scale symptoms and Patient Health Questionnaire scores were significantly different across the 3 classes (P < .05). The symptom classes also differed significantly in physical and mental quality of life, optimism, and avoidance coping behaviors (all P < .001). CONCLUSIONS: Patient-reported symptom severity occurred independent of disease severity, contrary to common assumptions. Focusing on the moderate and severe symptom classes as well as patient history of end-stage liver disease complications may enhance providers' ability to improve symptom management for this population.

Background and Design of the Biological and Physiological Mechanisms of Symptom Clusters in Heart Failure (BIOMES-HF) Study.

BACKGROUND: Symptoms, which often cluster together, are a significant problem in heart failure (HF). There is considerable heterogeneity in symptom burden, particularly in the vulnerable transition period after a hospitalization for HF, and the biological underpinnings of symptoms during transitions are unclear. The purpose of this article is to describe the background and design of a study that addresses these knowledge gaps, entitled Biological and Physiological Mechanisms of Symptom Clusters in Heart Failure (BIOMES-HF). METHODS AND RESULTS: BIOMES-HF is a prospective gender- and age-balanced longitudinal study of 240 adults during the 6-month transition period after a HF hospitalization. The aims are to (1) identify clusters of change in physical symptoms, (2) quantify longitudinal associations between biomarkers and physical symptoms, and (3) quantify longitudinal associations between physical frailty and physical symptoms among adults with HF. We will measure multiple symptoms, biomarkers, and physical frailty at discharge and then at 1 week and 1, 3, and 6 months after hospitalization. We will use growth mixture modeling and longitudinal mediation modeling to examine changes in symptoms, biomarkers, and physical frailty after HF hospitalization and associations therein. CONCLUSIONS: This innovative study will advance HF symptom science by using a multibiomarker panel and the physical frailty phenotype to capture the multifaceted nature of HF. Using advanced quantitative modeling, we will characterize heterogeneity and identify potential mechanisms of symptoms in HF. As a result, this research will pinpoint amenable targets for intervention to provide better, individualized treatment to improve symptom burden in HF. LAY SUMMARY: Adults with heart failure may have significant symptom burden. This study is designed to shed light on our understanding of the role of biological and physiological mechanisms in explaining heart failure symptoms, particularly groups of co-occurring symptoms, over time. We explore how symptoms, biomarkers, and physical frailty change after a heart failure hospitalization. The knowledge generated from this study will be used to guide the management and self-care for adults with heart failure.

Symptom Frequency and Distress Underestimated in Decompensated Cirrhosis.

BACKGROUND: Studies assessing multiple symptoms and the distress of these symptoms in decompensated cirrhosis are lacking. AIMS: The aims of this study were to assess symptom prevalence and distress among patients with decompensated cirrhosis and to describe medical management of the most prevalent symptoms. METHODS: Patients were recruited from hepatology clinics within two health-care systems. Eligibility criteria included a model for end-stage liver disease (MELD-Na) score ≥15. Patients completed the Condensed Memorial Symptom Assessment Scale and Patient Health Questionnaire. Comparative statistics were used to analyze the cross-sectional survey data. RESULTS: Of the sample (n = 146), most patients were Child-Turcotte-Pugh (CTP) class B (49.7%) and C (46.2%). Mean age was 56.5 years, 65.1% were male, and 88.4% were white. Average MELD-Na score was 19.1 ± 4.5. The most prevalent symptoms were lack of energy and feeling drowsy while the most distressing were lack of energy and difficulty sleeping. Only 24 patients (16.4%) were treated for their difficulty sleeping with sleep medication. Importantly, those prescribed sleep medications had similar distress (3.9 ± 1.2 vs. 3.5 ± 1.2, p = 0.229) compared with patients not prescribed sleep medications. Opioids were prescribed to 57 (39.0%) patients; antidepressants to 34 (23.3%). Forty patients (27.4%) who reported moderate or greater depression were not prescribed an antidepressant. CONCLUSIONS: The study highlights the multiple symptoms and distress experienced by patients with decompensated cirrhosis, and the need for improved medical management by health-care providers through enhanced awareness and attention to these complex symptoms. Future research should focus on improvements in symptom management.

Physical and Mental Quality of Life in Patients With End-Stage Liver Disease and Their Informal Caregivers.

BACKGROUND & AIMS: Management of end-stage liver disease (ESLD) has implications for not only patients' quality of life (QOL), but also their caregivers'. We aimed to identify characteristics of patients with ESLD and their caregivers that are associated with QOL. METHODS: We obtained cross-sectional baseline data from patients and their caregivers (132 dyads; 62% were married or partners), recruited from outpatient hepatology clinics within 2 healthcare centers. Patients were included if their model for end-stage liver disease score was 15 or more; caregivers were identified by the patient as the primary informal caregiver. QOL was measured by the SF-36 and relationship quality using the mutuality scale. We measured uncertainty using the uncertainty in illness scales for patients and caregivers. Multilevel modeling was used to analyze the data. RESULTS: Refractory ascites was associated with worse physical QOL for patients (unstandardized beta [B], -9.19; standard error [SE], 2.28) and caregivers (B, -5.41; SE, 2.33); history of hepatic encephalopathy was associated with worse patient physical QOL (B, -3.86; SE, 1.65). High levels of uncertainty were associated with worse physical and mental QOL for both members of the dyads; relationship quality was significantly associated with patient mental QOL (B, 2.73; SE, 1.19). CONCLUSIONS: Clinicians and researchers should consider the effects of ESLD on caregivers as well as their patients to optimize the QOL for both.

Sympathetic Markers are Different Between Clinical Responders and Nonresponders After Left Ventricular Assist Device Implantation.

BACKGROUND: Clinical response to left ventricular assist devices (LVADs), as measured by health-related quality of life, varies among patients after implantation; however, it is unknown which pathophysiological mechanisms underlie differences in clinical response by health-related quality of life. OBJECTIVE: The purpose of this study was to compare changes in sympathetic markers (ß-adrenergic receptor kinase-1 [ßARK1], norepinephrine [NE], and 3,4-dihydroxyphenylglycol [DHPG]) between health-related quality of life clinical responders and nonresponders from pre- to post-LVAD implantation. METHODS: We performed a secondary analysis on a subset of data from a cohort study of patients from pre- to 1, 3, and 6 months after LVAD implantation. Clinical response was defined as an increase of 5 points or higher on the Kansas City Cardiomyopathy Questionnaire Clinical Summary score from pre- to 6 months post-LVAD implantation. We measured plasma ßARK1 level with an enzyme-linked immunosorbent assay and plasma NE and DHPG levels with high-performance liquid chromatography with electrochemical detection. Latent growth curve modeling was used to compare the trajectories of markers between groups. RESULTS: The mean (SD) age of the sample (n = 39) was 52.9 (13.2) years, and most were male (74.4%) and received LVADs as bridge to transplantation (69.2%). Preimplantation plasma ßARK1 levels were significantly higher in clinical responders (n = 19) than in nonresponders (n = 20) (P = .001), but change was similar after LVAD (P = .235). Preimplantation plasma DHPG levels were significantly lower in clinical responders than in nonresponders (P = .002), but the change was similar after LVAD (P = .881). There were no significant differences in plasma NE levels. CONCLUSIONS: Preimplantation ßARK1 and DHPG levels are differentiating factors between health-related quality of life clinical responders and nonresponders to LVAD, potentially signaling differing levels of sympathetic stimulation underlying clinical response.

Depressive symptoms in couples living with heart failure: the role of congruent engagement in heart failure management.

OBJECTIVES: The life-threatening context of heart failure (HF), high variability of the illness and complexity of care place considerable demands on both the adult patient and his/her spouse. The current study examines the role of congruent engagement in HF management behaviors on the depressive symptoms of the couple living with HF. METHOD: A cross-sectional design was used to examine 60 couples living with HF. Multilevel modeling was used to examine partner and within-dyad effects of engagement in HF behaviors on depressive symptoms. RESULTS: Just over one quarter (27%) of couples had both members experiencing at least mild depressive symptoms. Controlling for stage of HF and one's own level of engagement, one's partner's level of engagement was significantly associated with one's level of depressive symptoms; higher levels of engagement by one's partner were associated with lower levels of depressive symptoms. Additionally, spouses had lower levels of depressive symptoms when they had similar levels of engagement to their partner with HF; spouses had higher levels of depressive symptoms when they had higher levels of engagement than their partner with HF. CONCLUSION: Findings confirm the importance of screening both members of the couple for depression and fostering collaboration within the couple.

Identifying a Relationship Between Physical Frailty and Heart Failure Symptoms.

BACKGROUND: Heart failure (HF) is a complex clinical syndrome associated with significant symptom burden; however, our understanding of the relationship between symptoms and physical frailty in HF is limited. OBJECTIVE: The aim of this study was to quantify associations between symptoms and physical frailty in adults with HF. METHODS: A sample of adults with symptomatic HF were enrolled in a cross-sectional study. Physical symptoms were measured with the HF Somatic Perception Scale-Dyspnea subscale, the Epworth Sleepiness Scale, and the Brief Pain Inventory short form. Affective symptoms were measured with the Patient Health Questionnaire-9 and the Brief Symptom Inventory-Anxiety scale. Physical frailty was assessed according to the Frailty Phenotype Criteria: shrinking, weakness, slowness, physical exhaustion, and low physical activity. Comparative statistics and generalized linear modeling were used to quantify associations between symptoms and physical frailty, controlling for Seattle HF Model projected 1-year survival. RESULTS: The mean age of the sample (n = 49) was 57.4 ± 9.7 years, 67% were male, 92% had New York Heart Association class III/IV HF, and 67% had nonischemic HF. Physically frail participants had more than twice the level of dyspnea (P < .001), 75% worse wake disturbances (P < .001), and 76% worse depressive symptoms (P = .003) compared with those who were not physically frail. There were no differences in pain or anxiety. CONCLUSIONS: Physically frail adults with HF have considerably worse dyspnea, wake disturbances, and depression. Targeting physical frailty may help identify and improve physical and affective symptoms in HF.

Self-care Moderates the Relationship Between Symptoms and Health-Related Quality of Life in Heart Failure.

BACKGROUND: Physical symptoms and depression in heart failure (HF) are key drivers of health-related quality of life (HRQOL). Heart failure self-care behaviors are believed to influence how symptoms affect HRQOL. OBJECTIVE: The goal of this study was to determine if HF self-care behaviors moderate the relationships between physical and depressive symptoms and HRQOL. METHODS: In a cohort of adults with moderate to advanced HF, multivariate linear regression was used to evaluate the interaction between self-care behaviors (Self-care of HF index maintenance and management scales) and physical HF symptoms (HF Somatic Perception Scale) on emotional HRQOL (emotional dimension of Minnesota Living With HF Questionnaire). The interaction between self-care behaviors and depression (9-item Patient Health Questionnaire) was evaluated on physical HRQOL (physical dimension of Minnesota Living With HF Questionnaire). RESULTS: The mean age of the sample (N = 202) was 57 ± 13 years, 50% were women, and 61% had New York Heart Association class III or IV HF. Controlling for age, Seattle HF score, functional ability, and comorbidities, self-care maintenance and management moderated the relationship between physical HF symptoms and emotional HRQOL. Only self-care maintenance moderated the relationship between depression and physical HRQOL. CONCLUSION: In HF, HRQOL is dependent on both the severity of physical and depressive symptoms and the level of engagement in HF self-care behaviors. Future research should consider both self-care behaviors and symptoms when examining patient HRQOL.

Implant Strategy-Specific Changes in Symptoms in Response to Left Ventricular Assist Devices.

BACKGROUND: Although we know that the quality of life generally improves after left ventricular assist device (LVAD) implantation, we know little about how symptoms change in response to LVAD. METHODS: The purpose of this study was to compare the changes in symptoms between bridge and destination therapy patients as part of a prospective cohort study. Physical (dyspnea and wake disturbances) and affective symptoms (depression and anxiety) were measured before LVAD and at 1, 3, and 6 months after LVAD. Multiphase growth modeling was used to capture the 2 major phases of change: initial improvements between preimplant and 1 month after LVAD and subsequent improvements between 1 and 6 months after LVAD. RESULTS: The sample included 64 bridge and 22 destination therapy patients as the preimplant strategy. Destination patients had worse preimplant dyspnea and wake disturbances, and they experienced greater initial improvements in these symptoms compared with bridge patients (all P < .05); subsequent change in both symptoms were similar between groups (both P > .05). Destination patients had worse preimplant depression (P = .042) but experienced similar initial and subsequent improvements in depression in response to LVAD compared with bridge patients (both P > .05). Destination patients had similar preimplant anxiety (P = .279) but experienced less initial and greater subsequent improvements in anxiety after LVAD compared with bridge patients (both P < .05). CONCLUSION: There are many differences in the magnitude and timing of change in symptom responses to LVAD between bridge and destination therapy patients. Detailed information on changes in specific symptoms may better inform shared decision-making regarding LVAD.

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.

Background and design of the symptom burden in end-stage liver disease patient-caregiver dyad study.

Over half a million Americans are affected by cirrhosis, the cause of end-stage liver disease (ESLD). Little is known about how symptom burden changes over time in adults with ESLD and their informal caregivers, which limits our ability to develop palliative care interventions that can optimize symptom management and quality of life in different patient-caregiver dyads. The purpose of this article is to describe the background and design of a prospective, longitudinal descriptive study, "Symptom Burden in End-Stage Liver Disease Patient-Caregiver Dyads," which is currently in progress. The study is designed to (i) identify trajectories of change in physical and psychological symptom burden in adults with ESLD; (ii) identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and (iii) determine predictors of types of patient-caregiver dyads that would benefit from tailored palliative care interventions. We aim for a final sample of 200 patients and 200 caregivers who will be followed over 12 months. Integrated multilevel and latent growth mixture modeling will be used to identify trajectories of change in symptom burden, linking those changes to clinical events, and quality of life outcomes and characterizing types of patient-caregiver dyads based on patient-, caregiver-, and dyad-level factors. Challenges we have encountered include unexpected attrition of study participants, participants not returning their baseline questionnaires, and hiring and training of research staff. The study will lay the foundation for future research and innovation in ESLD, end-of-life and palliative care, and caregiving.

Physical and psychological symptom biomechanics in moderate to advanced heart failure.

BACKGROUND: There is a common dissociation between objective measures and patient symptomatology in heart failure (HF). OBJECTIVE: The aim of this study was to explore the relationship between cardiac biomechanics and physical and psychological symptoms in adults with moderate to advanced HF. METHODS: We performed a secondary analysis of data from 2 studies of symptoms among adults with HF. Stepwise regression modeling was performed to examine the influence of cardiac biomechanics (left ventricular internal diastolic diameter, right atrial pressure [RAP], and cardiac index) on symptoms. RESULTS: The average age of the sample (n = 273) was 57 ± 16 years, 61% were men, and 61% had class III or IV HF. Left ventricular internal diastolic diameter (ß = 4.22 ± 1.63, P = .011), RAP (ß = 0.71 ± 0.28, P = .013), and cardiac index (ß = 7.11 ± 3.19, P = .028) were significantly associated with physical symptoms. Left ventricular internal diastolic diameter (ß = 0.10 ± 0.05, P = .038) and RAP (ß = 0.03 ± 0.01, P = .039) were significantly associated with anxiety. There were no significant biomechanical determinants of depression. CONCLUSION: Cardiac biomechanics were related to physical symptoms and anxiety, providing preliminary evidence of the biological underpinnings of symptomatology among adults with HF.

Symptom-Hemodynamic Mismatch and Heart Failure Event Risk.

BACKGROUND: Heart failure (HF) is a heterogeneous condition of both symptoms and hemodynamics. OBJECTIVE: The goals of this study were to identify distinct profiles among integrated data on physical and psychological symptoms and hemodynamics and quantify differences in 180-day event risk among observed profiles. METHODS: A secondary analysis of data collected during 2 prospective cohort studies by a single group of investigators was performed. Latent class mixture modeling was used to identify distinct symptom-hemodynamic profiles. Cox proportional hazards modeling was used to quantify difference in event risk (HF emergency visit, hospitalization, or death) among profiles. RESULTS: The mean age (n = 291) was 57 ± 13 years, 38% were female, and 61% had class III/IV HF. Three distinct symptom-hemodynamic profiles were identified: 17.9% of patients had concordant symptoms and hemodynamics (ie, moderate physical and psychological symptoms matched the comparatively good hemodynamic profile), 17.9% had severe symptoms and average hemodynamics, and 64.2% had poor hemodynamics and mild symptoms. Compared with those in the concordant profile, both profiles of symptom-hemodynamic mismatch were associated with a markedly increased event risk (severe symptoms hazards ratio, 3.38; P = .033; poor hemodynamics hazards ratio, 3.48; P = .016). CONCLUSIONS: A minority of adults with HF have concordant symptoms and hemodynamics. Either profile of symptom-hemodynamic mismatch in HF is associated with a greater risk of healthcare utilization for HF or death.

Gender-Specific Physical Symptom Biology in Heart Failure.

BACKGROUND: There are several gender differences that may help explain the link between biology and symptoms in heart failure (HF). OBJECTIVE: The aim of this study was to examine gender-specific relationships between objective measures of HF severity and physical symptoms. METHODS: Detailed clinical data, including left ventricular ejection fraction and left ventricular internal end-diastolic diameter, and HF-specific physical symptoms were collected as part of a prospective cohort study. Gender interaction terms were tested in linear regression models of physical symptoms. RESULTS: The sample (101 women and 101 men) averaged 57 years of age and most participants (60%) had class III/IV HF. Larger left ventricle size was associated with better physical symptoms for women and worse physical symptoms for men. CONCLUSION: Decreased ventricular compliance may result in worse physical HF symptoms for women and dilation of the ventricle may be a greater progenitor of symptoms for men with HF.

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.

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 patient's 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.