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Association Between Caregiver Burden and Patient Recovery After Left Ventricular Assist Device Implantation: Insights From Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support
Abstract
Introduction:
After left ventricular assist device (LVAD) implantation, caregivers may experience increasing burden because of new roles and responsibilities. We examined the association between caregiver burden at baseline and patient recovery after long-term LVAD implantation in patients ineligible for heart transplantation.
Methods:
Between October 1, 2015, and December 31, 2018, data from 60 patients with a long-term LVAD (age, 60-80 years) and caregivers through 1 postoperative year were analyzed. Caregiver burden was measured using the Oberst Caregiving Burden Scale, a validated instrument used for measuring caregiver burden. Patient recovery post-LVAD implantation was defined by change in Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12) overall summary score and rehospitalizations over 1 year. Multivariable regression models (least-squares for change in KCCQ-12 and Fine-Gray cumulative incidence for rehospitalizations) were used to assess for association with caregiver burden.
Results:
Patients were 69.4 ± 5.5 years old, 85% men, and 90% White. Over the first year post-LVAD implantation, there was a 32% cumulative probability of rehospitalization; 72% (43/60) of patients had an improvement of ≥5 points in KCCQ-12 scores. Caregivers were 61.2 ± 11.5 years old, 93% women, 81% White, and 85% married. Median Oberst Caregiving Burden Scale Difficulty and Time scores at baseline were 1.13 and 2.27, respectively. Higher caregiver burden was not significantly associated with hospitalizations or change in patient health-related quality of life during the first year post-LVAD implantation.
Conclusions:
Higher caregiver burden at baseline was not associated with patient recovery in the first year after LVAD implantation. Understanding the associations between caregiver burden and patient outcomes after LVAD implantation is important as excessive caregiver burden is a relative contraindication for LVAD implantation.
OBJECTIVE
The aim of this study was to examine the relationship between caregiver burden, family adaptation, partnership, growth, affection, and resolve score, anxiety levels, and the perceived social support of the relatives of patients who had open heart surgery.
METHODS
Volunteers among the relatives of patients who had open heart surgery in our cardiovascular surgery clinic and were followed up in the first 3 months were included in the study. The cardiovascular surgeons recorded the sociodemographic data of the relatives of the patients and directed them to a psychiatry clinic for further evaluation. The caregiver burden scale, family adaptation, partnership, growth, affection, and resolve scale, anxiety level scale, and perceived social support scale were applied to the relatives of the patients who participated in the study.
RESULTS
Within the scope of the study, a total of 51 individuals, 29.4% (n=15) men and 70.6% (n=36) women, were included in the evaluation. The participants’ ages ranged from 32 to 68 years, with an average age of 48 years. There was a statistically significant relationship between the caregiving burden scale score and the scale scores other than age (p<0.05). There was a statistically significant difference in terms of caregiving burden scale score, working status, physical and psychological problems, changes in home life, and changes in family relationships (p<0.05).
CONCLUSION
The fact that the need for security and intimacy is related to anxiety and depression can be interpreted as the caregiving problems of the relatives of the patients who think that their patients are safe and feel closer to the intensive care personnel will decrease. Their depression and anxiety levels will also decrease.
Background
There is a paucity of research describing health‐related quality of life (HRQOL) in older adults considered for advanced heart failure surgical therapies. Using data from our SUSTAIN‐IT (Sustaining Quality of Life of the Aged: Heart Transplant or Mechanical Support) study, we aimed to compare HRQOL among 3 groups of older (60–80 years) patients with heart failure before heart transplantation (HT) or long‐term mechanical circulatory support (MCS) and identify factors associated with HRQOL: (1) HT candidates with MCS, (2) HT candidates without MCS, or (3) candidates ineligible for HT and scheduled for long‐term MCS.
Methods and Results
Patients from 13 US sites completed assessments, including self‐reported measures of HRQOL (EuroQol‐5 Dimension Questionnaire, Kansas City Cardiomyopathy Questionnaire–12), depressive symptoms (Personal Health Questionnaire–8), anxiety (State‐Trait Anxiety Inventory–state form), cognitive status (Montreal Cognitive Assessment), and performance‐based measures (6‐minute walk test and 5‐m gait speed). Analyses included ANOVA, χ ² tests, Fisher’s exact tests, and linear regression. The sample included 393 patients; the majority of patients were White men and married. Long‐term MCS candidates (n=154) were significantly older and had more comorbidities and a higher New York Heart Association class than HT candidates with MCS (n=118) and HT candidates without MCS (n=121). Long‐term MCS candidates had worse HRQOL than HT candidates with and without MCS (EQ‐5D visual analog scale scores, 46±23 versus 68±18 versus 54±23 [ P <0.001] and Kansas City Cardiomyopathy Questionnaire–12 overall summary scores, 35±21 versus 60±21 versus 49±22 [ P <0.001], respectively). In multivariable analyses, lower 6‐minute walk distance, higher New York Heart Association class, depressive symptoms, and not being an HT candidate with MCS were significantly associated with worse overall HRQOL.
Conclusions
Our findings demonstrate important differences in overall and domain‐specific HRQOL of older patients with heart failure before HT or long‐term MCS. Understanding HRQOL differences may guide decisions toward more appropriate and personalized advanced heart failure therapies.
BACKGROUND
The American Heart Association, in conjunction with the National Institutes of Health, annually reports on the most up-to-date statistics related to heart disease, stroke, and cardiovascular risk factors, including core health behaviors (smoking, physical activity, diet, and weight) and health factors (cholesterol, blood pressure, and glucose control) that contribute to cardiovascular health. The Statistical Update presents the latest data on a range of major clinical heart and circulatory disease conditions (including stroke, congenital heart disease, rhythm disorders, subclinical atherosclerosis, coronary heart disease, heart failure, valvular disease, venous disease, and peripheral artery disease) and the associated outcomes (including quality of care, procedures, and economic costs).
METHODS
The American Heart Association, through its Statistics Committee, continuously monitors and evaluates sources of data on heart disease and stroke in the United States to provide the most current information available in the annual Statistical Update. The 2020 Statistical Update is the product of a full year’s worth of effort by dedicated volunteer clinicians and scientists, committed government professionals, and American Heart Association staff members. This year’s edition includes data on the monitoring and benefits of cardiovascular health in the population, metrics to assess and monitor healthy diets, an enhanced focus on social determinants of health, a focus on the global burden of cardiovascular disease, and further evidence-based approaches to changing behaviors, implementation strategies, and implications of the American Heart Association’s 2020 Impact Goals.
RESULTS
Each of the 26 chapters in the Statistical Update focuses on a different topic related to heart disease and stroke statistics.
CONCLUSIONS
The Statistical Update represents a critical resource for the lay public, policy makers, media professionals, clinicians, healthcare administrators, researchers, health advocates, and others seeking the best available data on these factors and conditions.
Purpose:
Interpreting the clinical significance of changes in patient-reported outcomes (PROs) is critically important. The most commonly used approach is to anchor mean changes on PRO scores against a global assessment of change. Whether the assessor of global change should be patients or their physicians is unknown. We compared patients' and physicians' assessments of change over time to examine which was more aligned with patients' changes in PRO measures.
Methods:
A total of 459 chronic heart failure patients aged >30 years were enrolled from 13 US centers. Data were obtained by medical record abstraction, physical assessments, and patient interviews at a baseline clinic visit and 6 weeks later. Health status was measured with the disease-specific Kansas City Cardiomyopathy Questionnaire (KCCQ), and both patients and physicians completed a validated 15-level global assessment of change, ranging from large deterioration to large improvement.
Results:
There was substantial variation between physicians/patients' global assessment of clinical change (weighted kappa = 0.36, 95 % CI 0.28, 0.43). Overall, physician assessments were more strongly correlated with change on the KCCQ summary score than were patients' assessments (physician R = 0.37, patient R = 0.29).
Conclusion:
There was substantial variation between patients' and physicians' global assessment of 6-week change in heart failure status. Physician assessments of the importance of clinical changes were more strongly associated with changes in all domains of patient-reported health status, as assessed by the KCCQ, and may provide a more consistent method for defining the clinical importance of changes in patients' health status.
There is a growing demand to collect patients' experiences of their health status (their symptoms, function, and quality of life) in clinical trials, quality assessment initiatives, and in routine clinical care. In heart failure, the 23-item, disease-specific Kansas City Cardiomyopathy Questionnaire (KCCQ) has been shown to be valid, reliable, sensitive to clinical change, and prognostic of both clinical events and costs. However, its use has been limited, in part, by its length. We sought to develop a shortened version of the instrument that maintains the psychometric properties of the full KCCQ.
Using data from 3 clinical studies incorporating 4168 patients, we derived and validated a 12-item KCCQ, the KCCQ-12, to capture symptom frequency, physical and social limitations, and quality of life impairment as a result of heart failure, as well as an overall summary score. The KCCQ-12 scores had high correlations with the original scales (>0.93 for all scales in all clinical settings), high test-retest reliability (>0.76 for all domains), high responsiveness (16-31 point improvements after discharge from hospitalization; standardized response mean =0.61-1.12), and comparable prognostic significance and interpretation of clinically important differences as compared with the full KCCQ.
The KCCQ-12 is a shorter version of the original 23-item instrument that should be more feasible to implement while preserving the psychometric properties of the full instrument.
© 2015 The Authors.
Background:
Living with heart failure patients is a complex situation for family caregivers. Few studies have been conducted to examine the effects of interventional programs to ease this condition. The purpose of this study was to determine the effectiveness of a supportive educative group intervention in reducing family caregivers’ burden of caregiving.
Materials and Methods:
This randomized clinical trail was conducted at a selective teaching hospital in Isfahan, Iran in 2012. The intervention consisted of four weekly multimedia training sessions of 2 h that included education and family support for 50 family caregivers. Caregiver burden was measured using the Zarit Burden Interview (ZBI). Paired t-test, Student's t-tests, and repeated measures analysis of variance (ANOVA) were used to test for significant differences of the mean scores of burden between the intervention and control groups over a 3-month period.
Results:
The intervention was successful in reducing caregiver burden over time both at the end of the intervention period (P = 0.000) and 3 months after the intervention (P = 0.000).
Conclusions:
Nurses and other healthcare providers can use the findings of this study in order to implement effective programs to reduce family caregivers’ challenges and to provide them more support.
Objective:
To investigate the relationship between anxiety/depression and caregiver burden in informal caregivers of stroke survivors with spasticity.
Design:
Data were collected via online surveys from informal caregivers 18 years or older who cared for stroke survivors.
Setting:
Internet-based survey.
Participants:
2007 through 2009 U.S. National Health and Wellness Survey database or Lightspeed Research general panel respondents (N=153).
Interventions:
Not applicable.
Main outcome measures:
Anxiety and depression were self-reported by the caregiver as a physician diagnosis. Depression severity was measured by the Patient Health Questionnaire-9 (PHQ-9). Caregiver burden was measured by the Oberst Caregiving Burden Scale (OCBS) and the Bakas Caregiving Outcomes Scale (BCOS). Logistic regression analyses were conducted with anxiety, depression, and the PHQ-9 depression severity categories as a result of each caregiver burden scale.
Results:
Data were analyzed for 153 informal caregivers; they were mostly women (70.6%) and white (78.4%), with a mean age of 51.6 years. For every 1-point increase in the OCBS Difficulty Scale, the odds of anxiety or depression were 2.57 times as great (P<.001) and 1.88 times as great (P=.007), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 2.48 times as great (P<.001). For every 1-point decrease in the BCOS, the odds of anxiety or depression were 2.43 times as great (P<.001) and 2.27 times as great (P=.002), respectively. The odds of PHQ-9 severe depression versus all other categories combined were 4.55 times as great (P<.001).
Conclusions:
As caregiver burden increases, caregivers are more likely to have anxiety and depression. Depression severity also increases. Providing treatment to stroke survivors with spasticity that lessens the time and more importantly, the difficulty of caregiving may lead to a reduction in caregiver anxiety and depression.
Limited research has examined the ways in which changes in self-rated health experienced by aging spouses affect depressive symptoms of both members of the dyad. Longitudinal data from 315 older couples in which one partner had end-stage renal disease were analyzed using multilevel modeling. Results indicate that for both patients and spouses, own mean self-rated health was associated with own depressive symptoms, and change in self-rated health had a significant negative association with change in own depressive symptoms. Both mean self-rated health of the patient and change in patient's self-rated health had negative relationships with spouse depressive symptoms, with changes in patient's self-rated health having a stronger impact on spouse depressive symptoms than changes in spouse's own self-rated health. Results suggest the importance of understanding physical and mental health in the context of the marital dyad.
The aim of the present study is to increase knowledge regarding associations between couples' health condition and psychological distress in both spouses considering gender as well as patient/spouse status.
We examined a community-based sample of 995 elderly couples in which either both spouses were healthy, one of them suffered from chronic disease or both spouses were ill. Both spouses filled out the Hospital Anxiety and Depression Scale.
In line with our hypotheses, the results showed an association between women's psychological distress and their own as well as their spouse's health condition, whereas men's psychological distress was associated only with their own health condition.
The findings demonstrate the need for awareness of gender and patient/spouse differences in psychological distress among elderly couples confronted with chronic disease.
BACKGROUND
: We compared HRQOL, depressive symptoms, anxiety and burden among caregivers of older HF patients based on intended patient therapy goal: awaiting heart transplantation (HT) with or without mechanical circulatory support (MCS); and prior to long-term MCS; and identified factors associated with HRQOL.
METHODS
: Caregivers (n=281) recruited from 13 U.S. HT and MCS programs, completed measures of HRQOL (EQ-5D-3L), depressive symptoms (PHQ-8), anxiety (STAI-state), and burden (Oberst Caregiving Burden Scale). Analyses included ANOVA, Kruskal-Wallis tests, chi-square tests, and linear regression.
RESULTS
: The majority of caregivers were female, white, spouses with ≤2 co-morbidities, median[Q1,Q3] age=62[57.8,67.0] years. Caregivers (HT with MCS=87, HT without MCS=98, long-term MCS=96) reported similarly high baseline HRQOL (EQ-5D-3L visual analog scale median score=90, p=0.67, for all groups) and low levels of depressive symptoms. STAI-state median scores were higher in the long-term MCS group versus the HT groups with and without MCS, (38 versus 32 versus 31, p<0.001), respectively. Burden (task: time spent/difficulty) differed significantly among groups. Caregiver factors (number of comorbidities, diabetes, and higher anxiety levels) were significantly associated with worse caregiver HRQOL, R²=26%.
CONCLUSIONS
: Recognizing caregiver-specific factors, including comorbidities and anxiety, associated with HRQOL of caregivers of these older advanced HF patients may guide support strategies.
Background:
Family caregivers (FCGs) often participate in the decision for their loved one to receive a left ventricular assist device (LVAD). Little is known about the contribution of FCGs to this complex decision.
Objectives:
To investigate family caregiver-reported outcomes related to decision-making for LVAD implantation and their experiences post-implantation.
Methods:
Descriptive thematic analysis was used to analyze longitudinal data. Thematic saturation was achieved.
Results:
Three key themes emerged from the data. The main theme in the pre-implantation period was: Not a decision. The two themes in the post-implantation period were: More satisfaction than regret and Unanticipated situational change.
Conclusions:
Family caregiver-reported outcomes inform clinical practice and future research. FCGs of LVAD recipients did not see viable alternatives to LVAD implantation, were generally satisfied with post-implantation outcomes, and experienced unexpected life changes in the post-implantation period despite feeling prepared preoperatively. Education of both LVAD recipients and their FCGs must be optimized.
Background:
The Interagency Registry for Mechanically Assisted Circulatory Support (Intermacs), a joint effort among the National Heart, Lung, and Blood Institute, the Food and Drug Administration, the Centers for Medicare and Medicaid Services, and others, was established in 2005 at the University of Alabama at Birmingham. The registry examined clinical outcomes and quality-of-life metrics of patients who received an Food and Drug Administration-approved durable mechanical circulatory support (MCS) device to treat advanced heart failure. On January 1, 2018, the Intermacs Database became part of The Society of Thoracic Surgeons National Database, providing additional resources for quality assessment and improvement and scientific advancement.
Methods:
The Intermacs Database Annual Report summarizes outcomes in patients (≥19 years of age) who underwent durable MCS implant between June 23, 2006, and December 31, 2017. Outcomes are presented for patients who underwent isolated continuous flow left ventricular assist device (CF LVAD) support, CF LVAD support with concomitant right ventricular assist device (RVAD) implant, or total artificial heart implant. Analyses of patients with CF LVADs are stratified by axial flow and centrifugal flow configurations. Because of the association of era with outcomes, the survival analyses are restricted to isolated CF LVADs implanted in the 2012 to 2016 era.
Results:
There were 25,145 adult patients with MCS reported to Intermacs, of whom 18,539 (74%) received CF LVADs, 667 (2.6%) had an RVAD with CF LVAD, 339 received a total artificial heart (1.3%), and 20 (0.07%) received an isolated RVAD. Of the CF LVADs, mean age was 57 ± 1 years, 26% were listed for transplantation, and 51% were in cardiogenic shock (profile 1 to 2) preoperatively. CF LVADs included 14,527 axial flow (78%) and 4,012 centrifugal flow (22%) devices. Intermacs patient phenotype has evolved over time to include more patients with profile 3 (26% in 2006 to 2011 versus 35% in 2012 to 2016) and fewer patients with profile 2 (40% versus 35%), patients with better markers of preoperative renal and hepatic function, and more patients who received implants for destination therapy (29% versus 48%) indication. In 2017, centrifugal flow implants (51%) approximated that of axial flow devices (49%). Mean CF LVAD support duration was 20 months (31,563 patient-years). One-year survival for isolated CF LVADs was 83% and 5-year survival was 46%. One-year survivals for centrifugal versus axial flow devices were 85% and 84%, respectively. Patients who required concomitant RVAD support had 1- and 5-year survivals of 58% and 28%, respectively. Freedom from all-cause readmission was 70% at 1 month and 20% at 1 year. At 1 year, stroke occurred in 20% of patients on centrifugal flow and 13% of patients on axial flow support (p < 0.001), gastrointestinal bleeding affected 20% of patients with centrifugal flow devices and 25% of patients with axial flow devices (p < 0.001), and pump-related infection occurred in 28% of patients with centrifugal flow devices versus 25% of patients with axial flow devices (p = 0.01). Neurologic dysfunction (19% of deaths) and multisystem organ dysfunction (15%) were the most common causes of death.
Conclusions:
With the evolution of MCS, patient phenotype and outcomes are also changing over time. CF LVAD support is increasingly being used in the less ill patient phenotype and more patients are supported for destination therapy. Mean survival is now approaching 5 years, but adverse events, especially neurologic events, continue to have a detrimental impact on the success of CF LVAD support.
Background:
Clinical and US regulatory guidelines for patients with mechanical circulatory support (MCS) require the identification of a caregiver to assist with MCS care. There is limited understanding of the impact of MCS caregiving on patients and caregivers. The purpose of this study was to examine how living with MCS affects the quality of life (QoL) of patients and their caregivers through the lens of preparedness and mutuality.
Methods and results:
The sample included 30 MCS patients and their caregivers. Semistructured qualitative interviews about factors contributing to QoL were conducted with patients and caregivers and analyzed using a 2-phase thematic process. Caregiving impacts QoL of MCS patients and their caregivers long term. When there was limited time to engage in decision-making about MCS implantation, people entered MCS caregiving relationships naive to its full demands. Although most people adjusted to the task demands, MCS caregiving had a significant impact, both positive and negative, on interpersonal relationships. We applied the concepts of preparedness and mutuality to help frame the understanding of the emergent themes of forced choice, adjustment, gratitude, relationship change, strain, and burden (both caregiver and patient perceived). Availability of networks of support was identified as a crucial resource.
Conclusions:
MCS caregiving affects QoL for both patients and caregivers. Specifically, preparedness, mutuality, and availability of supportive networks influence QoL of MCS patients and their caregivers. Caregiving relationships change over time. Long-term support by the MCS clinical team can help ensure that physical and emotional needs of MCS patients and caregivers are identified and addressed.
Importance
While there is increasing emphasis on incorporating patient-reported outcome measures in routine care for patients with heart failure (HF), how best to interpret longitudinally collected patient-reported outcome measures is unknown.
Objective
To examine the strength of association between prior, current, or a change in Kansas City Cardiomyopathy Questionnaire (KCCQ) scores with death and hospitalization in patients with HF with preserved (HFpEF) and reduced (HFrEF) ejection fractions.
Design, Setting, and Participants
Secondary analyses of the Treatment of Preserved Cardiac Function Heart Failure With an Aldosterone Antagonist (TOPCAT) trial of 1372 patients with HFpEF, conducted between August 2006 and January 2012, and the HF-ACTION trial that included 1669 patients with HFrEF, conducted between April 2003 and February 2007.
Exposures
Prior, current, and change in KCCQ Overall Summary scores (KCCQ-os) in 5-point increments (higher scores indicate better health status).
Main Outcomes and Measures
Time to cardiovascular death/first HF hospitalization (primary outcome) and all-cause death (secondary outcome).
Results
Of the 1767 total participants, 882 were women (49.9%), and the mean (SD) age was 71.5 (9.7) years. Each 5-point difference in prior or current KCCQ-os scores was associated with a 6% (95% CI, 4%-8%; P < .001) to 9% (95% CI, 7%-11%; P < .001) lower risk for subsequent cardiovascular death/first HF hospitalization in patients with HFpEF and 6% (95% CI, 4%-9%; P < .001) to 8% (95% CI, 5%-10%; P < .001) lower risk for subsequent cardiovascular death/first HF hospitalization in patients HFrEF in unadjusted analyses. Results were similar for change in KCCQ-os. In models with the prior and current KCCQ-os, only the current KCCQ-os was significantly associated with 10% (95% CI, 7%-12%; P < .001) and 7% (95% CI, 3%-11%; P < .001) lower risk for subsequent cardiovascular death/first HF hospitalization in patients with HFpEF and HFrEF, respectively. Similar results were observed when the current and Δ KCCQ-os were considered together, when adjusted for important patient and treatment characteristics, when including 3 sequential KCCQ-os scores, and when examining all-cause death as the outcome.
Conclusions and Relevance
In serial health status evaluations of patients with HF, the most recent KCCQ score was most strongly associated with subsequent death and cardiovascular hospitalization in HFpEF and HFrEF. Measuring serial patient-reported outcome measures in the clinical care of patients with HF can provide an updated assessment of prognosis.
Trial Registration
clinicaltrials.gov Identifier: NCT00094302 (TOPCAT) and NCT00047437 (HF-ACTION).
Background
Quantifying quality of life (QoL) after left ventricular assist device (LVAD) remains challenging. Heart failure-specific health status measures are ideal for assessing symptoms of heart failure; however, if patients’ QoL is limited by other factors, then patients may have an improvement in heart failure-specific QoL with no concurrent improvement in generic QoL. We sought to examine and predict discrepancies between disease-specific and generic QoL measures after LVAD.
Methods and Results
We examined heart failure-specific and generic QoL with the Kansas City Cardiomyopathy Questionnaire (KCCQ) and Euroqol-5D Visual Analog Scale (VAS), respectively among 1888 patients with advanced heart failure who underwent LVAD implant from 2012-2014 as part of the INTERMACS registry. Both measures improved substantially, on average, at 6-months after LVAD, with mean changes of 32.7±25.0 and 27.6±27.4, respectively. Among the 1539 patients (81.5%) with moderate/large improvement in KCCQ, 334 (21.7%) had discordant changes in generic QoL (i.e., VAS did not substantially increase despite improvement in KCCQ). In a multivariable logistic regression model, baseline VAS score was the strongest predictor of KCCQ-VAS discordance while post-LVAD complications were not.
Conclusion
Most patients have large improvements in both heart failure-specific and generic QoL after LVAD implantation, and discordance in these measures after LVAD is uncommon. When it occurred, discordance was primarily observed in patients who reported good generic QoL on the VAS prior to LVAD (despite substantial impairment due to CHF). These results support the continued use of heart-failure specific health status measures to monitor QoL before and after LVAD implantation.
Background:
How caregivers contribute to positive or negative outcomes for left ventricular assist device (LVAD) patients remains unclear. Our primary study objectives were to (1) identify caregiver support attributes through a retrospective chart review of social workers' psychosocial assessments for LVAD patients and (2) determine how these attributes associated with patients' post-LVAD placement mortality and Interagency Registry for Mechanically Assisted Circulatory Support-defined morbidity events.
Methods and results:
We retrospectively reviewed and recorded social workers' clinical assessments of adult patients implanted with durable continuous-flow LVADs as bridge to transplant, destination therapy, or bridge to decision from January 2010 to December 2014. Associations between caregiver characteristics and patient mortality and morbidity events were analyzed using Kaplan-Meier curves and Cox proportional hazards regression. Patient follow-up time was calculated as the time from hospital discharge until the earliest among death with LVAD, transplant, or the last day of the study (December 31, 2015). Patients were censored for death with LVAD at the time of transplant or the last day of the study. A total of 96 LVAD recipients were included in this study. Having a caregiver who understands the severity of the illness and options available to the patient (as determined and documented by the social worker; P=0.01), a caregiver who has identified a backup plan (P=0.02), and a caregiver who is able to provide logistical support (P=0.04) significantly mitigated risk of death. The risk of death for an LVAD patient was also significantly lower among those who have at least 1 adult child who lives within 50 miles (P=0.03) and those who have an extended family who can care for the patient (P=0.03). The risk of death was 3.1× more likely among patients who live alone compared with those who do not live alone (P=0.04). No caregiver characteristics were significantly associated with morbidity.
Conclusions:
This exploratory, hypothesis-generating study suggests that mortality after LVAD placement is impacted by caregiver understanding of patient severity of illness and caregiver presence. This study provides initial evidence to support further work in understanding the associations between caregivers and LVAD patients, as well as interventions that may improve patient outcomes.
Clinical trial registration:
URL: http://www.clinicaltrials.gov. Unique identifier: NCT02248974.
Objectives:
To determine the relationship between caregiver status and outcomes after durable left ventricular assist device (LVAD) implantation.
Background:
The absence of a caregiver is a relative contraindication to durable LVAD support.
Methods:
Forty-three patients that underwent primary LVAD implantation were divided into three groups: those with caregivers that retained their roles for the duration of LVAD support (CG group), those with caregivers that resigned their roles (CG-QUIT group), and those implanted without an assigned caregiver (No-CG group). Group-specific characteristics and post-implant outcomes were compared.
Results:
In the CG-QUIT group, caregivers did not live in the same home (0.0% vs. 80.6% of CG group) and none were spouses (0.0% vs. 64.5% for CG group). Thirty-day readmission rate was highest in the CG-QUIT group (83.3% vs. 25.8% in CG group and 16.7% in No-CG group).
Conclusions:
Caregiver relationships were more likely to be maintained for the duration of LVAD support when the caregiver was a spouse and resided in the same home as the patient. Carefully selected patients implanted without a designated caregiver had comparable outcomes to those who retained their original caregiver.
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.
Objective:
The purpose of this review is to understand the experience of caregivers of patients with left ventricular assist device (LVAD) and to evaluate how health professionals can support them properly.
Background:
Left ventricular assist device can improve quality of life, enhance functional status, and prolong survival in patients with advanced heart failure. Nonetheless, LVAD can adversely influence quality of life for their family caregivers.
Methods:
An integrative literature review was conducted using scientific databases between January to March 2015.
Results:
A total of 15 studies are included in the final review. Three major themes emerged "emotional distress," "responsibility," and "coping strategies" that characterize family caregivers' experiences with care of patients with LVAD.
Conclusion:
Health care providers should understand the pivotal role of caregivers in promoting and maintaining patients' well-being and be able to help the caregiver to moderate the impact being overloaded. Research should be addressed to create interventions that motivate the caregivers to engage in activities that promote their health.
(1) Test whether FamHFcare intervention could reduce patients' heart failure (HF)-related rehospitalizations and improve family caregiver outcomes; (2) calculate effect size on caregiver outcomes; and (3) evaluate the FamHFcare.
Few interventions target family caregivers for HF home care.
This study was a mixed method design with stratification and random assignment of 20 African American HF patient/caregiver dyads. Descriptive, univariate parametric/non-parametric, and post-hoc analyses were used.
At 6 months, compared to standard care, the intervention group had significantly fewer HF rehospitalizations (M-W z = -1.8, p = 0.03), while caregiver confidence (M-W z = 2.8, p = 0.003) and social support scores (M-W z = 2.4, p = 0.01) were significantly higher, and caregiver depression (M-W z = -2.4, p = 0.01) were significantly lower. Caregivers rated the FamHFcare as helpful (M = 46.8 ± 4.1).
The FamHFcare intervention was associated with fewer HF patient rehospitalizations and improved caregiver outcomes.
Copyright © 2015 Elsevier Inc. All rights reserved.
Mobile health services may improve chronic illness care, but interventions rarely support informal caregivers' efforts.
To determine whether automated feedback to caregivers of chronic heart failure patients impacts caregiving burden and assistance with self-management.
Randomized comparative effectiveness trial.
A total of 369 heart failure patients were recruited from a Veterans Health Administration health care system. All patients participated with a "CarePartner" or informal caregiver outside their household.
Patients randomized to "standard mHealth" received weekly automated self-care support calls for 12 months with notifications about problems sent to clinicians. "mobile health+CarePartner" (mHealth+CP) patients received identical services, plus email summaries and suggestions for self-care assistance automatically sent to their CarePartners.
At baseline, 6, and 12 months, CarePartners completed assessments of caregiving strain, depressive symptoms, and participation in self-care support.
mHealth+CP CarePartners reported less caregiving strain than controls at both 6 and 12 months (both P≤0.03). That effect as well as improvements in depressive symptoms were seen primarily among CarePartners reporting greater burden at baseline (P≤0.03 for interactions between arm and baseline strain/depression at both endpoints). Although most mHealth+CP CarePartners increased the amount of time spent in self-care support, those with the highest time commitment at baseline reported decreases at both follow-ups (all P<0.05). mHealth+CP CarePartners reported more frequently attending patients' medical visits at 6 months (P=0.049) and greater involvement in medication adherence at both endpoints (both P≤0.032).
When CarePartners experienced significant caregiving strain and depression, systematic feedback about their patient-partner decreased those symptoms. Feedback also increased most CarePartners' engagement in self-care.
We propose that Stage D advanced heart failure be defined as the presence of progressive and/or persistent severe signs and symptoms of heart failure despite optimized medical, surgical, and device therapy. Importantly, the progressive decline should be primarily driven by the heart failure syndrome. Formally defining advanced heart failure and specifying when medical and device therapies have failed is challenging, but signs and symptoms, hemodynamics, exercise testing, biomarkers, and risk prediction models are useful in this process. Identification of patients in Stage D is a clinically important task since treatments are inherently limited, morbidity is typically progressive, and survival is often short. Age, frailty, and psychosocial issues impact both outcomes and selection of therapy for Stage D patients. Heart transplant and mechanical circulatory support devices are potential treatment options in select patients. In addition to considering indications, contraindications, clinical status, and comorbidities, treatment selection for Stage D patients involves incorporating the patient's wishes for survival versus quality of life and palliative and hospice care should be integrated into care plans. More research is needed to determine optimal strategies for patient selection and medical decision making, with the ultimate goal of improving clinical and patient centered outcomes in patients with Stage D heart failure.
Copyright © 2015 Elsevier Inc. All rights reserved.
To examine if the caregiving for patients with a left ventricular assist device (LVAD) is related to a poorer health status and more distress compared to patients with an implantable cardioverter defibrillator (ICD).Background
Partners distress may influence patient outcomes and is therefore an important aspect in the care of LVAD and ICD patients.Methods
Multi-center prospective observational study with 6 months follow-up of 33 LVAD partners (27% men; mean age = 54 ± 10 years) and 414 ICD partners (22% men; mean age = 60 ± 12 years).ResultsLVAD partners reported better physical (F = 10.71, p = .001) but poorer mental health status (F = 14.82, p < .001) and higher depression scores compared to ICD partners (F = 3.68, p = .05) at 6 months follow-up, also in adjusted analyses. There was no significant difference between groups on anxiety.Conclusion
Caregivers of LVAD patients show higher distress levels compared to caregivers of ICD patients. LVAD partners may have a need for support beyond what is offered currently in clinical practice.
Background:
Psychosocial contraindications for ventricular assist devices (VADs) remain particularly nebulous and are driven by institution-specific practices. Our multi-institutional, multidisciplinary workgroup conducted a review with the goal of addressing the following research question: How are preoperative psychosocial domains predictive of or associated with postoperative VAD-related outcomes? Answers to this question could contribute to the development of treatment-specific (contra) indications for patients under consideration for mechanical devices.
Methods and results:
We identified 5 studies that examined psychosocial factors and their relationship to postoperative VAD-related outcomes. Our results suggest that 3 psychosocial variables are possibly associated with VAD-related outcomes: depression, functional status, and self-care. Of the few studies that exist, the generalizability of findings is constrained by a lack of methodologic rigor, inconsistent terminology, and a lack of conceptual clarity.
Conclusions:
This review should serve as a call for research. Efforts to minimize psychosocial risk before device placement can only be successful insofar as VAD programs can clearly identify who is at risk for suboptimal outcomes.
Due to the abrupt onset of a stroke, caregivers are often unprepared for the role, have extensive needs and are at risk for negative outcomes. Interventions facilitating development of coping and problem solving skills are shown to decrease the negative effects of caregiving. The Family Informal Caregiver Stroke Self-Management (FICSS) program was developed to address the unmet needs of family caregivers of stroke survivors.
To evaluate the content, format and resource materials of the FICSS program with 10-12 family caregivers of stroke survivors within Central South Ontario.
The FICSS program is a four-module education and support series of facilitated small group discussions. Topics included: balancing changing roles, managing behaviour changes, sexuality/intimacy, and community linkages. Each module was evaluated weekly and by focus group one month after the program.
Eleven family caregivers of stroke survivors with three years of mean caregiving experience participated. Caregivers valued the opportunity to share experiences and learn from others who understood what they were going through. Recommendations were made to improve the program topic areas, content and flow.
The pilot evaluation of the program validated the content of the FICSS program and indicated recommendations for improvement.
CO-CHAIRS: Feldman D: Minneapolis Heart Institute, Minneapolis, Minnesota, Georgia Institute of Technology and Morehouse School of Medicine; Pamboukian SV: University of Alabama at Birmingham, Birmingham, Alabama; Teuteberg JJ: University of Pittsburgh, Pittsburgh, Pennsylvania TASK FORCE CHAIRS: Birks E: University of Louisville, Louisville, Kentucky; Lietz K: Loyola University, Chicago, Maywood, Illinois; Moore SA: Massachusetts General Hospital, Boston, Massachusetts; Morgan JA: Henry Ford Hospital, Detroit, Michigan CONTRIBUTING WRITERS: Arabia F: Mayo Clinic Arizona, Phoenix, Arizona; Bauman ME: University of Alberta, Alberta, Canada; Buchholz HW: University of Alberta, Stollery Children's Hospital and Mazankowski Alberta Heart Institute, Edmonton, Alberta, Canada; Deng M: University of California at Los Angeles, Los Angeles, California; Dickstein ML: Columbia University, New York, New York; El-Banayosy A: Penn State Milton S. Hershey Medical Center, Hershey, Pennsylvania; Elliot T: Inova Fairfax, Falls Church, Virginia; Goldstein DJ: Montefiore Medical Center, New York, New York; Grady KL: Northwestern University, Chicago, Illinois; Jones K: Alfred Hospital, Melbourne, Australia; Hryniewicz K: Minneapolis Heart Institute, Minneapolis, Minnesota; John R: University of Minnesota, Minneapolis, Minnesota; Kaan A: St. Paul's Hospital, Vancouver, British Columbia, Canada; Kusne S: Mayo Clinic Arizona, Phoenix, Arizona; Loebe M: Methodist Hospital, Houston, Texas; Massicotte P: University of Alberta, Stollery Children's Hospital, Edmonton, Alberta, Canada; Moazami N: Minneapolis Heart Institute, Minneapolis, Minnesota; Mohacsi P: University Hospital, Bern, Switzerland; Mooney M: Sentara Norfolk, Virginia Beach, Virginia; Nelson T: Mayo Clinic Arizona, Phoenix, Arizona; Pagani F: University of Michigan, Ann Arbor, Michigan; Perry W: Integris Baptist Health Care, Oklahoma City, Oklahoma; Potapov EV: Deutsches Herzzentrum Berlin, Berlin, Germany; Rame JE: University of Pennsylvania, Philadelphia, Pennsylvania; Russell SD: Johns Hopkins, Baltimore, Maryland; Sorensen EN: University of Maryland, Baltimore, Maryland; Sun B: Minneapolis Heart Institute, Minneapolis, Minnesota; Strueber M: Hannover Medical School, Hanover, Germany INDEPENDENT REVIEWERS: Mangi AA: Yale University School of Medicine, New Haven, Connecticut; Petty MG: University of Minnesota Medical Center, Fairview, Minneapolis, Minnesota; Rogers J: Duke University Medical Center, Durham, North Carolina.
Background:
The family caregivers of patients with heart failure (HF) report burden and poor quality of life, but little is known about changes in their perceptions over time.
Objectives:
The aims of this study were (1) to evaluate changes in caregiver burden (perceived time spent and difficulty with caregiving tasks), perceived control, depressive symptoms, anxiety, perceived life changes, and physical and emotional health-related quality of life; (2) to determine differences in perceptions between caregivers of patients with low HF symptoms (New York Heart Association class I and II) and caregivers of patients with high HF symptoms (New York Heart Association class III and IV); and (3) to the estimate time spent performing caregiving tasks.
Methods:
Sixty-three HF patients and 63 family caregivers were enrolled; 53 caregivers completed the longitudinal study. Data were collected from medical records and interviews conducted by advanced practice nurses at baseline and 4 and 8 months later.
Results:
Caregivers who completed the study had significant improvements in perceived time spent on and difficulty of caregiving tasks from baseline to 4 and 8 months, and depressive symptoms decreased from baseline to 8 months. Perceived life changes resulting from caregiving became more positive from baseline to 4 and 8 months. Perceived control, anxiety, and health-related quality of life did not change. Compared with caregivers of patients with low symptoms, caregivers of patients with high symptoms perceived that they spent more time on tasks and that tasks were more difficult, had higher anxiety, and had poorer physical health-related quality of life. Estimated time in hours spent providing care was high.
Conclusions:
In this sample, perceptions of the caregiving experience improved over 8 months. Health-related quality of life was moderately poor over the 8 months. Caregivers of patients with more severe HF symptoms may be particularly in need of interventions to reduce time and difficulty of caregiving tasks and improve physical health-related quality of life.
Providing standardized education can alleviate the burden felt by the caregiver and improve health outcomes for both the patient and caregiver. Four disease groups were included in this study that represent a significantly longer hospital stay than other cancers: acute myelogenous leukemia, acute lymphoblastic leukemia, lymphoma, or those undergoing blood marrow transplant. The complexity of care is significantly higher, necessitating greater caregiver burden following hospitalization. Eligible patients and their caregivers received post-hospitalization care education through an Oncology CarePartner Program addressing the patient's physical and emotional needs. The impact of the CarePartners program on caregiver burden was evaluated by the Oberst Caregiving Burden Scale (OCBS) and Bakas Caregiving Outcomes Scale (BCOS) on two oncology units (medical/oncology (n = 17) and blood marrow transplant (n = 21)) at three times: within 5 days of admission (T1), patient discharge from the hospital (T2), and 30 days post-discharge (T3). There were significant increases seen from T1-T2 (median = 4, p = 0.0007) and T1-T3 (median = 5.5, p = 0.003) in the BCOS. No significant changes in OCBS (time or difficulty) were seen. Standardized patient education helped improve caregivers' overall well-being but lacked in impacting the time spent and difficulty with caregiving tasks. Educational changes to address these specific areas or evaluation by different scales are both worth further investigation.
To describe the levels and identify independent predictors of caregiver burden in partners of patients with heart failure.
Care and support from a partner are important for the well-being of patients with heart failure and may potentially delay disease progression. However, caregiving may be associated with burden and stress and it is therefore important to understand which factors that influence caregiver burden. Theoretical models of caregiving describe the concept of burden as an outcome variable, including decreased well-being and health.
Data for this descriptive cross-sectional study were collected between January 2005 and September 2008. The dependent variable consisted of the Caregiver Burden Scale total score index. Socio-demographic and clinical characteristics, health-related quality of life, symptoms of depression, perceived control, and knowledge on heart failure were included in a regression analysis to determine independent predictors of caregiver burden.
The 135 partners had a mean-age of 69 years and 75% were females. Caregiver burden was perceived as medium in 30% of the partners. The patients' Physical Component Score of SF-36 (p<0.001), partners' Mental Component Score of SF-36 (p<0.001) and perceived control (p<0.01) accounted for 39% of the variance in caregiver burden.
Caregiver burden was lower when the mental health of the partner and the physical health of the patient were better and the partner experienced higher control over the heart disease. A partner-centered approach to educate and support partners of patients with heart failure is essential to improve the life situation for patient-partner dyads.
The responsibility of caregiving for patients requiring left ventricular assistance device (LVAD) support may be significant. However, little is known about their experience. Data from the Interagency Registry for Mechanically Assisted Circulatory Support (2006-2009) reported that 1722 patients had received LVADs as a bridge to transplantation, recovery, or destination therapy. The use of this advanced technology in the management of endstage heart failure is expected to continue, suggesting increased involvement of family members and significant others. The purpose of this qualitative study was to describe the experiences of caregivers of patients who received LVAD therapy as a bridge to transplantation.
Semistructured interviews allowed participants to describe their experiences as caregivers. Interviews were audiotape-recorded and transcribed verbatim. An analysis was conducted using Sandelowski's three-step process for the analysis of phenomenological data: data dwelling, open coding, and data reduction.
Participants (n=5 women and 1 man; age, 51 years; range=44 to 66 years; duration of caregiving, 183.9 days; range, 26 to 372 days; relationship to patient: spouse=3, parent=1, significant other=1, and friend=1) were designated caregivers of patients discharged home with an LVAD. Two themes emerged: sacrifice and moving beyond. Caregivers sacrificed relationships with friends and family, jobs and livelihood, health, and peace of mind in their roles as caregivers. "Moving beyond" reflected coping and adaptation to the sacrifices of being a caregiver.
Experiences described by caregivers suggest that they successfully incorporated the role of caregiver for patients with a complex therapeutic regimen into their daily lives. The specific findings should guide healthcare professionals in their efforts to support caregivers.
This study sought to assess the impact of continuous flow left ventricular assist devices (LVADs) on functional capacity and heart failure-related quality of life.
Newer continuous-flow LVAD are smaller and quieter than pulsatile-flow LVADs.
Data from advanced heart failure patients enrolled in the HeartMate II LVAD (Thoratec Corporation, Pleasanton, California) bridge to transplantation (BTT) (n = 281) and destination therapy (DT) (n = 374) trials were analyzed. Functional status (New York Heart Association [NYHA] functional class, 6-min walk distance, patient activity scores), and quality of life (Minnesota Living With Heart Failure [MLWHF] and Kansas City Cardiomyopathy Questionnaires [KCCQ]) were collected before and after LVAD implantation.
Compared with baseline, LVAD patients demonstrated early and sustained improvements in functional status and quality of life. Most patients had NYHA functional class IV symptoms at baseline. Following implant, 82% (BTT) and 80% (DT) of patients at 6 months and 79% (DT) at 24 months improved to NYHA functional class I or II. Mean 6-min walk distance in DT patients was 204 m in patients able to ambulate at baseline, which improved to 350 and 360 m at 6 and 24 months. There were also significant and sustained improvements from baseline in both BTT and DT patients in median MLWHF scores (by 40 and 42 U in DT patients, or 52% and 55%, at 6 and 24 months, respectively), and KCCQ overall summary scores (by 39 and 41 U, or 170% and 178%).
Use of a continuous flow LVAD in advanced heart failure patients results in clinically relevant improvements in functional capacity and heart failure-related quality of life.
Family caregivers of patients with heart failure report high stress, burden, and poor emotional and physical health, but less is known about predictors of health among these caregivers.
To determine predictors of family caregiving outcomes among caregivers of patients with heart failure and to identify the tasks reported as most difficult and the most negative outcomes.
A total of 63 patients with heart failure and their 63 family caregivers were enrolled in this prospective study. Data were collected from medical records and from interviews conducted at baseline and 4 and 8 months later.
Caregivers reported moderately poor physical and emotional health-related quality of life. Those with more depressive symptoms at baseline were more likely to report their lives had changed for the worse at 4 months (P=.03). The caregivers' medical health condition (P<.001) and perceived difficulty of caregiving tasks (P=.04) were predictors of physical health-related quality of life at 4 months; at 8 months, medical health condition was the only predictor (P=.004). At 4 and 8 months, depressive symptoms were predictors of emotional health-related quality of life (P<.001 and P=.001, respectively). The most difficult caregiving tasks were those dealing with patients' behavior problems; the most negative outcome was having less time for activities with friends.
Studies are needed in larger samples to identify needs of vulnerable populations of caregivers of patients with heart failure and to develop and test interventions for improving caregivers' outcomes.
Although a variety of prognostic tools have been shown to predict rehospitalization and mortality in heart failure patients, their utility in assessing future costs is less clear. We assessed whether health status assessment with the Kansas City Cardiomyopathy Questionnaire (KCCQ) predicts future costs in stable heart failure outpatients with left ventricular dysfunction after myocardial infarction.
We evaluated 12-month cost utilization data from 1516 heart failure outpatients enrolled in the Quality-of-Life Substudy of the Eplerenone Post-Myocardial Infarction Heart Failure Efficacy and Survival Study (EPHESUS). Multivariable hierarchical models assessed whether the KCCQ (categorized as 0 to <25, 25 to <50, 50 to <75, and 75 to 100) was an independent predictor of future resource use. At baseline, 685 patients (45.2%) had good health status (KCCQ scores > or =75), whereas 510 (33.6%), 262 (17.3%), and 59 (3.9%) had fair (KCCQ, 50 to 74), poor (KCCQ, 25 to 49), and the worst (KCCQ <25) health status, respectively. After multivariable adjustment, compared with patients with good health status, patients with fair health status incurred incremental 1-year costs of 4265 (cost ratio, 1.63; 95% confidence interval, 1.34 to 1.99) and $8999 (cost ratio, 2.34; 95% confidence interval, 1.62 to 3.38), respectively (P<0.0001 for association with KCCQ). Further adjustment for New York Heart Association class led to only partial attenuation of this relationship (P=0.0002).
Health status assessment predicts resource use and costs over the next year in stable heart failure outpatients with left ventricular dysfunction after myocardial infarction.
Social support is inversely associated with heart disease risk. Support may influence heart disease by encouraging health behavior change in high-risk individuals. This study examined the association between spouse support and maintenance of low-fat diets in men with hypercholesterolemia. Participants were 254 men enrolled in a 24-month randomized trial of lipid-lowering diets initiated in 1985 in Seattle, Washington. The Evaluation of Spouse Support, which assesses the extent to which spouses supported maintenance of lipid-lowering diets, was administered after the last of eight dietary classes and at 3, 12, and 24 months postinstruction. Attainment of dietary goals was determined from food records completed at the end of the class and at 3, 12, and 24 months. Compared with those in the lowest quartile, those in the highest quartile of support were more likely to attain dietary goals at 3 months (odds ratio (OR) = 4.5, 95% confidence interval (CI) 1.9-10.4), 12 months (OR = 5.5, 95% CI 2.4-12.5), and 24 months (OR = 3.9, 95% CI 1.7-9.3). Support was not associated with end-of-class dietary goal achievement. Social support may be an important factor in the maintenance of low-fat diets.
World Heart Day is September 29, 2002. This occasion provides an opportunity to recognize our successes in science and clinical care, to survey the present and future challenges at home and abroad, and to seek opportunities for international partnerships in addressing the burgeoning global epidemic of cardiovascular disease.
The final decades of the twentieth century represented a period of unprecedented success for the cardiovascular biomedical enterprise in advancing the knowledge of cardiovascular disease. Scientific progress in understanding the mechanisms of cardiovascular diseases fueled the proliferation of new methods for prevention and treatment, clinical trials to critically test these interventions, and evidence-based practice guidelines to distill these scientific advances broadly into clinical practice.
Despite major steps forward in the fight against cardiovascular disease, there is compelling evidence in the United States that we have not been fully effective in translating, disseminating, and expediting the adoption of scientific advances to improve outcomes for our society. We have failed to develop public health infrastructures and healthcare systems in parallel with the scientific progress to implement effective, evidence-based prevention and treatment strategies. Hence, we have not realized the potential of our scientific discoveries for improved cardiovascular health. A recent Institute of Medicine report1 underscored this dilemma, indicating that “between the care we have and the care we could have lies not just a gap, but a chasm.” The chasm may impede our efforts to achieve the Healthy People 2010 Objectives for the US population, as established by the Department of Health and Human Services.2
The US healthcare system is facing serious access and quality issues. Large segments of the US population do not have access to mainstream health care. These include the uninsured, a segment of the population that includes not only the unemployed but also many self-employed and low-wage earners. It …
Family caregivers of stroke survivors are at risk for negative health outcomes such as depression, psychosocial impairments, and even mortality as a result of providing care. Shortened hospital stays have contributed to the urgent need for caregivers to manage difficult and time-consuming tasks required for the care of stroke survivors in the home setting. The purposes of this study were to (a) identify which tasks were perceived as most time-consuming and difficult, (b) determine which of these tasks were most predictive of mood and other negative caregiver outcomes, and (c) evaluate the psychometric properties of the Oberst Caregiving Burden Scale (OCBS) as a measure of tasks in stroke caregivers. A cross-sectional design was employed using mailed questionnaires from 116 family caregivers of stroke survivors featuring the OCBS, the Profile of Mood States Short Form, and the Bakas Caregiving Outcomes Scale. The tasks perceived as most time-consuming and difficult, which also were predictive of mood and other negative caregiver outcomes, were managing finances, managing behaviors, and providing emotional support. Strong psychometric properties of the OCBS were found at both item and subscale levels. Developing an individual profile using the OCBS items may help to target individual support interventions for caregivers. Suggested interventions include referring caregivers to resources for tasks that fall outside the scope of nursing practice, supporting caregivers with tasks such as providing emotional support or managing behavioral problems, and encouraging caregivers to seek care for their own physical, emotional, or social needs.
The purposes of this study were to a) compare emotional responses and perception of control of patients and their spouses to myocardial infarction or coronary revascularization; and b) examine the relationship between spouses' emotional distress and patients' emotional distress and psychosocial adjustment to the cardiac event.
A total of 417 patient-spouse pairs were recruited after the patient was hospitalized for either acute myocardial infarction or coronary revascularization. We compared emotional responses of patients and spouses. The relationship between spouse anxiety and depression, and patient psychosocial distress was then determined.
Spouses had higher levels of anxiety (p <.001) and depression (p <.001) than did patients, but there were no differences in level of hostility. Patients also expressed higher levels of perceived control than did spouses (p <.001). Spouse anxiety, depression, and perceived control remained correlated with patient psychosocial adjustment to illness, even when patient anxiety and depression were kept constant. Patients' psychosocial adjustment to illness was worse when spouses were more anxious or depressed than patients, and it was best when patients were more anxious or depressed than spouses, whereas psychosocial adjustment to illness was intermediate to these 2 extremes when patient and spouse anxiety and depression levels were similar (p =.001).
Spouses often experience greater anxiety and depression and less perceived control than patients themselves. Attention to the psychological distress experienced by spouses of patients who have suffered a cardiac event may improve outcomes in patients.
No publications describe the life experience of spouses who are designated caregivers of patients with a left ventricular assist device before transplantation.
To explore what life is like for spouses serving as caregivers of patients with a left ventricular assist device before transplantation and to assess the meaning of such experience to them.
This phenomenological study included 3 women 38 to 52 years old who were designated caregivers of patients with a left ventricular assist device while the patients were waiting at home for a heart transplant.
Three major themes emerged-emotional distress, determination, and optimism: a new lease on life. The identified themes were elucidated by 8 subthemes: guilt and realization of severity of illness, fear and anxiety, recognition that being a caregiver is an overwhelming experience and a burden, coping, living with hope, realization of loving relationship, adaptation to a new life, and joyful feeling.
The spouses who served as caregivers had strong emotions as they entered each stage of this life experience. The stages were characterized by the identified themes and subthemes, which otherwise might not have been revealed or might have remained private to the study participants. Critical care nurses should recognize and anticipate challenges for these stages of life experienced by the spouses as caregivers. Heightened awareness of this phenomenon will guide nurses in individualizing plans of care, educating patients and patients' families, and evaluating outcomes of care.
We sought to investigate the prevalence of posttraumatic stress disorder, anxiety, and depression in patients and their partners after implantation of a mechanical assist device as a bridge to heart transplantation.
This was a retrospective assessment of 41 patients (age 46.3 +/- 12.0 years; male-female ratio, 38:3; time since transplantation, 55.3 +/- 34.2 months [range, 7-122 months) and 27 partners (male-female ratio 2:25) by standardized instruments (Impact of Event Scale, Hospital Anxiety and Depression Scale), in 2 University Heart Transplant Centers (Vienna, Austria, Munster, Germany). The duration of the support systems (MicroMed DeBakey-VAD in 17 patients, Novacor in 10, Thoratec in 8, TCI HeartMate in 5, and Berlin Heart Incor in 1 patient) ranged from 28 to 711 (176 +/- 146) days.
None of the patients, but 23% of the partners (n = 6), met the criteria for posttraumatic stress disorder (Maercker cutoff >0). The Impact of Event Scale (IES) sum scales differed significantly between the 2 groups (21.2 +/- 15.1, mean +/- SD) for the patients versus 38.1 +/- 27.8 for the partners, respectively; P = .001). Two percent of the patients, but 19% of the partners, showed mild to moderate depression; 4% of patients, but 23% of their partners, reported mild to moderate anxiety. None of the results were significantly influenced by the time since transplantation, patient age, diagnoses, type of assist device, or indication for heart transplantation.
Despite patients being much closer to a life threat, their partners experience significantly more psychologic distress even in the long run. Our findings highlight the need for attention to the supporting persons.
Although monitoring the clinical status of patients with heart failure rests at the core of clinical medicine, the ability of different techniques to reflect clinical change has not been evaluated. This study sought to describe changes in various measures of disease status associated with gradations of clinical change.
A prospective, 14-center cohort of 476 outpatients was assessed at baseline and 6 +/- 2 weeks to compare changes in 7 heart failure measures with clinically observed change. Measures included health status instruments (the Kansas City Cardiomyopathy Questionnaire [KCCQ], Short Form-12, and EQ-5D), physician-assessed functional class (New York Heart Association [NYHA]), an exercise test (6-minute walk), patient weight, and a biomarker (B-type natriuretic peptide). Cardiologists, blinded to all measures except weight and NYHA, categorized clinical change ranging from large deterioration to large improvement.
The KCCQ, NYHA, and 6-minute walk test were most sensitive to clinical change. For patients with large, moderate, and small deteriorations, the KCCQ decreased by 25 +/- 16, 17 +/- 14, and 5.3 +/- 11 points, respectively. For patients with small, moderate, and large improvements, the KCCQ increased by 5.7 +/- 16, 10.5 +/- 16, and 22.3 +/- 16 points, respectively (P < .01 for all compared with the no change group). New York Heart Association and 6-minute walk distance were significantly different for those with moderate and large changes (P < .05) but neither revealed a difference between those with small versus no clinical deterioration. The KCCQ had the highest c statistic for monitoring individual patients, followed by NYHA and 6-minute walk.
The KCCQ, followed by the NYHA and the 6-minute walk test, most accurately reflected clinical change in patients with heart failure.
We tested the hypothesis that one health status measure, the Kansas City Cardiomyopathy Questionnaire (KCCQ), provides prognostic information independent of other clinical data in outpatients with heart failure (HF).
Health status measures are used to describe a patient's clinical condition and have been shown to predict mortality in some populations. Their prognostic value may be particularly useful among patients with HF for identifying candidates for disease management in whom increased care may reduce hospitalizations and prevent death.
We evaluated 505 HF patients from 13 outpatient clinics who had an ejection fraction <40% using the KCCQ summary score. Proportional hazards regression was used to evaluate the association between the KCCQ summary score (range, 0 to 100; higher scores indicate better health status) and the primary outcome of death or HF admission, adjusting for baseline patient characteristics, 6-min walk distance, and B-type natriuretic peptide (BNP).
The mean age was 61 years, 76% of patients were male, 51% had an ischemic HF etiology, and 5% were New York Heart Association functional class IV. At 12 months, among the 9% of patients with a KCCQ score <25, 37% had been admitted for HF and 20% had died, compared with 7% (HF admissions) and 5% (death) of those with a KCCQ score > or =75 (33% of patients, p < 0.0001 for both comparisons). In sequential multivariable models adjusting for clinical variables, 6-min walk, and BNP levels, the KCCQ score remained significantly associated with survival free of HF hospitalization.
A low KCCQ score is an independent predictor of poor prognosis in outpatients with HF.
Little is known about the experiences of family caregivers of patients with heart failure, despite the fact that these patients have disabling symptoms and diminished functioning that could lead to caregiver stress.
Based on a caregiver model, the aims of this study were to (a) examine relationships among age, perceived control over managing heart problems, perceived difficulty with tasks, perceived outcomes, and perceived mental and general health among caregivers of persons with heart failure; (b) describe caregivers' perceptions of control over managing heart problems; and (c) describe the tasks and outcomes perceived as being most difficult and negative by caregivers.
A sample of 21 family caregivers of patients with heart failure completed the study questionnaires. Most were women (n = 20), spouses (n = 20), and White (n = 18), with a mean age of 59.6 years. The patients with heart failure were male veterans with New York Heart Association (NYHA) Class II, III, or IV. Descriptive statistics and Spearman's rho correlations were used.
Younger caregivers perceived their tasks to be more difficult and their mental health to be poorer. Caregivers' perceived control over managing heart problems was related moderately to poorer perceived mental health. Greater perceived difficulty with tasks was associated with negative perceptions of caregiver outcomes and poorer perceived mental health. Negative perceptions of caregiver outcomes were associated strongly with perceptions of poorer mental health. Performing household tasks and managing patient behaviors were most difficult, and the caregiver's emotional and financial well-being, time for social activities, and general health had deteriorated.
The preliminary results support the model. Future longitudinal studies are needed in larger samples to evaluate predictors of caregiver-perceived negative outcomes to identify priority areas for interventions.
Family caregivers of stroke survivors experience a variety of negative social, emotional, and health-related outcomes as a result of providing care.
: To psychometrically test the revised 15-item Bakas Caregiving Outcomes Scale (BCOS) measuring life changes specifically resulting from providing care. The original 10-item BCOS was improved by adding five items addressing financial well-being, level of energy, role functioning, physical functioning, and general health.
Psychometric testing of the revised 15-item BCOS using a sample of 147 family caregivers of stroke survivors approximately 4 months after stroke was conducted to determine the quality of the items, internal consistency reliability, test-retest reliability, construct validity, and criterion-related validity. Most caregivers were women (78.9%), White (68.0%) or African American (29.9%), and either spouses (60.1%) or adult children (31.3%).
Satisfactory evidence of internal consistency (alpha = .90) and 2-week test-retest reliability (intraclass coefficient [ICC] = .66; 95% confidence interval [CI] = 0.42-0.81) was provided, with item-to-total correlations ranging from .41 to .74. Unidimensionality was supported by confirmatory factor analysis with indices, indicating a good fit. Using hierarchical multiple regression, 36% of the BCOS variance was explained by constructs in the conceptual model [F(11,132) = 6.72, p < .001]. Criterion-related validity was supported by correlations with the 36-item Short Form (SF-36) General Health Subscale (r = .32, p < .001) and a criterion variable measuring how caregivers' lives had changed overall (r = .67, p < .001).
The revised 15-item BCOS has evidence of satisfactory reliability and validity in family caregivers of stroke survivors. The BCOS is a valuable measure in research and can be used to identify priority areas for nursing interventions designed to improve caregivers' outcomes.
Recent evidence suggests that psychosocial factors such as self-efficacy, psychological distress, perceived social support, and marital quality have prognostic significance for morbidity and mortality after heart failure. Previously, we reported that interview and observational measures of marital quality obtained from 189 patients with heart failure (139 men and 50 women) and their spouses predicted all-cause patient mortality during the next 4 years, independent of the baseline illness severity (New York Heart Association class). We present additional follow-up results for this sample, with Cox regression analyses showing that a couple-level composite measure of marital quality continued to predict survival during an 8-year period (p <0.001), especially when the patient was a woman, and did so substantially better than individual (patient-level) risk and protective factors, such as psychological distress, hostility, neuroticism, self-efficacy, optimism, and breadth of perceived emotional support. In conclusion, relationship factors may be especially relevant in managing a difficult chronic condition such as heart failure, which makes stringent and complex demands on patients and their families.
Identification of heart failure outpatients at increased risk for clinical deterioration remains a critical challenge, with few tools currently available to assist clinicians. We tested whether serial health status assessments with the Kansas City Cardiomyopathy Questionnaire (KCCQ) can identify patients at increased risk for mortality and hospitalization.
We evaluated 1358 patients with heart failure after an acute myocardial infarction in the Eplerenone's Neurohormonal Efficacy and Survival Study, a multicenter randomized trial that included serial KCCQ assessments. Cox proportional-hazards models were used to examine whether changes in KCCQ scores during successive outpatient visits were independently associated with all-cause mortality and cardiovascular mortality or hospitalization. Change in KCCQ (deltaKCCQ) was linearly associated with all-cause mortality (hazard ratio [HR], for each 5-point decrease in deltaKCCQ, 1.11; 95% CI, 1.04 to 1.19) and the combined outcome of cardiovascular mortality or hospitalization (HR for each 5-point decrease in deltaKCCQ, 1.12; 95% CI 1.07 to 1.18). In Kaplan-Meier survival analysis, all-cause mortality among patients with deltaKCCQ of < or = -10, > -10 to < 10, and > 10 points was 26%, 16%, and 13%, respectively (P=0.008). After multivariable adjustment, the linear relationship between deltaKCCQ and both all-cause mortality and combined cardiovascular death and hospitalization persisted (HR, 1.09; 95% CI, 1.00 to 1.18; and HR, 1.11; 95% CI, 1.05 to 1.17 for each 5-point decrease in deltaKCCQ, respectively).
In heart failure outpatients, serial health status assessments with the KCCQ can identify high-risk patients and may prove useful in directing the frequency of follow-up and the intensity of treatment.