Psychosocial predictors of health behavior adherence in heart-failure patients with comorbid depression: a secondary analysis of the Hopeful Heart trial.

BACKGROUND: Depression affects 20-30% of individuals with heart failure (HF), and it is associated with worse health outcomes independent of disease severity. One potential explanation is the adverse impact of depression on HF patients' adherence to the health behaviors needed to self-manage their condition. The aim of this study is to identify characteristics associated with lower adherence in this population, which could help to recognize individuals at higher risk and eventually tailor health behavior interventions to their needs. METHODS: Using data from a randomized, controlled, collaborative care treatment trial in 629 patients with HF and comorbid depression, we performed mixed effects logistic regression analyses to examine the cross-sectional and prospective relationships between medical and psychosocial variables and health behavior adherence, including adherence to medications, a low-sodium diet, and physician appointments. RESULTS: In cross-sectional analyses, married marital status and higher physical health-related quality of life (HRQoL) were associated with greater overall adherence (compared to married, single Odds Ratio [OR] = 0.46, 95% Confidence Interval [CI] = 0.26-0.80; other OR = 0.60, CI = 0.38-0.94; p = .012. Physical HRQoL OR = 1.02, CI = 1.00-1.04, p = .047). Prospectively, greater levels of social support were associated with improved overall adherence one year later (OR = 1.04, 95% CI = 1.00-1.08, p = .037). Social support, HF symptom severity, race and ethnicity, and age were predictors of specific types of adherence. Neither depression nor optimism was significantly associated with adherence outcomes. CONCLUSIONS: These results provide important preliminary information about risk factors for poor adherence in patients with both HF and depression, which could, in turn, contribute to the development of interventions to promote adherence in this high-risk population. TRIAL REGISTRATION: https://clinicaltrials.gov/ct2/show/NCT02044211 ; registered 1/21/2014.

Self-care behavior and associated factors among adult heart failure patients in outpatient cardiac follow-up unit at Wachemo University Nigist Eleni Comprehensive Specialized Hospital, Southern Ethiopia.

BACKGROUND: Heart failure is a serious medical condition that occurs when the heart is unable to pump sufficient blood to meet the needs of the tissues. Good self-care is an essential behavior in long term management and maintenance of physiologic stability, better medical and person-centered outcomes. Poor self-care behavior deteriorates the outcomes of heart failure patients. However, there were no sufficient evidences that illustrate the topic in the country, including the study area. METHODOLOGY: Institutional based cross-sectional study was conducted among 250 heart failure patients from July 5-August 4, 2021. All adult heart failure patients who fulfill the inclusion criteria and have appointment during study period were included in the study. Interview and medical chart review was used to collect data. Epidata version 3.1 and SPSS version 20 were used for data entry and analysis respectively. Bivariate and multivariable analysis was computed. The model fitness was checked by Hosmer and Lemeshow test. RESULTS: From the total patients, 240 were interviewed with the response rate of 96%. Among these, 140(58.3%) [95% CI: 52.6, 64.9] had poor self-care behavior. Age>54: 9.891 [2.228, 43.922], poor knowledge: 6.980[1.065, 45.727], depression: 4.973[1.107, 22.338], low social support: 6.060[1.373, 26.739], insomnia: 4.801[1.019, 22.622] and duration with heart failure <1 year: 5.782[1.438, 23.247] were factors associated with poor self-care behavior. CONCLUSION: In this study, more than half of participants attending at Wachemo University Nigist Eleni Comprehensive Specialized Hospital in outpatient cardiac follow-up unit had poor self-care behavior. Of the study variables, older age, poor knowledge, depressive symptoms, low social support, insomnia and short duration with heart failure were related with poor self-care behavior. Thus, the findings highlight importance of assessing level of self-care behavior and implicate direction to take action to enhance level of self-care behavior.

Prognostic Value of Objective Social Isolation and Loneliness in Older Patients With Heart Failure: Subanalysis of FRAGILE-HF and Kitasato Cohort.

BACKGROUND: Social factors encompass a broad spectrum of nonmedical factors, including objective (social isolation [SI]) and perceived (loneliness) conditions. Although social factors have attracted considerable research attention, information regarding their impact on patients with heart failure is scarce. We aimed to investigate the prognostic impact of objective SI and loneliness in older patients with heart failure. METHODS AND RESULTS: This study was conducted using the FRAGILE-HF (Prevalence and Prognostic Value of Physical and Social Frailty in Geriatric Patients Hospitalized for Heart Failure; derivation cohort) and Kitasato cohorts (validation cohort), which included hospitalized patients with heart failure aged ≥65 years. Objective SI and loneliness were defined using the Japanese version of Lubben Social Network Scale-6 and diagnosed when the total score for objective and perceived questions on the Lubben Social Network Scale-6 was below the median in the FRAGILE-HF. The primary outcome was 1-year death. Overall, 1232 and 405 patients in the FRAGILE-HF and Kitasato cohorts, respectively, were analyzed. Objective SI and loneliness were observed in 57.8% and 51.4% of patients in the FRAGILE-HF and 55.4% and 46.2% of those in the Kitasato cohort, respectively. During the 1-year follow-up, 149 and 31 patients died in the FRAGILE-HF and Kitasato cohorts, respectively. Cox proportional hazard analysis revealed that objective SI, but not loneliness, was significantly associated with 1-year death after adjustment for conventional risk factors in the FRAGILE-HF. These findings were consistent with the validation cohort. CONCLUSIONS: Objective SI assessed using the Lubben Social Network Scale-6 may be a prognostic indicator in older patients with heart failure. Given the lack of established SI assessment methods in this population, further research is required to refine such methods.

How Informal Carers Support Video Consulting in Physiotherapy, Heart Failure, and Cancer: Qualitative Study Using Linguistic Ethnography.

BACKGROUND: Informal carers play an important role in the everyday care of patients and the delivery of health care services. They aid patients in transportation to and from appointments, and they provide assistance during the appointments (eg, answering questions on the patient's behalf). Video consultations are often seen as a way of providing patients with easier access to care. However, few studies have considered how this affects the role of informal carers and how they are needed to make video consultations safe and feasible. OBJECTIVE: This study aims to identify how informal carers, usually friends or family who provide unpaid assistance, support patients and clinicians during video consultations. METHODS: We conducted an in-depth analysis of the communication in a sample of video consultations drawn from 7 clinical settings across 4 National Health Service Trusts in the United Kingdom. The data set consisted of 52 video consultation recordings (of patients with diabetes, gestational diabetes, cancer, heart failure, orthopedic problems, long-term pain, and neuromuscular rehabilitation) and interviews with all participants involved in these consultations. Using Linguistic Ethnography, which embeds detailed analysis of verbal and nonverbal communication in the context of the interaction, we examined the interactional, technological, and clinical work carers did to facilitate video consultations and help patients and clinicians overcome challenges of the remote and video-mediated context. RESULTS: Most patients (40/52, 77%) participated in the video consultation without support from an informal carer. Only 23% (12/52) of the consultations involved an informal carer. In addition to facilitating the clinical interaction (eg, answering questions on behalf of the patient), we identified 3 types of work that informal carers did: facilitating the use of technology; addressing problems when the patient could not hear or understand the clinician; and assisting with physical examinations, acting as the eyes, ears, and hands of the clinician. Carers often stayed in the background, monitoring the consultation to identify situations where they might be needed. In doing so, copresent carers reassured patients and helped them conduct the activities that make up a consultation. However, carers did not necessarily help patients solve all the challenges of a video consultation (eg, aiming the camera while laying hands on the patient during an examination). We compared cases where an informal carer was copresent with cases where the patient was alone, which showed that carers provided an important safety net, particularly for patients who were frail and experienced mobility difficulties. CONCLUSIONS: Informal carers play a critical role in making video consultations safe and feasible, particularly for patients with limited technological experience or complex needs. Guidance and research on video consulting need to consider the availability and work done by informal carers and how they can be supported in providing patients access to digital health care services.

Comorbid depression among adults with heart failure in Ethiopia: a hospital-based cross-sectional study.

BACKGROUND: Depression is a common comorbidity in adults with heart failure. It is associated with poor clinical outcomes, including decreased health-related quality of life and increased morbidity and mortality. There is a lack of data concerning the extent of this issue in Ethiopia. Consequently, this study aimed to assess the prevalence of comorbid depression and associated factors among adults living with heart failure in Ethiopia. METHODS: A hospital-based cross-sectional study was conducted at the cardiac outpatient clinics of two selected specialist public hospitals in Addis Ababa, Ethiopia: St. Paul's Hospital Millennium Medical College and St. Peter Specialized Hospital. An interviewer-administered questionnaire was used to collect data from 383 adults with heart failure who attended the clinics and met the inclusion criteria. Depression was measured using the Patient Health Questionnaire (PHQ-9). A binary logistic regression model was fitted to identify factors associated with depression. All statistical analyses were conducted using STATA version 17 software. RESULTS: The mean age of the participants was 55 years. On average, participants had moderate depression, as indicated by the mean PHQ-9 score of 11.02 ± 6.14, and 217 (56.6%, 95%CI 51.53-61.68) had comorbid depression. Significant associations with depression were observed among participants who were female (AOR: 2.31, 95%CI:1.30-4.08), had comorbid diabetes mellitus (AOR: 3.16, 95%CI: 1.47-6.82), were classified as New York Heart Association (NYHA) class IV (AOR: 3.59, 95%CI: 1.05-12.30), reported poor levels of social support (AOR: 6.04, 95%CI: 2.97-12.32), and took more than five medications per day (AOR: 5.26, 95%CI: 2.72-10.18). CONCLUSIONS: This study indicates that over half of all adults with heart failure in Ethiopia have comorbid depression, influenced by several factors. The findings have significant implications in terms of treatment outcomes and quality of life. More research in the area, including interventional and qualitative studies, and consideration of multifaceted approaches, such as psychosocial interventions, are needed to reduce the burden of comorbid depression in this population.

The evaluation of goal-directed activities to promote well-being and health in heart failure: EUROIA scale.

BACKGROUND: The EvalUation of goal-diRected activities to prOmote well-beIng and heAlth (EUROIA) scale is a novel patient-reported measure that was administered to individuals with chronic heart failure (CHF). It assesses goal-directed activities that are self-reported as being personally meaningful and commonly utilized to optimize health-related quality of life (HRQL). Our aim was to evaluate psychometric properties of the EUROIA, and to determine if it accounted for novel variance in its association with clinical outcomes. METHODS: This study was a secondary analysis of the CHF-CePPORT trial, which enrolled 231 CHF patients: median age = 59.5 years, 23% women. Baseline assessments included: EUROIA, Kansas City Cardiomyopathy Questionnaire-Overall Summary (KCCQ-OS), Patient Health Questionnaire-9 for depression (PHQ-9), and the Generalized Anxiety Disorder-7 (GAD-7). 12-month outcomes included health status (composite index of incident hospitalization or emergency department, ED, visit) and mental health (PHQ-9 and GAD-7). RESULTS: Exploratory Principal Axis Factoring identified four EUROIA factors with satisfactory internal reliability: i.e., activities promoting eudaimonic well-being (McDondald's ω = 0.79), social affiliation (⍺=0.69), self-affirmation (⍺=0.73), and fulfillment of social roles/responsibilities (Spearman-Brown coefficient = 0.66). Multivariable logistic regression indicated that not only was the EUROIA inversely associated with incidence of 12-month hospitalization/ED visits independent of the KCCQ-OS (Odds Ratio, OR = 0.95, 95% Confidence Interval, CI, 0.91, 0.98), but it was also associated with 12-month PHQ-9 (OR = 0.91, 95% CI, 0.86, 0.97), and GAD-7 (OR = 0.94, 95% CI, 0.90, 0.99) whereas the KCCQ-OS was not. CONCLUSION: The EUROIA provides a preliminary taxonomy of goal-directed activities that promote HRQL among CHF patients independently from a current gold standard state-based measure. CLINICAL TRIAL REGISTRATION: NCT01864369; https://classic. CLINICALTRIALS: gov/ct2/show/NCT01864369 .

The mediating effect of uncertainty in illness between heart failure symptoms and health-related quality of life among rural patients with heart failure: A multi-center cross-sectional study.

BACKGROUND: The health-related quality of life (HRQoL) of patients with heart failure (HF) in rural settings in China remains unclear. Limited studies explored the mediating effect of uncertainty in illness between heart failure symptoms and HRQoL in this population. OBJECTIVES: To explore the status of HRQoL in rural patients with HF; assess the impact of HF symptoms and uncertainty in illness on HRQoL; and examine the mediating effect of uncertainty in illness on the relationship between symptoms and HRQoL in rural patients with HF. METHODS: Overall, 298 rural patients with HF were recruited from five township hospitals of Taishan and Jinzhong City in China between November 2021 and August 2022. Three variables, namely HF symptoms, uncertainty in illness, and HRQoL were measured using three validated scales. RESULTS: The average score of HRQoL in rural patients with HF was 43.19. Of the participants, 60.4 %, 35.23 %, and 4.37 % exhibited poor, moderate, and good HRQoL, respectively. The HF symptoms (ß = -0.47) and uncertainty in illness (ß = -0.34) directly influenced HRQoL. Moreover, the HF symptoms also indirectly affected HRQoL through uncertainty in illness (ß = -0.07). The indirect effect accounted for 12.96 % of the total effect of HF symptoms on HRQoL. CONCLUSION: Rural patients with HF exhibited poor HRQoL. In this population, HF symptoms and uncertainty in illness were negatively associated with HRQoL. Uncertainty in illness mediated the relationship between HF symptoms and HRQoL. Tailored healthcare services should be developed for the rural population to alleviate HF symptoms, reduce uncertainty in illness, and enhance their HRQoL.

The experiences among bereaved family members after a left ventricular assist device (LVAD) deactivation.

BACKGROUND: The use of left ventricular assist devices (LVADs) is increasing with an estimated 2500 devices implanted each year. When burdens of the LVAD outweigh benefits, most individuals with LVADs will undergo deactivation in the hospital setting. While the decision to deactivate an LVAD is considered an ethical practice, little is known about the experience and needs of bereaved family members. OBJECTIVE: To investigate the experiences of bereaved family members of patients who died following LVAD deactivation. METHODS: In this qualitative study, 11 family members of patients who underwent LVAD deactivation were interviewed. The semi-structured interviews were conducted until data saturation was reached and relevant themes emerged. RESULTS: This qualitative study was conducted to understand the experience of family members before, during and after the patient underwent LVAD deactivation, including their perceptions of engagement with the healthcare team. Analysis revealed six overarching themes from the experience, including 1) hope for survival, 2) communication, 3) spirituality and faith, 4) absence of physical suffering, 5) positive relationships with staff, 6) post-death care needs. CONCLUSION: Bereaved family members of patients undergoing LVAD deactivation have unique lived experiences and concerns. This study highlights the importance of effective communication not only near end-of-life but throughout the LVAD experience. While the positive relationships with staff and the absence of physical suffering were strengths identified by bereaved caregivers, there is an opportunity for improvement, particularly during the decision-making and post-death periods.

Psychological assessment of patients on the heart transplant waiting list: A single center experience.

OBJECTIVE: To analyze the data of the psychological assessment, focusing attention on the quality of life and the psychological status of patients who are listed for heart transplant. METHODS: All heart failure patients listed for heart transplant at the Cardiac Surgery Unit of Bari University, Italy, were evaluated from September to November 2023, by administering the Symptom Checklist-90-R (SCL-90-R) and the Short Form Health Survey 36 (SF-36). RESULTS: Overall, 27 patients were studied. Mean age was 60 years, 88% were males. One third of the patients showed a clinically significant overall mental distress. The symptoms leading to domains such as somatization (55.55%), anxiety (40.74%) and depression (33.33%) were frequently observed. The majority of the population studied (96.30%) showed low levels of perceived physical health status, while 59,62% of them presented levels of perceived physical health status below normal ranges. CONCLUSIONS: Heart transplant candidates show elements of overall mental distress and low quality of life related to physical health status.

Physical activity changes and related factors in chronic heart failure patients during the postdischarge transition period: a longitudinal study.

BACKGROUND: Physical activity (PA) is essential and effective for chronic heart failure (CHF) patients. A greater understanding of the longitudinal change in PA and its influencing factors during the postdischarge transition period may help create interventions for improving PA. The aims of this study were (1) to compare the change in PA, (2) to examine the influencing factors of PA change, and (3) to verify the mediating pathways between influencing factors and PA during the postdischarge transition period in CHF patients. METHODS: A total of 209 CHF patients were recruited using a longitudinal study design. The Chinese version of the International Physical Activity Questionnaire (IPAQ), Patient-reported Outcome Measure for CHF (CHF-PRO), and the Chinese version of the Tampa Scale for Kinesiophobia Heart (TSK-Heart) were used to assess PA, CHF-related symptoms, and kinesiophobia. The IPAQ score was calculated (1) at admission, (2) two weeks after discharge, (3) two months after discharge, and (4) three months after discharge. Two additional questionnaires were collected during admission. Generalized estimating equation (GEE) models were fitted to identify variables associated with PA over time. We followed the STROBE checklist for reporting the study. RESULTS: The PA scores at the four follow-up visits were 1039.50 (346.50-1953.00) (baseline/T1), 630.00 (1.00-1260.00) (T2), 693.00 (1-1323.00) (T3) and 693.00 (160.88-1386.00) (T4). The PA of CHF patients decreased unevenly, with the lowest level occurring two weeks after discharge, and gradually improving at two and three months after discharge. CHF-related symptoms and kinesiophobia were significantly associated with changes in PA over time. Compared with before hospitalization, an increase in CHF-related symptoms at two weeks and two months after discharge was significantly associated with decreased PA. According to our path analysis, CHF-related symptoms were positively and directly associated with kinesiophobia, and kinesiophobia was negatively and directly related to PA. Moreover, CHF-related symptoms are indirectly related to PA through kinesiophobia. CONCLUSION: PA changed during the postdischarge transition period and was associated with CHF-related symptoms and kinesiophobia in CHF patients. Reducing CHF-related symptoms helps improve kinesiophobia in CHF patients. In addition, the reduction in CHF-related symptoms led to an increase in PA through the improvement of kinesiophobia. TRIAL REGISTRATION: The study was registered in the Chinese Clinical Trial Registry (11/10/2022 ChiCTR2200064561 retrospectively registered).

A large, multi-center survey assessing health, social support, literacy, and self-management resources in patients with heart failure.

BACKGROUND: Most patients with heart failure (HF) have multimorbidity which may cause difficulties with self-management. Understanding the resources patients draw upon to effectively manage their health is fundamental to designing new practice models to improve outcomes in HF. We describe the rationale, conceptual framework, and implementation of a multi-center survey of HF patients, characterize differences between responders and non-responders, and summarize patient characteristics and responses to the survey constructs among responders. METHODS: This was a multi-center cross-sectional survey study with linked electronic health record (EHR) data. Our survey was guided by the Chronic Care Model to understand the distribution of patient-centric factors, including health literacy, social support, self-management, and functional and mental status in patients with HF. Most questions were from existing validated questionnaires. The survey was administered to HF patients aged ≥ 30 years from 4 health systems in PCORnet® (the National Patient-Centered Clinical Research Network): Essentia Health, Intermountain Health, Mayo Clinic, and The Ohio State University. Each health system mapped their EHR data to a standardized PCORnet Common Data Model, which was used to extract demographic and clinical data on survey responders and non-responders. RESULTS: Across the 4 sites, 10,662 patients with HF were invited to participate, and 3330 completed the survey (response rate: 31%). Responders were older (74 vs. 71 years; standardized difference (95% CI): 0.18 (0.13, 0.22)), less racially diverse (3% vs. 12% non-White; standardized difference (95% CI): -0.32 (-0.36, -0.28)), and had higher prevalence of many chronic conditions than non-responders, and thus may not be representative of all HF patients. The internal reliability of the validated questionnaires in our survey was good (range of Cronbach's alpha: 0.50-0.96). Responders reported their health was generally good or fair, they frequently had cardiovascular comorbidities, > 50% had difficulty climbing stairs, and > 10% reported difficulties with bathing, preparing meals, and using transportation. Nearly 80% of patients had family or friends sit with them during a doctor visit, and 54% managed their health by themselves. Patients reported generally low perceived support for self-management related to exercise and diet. CONCLUSIONS: More than half of patients with HF managed their health by themselves. Increased understanding of self-management resources may guide the development of interventions to improve HF outcomes.

Prognostic Value of Depressive Symptoms for Cardiovascular Events in Female Patients With Heart Failure With Reduced Ejection Fraction and Heart Failure With Preserved Ejection Fraction.

BACKGROUND: Among those with heart failure (HF), women are more likely to develop depression than men. Few studies have focused on the outcomes of female patients with HF with depressive symptoms. METHODS AND RESULTS: A total of 506 female patients with HF with preserved ejection fraction were included in this secondary analysis from the TOPCAT (Treatment of Preserved Cardiac Function Heart Failure With an Aldosterone Antagonist) cohort, and 439 female patients with HF with reduced ejection fraction were included from the HF-ACTION (Heart Failure: A Controlled Trial Investigating Outcomes of Exercise Training) cohort. Depressive symptoms were measured using the Patient Health Questionnaire-9 and Beck Depression Inventory-II. The depression class was categorized by severity, and the change in clinical depression class was defined as aggravated (1-grade increase) or improved (1-grade decrease). The prognostic value of depressive symptoms was determined by using multivariable Cox proportional hazards models. Female patients with improved depressive symptoms had worse depressive status at baseline and lower baseline Kansas City Cardiomyopathy Questionnaire scores. Depression class at the 12-month visit and depression class change were the dominant prognostic factors for cardiovascular death in female patients with HF with preserved ejection fraction (hazard ratio [HR], 1.43 [95% CI, 1.02-2.01], P=0.036; HR, 1.71 [95% CI, 1.14-2.55], P=0.009). Among the patients with HF with reduced ejection fraction, both the depression class at baseline and depression class change had significant prognostic effects on cardiovascular death (HR, 3.30 [95% CI, 1.70-6.39], P<0.001; HR, 2.21 [95% CI, 1.28-3.80], P=0.004). However, the prognostic value of depressive assessments for hospitalization in patients with HF is unclear. CONCLUSIONS: In female patients with HF with reduced ejection fraction, the depression class at baseline was most strongly associated with cardiovascular death, whereas in female patients with HF with preserved ejection fraction, the change in depression class exhibited a more significant prognostic trend.

Long-term quality of life, psychological distress, and caregiver burden in octogenarians with LVAD: A single-centre experience.

With the general population aging, both life expectancy and the number of left ventricular assist device (LVAD) implantations in elderly patients are growing. Nevertheless, their perceived long-term quality of life, including psychological aspects, coupled with the respective caregiver's burden, remain under-reported. In light of the rising number of octogenarians with LVAD who necessitate broader healthcare provider involvement, we assessed the long-term quality of life, as defined by both the 36-item short-form health (SF-36) survey and the EuroQol 5 dimensions, 5-level questionnaire (EQ-5D-5L)-including the visual analog scale-in octogenarian LVAD patients who had received treatment at our institution. Additionally, we evaluated the psychological health of octogenarian LVAD patients using the psychological general well-being index (PGWBI), alongside their caregivers' well-being through the 22-item version of the Zarit Burden Interview (ZBI). Of 12 octogenarian LVAD patients, 5 were alive and willing to answer questionnaires. Mean age at implant was 74 ± 2 years. Median follow-up was 2464 (IQR = 2375-2745) days. Although variable, the degree of health and psychological well-being perceived by octogenarian patients with LVAD was "good." Interestingly, the burden of assistance reported by caregivers, though relevant, was greatly varied, suggesting the need to better define and address psychological long-term aspects related to LVAD implantation for both patients and caregivers with a broad-spectrum approach.

The relationship between caregiver contribution to self-care and patient quality of life in heart failure: A longitudinal mediation analysis.

BACKGROUND: Patients with heart failure may experience poor quality of life due to a variety of physical and psychological symptoms. Quality of life can improve if patients adhere to consistent self-care behaviors. Patient outcomes (i.e., quality of life) are thought to improve as a result of caregiver contribution to self-care. However, uncertainty exists on whether these outcomes improve as a direct result of caregiver contribution to self-care or whether this improvement occurs indirectly through the improvement of patient heart failure self-care behaviors. AIMS: To investigate the influence of caregiver contribution to self-care on quality of life of heart failure people and explore whether patient self-care behaviors mediate such a relationship. METHODS: This is a secondary analysis of the MOTIVATE-HF randomized controlled trial (Clinicaltrials.gov registration number: NCT02894502). Data were collected at baseline and 3 months. An autoregressive longitudinal path analysis model was conducted to test our hypotheses. RESULTS: We enrolled a sample of 510 caregivers [mean age = 54 (±15.44), 24% males)] and 510 patients [mean age = 72.4 (±12.28), 58% males)]. Patient self-care had a significant and direct effect on quality of life at three months (ß = 0.20, p < .01). Caregiver contribution to self-care showed a significant direct effect on patient self-care (ß = 0.32, p < .01), and an indirect effect on patient quality of life through the mediation of patient self-care (ß = 0.07, p < .001). CONCLUSION: Patient quality of life is influenced by self-care both directly and indirectly, through the mediation of caregiver contribution to self-care. These findings improve our understanding on how caregiver contribution to self-care improves patient outcomes.

Palliative Care in Adult Congenital Heart Disease-Associated Advanced Heart Disease.

The practice of palliative care (PC) strives to mitigate patient suffering through aligning patient priorities and values with care planning and via improved understanding of complex physical, psychosocial, and spiritual stressors and dynamics that contribute to patient-centered outcomes. Through representative 'case examples' and supportive data, the role and value of a PC consultant, within the framework of a comprehensive adult congenital heart disease (ACHD) team caring for ACHD with advanced heart disease, are reviewed.

Investigating the relationship between FRailty And Quality of LIfe in patients with heart faiLure and CKD (FRAIL study).

AIMS: Patients with chronic kidney disease (CKD) or heart failure (HF) are disproportionally affected by frailty, an independent predictor of morbidity. The prevalence of frailty and its impact on quality of life (QoL) in a unique population of patients with both CKD and HF (CKD-HF) is unclear. The aim of this study was to investigate the association between frailty and QoL in patients with CKD-HF. METHODS AND RESULTS: Patients were identified from a tertiary care cardiorenal clinic. Eligible patients had CKD-HF with a stable estimated glomerular filtration rate of <60 mL/min/1.732. Data were collected from each participant at one point in time using surveys delivered by study personnel between 14 July 2022 and 31 March 2023. Frailty was defined as Modified Frailty Phenotype (MFP) score ≥3. The Medical Outcomes Study 36-item Short Form Health Survey (SF-36) was used to assess QoL. Demographic data were retrospectively collected from electronic patient records. Demographics and QoL were compared between frail and non-frail cohorts using Pearson's R and Student's t-test (two-tailed, alpha-priori = 0.05). One hundred five participants consented, and 103 completed the questionnaires in full. Amongst the 103 participants, 49.5% (n = 51) were frail. Frailty was related to sex (P = 0.021) and medication count (P = 0.007), however not to other clinical measures, including estimated glomerular filtration rate (P = 0.437) and ejection fraction (P = 0.911). Frail patients reported poorer QoL across physical functioning (P < 0.001), general health (P < 0.001), bodily pain (P = 0.004), social functioning (P < 0.001), and energy levels (P < 0.001), however not emotional wellbeing (P = 0.058); 51.5% cited 'better quality of life' as their healthcare priority, over longer survival (23.3%) or avoiding hospital admissions (22.3%). This was consistent across frail and non-frail groups. CONCLUSIONS: A large proportion of CKD-HF patients are frail, regardless of disease severity, and more susceptible to significantly poorer QoL across physical and social domains. Improving QoL is the priority of patients across both frail and non-frail cohorts, further emphasizing the need for prompt recognition of frailty as well as possible intervention and prevention.

Professional Employment in Patients on Ventricular Assist Device Support-A National Multicenter Survey Study.

This study aimed to assess patients of working age returning to professional employment as a surrogate marker for functional recovery and psychosocial reintegration after ventricular assist device (VAD) implantation. A national, multicenter study considered professional employment and its relationship to sociodemographic, psychosocial, and clinical adverse outcomes in outpatients on VAD support. Patient-reported outcome measures were administered. The survey had a 72.7% response rate. Mean age of 375 subjects was 58 ± 11 years, 53 (14%) were female. Thirty-five patients (15.15%; 95% confidence interval [CI] = 10.9-20.6) were employed, and the majority of them (n = 29, 82.9%) were bridged to transplantation. A regression model after variable selection revealed younger age (odds ratio [OR] = 0.95; 95% CI = 0.91-0.98; p < 0.005), and higher education (OR = 3.05; 95% CI = 1.72-5.41; p < 0.001) associated with professional employment. Employed patients reported higher health-related quality of life (HRQoL) (Kansas City Cardiomyopathy Questionnaire [KCCQ] overall sum-score, OR = 1.04; 95% CI = 0.92-1.07; p < 0.007), the OR for those employed was 2.18 (95% CI = 0.89-5.41; p < 0.08) indicating no significant relation for employment and a history of adverse events. In this sample, professional employment was rather small; the likelihood of adverse events was not significantly different between groups. Those employed perceived better overall HRQoL, which may encourage clinicians to support professional employment for selected patients on VAD support.

Novel Definitions of Wellness and Distress among Family Caregivers of Patients with Acute Cardiorespiratory Failure: A Qualitative Study.

Rationale: Family caregivers of patients with acute cardiorespiratory failure are at high risk for distress, which is typically defined as the presence of psychological symptoms such as anxiety, depression, or posttraumatic stress. Interventions to reduce caregiver distress and increase wellness have been largely ineffective to date. An incomplete understanding of caregiver wellness and distress may hinder efforts at developing effective support interventions. Objectives: To allow family caregivers to define their experiences of wellness and distress 6 months after patient intensive care unit (ICU) admission and to identify moderators that influence wellness and distress. Methods: Primary family caregivers of adult patients admitted to the medical ICU with acute cardiorespiratory failure were invited to participate in a semistructured interview 6 months after ICU admission as part of a larger prospective cohort study. Interview guides were used to assess caregiver perceptions of their own well-being, record caregiver descriptions of their experiences of family caregiving, and identify key stress events and moderators that influenced well-being during and after the ICU admission. This study was guided by the Chronic Traumatic Stress Framework conceptual model, and data were analyzed using the five-step framework approach. Results: Among 21 interviewees, the mean age was 58 years, 67% were female, and 76% were White. Nearly half of patients (47%) had died before the caregiver interview. At the time of the interview, 9 caregivers endorsed an overall sense of distress, 10 endorsed a sense of wellness, and 2 endorsed a mix of both. Caregivers defined their experiences of wellness and distress as multidimensional and composed of four main elements: 1) positive versus negative physical and psychological outcomes, 2) high versus low capacity for self-care, 3) thriving versus struggling in the caregiving role, and 4) a sense of normalcy versus ongoing life disruption. Postdischarge support from family, friends, and the community at large played a key role in moderating caregiver outcomes. Conclusions: Caregiver wellness and distress are multidimensional and extend beyond the absence or presence of psychological outcomes. Future intervention research should incorporate novel outcome measures that include elements of self-efficacy, preparedness, and adaptation and optimize postdischarge support for family caregivers.