Caregiver Health-related Quality Of Life Research Articles

Perceived social support and health-related quality of life in older adults who have multiple chronic conditions and their caregivers: a dyadic analysis.

Patients who have multiple chronic conditions (MCCs) and their informal caregivers experience poorer health-related quality of life (HRQOL). Perceived social support has been shown to influence HRQOL. This study aimed at identifying the differences between patients' and caregivers' physical and mental HRQOL; and determining the association between their perception of social support from different sources, and their own and their dyad partner's HRQOL. Patients with MCCs and their caregivers (345 dyads) were enrolled in a multicenter cross-sectional study conducted in Italy. The Multidimensional Scale of Perceived Social Support measured perceived social support from family, friends, and significant others, and the 12-Item Short-Form Health Survey measured the physical and mental component of HRQOL in dyads. The dyadic analysis was conducted using the Actor-Partner Interdependence Model through structural equation modelling. Family support perceived by each member of the dyad was associated positively with their own mental HRQOL, and that family support perceived by caregivers was also associated positively with patients' mental HRQOL. Greater family support perceived by caregivers was also associated with better physical HRQOL in both caregivers and patients. Moreover, greater friend-support perceived by each member of the dyad was positively associated with own physical HRQOL. The study suggests the reciprocal influence of perceived social support from family and friends on physical and mental HRQOL in MCC dyads. Healthcare professionals should identify those people who are the main sources of support for each member of the dyad, and develop care plans that promote the maintenance and enhancing of this support.

Quality of Life Among Caregivers of a Vulnerable Population Living with HIV: Caregiving and Relationship Factors.

Literature on health-related quality of life (HRQOL) has focused on people living with chronic conditions, with less attention given to HRQOL among informal caregivers. We used cross-sectional dyadic data from both care recipients (CR) living with HIV and the person they identified as their primary informal (unpaid) caregiver (CG) to identify psychosocial and caregiving relationship factors (including, CG role ambivalence and caregiving-related stress) associated with CG HRQOL. We conducted confirmatory factor analysis and structural equation modeling testing. The results highlight interdependent effects of the CG-CR relationship and reveal pathways whereby relationship interactions positively and negatively impact CGs' HRQOL. Affiliative stigma, CG-CR communication, CRs' reciprocity of support and other psychosocial factors indirectly and differentially affected physical and mental HRQOL through effects on secondary stress and role ambivalence. Dyad-focused intervention on interpersonal communication and support exchange may improve HRQOL and resilience of CGs of vulnerable people living with HIV.

Parent-reported sleep problems in school-aged children with fetal alcohol spectrum disorder: association with child behaviour, caregiver, and family functioning

Objective/backgroundSleep problems are a common clinically reported area of concern for children and adolescents with fetal alcohol spectrum disorder (FASD). However, limited empirical research has been undertaken investigating sleep problems for children with FASD. The current study aimed to examine the associations between parent-reported sleep problems in children with FASD and child behaviour, caregiver mental health and health-related quality of life and family functioning. Participants163 caregivers of children diagnosed with FASD aged 5–17 years were included in the current study. MethodCross-sectional online survey that collected information pertaining to child sleep problems (difficulty falling asleep, difficulty staying asleep and/or frequent waking during the night and waking early in the morning) and standardised caregiver reported measures of child behaviour, caregiver mental wellbeing, caregiver health-related quality of life, and family functioning. ResultsSleep problems were common, affecting 65.6% (n = 107) of participants. Difficulty falling asleep (56.4%) was the most common sleep problem encountered, followed by difficulty staying asleep (44.8%) and waking early (29.4%). Sleep problems were associated with increased rates of child behaviour problems and caregiver anxiety and negative impacts on caregiver and family quality of life. ConclusionSleep problems in children and adolescents with FASD are common and associated with poorer child, caregiver and family outcomes. Future research needs to determine whether effective identification and management of sleep problems can reduce adverse outcomes.

Does health-related quality of life in Asian informal caregivers differ between early-onset dementia and late-onset dementia?

Early-onset dementia (EOD) (defined as dementia onset before age 65) presents specific challenges and issues, adding to the negative impact of dementia on the health-related quality of life (HRQOL) of both patients and their caregivers. However, very few published studies have specifically compared the HRQOL of caregivers of people with EOD and late-onset dementia (LOD). This information is critical in allocating and prioritizing scarce health-care resources. We aimed to assess the HRQOL of primary informal caregivers of community-dwelling individuals with EOD in Singapore and compare it with that of caregivers of individuals with LOD. This was a cross-sectional study of consecutive patient-caregiver dyads from a tertiary dementia clinic. No significant differences in disease severity were found between the 111 EOD and 235 LOD patient-caregiver dyads. The mean Mental Component Summary score of the 36-item Short-Form Health Survey version 2 was significantly worse in caregivers of EOD patients than in LOD caregivers (mean: 41.42 vs 45.12, P = 0.001), although the mean Physical Component Summary scores were comparable (49.71 vs 49.53, P = 0.934). However, the impact of dementia early onset on caregivers' mental health diminished immediately after adjustment for the disease severity indicators, of which the Neuropsychiatric Inventory Questionnaire distress score was the only significant clinical factor (regression coefficient β = -0.29, P < 0.001). The amount of variability in the HRQOL of the caregivers explained by patient and caregiver factors across all the models was rather small (adjusted R2 = 19.3% for the Mental Composite Score, 5.2% for Physical Composite Score). Caregivers of EOD patients had worse mental health than LOD caregivers probably because individual with EOD have more behavioural disturbances. This reinforces the indispensable role of managing behavioural problems when caring for a family member with dementia, especially for EOD. HRQOL ideally needs to be assessed based on self-report rather than inferences from indirect data such as the subjective caregiver burden.

Family Caregivers of Children With Medical Complexity: Health-Related Quality of Life and Experiences of Care Coordination.

To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). From July 2018 to July 2019, family caregivers of CMC completed an electronic survey (n=136) at the time of initial contact with a regional complex care medical home. Information on caregiver HR-QOL and receipt of care coordination services were assessed using the Center for Disease Control's HR-QOL-14 measure and Family Experiences of Care Coordination questionnaire, respectively. Negative binomial regression, adjusted for caregiver and child characteristics, examined associations between caregiver HR-QOL and caregiver experiences of care coordination. In the 30 days prior to initial contact, CMC caregivers reported a median of 3.5 mentally unhealthy days, 2 days felt depressed, 7 days felt anxious, and 16 days with insufficient sleep. Caregivers who had a knowledgeable, supportive care coordinator who advocates for their child reported significantly fewer days mentally unhealthy (incidence rate ratio [IRR], 0.46; 95% confidence interval [CI], 0.22-0.95), depressed (IRR, 0.44; 95% CI, 0.21-0.91), or anxious (IRR, 0.5; 95% CI, 0.29-0.85). Having a shared care plan was associated with significantly fewer days mentally unhealthy (IRR, 0.46; 95% CI, 0.23-0.93) or anxious (IRR, 0.53; 95% CI, 0.31-0.92). Having a written visit summary with appropriate content was associated with fewer days of insufficient sleep (IRR, 0.63; 95% CI, 0.43-0.93). CMC family caregivers report experiencing mentally unhealthy days and negative mental symptom days. The experience of specific care coordination activities was associated with higher caregiver mental HR-QOL.

The Psychosocial Impact of Food Protein-Induced Enterocolitis Syndrome

Little is known about the psychosocial impact of food protein-induced enterocolitis syndrome (FPIES). To characterize quality of life, stress, worry, anxiety, and self-efficacy in caregivers of children with FPIES and affected children, and determine risk factors for increased psychosocial burden. Surveys completed by caregiver-members of the International FPIES Association at a conference (n= 42) and online (n= 368) were analyzed. There was significant burden, stress, worry, and anxiety among caregivers. There was a positive correlation among Food Allergy Quality of Life-Parental Burden, Perceived Stress Scale-10, Penn State Worry Questionnaire, and Beck Anxiety Inventory scores, and these were negatively associated with Food Allergy Self-Efficacy for Parents (FASE-P) scores. Lower income was associated with poorer caregiver health-related quality of life (HRQoL) (P= .039) and lower FASE-P (P= .028). Greater number of food groups avoided correlated moderately with poorer HRQoL (r= 0.386; P < .001), higher anxiety among preschoolers (r= 0.262; P= .013) and parents (r= 0.594, P= .025). Avoiding cow's milk due to FPIES was associated with poorer caregiver HRQoL (P < .001), higher stress (P= .001), and lower FASE-P (P= .013). Caregivers whose child was not attending daycare/school due to FPIES had poorer HRQoL (P < .001), higher stress (P < .014), and worry (P= .004). Compared with published cohorts of caregivers of children with IgE-mediated food allergy, the burden of FPIES on caregivers was significantly higher (mean= 3.4 vs 3.0; P < .001) and self-efficacy was significantly lower (mean= 63.9 vs 76.1; P< .001). There is increased stress, worry, anxiety, and reduced HRQoL and self-efficacy among caregivers of children with FPIES and increased general anxiety among preschoolers. Additional research is needed to inform effective psychosocial interventions.

Prenusinersen economic and health-related quality of life burden of spinal muscular atrophy.

To quantify the economic and health-related quality of life (HRQoL) burden incurred by households with a child affected by spinal muscular atrophy (SMA). Hospital records, insurance claims, and detailed resource use questionnaires completed by caregivers were used to capture the direct and indirect costs to households of 40 children affected by SMA I, II, and III in Australia between 2016 and 2017. Prevalence costing methods were used and reported in 2017 US dollar (USD) purchasing power parity (PPP). The HRQoL for patients and primary caregivers was quantified with the youth version of the EQ-5D and CareQoL multiattribute utility instruments and Australian utility weights. The average total annual cost of SMA per household was $143,705 USD PPP for all SMA types (SMA I $229,346, SMA II $150,909, SMA III $94,948). Direct costs accounted for 56% of total costs. The average total indirect health care costs for all SMA types were $63,145 per annum and were highest in families affected by SMA II. Loss of income and unpaid informal care made up 24.2% and 19.8% respectively, of annual SMA costs. Three of 4 (78%) caregivers stated that they experienced financial problems because of care tasks. The loss in HRQoL of children affected by SMA and caregivers was substantial, with average caregiver and patient scores of 0.708 and 0.115, respectively (reference range 0 = death and 1 = full health). Our results demonstrate the substantial and far-ranging economic and quality of life burden on households and society of SMA and are essential to fully understanding the health benefits and cost-effectiveness associated with emerging disease-modifying therapies for SMA.

Resilience is associated with health-related quality of life in caregivers of service members and veterans following traumatic brain injury.

To examine factors related to resilience in military caregivers across caregiver health-related quality of life (HRQOL), caregiver sociodemographic variables, and service member/veteran (SMV) injury and health status. Caregivers (N = 346, Female = 96.2%; Spouse = 91.0%; Age: M = 40.6years, SD = 9.3) of SMVs following a mild, moderate, severe, or penetrating TBI were recruited from U.S. military treatment facilities and via community outreach. Caregivers completed select TBI-CareQOL and NIH Toolbox scales, the Caregiver Appraisal Scale, Caregiver Questionnaire, and Mayo-Portland Adaptability Inventory-4. Caregivers were divided into three groups using the TBI-QOL Resilience scale: (1) Low-Moderate Resilience (n = 125), (2) Moderate Resilience (n = 122), and (3) Moderate-High Resilience (n = 99). Factors related to low caregiver resilience were strain on employment, financial burden from out-of-pocket expenses, caring for children, less personal time, caring for both verbal and physical irritability, anger, and aggression, and lower SMV functional ability (all p's < .05). The Low-Moderate Resilience group had consistently worse HRQOL scores compared to the Moderate and Moderate-High Resilience groups (ps < .001; d = .50-1.60), with the exception of Caregiving Ideology. Lower resilience among caregivers of SMVs following TBI is associated with poorer caregiver HRQOL. Programs aimed at promoting and maintaining resilience in military caregivers long-term is important for their own health, the health of the SMV, and the health of their children.

Basic Principles of Health-Related Quality of Life in Parents and Caregivers of Pediatric Surgical Patients with Rare Congenital Malformations-A Scoping Review.

The diagnosis of a rare congenital malformation with necessary surgical treatment is an emotionally stressful event in a parent's life and may impact parental health-related quality of life (HrQoL). We aimed to review the literature on HrQoL in parents and caregivers of pediatric surgical patients with rare congenital malformations and summarize the results. For this scoping review, a literature search in PubMed was conducted from inception to November 21, 2019. Inclusion and exclusion criteria to select articles were defined a priori. Four articles (published 2014-2018) describing HrQoL in parents of pediatric surgical patients with rare congenital malformations in comparison to population-based references or healthy control groups were identified. Only European studies were found, and sample sizes varied between 15 and 87 participants. Results for parental HrQoL yielded inconsistencies. So far, only a few studies with small sample sizes focus on parental HrQoL in pediatric surgical patients with rare congenital malformations. To gain a comprehensive understanding of the impact of a rare congenital malformation on HrQoL of all family members, it is necessary to consider three main aspects: (1) to use both generic- and disease-specific instruments measuring HrQoL of the young patient as well as his/her parents and siblings in larger sample sizes, (2) to collect longitudinal data, and (3) to consider a mixed-method approach.

The association of stroke severity with health-related quality of life in survivors of acute cerebrovascular disease and their informal caregivers during the first year post stroke: a survey study

PurposeTo describe the health-related quality of life (HRQoL) of caregivers and survivors of transient ischaemic attack (TIA) and stroke during one year post discharge in comparison to age- and sex-matched population norms; and to analyse the association of initial stroke severity, measured by a routinely used stroke-specific scale, on subsequent HRQoL of caregivers and survivors.MethodsCohort of hospitalized patients with TIA and stroke discharged alive from a large university hospital in Norway, and their informal caregivers. Questionnaires at 3 and 12 months post discharge were filled out by caregivers (n = 320 and n = 326, respectively) and survivors (n = 368 and n = 383, respectively). Multivariable linear regression analyses tested associations between initial stroke severity (National Institutes of Health Stroke Scale, NIHSS) and HRQoL (EQ-5D-3L) in caregivers and survivors.ResultsCaregivers of survivors with TIA or stroke did not report lower HRQoL than matched norms. There was some evidence of an association of the NIHSS with caregiver HRQoL at 3 months only (age–sex-adjusted coefficient − 0.01, p = 0.008), however, this was attenuated after additional adjustments. Survivors with stroke, but not TIA, reported lower HRQoL than population norms at both time points. There was a negative association between higher NIHSS scores and survivors’ HRQoL; fully adjusted coefficient − 0.01 at both time points (p = 0.001).ConclusionThe informal caregivers and survivors with TIA did not report lower than expected HRQoL. Increasing stroke severity was associated with decreasing HRQoL among survivors, but had limited predictive value among caregivers. Other factors may therefore be better indicators of ‘at risk’ caregivers.

PRO93 DO CAREGIVERS AND PATIENTS VALUE THE AVOIDANCE OF LUMBAR PUNCTURES IN SPINAL MUSCULAR ATROPHY? A STATED PREFERENCE SURVEY

Spinal muscular atrophy (SMA) is a rare, inherited neuromuscular disease. The primary study objective was to evaluate UK caregiver and patient preferences for treatment attributes in Type 2 and non-ambulatory Type 3 SMA. A secondary objective was to measure caregiver health-related quality of life (HRQoL).

The Experience of Caregivers Following a Moderate to Severe Traumatic Brain Injury Requiring ICU Admission.

Survivors of moderate and severe traumatic brain injury (TBI) require substantial care, much of which is ultimately provided by friends and family. We sought to describe the unmet needs of informal caregivers. Qualitative, semistructured interviews with informal caregivers of moderate and severe TBI survivors were conducted 72 hours, 1 month, 3 months, and 6 months after injury. Intensive care unit of a level 1 trauma center. Informal caregivers were friends or family who planned to provide care for the patient. Patients were 18 years or older with a moderate to severe TBI, and not expected to imminently die of their injuries. Eighteen patient-caregiver dyads were enrolled. Fifty-three interviews with caregivers were completed and analyzed over the course of 6 months. Three themes were identified in the qualitative analysis: caregiver burden, caregiver health-related quality of life, and caregiver needs for information and support. This study provides new information about the experience of informal caregivers during the 6 months after their friend or family member survived a moderate to severe TBI. Interventions to promote caregiving may be a substantial opportunity to improve patient-centered outcomes following TBI.

Health-Related Quality of Life and Use of Hospital Services by Patients with Heart Failure and Their Family Caregivers: A Multicenter Case-Control Study.

Heart failure (HF) causes high rates of hospital admissions. It is known that disease progression impacts the health-related quality of life (HRQoL) of both patients and caregivers, yet to date, this finding is based on cross-sectional studies with limited samples. The study aim is to analyze the relationship between HF patients' use of hospital services (a proxy for disease progression) and the HRQoL of their family caregivers. This work is a multicenter nested case-control study on a population of patients admitted to hospitals in southern Spain due to heart failure. The sample comprised 530 patient-caregiver dyads. Hospital admission data were retrospectively collected for the 5 years prior to inclusion in the study. Bivariate analyses and multivariate logistic regression were used to determine associations between patient deterioration and caregivers' quality of life. Patients' use of hospital services was associated with worsened quality of life for family caregivers, with an overall OR of 1.48 (95% CI: 1.23-1.79). A positive correlation was found between patients' perceptions of their physical health and the perceived mental health of caregivers (r = 0.127, p = 0.004) and between the perceived mental health of both (r = 0.291; p <0.0001). Greater use of hospital services by patients with HF is an independent predictor of deterioration of family caregivers' HRQoL. The physical and mental components of patients' and their family caregivers' HRQoL interact and influence each other. Additional factors, such as the nature and intensity of care provided, also determine the worsening of a family caregiver's HRQoL. These results can be used to identify family caregivers of people with heart failure at risk of suffering a deterioration in their health-related quality of life.Increased use of hospital services is an independent predictor of the deterioration of the family caregivers' health-related quality of life. Since clinical nurses are the main provider who gives support and education to family caregivers, they should be alert to this situation and individualize interventions to prevent this deterioration.

Support needs and health-related quality of life of family caregivers of patients requiring prolonged mechanical ventilation and admission to a specialised weaning centre: A qualitative longitudinal interview study

ObjectivesFamily caregivers of patients requiring prolonged mechanical ventilation may experience physical and psychological morbidity associated with a protracted intensive care unit experience. Our aim was to explore potentially modifiable support needs and care processes of importance to family caregivers of patients requiring prolonged mechanical ventilation and transition from the intensive care unit to a specialised weaning centre. Research methodology/designA longitudinal qualitative descriptive interview study. Data was analysed using directed content analysis. SettingA 6-bed specialised weaning centre in Toronto, Canada. FindingsEighteen family caregivers completed interviews at weaning centre admission (100%), and at two-weeks (40%) and three-months after discharge (22%) contributing 29 interviews. Caregivers were primarily women (61%) and spouses (50%). Caregivers perceived inadequate informational, emotional, training, and appraisal support by health care providers limiting understanding of prolonged ventilation, participation in care and decision-making, and readiness for weaning centre transition. Participants reported long-term physical and psychological health changes including alterations to sleep, energy, nutrition and body weight. ConclusionsDeficits in informational, emotional, training, and appraisal support of family caregivers of prolonged mechanical ventilation patients may increase caregiver burden and contribute to poor health outcomes. Strategies for providing support and maintaining family caregiver health-related quality of life are needed.

Factors associated with health-related quality of life among family caregivers of people with Alzheimer's disease.

Based on the ageing population and the inadequate healthcare system in China, the majority of care for patients with Alzheimer's disease (AD) is provided by family caregivers. Caregivers suffer a long-term heavy care burden and pressure, which affects their physical and mental health. The present study aims at investigating health-related quality of life (HRQOL) among family caregivers of AD patients and exploring its influencing factors. This study included 206 family caregivers (76 male, 130 female) of AD patients recruited from one Tier 3 hospital, one psychiatric hospital, two gerocomiums and three communities in Ganzhou city, Jiangxi Province, China. Measures included the World Health Organization (WHO) Quality of Life (WHO/ QOL-BREF) questionnaire, Zarit burden of care scale (ZBI), and social support rating scale (SSRS).We performed face-to-face or telephone interviews with patients and caregivers. The association between possible factors and changes in HRQOL was examined through stepwise multiple regression analysis. The majority of family caregivers felt moderate to severe level of burden. The average HRQOL score was 54.24 ± 10.36. The mean SSRS score was 30.4 ± 10.9. The average ZBI score was 41.2 ± 12.8. The HRQOL of family caregivers of AD patients was negatively correlated with the neuropsychiatric questionnaire score, ZBI score, and chronic diseases of caregivers (P < 0.05), and positively correlated with the SSRS score (P < 0.05). Reduced QOL was highly prevalent among AD patient family caregivers, and the level of burden, neuropsychiatric symptoms of patients, social support, and chronic diseases of caregivers were factors associated with HRQOL, and the effect of care burden is greatest. Interventions aimed at reducing the level of burden should focus not only on the patient but also on the caregiver.

Assessment of Quality of Life of Primary Caregivers of Egyptian Asthmatic Children and Adolescents.

Background:Asthma as a serious public health problem worldwide exerts a serious load on children's health-related quality of life (HRQOL) and their families.Objective:We assess the HRQOL of the primary caregivers of Egyptian asthmatic children and adolescents and its relation to HRQOL of their children and asthma severity.Materials and Methods:A cross-sectional study was conducted on 128 pairs of asthmatic children (7–16 years) and their primary caregivers. Pediatric asthma quality of life (QOL) questionnaire, pediatric asthma caregiver's QOL questionnaire, and asthma control questionnaire were used.Results:Uncontrolled asthmatic patients had statistically significantly lower mean caregiver score compared to controlled asthmatic (P < 0.005). There was a statistically significant positive correlation between caregiver's individual and overall QOL scores and their children (individual and overall QOL scores) (P < 0.05). A statistically significant negative correlation between asthma severity and QOL scores of the caregivers of asthmatic children and adolescents was found (P < 0.05).Conclusion:The QOL of the primary caregivers of asthmatic children is significantly adversely affected by their children's illness severity.

A systematic review and meta-analysis on effective interventions for health-related quality of life among caregivers of people with dementia.

(a) To evaluate the effectiveness of different types of psychosocial interventions on the health-related quality of life among caregivers of individuals with dementia and (b) To present an overview and assessment of the quality of the most recent intervention studies. A systematic review and meta-analysis. MEDLINE, CINAHL, PsycINFO and Cochrane Library electronic databases were searched to find randomized controlled trials (RCTs) published from 2005 - 2017. Using a Boolean search, the key words 'caregivers', 'dementia' and 'quality of life' were combined. The search was completed in January 2018. A total of 26 RCTs were included. Intervention details such as content, mode of delivery and duration were reviewed, and each study's risk of bias was assessed. The effectiveness of each type of intervention was calculated using the Hedges G and a random-effects model. Multicomponent interventions, cognitive behavioural therapy and complementary alternative medicine therapy showed significant effects on improving caregiver's health-related quality of life. Psychoeducation, social support, case management and cognitive rehabilitation therapy failed to produce significant effects. Via this evidence-based systematic review, multicomponent interventions addressing a variety of caregiver needs can be an effective method for enhancing caregiver health-related quality of life. Further large number of studies are needed to verify this study results. The findings of this study inform clinicians which interventions are effective in improving caregivers' health-related quality of life. Defining a standardized protocol for multicomponent interventions will be helpful for clinicians to apply the intervention.

Routine Management, Healthcare Resource Use and Patient/Caregiver-Reported Outcomes of Patients with Transfusion-Dependent β-Thalassaemia in the United Kingdom: A Mixed Methods Observational Study

Routine Management, Healthcare Resource Use and Patient/Caregiver-Reported Outcomes of Patients with Transfusion-Dependent β-Thalassaemia in the United Kingdom: A Mixed Methods Observational Study

Determinants of Burden and Satisfaction in Informal Caregivers: Two Sides of the Same Coin? The CUIDAR-SE Study

The aim of this study conducted in Spain was to analyze and compare burden, severe burden, and satisfaction among informal caregivers in relation to health-related quality of life (HRQoL), type and duration of caregiving, perceived social support, and use of social and health care services. We performed multivariate analyses to identify variables associated with caregiver burden, severe burden, and satisfaction with caregiving, stratified by gender. The results showed that secondary or third-level education, performance of ungratifying tasks, negative coping with caregiving, and more years providing care were associated with greater burden. Variables with protective effect were better perceived health of the person being cared for, better caregiver HRQoL, and high perceived social support. Women were 75% more likely to experience severe burden compared with male caregivers. Burden was reduced by high perceived social support in the case of women and by high caregiver HRQoL in the case of men. The main determinant of caregiving satisfaction for both men and women was perceived social support (OR = 3.11 and OR = 6.64). This study shows the need for interventions that promote gender equality and social support as a means of relieving burden and severe burden and improving satisfaction in both male and female caregivers.

Change in Caregiver Health-Related Quality of Life from before to early after Surgery: Findings from the Sustaining Quality of Life of the Aged: Transplant or Mechanical Support (SUSTAIN-IT) Study

Purpose Understanding health-related quality of life (HRQOL) informs support needs for caregivers (CGs) of patients (pts) with advanced heart failure (HF). We compared HRQOL before/6 months post surgery for CGs of pts undergoing heart transplantation (HT), with or without mechanical circulatory support (MCS), and destination therapy (DT) MCS. Methods Between 10/1/15-12/31/18 we enrolled 302 CGs from 12 U.S. sites: 89 HT with MCS, 104 HT without MCS, and 109 DT MCS. CGs completed the EQ-5D-3L (Visual Analog Scale [VAS]: 0 [worst] to 100 [best] imaginable health state and 5 HRQOL dimensions), PHQ-8 (range = 0-24 with ≥10 = significant depressive symptoms), and STAI-state (range = 20-80; higher score = more anxiety). Results CGs were aged 61.0±10.3 years, majority were spouses (85%), female (86%), and white (86%). CGs reported high overall HRQOL before (83.9±14.0) and after (82.9±15.7) surgery, with no significant differences between groups. CGs in all 3 groups reported low baseline (2.6±2.9) and follow-up (2.9±3.9) depressive symptoms. DT CGs reported significantly higher baseline anxiety levels compared to HT-MCS and HT-non MCS. DT and HT-non MCS caregivers showed significantly reduced anxiety levels over time. See Figure. There were no significant differences in anxiety between groups 6 months post-surgery. Conclusions CGs of pts with advanced HF reported relatively high levels of HRQOL and low levels of depression at baseline and early after surgery. DT CGs reported higher baseline anxiety levels when compared to CGs of HT pts. At 6 months, anxiety levels were similar and low for all groups, suggesting CG adjustment. Identifying CG psychological distress may inform support options and potential treatment.