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.

Patient decision-making in left ventricular assist devices for destination therapy.

BACKGROUND: Heart failure is a common life-limiting disease. A destination therapy for people who will not have a heart transplant is a left ventricular assist device. AIMS: To discover how patients who have a left ventricular assist device for destination therapy make decisions about their healthcare after implantation of the device. METHODS: A descriptive qualitative design with semi-structured, in-depth interviews with 11 participants who are living with a left ventricular assist device for destination therapy. FINDINGS: People with a left ventricular assist device felt they had 'no choice' when making decisions about their healthcare. CONCLUSION: Engaging with patients to contemplate present and future healthcare decisions is a complex process that includes cognitive processes within the patient. Clinicians need to be aware that a gap may occur between what is said and what is heard in communication.

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.

High level of psychosocial adjustment in patients on ongoing ventricular assist device support in the years one to three after VAD implantation-A national multi-center Study.

BACKGROUND: Advanced heart failure therapies such as durable ventricular assist device (VAD) support require psychosocial adjustment for those affected. Since VAD implantation has become an established treatment strategy, a focus on psychosocial factors is needed. OBJECTIVES: To investigate the construct of psychosocial adjustment and to further understand the role of social support. METHODS: In a nation-wide, multi-center, cross-sectional study, we recruited 393 participants with ongoing VAD support (3mts-3yrs on device; clinicaltrials.gov ID: NCT04234230). Patient demographics, psychosocial adjustment (perceived social support, anxiety, depression, and quality of life), and major adverse events (thromboembolic events, bleeding, driveline infections) were assessed. RESULTS: Overall, 85.8 % of the sample were male; mean age was 58.3 years (range 18-85). The majority of the sample (89.3 %) reported normal to high perceived social support. Participants expressed symptoms of anxiety within the normal range (M=6.0±3.9), mildly elevated depressive symptoms (HADS: M=7.6±2.9; PHQ-9: M=6.2±4.7), and good quality of life (KCCQ: M=65.3±17.9). Higher perceived social support was associated with lower levels of anxiety and depression, and higher levels of quality of life within our sample (all p<0.001). Driveline infection was the most prevalent adverse event (0.304 infections per person-years [32.6 % of patients]). Binary logistic regression models did not identify significant associations for the occurrence of adverse events and variables of psychosocial adjustment. CONCLUSION: Our sample perceived high levels of psychosocial adjustment. High perceived social support was associated with better outcomes in levels of anxiety, depression, and quality of life, demonstrating potential for the future development and evaluation of targeted multi-professional social support interventions including peer- and caregiver support.

Variation in Left Ventricular Assist Device Postdischarge Caregiver Requirements: Results From a Mixed-Methods Study With Equity Implications.

BACKGROUND: Left ventricular assist device (LVAD) evaluation includes a psychosocial assessment, conducted by social workers (SWs) on the advanced heart failure multidisciplinary team. Postdischarge caregiving plans are central to psychosocial evaluation. Caregiving's relationship with LVAD outcomes is mixed, and testing patients' social resources may disadvantage those from historically undertreated groups. We describe variation in policies defining adequate caregiving plans post-LVAD implant and possible impacts on patients from marginalized groups. METHODS: This was a 2-phase sequential mixed-methods study: (1) phase 1, survey of US-based LVAD SWs, describing assessment structure and policies guiding candidacy outcomes; and (2) phase 2, individual interviews with SWs to further describe how caregiving plan adequacy impacts LVAD candidacy. RESULTS: Sixty-seven SWs returned surveys (rr=47%) from unique programs. Caregiving plan inadequacy (n=30) was the most common psychosocial dealbreaker. When asked what duration of caregiving is required, 23% indicated ≥3 months, 27% 4 to 12 weeks, and 30% <4 weeks. Two reported no duration requirement, 6 stated an indefinite 24/7 commitment was necessary. Across 22 interviews, SWs mirrored that caregiving plans were the most common psychosocial contraindication. How caregiving is operationalized varied. Participants voiced a tension between extended caregiving improving outcomes and the sense that some people of color, women, or low socioeconomic status patients struggle to meet stringent requirements. CONCLUSIONS: Policies regarding adequate duration of 24/7 caregiving vary, but inadequate caregiving plans are the most common psychosocial contraindication. Participants worry about patients' ability to meet restrictive requirements, particularly from historically undertreated groups. This highlights a need to operationalize quality caregiving, standardize assessment, and support medically appropriate patients with strained social resources.

Lived experiences of patients implanted with left ventricular assist devices.

BACKGROUND: Besides survival, improvement in quality of life (QoL) is a major aim of left ventricular assist device (LVAD) implantation. QoL assessment tools in current use are effective in the gathering of standardized metrics but are limited in their ability to elucidate everyday lived patient experiences that also affect overall patient wellbeing. OBJECTIVE: To describe and understand the lived experiences of patients undergoing long-term circulatory support with LVAD. METHODS: A phenomenological approach was used. Purposive sampling of consecutive willing inpatients and outpatients living with an LVAD for longer than 6 months was conducted until theme saturation. There were a total of 21 patients interviewed and this was then recorded and transcribed. RESULTS: A total of eight themes emerged from the data. Overall, the patients' quality of life was affected by: (1) whether they had experienced improvements or setbacks in their recent health condition, (2) experiencing burdens from their device such as weight and handling, (3) limitations in their physical ability such as participating in sports, their inability to work; or reduced sleep, (4) reduced social interactions; (5) reduction in sexual activity and performance; (6) experiencing emotional and psychological problems and experiencing anxiety. Patients highlighted the value of obtaining (7) support from family and friends. The interviews also revealed that some patients experienced the feeling of (8) optimism and obtaining "a second chance" at life. CONCLUSIONS: LVAD patients have unique concerns and lived experiences. Some themes emerging from this interview series such as having to give up work, having reduced social contact, reduced sexual activity and emotional problems, family support structures demand careful attention during the pre-implantation counselling and post implantation ongoing care. These aspects also deserve more attention in quality of life studies among LVAD patients. Patients with recent improvements in health reported a more positive outlook. Overall the majority of patients reported feeling that they obtained a second chance at life.

A qualitative study of life with a left ventricular assist device as a bridge to transplant: A new normal.

OBJECTIVE: To explore the lived experiences of individuals with a left ventricular assist device (LVAD) as a bridge to transplant. DESIGN: A qualitative descriptive study of ten patients in the Midwestern United States between 30 and 60 years, with a device implanted between six and 18 months were interviewed. A semi-structured interview guide was utilized to elicit a detailed account of individuals living with an LVAD. Content analysis with an inductive coding approach was used to analyze the interview transcripts. FINDINGS: Three major themes, encompassing several sub themes emerged from the data. (1) physical adjustments (reality shock, carrying the batteries, a new routine, showering, and sleep) (2) emotions (decision making, attitude, gratitude, and uncertainty) (3) psychosocial aspects (intimacy adaptations, self-perception, and perception by others) CONCLUSION: The reality of living with a device was 'not normal' but with time it became their new normal. Findings from this study will inform healthcare professionals (HCP) on the lived experience of patients with LVADs. This new knowledge will assist HCPs to engage in realistic discussions with patients contemplating an LVAD implant. Sharing the challenges of patients with LVADs will help future transplant recipients to be better prepared for their new lifestyle.

Research engagement and experiences of patients pre- and post-implant of a left ventricular assist device from the mechanical circulatory support measures of adjustment and quality of life (MCS A-QOL) study.

PURPOSE: Adults living with mechanical circulatory support (MCS) present with unique challenges (e.g., left ventricular assist device [LVAD]-related self-care, adverse events) to research study enrollment, engagement, and completion. The purpose of this study was to understand the experiences of adults with MCS who were eligible for and enrolled in a study of health-related quality of life (HRQOL). METHODS: In a secondary analysis of data from the Mechanical Circulatory Support: Measures of Adjustment and Quality of Life study, we used a mixed-methods approach to evaluate research engagement and experiences among adults preparing to undergo or currently living with MCS implant. First, we assessed the cascade of study engagement. Second, we assessed research experiences using a structured interview developed for this study. RESULTS: Of 1011 participants approached for the study, 86.7% enrolled, 12.7% declined, and 0.6% were ineligible. Of 877 participants enrolled, 272 were pre-implant (of whom 88% completed assessments; "respondents") and 605 were post-implant (of whom 74% completed assessments). Only 14% of respondents reported difficulty completing the questionnaires, 54% had previously used an iPad to complete questionnaires, and 62% reported that their experience was "as expected." Respondents qualitatively described both positive (e.g., value of research) and negative (e.g., too much time) research experiences, difficulties completing questionnaires (e.g., online platform, health literacy issues), and provided recommendations for the questionnaires and delivery. CONCLUSIONS: Participants enjoyed participating in HRQOL research focused on MCS and had unique perspectives for improving the questionnaires. It is important to minimize the burden of participation and critical to be flexible to meet participant preferences for research engagement. TRIAL REGISTRATION: NCT03044535 (accessible at https://clinicaltrials.gov/ct2/show/NCT03044535 ), registered February 7, 2017.

Health-Related Quality of Life in Older Patients With Advanced Heart Failure: Findings From the SUSTAIN-IT Study.

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, χ2 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.

Acceptance of Illness Among Patients Pursuing Transplantation or Left Ventricular Assist Device.

Acceptance of illness is related to better mental health among patients with chronic illness; however, this construct has not been evaluated as part of routine transplantation evaluations. The purpose of this study was to create a brief measure of acceptance of illness for patients pursuing organ transplantation and examine how acceptance is related to distress. Retrospective medical record reviews were conducted for 290 patients who completed a routine psychosocial evaluation prior to transplant listing which included the Illness Acceptance Scale (IAS). Internal consistency for the IAS was excellent (Cronbach's alpha = .92). Illness acceptance was negatively correlated with depression, anxiety, and catastrophizing and was not related to health literacy or health numeracy. The IAS is a reliable and valid measure for patients who are pursuing thoracic transplant or left ventricular assist device. Clinicians may want to screen transplant candidates for illness acceptance and refer those with lower levels to psychological interventions.

Psychological difficulties of LVAD patients and caregivers: A follow up over one year from discharge.

BACKGROUND: After the rehabilitation program, patients with left ventricular assist device (LVAD) are discharged home, but the adaption to the daily life with the implant is challenging, both with practical and psychological consequences. Literature is lacking detailed information about the quality of life of LVAD patients and caregivers after discharge to home. OBJECTIVE: This study aimed at evaluating the post-discharge outcomes of both LVAD patients and their caregivers in terms of quality of life, affectivity, and psychological health. METHODS: In this observational follow-up study, LVAD dyads discharged home from 1 year to 6 years were re-contacted by phone and received by mail an envelope with self-report questionnaires. Responses of 39 complete dyads of patients (mean age 68.59 ± 4.31; males: 92.31%) and their caregivers (mean age 61.59 ± 11.64; males: 17.95%) were analyzed. RESULTS: Patients and caregivers reported the moderate levels of anxiety, depression, and caregiver strain, and Illness denial and conscious avoidance were associated between them. The couples often reported that the LVAD has impairments for their sleep and for their affective-sexual relationship. Caregivers often reported impairment in social life and self-care. DISCUSSIONS: Despite the satisfaction for the medical and territorial assistance, patients showed psychological difficulties such as anxious and depressive symptoms and caregivers tend to neglect themselves. Even after a long time from discharge to home, the psychological distress of LVAD patients and caregivers is still considerable. Structured and continuous psychological interventions are required to support their psychological health overtime after the discharge to home.

What is the lived experience of patients with left ventricular assist devices during the COVID-19 pandemic? A qualitative analysis.

BACKGROUND: During the COVID-19 outbreak, patients with left ventricular assist device (LVAD) faced several changes in their daily life. However, the effects of these changes on the patients' lived experiences are not still investigated. AIMS: The current study explored the lived experience of people with left ventricular assist device (LVAD) during the COVID-19 pandemic. During the COVID-19 outbreak, people with LVADs faced several changes in their daily life. However, the effects of these changes on the patients' lived experiences are not still investigated. METHODS AND RESULTS: Qualitative data analysis was conducted employing the interpretative phenomenological analysis approach. We followed the Standards for Reporting Qualitative Research guidelines. Eight male participants with LVAD aged from 65 to 82 were interviewed. Overall, two main themes ('Worsening of psychological distress' and 'Moving forward') and eight sub-themes emerged from the qualitative analysis. CONCLUSIONS: People with LVADs experienced feelings of worry and solitude related to the risk of being infected or not receiving adequate treatment due to changes in the healthcare system during the pandemic; however, they managed to move forward with their lives using different strategies for dealing with the difficult situation.

Postdischarge Functional Capacity, Health-Related Quality of Life, Depression, Anxiety, and Post-traumatic Stress Disorder in Patients Receiving a Long-term Left Ventricular Assist Device.

BACKGROUND: There is a paucity of data on depression, anxiety and post-traumatic stress disorder after left ventricular assist device (LVAD) implantation. We designed an observational study to integrate these with functional capacity and health-related quality of life (HR-QOL) in surviving LVAD patients. METHODS AND RESULTS: Consenting patients between 1 month and 9 years after LVAD implantation (n = 121) were screened for functional capacity (World Health Organization Disability Assessment Schedule 2.0 [WHODAS 2.0)]); HR-QOL (European Quality of Life [EQ-5D] and Visual Assessment Scales [EQ-VAS]), depression (Patient Health Questionnaire [PHQ-9], anxiety (Generalized Anxiety Disorder Scale [GAD-7]) and post-traumatic stress disorder (Impact of Event Scale Revised [IES-R]). Of the 94% of patients who consented, 34.7% reported impaired functional capacity (WHODAS 2.0 score of ≥25%), 23.1%-34.7% HR-QOL problems (domain EQ-5D of ≥3), 10.7% "poor health" (EQ-VAS of ≤40), 14.9% depression (PHQ-9 of >14), 11.7% suicidal ideation and 17.5% anxiety (GAD-7 of >10). Among these patients, 23.5% had a positive screen for post-traumatic stress disorder (IES-R of ≥24). An EQ-VAS of 80 or greater predicted good functional capacity (P < .001). CONCLUSIONS: One-third of discharged LVAD patients reported impaired function, HR-QOL, and psychological issues. A standardized evaluation before and after LVAD implantation could facilitate psychologic prehabilitation, inform decision-making, and identify indications for mental health intervention.

Psychological burden and coping in destination therapy patients with a left ventricular assist device: A qualitative content analysis.

BACKGROUND: Due to an increasing prevalence of heart failure and persistent shortage of donor hearts, the number of left ventricular assist device (LVAD) implantations is growing. As more patients live with LVADs for prolonged periods of time, psychosocial outcomes are becoming more relevant. This particularly applies to destination therapy (DT) patients, who live with the LVAD for the rest of their lives. METHODS: We used a cross-sectional qualitative design to explore psychological burden, coping strategies, and resources from the perspective of DT patients. Data were collected via semi-structured in-depth interviews with 18 patients who lived with the LVAD for 3 months to over 10 years. These were analyzed using an inductive content analysis. Due to the COVID-19 pandemic, changes to the recruitment strategy and data collection strategies of the original study protocol were applied. Patients and clinicians were involved throughout the research process to ensure the validity of the results and implications. RESULTS: We synthesized 10 psychosocial, health, and treatment-related burdens and identified 15 problem- and emotion-focused coping strategies and 5 personal and environmental resources patients used to cope with the burden. CONCLUSIONS: The findings provide deeper insights into the complex and specific situation of LVAD patients to better address the patient situation in health care and promote positive psychosocial outcomes. So far, health care practice and quality vary significantly between clinics due to individual treatment protocols. Our results highlight the need to improve medical and psychosocial care. Overarching care concepts may be developed based on the implications.

Recommendations for Psychosocial Evaluation of VAD candidates: Adoption, completion, and barriers to implementation.

BACKGROUND: Recommendations exist to guide clinicians on a comprehensive psychosocial (PS) evaluation prior to Mechanical Circulatory Support (MCS) implantation. OBJECTIVES: Assess adoption, beliefs, methodologies, and barriers to completion of the 2018 ISHLT/APM/AST/ICCAC/STSW Recommendations for Psychosocial evaluation of adult cardiothoracic transplant and long term mechanical circulatory support. METHODS: Cross-sectional survey distributed to all 183 implanting LVAD centers in North America via mail and email. RESULTS: Total of 58 Programs (35.6% response rate) representing 29 states and all regions of the United States responded. Respondents reported implanting 1,183 adults (range 0 - 85; mean = 21.5, SD = 18) in 2018. A majority (n = 55, 94.8%) reported that the 2018 Recommendations were consistent with their clinical practice and most (n = 51, 87.9%) had adopted the recommendations. The Stanford Integrated Psychosocial Assessment for Transplant (SIPAT) (n = 25, 47.1%) was the most commonly cited assessment tool in the use, although 15 centers reported utilizing more than one tool during the assessment process. Most common barriers influencing completion of the PS evaluation include patient too ill (total responses = 104), lack of time (total responses = 89), patient poor candidate (total responses = 44), and lack of Insurance coverage/reimbursement (total responses = 41). CONCLUSION: The 2018 ISHLT Recommendations for PS evaluation of LVAD Candidates are widely adopted by respondents in clinical practice, although barriers are still reported to their implementation. Additional research is needed to understand strategies to reduce barriers to implementation and maintenance of the recommendations in clinical practice.

Stress and Coping Among Family Caregivers of Patients With a Destination Therapy Left Ventricular Assist Device: A Multicenter Mixed Methods Study.

BACKGROUND: Family caregivers of patients with a destination therapy left ventricular assist device play a central and formalized role in postimplant care. We aimed to characterize longitudinal stress, predictors and correlates of stress, and coping processes among left ventricular assist device caregivers. METHODS: We performed a sequential, exploratory, mixed-methods study from 6 diverse left ventricular assist device programs. The primary outcome for the quantitative analysis was the Perceived Stress Scale-10 at 6 months (0-40). Based on the quantitative findings and guided by the Transactional Model of Stress and Coping, semistructured interviews explored causes of stress and coping processes. Integration was performed during the qualitative and interpretation phase. RESULTS: A total of 96 caregivers met inclusion criteria for quantitative analysis. Mean (SD) Perceived Stress Scale score was 14.3 (5.5) preimplant and 11.8 (6.9) at 6 months. Preimplant, only decreased preparedness for caregiving was associated with higher Perceived Stress Scale score at 6 months. At 6 months, increased caregiver depressive symptoms, decreased caregiver preparedness for caregiving, and lower patient quality of life were associated with higher Perceived Stress Scale score. Qualitative analysis of 25 caregivers revealed the causes of stress coalesced around 3 themes: (1) lack of preparedness to be a caregiver, (2) uniqueness of stress for the caregiver and patient situation, and (3) caregiving responsibilities physically and emotionally impacting caregivers. To cope with stress, most caregivers employed emotion-focused coping. CONCLUSIONS: In family caregivers of patients with a left ventricular assist device, higher perceived stress was associated with lower caregiver preparedness, higher caregiver depressive symptoms, and lower patient quality of life. Emotion-focused coping strategies were common for caregivers. Future work should better prepare caregivers for this role and support them through the caregiving experience. Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT02344576.

Factors Associated With Health-Related Quality of Life 2 Years After Left Ventricular Assist Device Implantation: Insights From INTERMACS.

Background Factors related to health-related quality of life (HRQOL) 2 years after left ventricular assist device (LVAD) implantation are unknown. We sought to determine whether preimplant intended goal of LVAD therapy (heart transplant candidate [short-term group], uncertain heart transplant candidate [uncertain group], and heart transplant ineligible [long-term group]) and other variables were related to HRQOL 2 years after LVAD implantation. Methods and Results Our LVAD sample (n=1620) was from INTERMACS (Interagency Registry for Mechanically Assisted Circulatory Support). Using the EuroQol-5 Dimension Questionnaire (EQ-5D-3L), a generic HRQOL measure, and the Kansas City Cardiomyopathy Questionnaire (KCCQ-12), a heart failure-specific HRQOL measure, multivariable linear regression modeling was conducted with the EQ-5D-3L Visual Analog Scale (VAS) score and KCCQ-12 overall summary score (OSS) as separate dependent variables. Two years after LVAD implant, the short-term group had a significantly higher mean VAS score versus the uncertain and long-term groups (short-term: 75.18 [SD, 20.62]; uncertain: 72.27 [SD, 20.33]; long-term: 70.87 [SD, 22.09], P=0.01); differences were not clinically meaningful. Two-year mean scores did not differ by group for the KCCQ-12 OSS (short-term, 67.85 [SD, 20.61]; uncertain, 67.79 [SD, 19.31]; long-term, 67.08 [SD, 21.49], P=0.80). Factors associated with a worse VAS score 2 years postoperatively (n=1205) included not working; not having a short-term LVAD; and postoperative neurological dysfunction, greater health-related stress, coping poorly, less VAD self-care confidence, and less satisfaction with VAD surgery, explaining 28% of variance (P<0.001). Factors associated with a worse KCCQ-12 OSS 2 years postoperatively (n=1250) included not working; history of high body mass index and diabetes mellitus; and postoperative renal dysfunction, greater health-related stress, coping poorly, less VAD self-care confidence, less satisfaction with VAD surgery, and regret regarding VAD implantation, accounting for 36% of variance (P<0.001). Conclusions Factors related to HRQOL 2 years after LVAD implantation include demographic, clinical, and psychological variables.

Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

Psychosocial outcomes in pediatric patients with ventricular assist devices and their families: A systematic review.

Ventricular assist device (VAD) therapy has provided pediatric patients with severe heart failure new therapeutic options. However, pediatric patients and families receiving VAD therapy also experience psychosocial challenges. No synthesis of the literature on psychosocial outcomes within the pediatric VAD population has been conducted; thus, the current review sought to systematically investigate the impact of pediatric VAD on patient, parent, and family psychosocial outcomes and assess variables associated with poorer outcomes. Literature searches were conducted in PsycInfo, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases and full texts were assessed according to pre-established inclusion criteria. Main findings and study quality were reviewed. Sixteen studies were included in the present review. Findings highlighted the likelihood for psychological sequelae among pediatric patients and families receiving VAD therapy, including decreased psychological and emotional well-being, elevated stress, and difficulty coping with changes to family dynamics and responsibilities. Health-related quality of life was reported comparable to that of healthy peers and children with other cardiac conditions. Patients and families on VAD therapy experience significant difficulties in psychological well-being and challenges related to adjustment. The current review underscores the importance of ongoing support for families and continued assessment of psychosocial functioning across VAD support. Three critical periods for increased distress were identified: 1) immediately following VAD implantation, 2) discharge home and the weeks following discharge, and 3) long-term VAD therapy.

Relationship quality, dyadic coping, and depression in couples with left ventricular assist device implantation.

AIMS: Living with a left ventricular assist device (LVAD) can be associated with many burdens and worries for patients. They are often dependent on the support of their spouses. This can also be a burden on the spouses and the relationship. However, the relationships quality of LVAD couples has so far scarcely been investigated. Couple's mutual coping with stress (dyadic coping, DC), as well as depression are important factors influencing relationship quality. To examine patients' with an LVAD and their partners' ability to cope with stress and levels of depression, and the impact these have on relationship quality. METHODS AND RESULTS: The study investigates relationship satisfaction in couples after LVAD implantation as well as influencing factors such as DC or depression. Differences in relationship quality, DC, and depression between patients and spouses are examined using validated questionnaires. N = 39 heterosexual couples with male patients participated. Relationship quality of patients was higher than that of their spouses. The actor-partner-interdependence model provided for spouses actor effects on relationship satisfaction of their own DC, partner DC, and depression. For patients, actor effects of partner DC and depression as well as a partner effect of depression were found. In addition, DC of patients was estimated by both partners to be lower than DC of spouses. CONCLUSION: The results indicate a high rate of depression among LVAD patients and spouses. This study contributes to the knowledge about the mental state of LVAD couples and demonstrates that the spouses should be considered during treatment.