The Edmonton Symptom Assessment Scale in Heart Failure: A Systematic Review.

BACKGROUND: Heart failure is a troublesome condition with high healthcare utilization and cost. Most individuals with heart failure experience multiple symptoms including breathlessness, pain, depression, and anxiety. PURPOSE: The aim of this study was to review the literature describing the use of the Edmonton Symptom Assessment Scale to assess the burden of symptoms and the impact of symptoms on heart failure outcomes including quality of life and functional outcomes. METHODS: The search engines PubMed, Scopus, CINAHL, and Web of Science were searched from January 2001 to March 2020. A review of literature was undertaken using key terms "heart failure," "CHF," "cardiac failure," "heart decompensation," "myocardial failure," "Edmonton Symptom Assessment Scale". Hand searching of articles was also undertaken. RESULTS: The search resulted in 33 relevant articles, which were imported into Rayyan, a Web-based systematic review software program. We present synthesis of results of studies (1) using the Edmonton Symptom Assessment Scale as an assessment of symptom burden and (2) evaluating the impact of symptom burden on quality of life and functional status. CONCLUSION: This review highlighted the Edmonton Symptom Assessment Scale as a predictive instrument to identify symptom burden, symptom clusters, and symptom changes for patients living with heart failure. The clinical use of the Edmonton Symptom Assessment Scale may identify treatment priorities, promote self-management, inform the treatment plan, and advance effective therapeutic adjustments. The symptom burden in heart failure is high, and improving the symptom experience is an important focus of future healthcare interventions. The Edmonton Symptom Assessment Scale has utility in heart failure management due to psychometric properties and ease of administration. CLINICAL IMPLICATIONS: The Edmonton Symptom Assessment Scale may be useful in measuring patient-reported symptom burden in patients with heart failure in the clinical setting because it correlates well with other heart failure measures on quality of life and functional outcomes and provides useful information on symptom burden.

Establishing the doctor of nursing practice project ethical review process to improve standardization, efficiency, and timeliness.

BACKGROUND: DNP Scholarly projects require review for scientific merit and human subject protection. Rapid growth of DNP programs and projects has increased Institutional Review Board (IRB) burden and increased the length of project approval time when most DNP scholarly projects are quality improvement (QI) projects and not deemed Human Subjects Research (HSR). PURPOSE: Develop a process and describe the rationale for creating and implementing a Project Ethical Review Committee (PERC) in the School of Nursing and to evaluate the experience of the first cohort of submissions. PROCESS: Committee was formed using expert consensus approach, in collaboration with IRB. Standards of Procedures and training materials created. OUTCOME MEASURE: 100 projects submitted to committee; 95 deemed QI (95%) and 5 projects considered HSR (5%). First 94 projects were reviewed, and approval letters sent within 8 weeks. DISCUSSION: This paper discusses how PERC ensures rigorous and ethical review process for standardization, timeliness, and efficiency.

"Talking Around It": A Qualitative Study Exploring Dyadic Congruence in Managing the Uncertainty of Living With a Ventricular Assist Device.

BACKGROUND: Vital components of communicating goals of care and preferences include eliciting the patient and caregiver's definition of quality of life, understanding meaningful activities and relationships, and exploring wishes for care at the end of life. Although current literature suggests framing conversations regarding end of life through the lens of meaning and quality of life, there is limited literature exploring dyadic congruence surrounding these important constructs among patients with ventricular assist devices (VADs) and their caregivers. OBJECTIVES: The purpose of this study was to explore congruence of VAD patient and caregiver perspectives regarding end of life, definitions of quality of life, and meaning in life while managing the uncertainty of living with a VAD. METHODS: We used thematic analysis to analyze semistructured qualitative interviews of 10 patient-caregiver dyads 3 to 12 months after VAD implantation. RESULTS: Three major themes were identified: (1) differing trajectories of uncertainty and worry, (2) a spectrum of end-of-life perspectives, and (3) enjoying everyday moments and independence. Overall, patients and caregivers had differing perspectives regarding uncertainty and end of life. Within-dyad congruence was most evident as dyads discussed definitions of meaning or quality of life. CONCLUSIONS: Dyadic perspectives on end of life, meaning in life, and quality of life can inform how palliative care and VAD teams approach conversations about planning for the end of life. Findings from this study can inform future shared decision-making interventions for patients living with VADs and their caregivers.

Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors.

Increasingly, adolescent, young adult, and adult children are relied upon as donors for their parents undergoing blood and marrow stem cell transplant. How family functioning impacts donors' decision making and whether haploidentical donor children have unique supportive care needs is unknown. In this qualitative research study, we conducted 15 semistructured telephone interviews among individuals who underwent blood or marrow stem cell donation for their parent. Interviews explored donors' perspectives of the transplant experience across the trajectory from screening through early post-transplant follow-up and elicited unmet needs. Major themes included: (1) perception of choice, (2) act of giving back, (3) burdens of donation, (4) anticipated health benefit to parent, and (5) impact of donation on parent/child relationship. The majority of participants described high family functioning, but strain was also evident. Family functioning rarely was reported as affecting the decision to donate, with all donors expressing a sense of obligation. Participants were overwhelmingly satisfied with their decision and the ability to give back to their parent. Suggestions for the health care team to improve the donation experience focused on increased education about potential delays in screening, better description of possible complications for recipients, and provision of emotional support following donation.

PROVIDE-HF primary results: Patient-Reported Outcomes inVestigation following Initiation of Drug therapy with Entresto (sacubitril/valsartan) in heart failure.

BACKGROUND: In PARADIGM-HF, sacubitril/valsartan improved quality of life (QOL) versus enalapril in heart failure with reduced ejection fraction (HFrEF), yet limited data are available regarding QOL changes after sacubitril/valsartan initiation in routine practice. METHODS: PROVIDE-HF was a prospective study within a national research network (Patient-Centered Outcomes Research Network) of HFrEF outpatients recently initiated on sacubitril/valsartan versus controls with recent angiotensin-converting enzyme inhibitor/angiotensin receptor blocker initiation/dose change. The primary end point was mean Kansas City Cardiomyopathy Questionnaire (KCCQ) change through 12 weeks. Other end points included responder analyses: ≥5-point and ≥20-point KCCQ increase. Adjusted QOL change was estimated after propensity score weighting. RESULTS: Overall, 270 patients had both baseline and 12-week KCCQ data (151 sacubitril/valsartan; 119 control). The groups had similar demographics and HF details: median EF 28% and N-terminal pro-brain natriuretic peptide 1083 pg/mL. Sacubitril/valsartan patients had larger improvements in KCCQ (mean difference +4.76; P = .027) and were more likely to have a ≥5-point and ≥20-point response (all P < .05). Adjusted comparisons demonstrated similar numerical improvements in the change in KCCQ (+4.55; 95% CI -0.89 to 9.99; P = .101) and likelihood of ≥5-point increase (odds ratio 1.55; 95% CI: 0.84-2.86; P = .16); ≥20-point increase remained statistically significant (odds ratio 3.79; 95% CI 1.47-9.73; P = .006). CONCLUSIONS: In this prospective HFrEF study of sacubitril/valsartan initiation compared with recent angiotensin-converting enzyme inhibitor/angiotensin receptor blocker initiation/dose change, the between-group difference in the primary end point, mean KCCQ change at 12 weeks was not statistically significant following adjustment, but sacubitril/valsartan initiation was associated with early improvements in QOL and a higher likelihood of ≥20-point improvement in KCCQ at 12 weeks. These data add additional real-world evidence related to patient-reported outcomes following the initiation of sacubitril/valsartan in routine clinical practice.

Social Support Moderates the Relationship Between Perceived Stress and Quality of Life in Patients With a Left Ventricular Assist Device.

BACKGROUND: Living with a left ventricular assist device has significant psychosocial sequelae that affect health-related quality of life (HRQOL). OBJECTIVE: The purpose of this study was to (1) describe psychosocial indicators of stress including perceived stress, depression, fatigue, and coping; (2) examine relationships among stress indicators by level of perceived stress; (3) examine relationships among indicators of stress and clinical outcomes; and (4) test the moderation of social support on the relationship between stress and clinical outcomes. METHODS: Participants were recruited from 2 outpatient clinics in a cross-sectional study design. Standardized measures were self-administered via survey. Descriptive statistics, correlation, and multiple linear regression analysis were conducted. RESULTS: The sample (N = 62) was mostly male (78%), black (47%), and married (66%), with a mean age of 56.5 ± 13 years. The overall sample had a moderate stress profile: moderate perceived stress (mean, 11.7 ± 7), few depressive symptoms (mean, 3.2 ± 3.9), and moderate fatigue (mean, 14.3 ± 9.1). Increased perceived stress was associated with fatigue, depressive symptoms, and maladaptive coping (P < .001). Regression analysis demonstrated that perceived stress and fatigue were significant correlates of overall HRQOL (adj. R = 0.41, P < .0001). Social support moderated the relationship between perceived stress and HRQOL, controlling for fatigue (R = 0.49, P < .001). CONCLUSIONS: Individuals living with left ventricular assist device with high perceived stress have worse depressive symptoms, fatigue, and coping. The influence of high social support to improve the relationship between stress and HRQOL underscores the importance of a comprehensive plan to address psychosocial factors.

Heart Failure Rehospitalization and Delayed Decision Making: The Impact of Self-care and Depression.

BACKGROUND: Rehospitalization soon after discharge can be distressing for persons with heart failure (HF) and places a heavy burden on the healthcare system. OBJECTIVE: We investigated and explored the association of self-care decision making variables with (1) rehospitalization within 30 days of discharge and (2) delay in seeking medical assistance (delayed decision making). METHODS: A cross-sectional, explanatory sequential mixed methods design (quan > qual) was used to survey 127 hospitalized HF patients and interview 15 of these participants to explain their survey responses. The survey assessed rehospitalization within 30 days of discharge, delayed decision making, HF self-care, and psychosocial factors influencing self-care. RESULTS: The likelihood of delaying the decision to be hospitalized was more than 5 times higher among those with high depressive symptoms (odds ratio, 5.33; 95% confidence interval, 2.14-13.28). Those who delayed going to the hospital were uncertain about their prognosis and did not feel their symptoms were urgent. The likelihood of being rehospitalized within 30 days was more than doubled among those with high depressive symptoms (OR, 2.31; 95% confidence interval, 1.01-5.31). Those who were rehospitalized within 30 days were less likely to consult healthcare professionals in their decision making and wanted immediate relief from their symptoms. CONCLUSIONS: We recommend a patient-centered approach to help HF patients identify and adequately self-manage symptoms. The strong association between high depressive symptoms and rehospitalization within 30 days as well as delayed decision making highlights the critical need for clinicians to carefully assess and address depression among HF patients.

Participant retention practices in longitudinal clinical research studies with high retention rates.

BACKGROUND: There is a need for improving cohort retention in longitudinal studies. Our objective was to identify cohort retention strategies and implementation approaches used in studies with high retention rates. METHODS: Longitudinal studies with ≥200 participants, ≥80% retention rates over ≥1 year of follow-up were queried from an Institutional Review Board database at a large research-intensive U.S. university; additional studies were identified through networking. Nineteen (86%) of 22 eligible studies agreed to participate. Through in-depth semi-structured interviews, participants provided retention strategies based on themes identified from previous literature reviews. Synthesis of data was completed by a multidisciplinary team. RESULTS: The most commonly used retention strategies were: study reminders, study visit characteristics, emphasizing study benefits, and contact/scheduling strategies. The research teams were well-functioning, organized, and persistent. Additionally, teams tailored their strategies to their participants, often adapting and innovating their approaches. CONCLUSIONS: These studies included specialized and persistent teams and utilized tailored strategies specific to their cohort and individual participants. Studies' written protocols and published manuscripts often did not reflect the varied strategies employed and adapted through the duration of study. Appropriate retention strategy use requires cultural sensitivity and more research is needed to identify how strategy use varies globally.

Decision Making Among Persons Living With Heart Failure.

BACKGROUND: Persons with heart failure (HF) are required to make decisions on a daily basis related to their declining health and make urgent decisions during acute illness exacerbations. However, little is known about the types of decisions patients make. OBJECTIVE: The aims of this study were to critically evaluate the current quantitative literature related to decision making among persons with HF and identify research gaps in HF decision-making research. METHODS: A systematic search of literature about decisions persons with HF make was conducted using PubMed, CINAHL, and PsychINFO databases. The following inclusion criteria were used: sample composed of at least 50% HF participants, concrete decisions were made, and a quantitative study design was used. Two authors performed title, abstract, and full-text reviews independently to identify eligible articles. RESULTS: Twelve quantitative articles were included. Study samples were predominately older, white, male, and married. Two-thirds of the articles focused on decisions related to the end-of-life topics (ie, resuscitation decisions, advanced care planning). The other one-third focused on decisions about care seeking, participant's involvement in treatment decisions during their last clinic visit, and self-care behaviors. CONCLUSIONS: Within the HF literature, the term decision is often ill-defined or not defined. Limitations in methodological rigor limit definitive conclusions about HF decision making. Future studies should consider strengthening study rigor and examining other decision topics such as inclusion of family in making decisions as HF progresses. Research rigorously examining HF decision making is needed to develop interventions to support persons with HF.

Nutritional Interventions in Heart Failure: A Systematic Review of the Literature.

BACKGROUND: Heart failure (HF) is a major health care burden and there is a growing need to develop strategies to maintain health and sustain quality of life in persons with HF. The purpose of this review is to critically appraise the components of nutrition interventions and to establish an evidence base for future advances in HF nutrition research and practice. METHODS AND RESULTS: Cinahl, Pubmed, and Embase were searched to identify articles published from 2005 to 2015. A total of 17 randomized controlled trials were included in this review. Results were divided into 2 categories of nutrition-related interventions: (1) educational and (2) prescriptive. Educational interventions improved patient outcomes such as adherence to dietary restriction in urine sodium levels and self-reported diet recall. Educational and prescriptive interventions resulted in decreased readmission rates and patient deterioration. Adherence measurement was subjective in many studies. Evidence showed that a normal-sodium diet and 1-liter fluid restriction along with high diuretic dosing enhanced B-type natriuretic peptide, aldosterone, tumor necrosis factor α, and interleukin-6 markers. CONCLUSIONS: Educational nutrition interventions positively affect patient clinical outcomes. Although clinical practice guidelines support a low-sodium diet and fluid restriction, research findings have revealed that a low-sodium diet may be harmful. Future research should examine the role of macronutrients, food quality, and energy balance in HF nutrition.

Symptoms and fear in heart failure patients approaching end of life: a mixed methods study.

AIMS AND OBJECTIVES: The purpose of this study was to consider how fear and symptom experience are perceived in patients with heart failure at the end of life. BACKGROUND: Heart failure is a burdensome condition and mortality rates are high globally. There is substantive literature describing suffering and unmet needs but description of the experience of fear and the relationship with symptom burden is limited. DESIGN: A convergent mixed methods design was used. METHODS: Data from the McGill Quality of Life Questionnaire (n = 55) were compared to data from in-depth interviews (n = 5). RESULTS: Patients denied fear when asked directly, but frequently referred to moments of being afraid when they were experiencing symptoms. In addition, patients reported few troublesome symptoms on the survey, but mentioned many more symptoms during interviews. CONCLUSIONS: These data not only identify the relationship between psychological issues and symptom experience but also elucidate the benefit of a mixed method approach in describing such experiences from the perspective of the patient. Future research should examine relationships between and among symptom experience, fear and other psychological constructs across the illness trajectory. RELEVANCE TO CLINICAL PRACTICE: Conversations about the interaction of symptom burden and fear can lead to both a more robust assessment of symptoms and lead to patient centred interventions.

Functional status in left ventricular assist device-supported patients: a literature review.

The prevalence of advanced heart failure (HF) is increasing because of the aging population and improvements in HF management strategies. Left ventricular assist device (LVAD) technology and management continue to advance rapidly, and it is anticipated that the number of LVAD implants will increase. LVADs have been demonstrated to extend life and improve outcomes in patients with advanced HF. The purpose of this article is to review and synthesize the evidence on impact of LVAD therapy on functional status. Significant functional gains were demonstrated in patients supported by LVAD throughout the 1st year, with most improvement in distance walked and peak oxygen consumption demonstrated in the 1st 6 months. Interventions to enhance exercise performance have had inconsistent effects on functional status. Poor exercise performance was associated with increased risk of adverse events. Functional status improved with LVAD therapy, although performance remained substantially reduced compared with age-adjusted norms. There is tremendous need to enhance our understanding of factors influencing functional outcomes in this high-risk population.

A picture is worth a thousand words: exploring the roles of caregivers and the home environment of ventricular assist device patients.

AIMS: Caregivers of persons living with ventricular assist devices (VADs) are integrally involved in both medical and non-medical care. We sought to understand tasks caregivers perform after surgical recovery, ways the home is adapted for those tasks, and presence of home safety hazards. METHODS AND RESULTS: We conducted semi-structured interviews with persons living with a VAD and their caregivers. Pictures were taken of areas in the home where: (i) caregiving activities occurred, (ii) VAD or medical supplies were kept, and (iii) home adaptations were made for VAD care. Pictures were described in written detail and analysed. A qualitative descriptive approach was used for analysis. The sample consisted of 10 dyads, with mostly spousal relationships (60%) between male patients (60%) and female caregivers (80%). Three themes were identified: (i) Evolution of Caregiving and Support: Patients gain independence, but caregivers are still needed, (ii) Adapting the Home Environment: Changes are focused on functional needs, and (iii) Hidden Dangers: Illumination of safety concerns by photographs. Assistance with bathing, driveline care, and medication management were common caregiving tasks. Most home adaptations occurred in the bathroom and bedroom including sleeping recliners, shower chairs, removable shower heads, and hanging hooks to hold VAD equipment. Safety hazards included minimal space for safe ambulation, infection risk, and home-made adaptations to the environment. CONCLUSIONS: These findings describe key home caregiving tasks, home adaptations, and safety concerns that require further education and support. Utilizing pictures may be a feasible method for assessing VAD teaching, caregiving needs, and identifying potential risks.

Comparison of Traditional Videos With Telenovelas for Hospice Family Caregivers Education.

BACKGROUND: While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG. OBJECTIVE: To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group. METHODS: A mixed methods study with a concurrent triangulated design that analyzed qualitative interviews and YouTube analytics report to identify how viewers responded (number of views and their feedback) to telenovela videos as compared to traditional educational videos. RESULTS: Among 39 (n = 39) HFCGs, most participants were female (80%) of White/Caucasian race, with more than high school education (85%) and they were adult children of hospice cancer patient (49%). Comparing HFCG that viewed traditional videos with HFCG that viewed telenovela videos, the telenovela video was watched more (12% longer viewing duration) and caregivers reported better content recall with informative benefits, more follow up actions and reflection about their own hospice experience. CONCLUSION: Caregiver feedback indicated that watching the telenovela was engaging, acceptable and produced more conversations about patient care, than watching a non-telenovela format video. Further research is needed to test telenovela efficacy in enhancing HFCG outcomes.

Reflections of Hospice Staff Members About Educating Hospice Family Caregivers Through Telenovela.

OBJECTIVE: Hospice family caregivers are seeking additional information related to patient care, pain and symptom management, and self-care. This study interviewed hospice staff about the potential dissemination of bilingual telenovelas to address these caregiver needs. METHODS: Qualitative structured phone interviews were conducted with 22 hospice professionals from 17 different hospice organizations in 3 different Midwest states. The interviews were conducted from October to December 2019. Hospice staff volunteers were recruited from conferences, then individual interviews were audio-recorded, transcribed, and thematic analysis was conducted to gain an in-depth understanding of how to best implement telenovela video education into hospice care. RESULTS: Most participants were hospice nurses (36%) located primarily in Missouri (91%), with a mean of 9 years of experience. Three discrete themes emerged, the educational resources currently provided to patient/families, perceptions of the usefulness of telenovelas for education, and practical suggestions regarding the dissemination of telenovelas. The development of 4 telenovela videos covering different topics is described. CONCLUSION: Hospice staff responded favorably to the concept of telenovelas and identified important keys for dissemination.

Compelling Voices of Diversity, Equity, and Inclusion in Prelicensure Nursing Students: Application of the Cultural Humility Framework.

BACKGROUND: Diversity, equity, and inclusion are increasingly recognized as core values for guiding nursing education, practice, and research. The conceptual framework of cultural humility has been adapted in a variety of health care settings, fostering a culture of diversity, equity, and inclusion through openness, supportive interaction, self-awareness, self-reflection, and critique. PROBLEM: Nurse educators have the opportunity, but may find it challenging, to teach students about the changing landscape of health care and the populations we serve. APPROACH: This article describes the integration of the cultural humility framework into nursing curricula to teach principles of diversity, equity, and inclusivity. We provide a practical example of a diversity panel, with student and panelist reflections, exploring the intersectionality of experiences in health care and integration of personal accounts and perspectives. CONCLUSION: Dialogue about diversity, equity, and inclusion is essential for preparing future nurses to deliver culturally competent care and promote health equity.

Caregiver subjective and physiological markers of stress and patient heart failure severity in family care dyads.

Greater family caregiver exposure to uncontrolled patient symptoms is predictive of greater caregiver psychological and physiological stress in dementia and other chronic illnesses, but these phenomena have not been well-studied in heart failure (HF) - a disease with high symptom burden. The purpose of this study was to test the hypothesis that worse patient functional status (as reflected by increasing HF symptoms) would be associated with elevated psychological and physiological stress for the caregiver. This was a secondary analysis of data from 125 HF caregivers in the Caregiver Opportunities for Optimizing Lifestyle (COOL) study. Psychological stress was measured on four dimensions: care-related strain/burden (Oberst Caregiving Burden Scale), depression (Center for Epidemiological Studies Depression Scale), anxiety (State-Trait Anxiety Index), and general stress (Perceived Stress Scale). Physiological stress was measured by markers of HPA axis function (elevated cortisol awakening response [CAR]), endothelial dysfunction (increased PAI-1), and inflammation (increased IL-6, hsCRP). HF patient functional status was quantified by caregiver assessment of New York Heart Association (NYHA) Class. Generalized linear models were used to test associations between patient NYHA Class and stress (one model per indicator). NYHA Class (ordinal) was backwards difference coded in each model to examine caregiver stress in relation to increasing levels of HF severity. Caregivers were mostly female and in their mid-fifties, with a slight majority of the sample being African American and the patient's spouse. Overall, patient functional status was associated with greater caregiver psychological and physiological stress. In terms of psychological stress, higher NYHA Class was significantly associated with greater caregiver anxiety and general stress, but not with caregiver burden or depression. In terms of physiological stress, higher NYHA Class was associated with elevated markers in all models (elevated CAR and higher IL-6, hsCRP, and PAI-1). Across models, most associations between NYHA Class and stress were present at relatively early stages of functional limitation (i.e. Class II), while others emerged when functional limitations became more severe. To inform timing and mechanisms for much-needed caregiver interventions, research is needed to determine which aspects of HF symptomatology are most stressful for caregivers across the HF trajectory.

Building a pipeline of community-engaged researchers: How interdisciplinary translational research training programs can collaborate with their Community Research Advisory Councils.

Community research advisory councils (C-RAC) bring together community members with interest in research to support design, evaluation, and dissemination of research in the communities they represent. There are few ways for early career researchers, such as TL1 trainees, to develop skills in community-engaged research, and there are limited opportunities for C-RAC members to influence early career researchers. In our novel training collaboration, TL1 trainees presented their research projects to C-RAC members who provided feedback. We present on initial evidence of student learning and summarize lessons learned that TL1 programs and C-RACs can incorporate into future collaborations.