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.

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.

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.

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.

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.

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.

"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.

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.

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.

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.

What matters when doctors die: A qualitative study of family perspectives.

BACKGROUND: The challenges of supporting the end-of-life preferences of patients and their families have often been attributed to poor understanding of the patient's condition. Understanding how physicians, as patients, communicate their end-of-life care preferences to their families may inform shared decision making at end of life. OBJECTIVES: The purpose of this study was to understand what matters to families of physicians when decision making with and for a physician who is approaching the end of life. DESIGN: Cross-sectional qualitative design. PARTICIPANTS: We conducted interviews with family members of deceased physicians. APPROACH: We analyzed the data using the constant comparison method to identify themes. KEY RESULTS: Family members (N = 26) rarely were unclear about the treatment preferences of physicians who died. Three overarching themes emerged about what matters most to physicians' families: (1) honoring preferences for the context of end-of-life care; (2) supporting the patient's control and dignity in care; and, (3) developing a shared understanding of preferences. Families struggled to make decisions and provide the care needed by the physicians at the end of life, often encountering significant challenges from the healthcare system. CONCLUSIONS: Even when disease and prognosis are well understood as in this group of physicians, families still experienced difficulties in end-of-life decision making. These findings highlight the need to specifically address preferences for caregiver, care setting and symptom management in shared end-of-life decision making conversations with patients and families.

Outpatient Palliative Care in Heart Failure: An Integrative Review.

Background: Early integration of palliative care (PC) for patients with heart failure (HF) improves patient outcomes and decreases health care utilization. PC provided outside of an acute hospitalization is not well understood. Objective: To synthesize the literature of outpatient PC in HF to identify the current landscape, the impact on patient health outcomes, key stakeholders' perspectives, and future implications for research and practice. Design: A systematic search of PubMed, Embase, CINAHL, Cochrane, and Web of Science was conducted from inception to February 2019 for studies of outpatient PC in adults with HF. Each study was analyzed to describe study characteristics, location of PC, types of providers involved, participant characteristics, and main findings, and to characterize domains of PC addressed. Results: Most studies (N = 19) employed a quantitative design and were conducted in the United States. The most common locations of PC were the home or PC clinic and providers were mainly PC specialists. Outpatient PC improved quality of life, alleviated symptoms, and decreased rehospitalizations for patients with HF. No study addressed all eight domains of PC. The structural, physical, and psychological domains were commonly addressed, whereas, least commonly addressed domains were the cultural and ethical/legal domain. Women and ethnic minorities were underrepresented in the majority of samples. Conclusions: This integrative review highlights the need to promote primary PC and future PC research focusing on a holistic, integrated, team-based approach addressing all domains of PC in representative samples.

Actor feedback and rigorous monitoring: Essential quality assurance tools for testing behavioral interventions with simulation.

INTRODUCTION: Simulation is a powerful tool for training and evaluating clinicians. However, few studies have examined the consistency of actor performances during simulation based medical education (SBME). The Simulated Communication with ICU Proxies trial (ClinicalTrials.gov NCT02721810) used simulation to evaluate the effect of a behavioral intervention on physician communication. The purpose of this secondary analysis of data generated by the quality assurance team during the trial was to assess how quality assurance monitoring procedures impacted rates of actor errors during simulations. METHODS: The trial used rigorous quality assurance to train actors, evaluate performances, and ensure the intervention was delivered within a standardized environment. The quality assurance team evaluated video recordings and documented errors. Actors received both timely, formative feedback and participated in group feedback sessions. RESULTS: Error rates varied significantly across three actors (H(2) = 8.22, p = 0.02). In adjusted analyses, there was a decrease in the incidence of actor error over time, and errors decreased sharply after the first group feedback session (Incidence Rate Ratio = 0.25, 95% confidence interval 0.14-0.42). CONCLUSIONS: Rigorous quality assurance procedures may help ensure consistent actor performances during SBME.

End of life for patients with left ventricular assist devices: Insights from INTERMACS.

BACKGROUND: Trial and registry data have reported mortality rates and causes of death in patients with left ventricular assist devices (LVADs); however, a more granular description is needed of end of life, including location of death and quality of life (QOL), to better guide expectations and care. METHODS: To identify where patients with an LVAD died, characterize QOL before death, and cause of death over time, we evaluated patients in the Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) implanted with a continuous-flow LVAD. RESULTS: From 18,733 patients implanted with an LVAD during the period 2008 to 2016, 4,916 patients were known to have died, of whom 98% had a recorded location of death. Overall, 76.9% died in the hospital, with progressively more patients dying outside of the hospital further post-LVAD implant: <1 month, 2.3%; 1 to 12 months, and 16.8%; and >12 months, 37.4%. In a multivariable analysis, increased age (RR (risk ratio) 1.06, 95% confidence interval [CI] 1.02 to 1.12, p = 0.01) and destination therapy indication (RR 1.15, 95% CI 1.03 to 1.28, p = 0.01) increased the likelihood of dying outside the hospital. Comparing 3 months post-implant with 6 months before death in a subset of patients, QOL remained clinically stable (EQ-5D Visual Analog Scale [mean ± SD]: 68.3 ± 22.2 to 66.7 ± 21.7, p = 0.11; KCCQ: 61.0 ± 22.2 to 57.8 ± 23.2, p = 0.003). The most common cause of death <1 month post-implant was multiple-organ failure (20.4%) and at >1 month post-implant it was neurologic dysfunction (28.2%). CONCLUSIONS: Most patients with an LVAD died in the hospital. QOL remained stable months before death and causes of death were varied, but increasingly dominated by stroke. By understanding death with an LVAD in place, clinicians are in a better position to educate patients and caregivers about what to expect and provide to support tailored to patient and caregiver needs.

Advance Directives, Medical Conditions, and Preferences for End-of-Life Care Among Physicians: 12-year Follow-Up of the Johns Hopkins Precursors Study.

CONTEXT: Stability of preferences for life-sustaining treatment may vary depending on personal characteristics. OBJECTIVE: We estimated the stability of preferences for end-of-life treatment over 12 years and whether advance directives and medical conditions were associated with change in preferences for end-of-life treatment. DESIGN: Mailed survey of older physicians. METHODS: Longitudinal cohort study of medical students in the graduating classes from 1948 to 1964 at Johns Hopkins University. Eight hundred ninety eight physicians who completed the life-sustaining treatment questionnaire anytime in 1999, 2002, 2005, and 2011 (mean age 68.2 years at baseline). Preferences for life-sustaining treatment were assessed using a checklist questionnaire in response to a standard "brain injury" scenario and considered as a package using the latent class transition model. RESULTS: End-of-life preferences grouped into three classes: most aggressive (wanting most interventions; 14% of physicians), least aggressive (declining most interventions; 61%), and an intermediate class (declining most interventions except intravenous fluids and antibiotics; 25%). Physicians without an advance directive were more likely to desire more treatment and were less likely to transition out the most aggressive class. Transition probabilities from class to class did not vary over time. Persons with cancer expressed preference for the least aggressive treatment, whereas persons with cardiovascular disease and depression had preferences for more aggressive treatment. CONCLUSION: Transitions in end-of-life preferences and the factors influencing change and stability suggest that periodic reassessment for planning end-of-life care is needed.

Nurses' Competence Caring for Hospitalized Patients With Ventricular Assist Devices.

BACKGROUND: Nursing care is an essential component of the delivery of high-quality patient care for advanced heart failure patients with ventricular assist devices (VADs). However, there is little information about how VAD patient care competence is formed, and there are no empirical data regarding the bed nurses' competence. OBJECTIVES: The aim of this study was to explain how nurses perceived their competence related to VAD technology and how they utilized resources to equip themselves for the management of patients with implantable VADs. METHODS: An exploratory correlational research design was used in this study. Online surveys including demographic and work characteristics questionnaires as well as VAD Innovation in Nursing Appraisal Scale (knowledge, adoption, and communication) were completed by 237 critical-care unit and progressive care unit (PCU) nurses. RESULTS: Ventricular assist device knowledge, adoption, and communication of innovation mean scores were 3.9 ± 0.6, 3.9 ± 0.8, and 3.7 ± 0.9, respectively, indicating moderate/high levels. Critical-care unit nurses reported higher levels of knowledge (3.7 vs 3.6) and adoption (4.0 vs 3.8; P < .05) of innovation than did the PCU nurses, with no differences in communication. Compared with PCU nurses, critical-care unit nurses were more likely to seek VAD competence-related information using mass media. Innovation and adoption were associated with years of nursing experience and some hospital characteristics. CONCLUSION: Critical-care unit nurses have higher self-reported VAD care competence than PCU nurses. Further research is needed to confirm the findings and link nurse competence with VAD patient outcomes.

Risk of left ventricular assist device driveline infection: A systematic literature review.

BACKGROUND: Left ventricular assist devices (LVADs) improve quality of life in end-stage heart failure but can cause serious complications such as infections with driveline infection causing significant morbidity and mortality. OBJECTIVES: The purpose of this systematic literature review is to synthesize the literature to determine variables associated with driveline infection and seek opportunities to improve nursing management of LVAD drivelines. METHODS: A systematic literature review was performed. The evidence was synthesized using the Johns Hopkins Nursing Evidence-Based Practice tools and the Chain of Infection epidemiological framework. RESULTS: Thirty-four studies focused on vulnerable host, portal of entry, and causative organism aspects of the Chain of Infection. Increased BMI, younger age, exposed driveline velour showed increased risk of infection and driveline dressing protocol change showed lower risk of infection. CONCLUSIONS: Although some risk factors for infection were identified, evidence is still limited. Nurses are uniquely positioned to improve driveline management, disrupting the chain of infection.