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BACKGROUND: Despite widespread growth of televisits and telemedicine, it is unclear how telenursing could be applied to augment nurse labor and support nursing. OBJECTIVE: This study evaluated a large-scale acute care telenurse (ACTN) program to support web-based admission and discharge processes for hospitalized patients. METHODS: A retrospective, observational cohort comparison was performed in a large academic hospital system (approximately 2100 beds) in Houston, Texas, comparing patients in our pilot units for the ACTN program (telenursing cohort) between June 15, 2022, and December 31, 2022, with patients who did not participate (nontelenursing cohort) in the same units and timeframe. We used a case mix index analysis to confirm comparable patient cases between groups. The outcomes investigated were patient experience, measured using the Hospital Consumer Assessment of Health Care Providers and Systems (HCAHCPS) survey; nursing experience, measured by a web-based questionnaire with quantitative multiple-choice and qualitative open-ended questions; time of discharge during the day (from electronic health record data); and duration of discharge education processes. RESULTS: Case mix index analysis found no significant case differences between cohorts (P=.75). For the first 4 units that rolled out in phase 1, all units experienced improvement in at least 4 and up to 7 HCAHCPS domains. Scores for "communication with doctors" and "would recommend hospital" were improved significantly (P=.03 and P=.04, respectively) in 1 unit in phase 1. The impact of telenursing in phases 2 and 3 was mixed. However, "communication with doctors" was significantly improved in 2 units (P=.049 and P=.002), and the overall rating of the hospital and the "would recommend hospital" scores were significantly improved in 1 unit (P=.02 and P=04, respectively). Of 289 nurses who were invited to participate in the survey, 106 completed the nursing experience survey (response rate 106/289, 36.7%). Of the 106 nurses, 101 (95.3%) indicated that the ACTN program was very helpful or somewhat helpful to them as bedside nurses. The only noticeable difference between the telenursing and nontelenursing cohorts for the time of day discharge was a shift in the volume of patients discharged before 2 PM compared to those discharged after 2 PM at a hospital-wide level. The ACTN admissions averaged 12 minutes and 6 seconds (SD 7 min and 29 s), and the discharges averaged 14 minutes and 51 seconds (SD 8 min and 10 s). The average duration for ACTN calls was 13 minutes and 17 seconds (SD 7 min and 52 s). Traditional cohort standard practice (nontelenursing cohort) of a bedside nurse engaging in discharge and admission processes was 45 minutes, consistent with our preimplementation time study. CONCLUSIONS: This study shows that ACTN programs are feasible and associated with improved outcomes for patient and nursing experience and reducing time allocated to admission and discharge education.
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Telemedicina , Teleenfermería , Humanos , Hospitalización , Alta del Paciente , Estudios RetrospectivosRESUMEN
While there is an evolving literature on the benefits of texting and patient-centered technologies, texting initiatives have not focused on family members. We sought to identify patients' family members' perspectives on facilitators and barriers to using 1 digital texting innovation to promote family-centered care during patients' hospitalizations. This qualitative study was conducted at a tertiary care center in Houston, consisting of 7 hospitals (1 academic hospital and 6 community hospitals), involving analyzation of 3137 comments from family members who used the digital texting technology. Thematic analysis methods were used. The data analysis for loved ones' feedback resulted in 4 themes as facilitators: (1) inpatient text messaging keeps loved ones updated and connected (n = 611); (2) inpatient text messaging allows for stronger continuity of communication (n = 69); (3) messaging promotes a sense of staff compassion and service (n = 245); and (4) messaging reduces phone calls (n = 65). The data analysis resulted in 4 themes as barriers to text messaging helpfulness: (1) messages could feel generic (n = 31); (2) inpatient texting was not needed if all loved ones were regularly at bedside (n = 6); (3) messages could have a perceived delay (n = 37); and (4) security features could impact convenience (n = 29). Our findings indicate that family members and loved ones value inpatient text messages, not only for the information the messages provide, but also because the act of writing text messages and preparing loved ones shows inclusiveness, compassion, and family-centered care.
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An important gap in the literature is how clinicians feel about patient-centered technologies and how clinicians experience patient-centered technologies in their workflows. Our goal was to identify clinician users' perspectives on facilitators (pros) and barriers (cons) to using 1 digital texting innovation to promote family centered care during patients' hospitalizations. This qualitative study was conducted at a tertiary care center in Houston, consisting of 7 hospitals (1 academic hospital and 6 community hospitals), involving analyzation of 3 focus groups of 18 physicians, 5 advanced practice providers, and 10 nurse directors and managers, as well as a content analysis of 156 real-time alerts signaling family dissatisfaction on the nursing unit/floor. Thematic analysis methods were used. We selected these participants by attending their regularly scheduled service-line meetings. Clinician feedback from focus groups resulted in 3 themes as facilitators: (a) texting platforms must be integrated within the electronic medical record; (b) texting reduces outgoing phone calls; (c) texting reduces incoming family phone calls. Clinician feedback resulted in 3 themes as barriers: (a) best practice alerts can be disruptive; (b) real-time alerts can create hopelessness; and (c) scale-up is challenging. The analyzation of facilitators (pros) and barriers (cons) pertains only to the clinician's feedback. We also analyzed real-time alerts signaling family dissatisfaction (defined as "service recovery escalation" throughout this manuscript). The most common selection for the source of family dissatisfaction, as reflected through the real-time alerts was, "I haven't heard from physicians enough," appearing in 52 out of 156 alerts (33%). The second most common selection for the source of dissatisfaction was "perceived inconsistent or incomplete information provided by team members," which was selected in 48 cases (31%). Our findings indicate that clinicians value inpatient texting, not only for its ability to quickly relay updates to multiple family members with 1 click, but also because, when used intentionally and meaningfully, texting decreases family phone calls.
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This manuscript provides an overview of our efforts to implement an integrated electronic monitoring and feedback platform to increase patient engagement, improve care delivery and outcome of treatment, and alert care teams to deterioration in functioning. Patients First utilizes CareSense, a digital care navigation and data collection system, to integrate traditional patient-reported outcomes monitoring with novel biological monitoring between visits to provide patients and caregivers with real-time feedback on changes in symptoms such as stress, anxiety, and depression. The next stage of project development incorporates digital therapeutics (computerized therapeutic interventions) for patients, and video resources for primary care physicians and nurse practitioners who serve as the de facto front line for psychiatric care. Integration of the patient-reported outcomes monitoring with continuous biological monitoring, and digital supports is a novel application of existing technologies. Video resources pushed to care providers whose patients trigger a symptom severity alert is, to our knowledge, an industry first.
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Tecnología Digital , Servicios de Salud Mental , Psiquiatría/métodos , Telemedicina , Ansiedad/psicología , Ansiedad/terapia , Depresión/psicología , Depresión/terapia , Humanos , Medición de Resultados Informados por el Paciente , Estrés Psicológico/psicología , Estrés Psicológico/terapiaRESUMEN
BACKGROUND: Despite the growth of and media hype about mobile health (mHealth), there is a paucity of literature supporting the effectiveness of widespread implementation of mHealth technologies. OBJECTIVE: This study aimed to assess whether an innovative mHealth technology system with several overlapping purposes can impact (1) clinical outcomes (ie, readmission rates, revisit rates, and length of stay) and (2) patient-centered care outcomes (ie, patient engagement, patient experience, and patient satisfaction). METHODS: We compared all patients (2059 patients) of participating orthopedic surgeons using mHealth technology with all patients of nonparticipating orthopedic surgeons (2554 patients). The analyses included Wilcoxon rank-sum tests, Kruskal-Wallis tests for continuous variables, and chi-square tests for categorical variables. Logistic regression models were performed on categorical outcomes and a gamma-distributed model for continuous variables. All models were adjusted for patient demographics and comorbidities. RESULTS: The inpatient readmission rates for the nonparticipating group when compared with the participating group were higher and demonstrated higher odds ratios (ORs) for 30-day inpatient readmissions (nonparticipating group 106/2636, 4.02% and participating group 54/2048, 2.64%; OR 1.48, 95% CI 1.03 to 2.13; P=.04), 60-day inpatient readmissions (nonparticipating group 194/2636, 7.36% and participating group 85/2048, 4.15%; OR 1.79, 95% CI 1.32 to 2.39; P<.001), and 90-day inpatient readmissions (nonparticipating group 261/2636, 9.90% and participating group 115/2048, 5.62%; OR 1.81, 95% CI 1.40 to 2.34; P<.001). The length of stay for the nonparticipating cohort was longer at 1.90 days, whereas the length of stay for the participating cohort was 1.50 days (mean 1.87, SD 2 vs mean 1.50, SD 1.37; P<.001). Patients treated by participating surgeons received and read text messages using mHealth 83% of the time and read emails 84% of the time. Patients responded to 60% of the text messages and 53% of the email surveys. Patients were least responsive to digital monitoring questions when the hospital asked them to do something, and they were most engaged with emails that did not require action, including informational content. A total of 96% (558/580) of patients indicated high satisfaction with using mHealth technology to support their care. Only 0.40% (75/2059) patients opted-out of the mHealth technology program after enrollment. CONCLUSIONS: A novel, multicomponent, pathway-driven, patient-facing mHealth technology can positively impact patient outcomes and patient-reported experiences. These technologies can empower patients to play a more active and meaningful role in improving their outcomes. There is a deep need, however, for a better understanding of the interactions between patients, technology, and health care providers. Future research is needed to (1) help identify, address, and improve technology usability and effectiveness; (2) understand patient and provider attributes that support adoption, uptake, and sustainability; and (3) understand the factors that contribute to barriers of technology adoption and how best to overcome them.
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Telemedicina , Anciano , Tecnología Biomédica , Femenino , Humanos , Masculino , Estudios Retrospectivos , TecnologíaRESUMEN
OBJECTIVES: Little is known about how clinicians perceive prognostic uncertainty. Our study objective was to identify factors that influence how prognostic uncertainty is viewed by physicians, as it relates to their communications with families. DESIGN: Thirty semi-structured interviews with qualitative content analysis (9 surgeons, 16 intensivists, 3 nurse practitioners, and 2 "other" clinicians). We analyzed interviews using qualitative description with constant comparative techniques. SETTING: Open medical, surgical, neurosurgical, and cardiovascular intensive care units (ICUs) in a 900-bed academic, tertiary Houston hospital. INTERVENTIONS: None. MAIN RESULTS: We identified 2 main factors that influence how clinicians perceive prognostic uncertainty and their perceptions about whether and why they communicate prognostic uncertainties to families: (1) Communicating Uncertainty to "Soften the Blow"; and (2) Communicating Uncertainty in Response to Clinicians' Interpretations of Surrogate Decision Makers' Perceptions of Prognostic Uncertainty. We also identified several subthemes. CONCLUSIONS: Clinician-family interactions influence how clinicians perceive prognostic uncertainty in their communications with patients or families. We discuss ethical and clinical implications of our findings.
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Comunicación , Cuidados Críticos/psicología , Familia/psicología , Personal de Salud/psicología , Relaciones Profesional-Familia , Cuidado Terminal/psicología , Adulto , Actitud del Personal de Salud , Cuidados Críticos/métodos , Toma de Decisiones , Femenino , Humanos , Masculino , Persona de Mediana Edad , Pronóstico , Cuidado Terminal/métodos , IncertidumbreRESUMEN
In November 2018, the practice of health care ethics consultation crossed a major threshold when 138 candidates took the inaugural Healthcare Ethics Consultant Certification Examination. This accomplishment, long in the making, has had and continues to have both advocates and critics. The Healthcare Ethics Consultant Certification Commission, a functionally autonomous body created and funded by the American Society for Bioethics and Humanities, was charged with overseeing creation of the certification process, developing the exam, and formulating certification standards and policies to assess candidates' qualifications. In this essay, as members of the commission, we describe the process of developing, administering, and scoring the certification examination as well as the historical context and the outlook for certification. By detailing the decisions and actions of the commission, we aim to provide a transparent account of the commission's efforts to develop a psychometrically sound, reliable, and secure examination through a deliberative, fair, and data-driven process.
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Bioética/educación , Consultoría Ética/normas , Ética Clínica/educación , Competencia Profesional/normas , Certificación , Consultores/estadística & datos numéricos , Humanos , Comunicación Interdisciplinaria , Rol Profesional , Estados UnidosRESUMEN
Developing a care plan in a critical care context can be challenging when the therapeutic alliance between clinicians and families is compromised by anger. When these cases occur, clinicians often turn to clinical ethics consultants to assist them with repairing this alliance before further damage can occur. This paper describes five different reasons family members may feel and express anger and offers concrete strategies for clinical ethics consultants to use when working with angry families acting as surrogate decision makers for critical care patients. We reviewed records of consults using thematic analysis between January 2015 and June 2016. Each case was coded to identify whether the case involved a negative encounter with an angry family. In our review, we selected 11 cases with at least one of the following concerns or reasons for anger: (1) perceived or actual medical error, (2) concerns about the medical team's competence, (3) miscommunication, (4) perceived conflict of interest or commitment, or (5) loss of control. To successfully implement these strategies, clinical ethics consultants, members of the medical team, and family members should share responsibility for creating a mutually respectful relationship.
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Familia/psicología , Confianza/psicología , Actitud del Personal de Salud , Cuidados Críticos/psicología , Cuidados Críticos/normas , Consultoría Ética , Humanos , Relaciones Profesional-Familia , Calidad de la Atención de Salud/normas , TexasRESUMEN
BACKGROUND: Studies indicate that decision making and informed consent among patients considering left ventricular assist device (LVAD) support for advanced heart failure could be improved. In the VADDA (Ventricular Assist Device Decision Aid) trial, we tested a patient-centered decision aid (DA) to enhance the quality of decision making about LVAD therapy. METHODS: After an extensive user-centered design process, we conducted a multisite randomized trial of the DA compared with standard education (SE) among inpatients considering LVAD treatment for advanced heart failure The main outcome was LVAD knowledge at 1 week and 1 month after administration of the DA versus the SE, according to a validated scale. Secondary measures included prespecified quality decision making measures recommended by the International Patient Decision Aid Standards collaboration. RESULTS: Of 105 eligible patients, 98 consented and were randomly assigned to the DA and SE arms. Patients receiving the VADDA exhibited significantly greater LVAD knowledge than the SE group at 1 week of follow-up (Pâ¯=â¯.01) but not at 1 month (Pâ¯=â¯.47). No differences were found between DA and SE patients in rates of acceptance versus decline of LVAD treatment (85% vs 78%; Pâ¯=â¯.74). Recipients in the DA arm reported greater satisfaction with life after implantation compared with nonrecipients (28 vs 23 out of 30; Pâ¯=â¯.008), although both arms reported high satisfaction. Patients rated the DA high in acceptability and usability. CONCLUSIONS: The VADDA enhances LVAD knowledge, particularly in the short term (1 week) during the peak period of decision making. The DA does not encourage decision direction and reflects patient, caregiver, and physician preferences for content and format. CLINICAL TRIAL REGISTRATION: https://clinicaltrials.gov/ct2/show/NCT02248974. The trial is registered with clinicaltrials.gov (NCT02248974).
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Toma de Decisiones , Técnicas de Apoyo para la Decisión , Insuficiencia Cardíaca/terapia , Corazón Auxiliar , Consentimiento Informado , Atención Dirigida al Paciente/normas , Médicos/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto JovenRESUMEN
The authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work.
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Eticistas/educación , Comités de Ética Clínica , Consultoría Ética/normas , Humanos , Objetivos Organizacionales , Sociedades Médicas , Estados UnidosRESUMEN
Transplant medicine is fraught with clinical-ethical issues. It is not uncommon to have ethicists on transplant teams to help navigate ethically complex cases and ethical questions. Clinical ethicists work in hospitals and/or other healthcare institutions identifying and addressing value-laden conflict and ethical uncertainties. As ethicists, we set out to describe our process and involvement in cases involving extracorporeal membrane oxygenation (ECMO). Our work centers on monitoring and optimizing communication among clinicians, families, and patients, with the goals of (1) aligning patient/family understanding of the nature and purpose of ECMO while encouraging realistic expectations for possible outcomes, and (2) proactively mitigating the moral distress of providers involved in complex ECMO cases. We close with recommendations for how to measure the impact of ethicists' involvement in ECMO cases.
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Toma de Decisiones Clínicas/ética , Eticistas , Oxigenación por Membrana Extracorpórea/ética , Comunicación Interdisciplinaria , Grupo de Atención al Paciente/ética , Síndrome de Dificultad Respiratoria/terapia , Anciano , Actitud del Personal de Salud , Eticistas/psicología , Oxigenación por Membrana Extracorpórea/efectos adversos , Oxigenación por Membrana Extracorpórea/instrumentación , Oxigenación por Membrana Extracorpórea/mortalidad , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Oxigenadores de Membrana , Grupo de Atención al Paciente/organización & administración , Selección de Paciente/ética , Rol Profesional , Relaciones Profesional-Familia/ética , Síndrome de Dificultad Respiratoria/diagnóstico , Síndrome de Dificultad Respiratoria/mortalidad , Síndrome de Dificultad Respiratoria/fisiopatología , Medición de Riesgo , Factores de Riesgo , Cuidado Terminal/ética , Privación de Tratamiento/éticaRESUMEN
Ethical, practical, and medical challenges affect decisions about left ventricular assist device (LVAD) implantation. The informed consent document (IC-Doc) is integral to the decision-making process and structures informed consent conversations. The objective of this study was to analyze IC-Docs to identify the information patients and their families receive about LVAD implantation to create a model IC-Doc. We requested IC-Doc for LVAD implantation from LVAD programs in the United States. We analyzed them in three areas: medical and technical content, patient knowledge gaps, and syntax. Nineteen IC-Docs representing all United Network of Organ Sharing regions were included. Seventeen (89.5%) mentioned the indications for LVAD implantation (bridge to transplant or destination therapy), and six indicated which category applied to the patient. Palliative care was mentioned as an alternative in nine (47.4%); no IC-Doc discussed nonsurgical palliative care. Eight forms (42.1%) specifically mentioned turning off the LVAD. Eighteen forms mention general bleeding, and four referred to long-term gastrointestinal bleeding. Two IC-Docs addressed driveline infections. One form was written at an 8th grade reading level. There is wide variation in LVAD IC-Docs and omission of some benefits and risks. We have written an IC-Doc that meets criteria for disclosure, fills many knowledge gaps, and has an acceptable readability score.
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Corazón Auxiliar , Consentimiento Informado , Toma de Decisiones/ética , Femenino , Insuficiencia Cardíaca/terapia , Corazón Auxiliar/ética , Humanos , Masculino , Persona de Mediana Edad , Estados UnidosRESUMEN
A few weeks ago, Texas took an unprecedented position on unilateral DNRs by passing Senate Bill (SB) 11, which requires patient/surrogate consent for writing DNR orders. The motivation behind the bill was based on the drafters' beliefs that physicians frequently write unilateral DNR orders. SB 11, however, does not stop at requiring physicians to seek consent for DNR orders. Instead, the legislation uncharacteristically exceeds what is typically within the scope and role boundaries for lawmakers by legislating how physicians discuss and implement DNR orders. We contend that this bill is ethically problematic and will have far-reaching, negative consequences that will affect how critical care medicine is practiced. In what follows, we describe how proponents' arguments rely on several ethical assumptions, and we describe potential negative impacts stemming from this legislation. Finally, we offer an alternative approach that would mitigate proponents' concerns. We believe SB 11 and our analytic deconstruction of it should serve as "lessons learned" for other states considering similar legislation.
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Left-ventricular assist device (LVAD) therapy is a growing mechanical circulatory support therapy used to treat patients with advanced heart failure. There is a general assumption among clinicians that patients would prefer to accept a heart to any other treatment were they eligible. However, little research has been done to clarify the nuances of patient treatment preferences for LVAD therapy versus transplantation. The objective of this study was to investigate this treatment preference assumption from patients' perspectives. In a single-site study, 15 LVAD patients, 15 LVAD candidates, 15 LVAD decliners, and 15 LVAD caregivers (n = 60) participated in structured, in-depth interviews to assess decisional processes and treatment preferences for advanced heart failure. The interview guides were consistent with the Ottawa framework on decision-making processes. All participants were identified by the LVAD coordination team and recruited consecutively between February and November 2014. The patient and candidate groups included both LVAD designations: destination therapy (n = 22), bridge-to-transplant (n = 4), as well as four participants who deferred designation pending worsening clinical status. The interviews were analyzed using qualitative description with constant comparisons, aided by ATLAS.ti. Although LVAD eligible patients generally show a preference for heart transplantation as the ideal treatment for heart failure, some patients begin to show ambivalence as they experience LVAD therapy and begin to prefer LVAD as a long-term, destination treatment. Some themes that emerged from the interviews concerning transplantation centered on the consequences of multiple major surgeries (i.e., LVAD placement followed by heart transplantation, n = 18), fears surrounding lifestyle changes of accepting a heart transplant (n = 14) and life satisfaction with an LVAD as a "new normal" (n = 18). Findings suggest that experience with an LVAD can sometimes cause ambivalence about transplant with some patients preferring LVAD as destination even when transplant is an option. We provide clinical and programmatic implications of this, concluding with practical recommendations for how to fully address patients' goals of treatment as their health and situation changes over time.
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Conocimientos, Actitudes y Práctica en Salud , Trasplante de Corazón/psicología , Corazón Auxiliar/psicología , Toma de Decisiones , Femenino , Insuficiencia Cardíaca/terapia , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana EdadRESUMEN
BACKGROUND: The heterogeneity with regard to findings on family meetings (or conferences) suggests a need to better understand factors that influence family meetings. While earlier studies have explored frequency or timing of family meetings, little is known about how factors (such as what is said during meetings, how it is said, and by whom) influence family meeting quality. OBJECTIVES: (1) To develop an evaluation tool to assess family meetings (Phase 1); (2) to identify factors that influence meeting quality by evaluating 34 family meetings (Phase 2). MATERIALS AND METHODS: For Phase 1, methods included developing a framework, cognitive testing, and finalizing the evaluation tool. The tool consisted of Facilitator Characteristics (i.e., gender, experience, and specialty of the person leading the meeting), and 22 items across 6 Meeting Elements (i.e., Introductions, Information Exchanges, Decisions, Closings, Communication Styles, and Emotional Support) and sub-elements. For Phase 2, methods included training evaluators, assessing family meetings, and analyzing data. We used Spearman's rank-order correlations to calculate meeting quality. Qualitative techniques were used to analyze free-text. RESULTS: No Facilitator Characteristic had a significant correlation with meeting quality. Sub-elements related to communication style and emotional support most strongly correlated with high-quality family meetings, as well as whether "next steps" were outlined (89.66%) and whether "family understanding" was elicited (86.21%). We also found a significant and strong positive association between overall proportion scores and evaluators' ratings (rs=0.731, p<0.001). CONCLUSIONS: We filled a gap by developing an evaluation tool to assess family meetings, and we identified how what is said during meetings impacts quality.
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Cuidados Críticos/normas , Relaciones Profesional-Familia , Adulto , Toma de Decisiones Clínicas , Comunicación , Emociones , Femenino , Humanos , Liderazgo , Masculino , Grupo de Atención al Paciente , Investigación Cualitativa , Apoyo SocialRESUMEN
BACKGROUND: How caregivers contribute to positive or negative outcomes for left ventricular assist device (LVAD) patients remains unclear. Our primary study objectives were to (1) identify caregiver support attributes through a retrospective chart review of social workers' psychosocial assessments for LVAD patients and (2) determine how these attributes associated with patients' post-LVAD placement mortality and Interagency Registry for Mechanically Assisted Circulatory Support-defined morbidity events. METHODS AND RESULTS: We retrospectively reviewed and recorded social workers' clinical assessments of adult patients implanted with durable continuous-flow LVADs as bridge to transplant, destination therapy, or bridge to decision from January 2010 to December 2014. Associations between caregiver characteristics and patient mortality and morbidity events were analyzed using Kaplan-Meier curves and Cox proportional hazards regression. Patient follow-up time was calculated as the time from hospital discharge until the earliest among death with LVAD, transplant, or the last day of the study (December 31, 2015). Patients were censored for death with LVAD at the time of transplant or the last day of the study. A total of 96 LVAD recipients were included in this study. Having a caregiver who understands the severity of the illness and options available to the patient (as determined and documented by the social worker; P=0.01), a caregiver who has identified a backup plan (P=0.02), and a caregiver who is able to provide logistical support (P=0.04) significantly mitigated risk of death. The risk of death for an LVAD patient was also significantly lower among those who have at least 1 adult child who lives within 50 miles (P=0.03) and those who have an extended family who can care for the patient (P=0.03). The risk of death was 3.1× more likely among patients who live alone compared with those who do not live alone (P=0.04). No caregiver characteristics were significantly associated with morbidity. CONCLUSIONS: This exploratory, hypothesis-generating study suggests that mortality after LVAD placement is impacted by caregiver understanding of patient severity of illness and caregiver presence. This study provides initial evidence to support further work in understanding the associations between caregivers and LVAD patients, as well as interventions that may improve patient outcomes. CLINICAL TRIAL REGISTRATION: URL: http://www.clinicaltrials.gov. Unique identifier: NCT02248974.
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Cuidadores/psicología , Corazón Auxiliar , Relaciones Interpersonales , Apoyo Social , Función Ventricular Izquierda , Comprensión , Femenino , Conocimientos, Actitudes y Práctica en Salud , Insuficiencia Cardíaca/mortalidad , Insuficiencia Cardíaca/fisiopatología , Insuficiencia Cardíaca/psicología , Humanos , Estimación de Kaplan-Meier , Masculino , Persona de Mediana Edad , Análisis Multivariante , Variaciones Dependientes del Observador , Modelos de Riesgos Proporcionales , Diseño de Prótesis , Sistema de Registros , Estudios Retrospectivos , Medición de Riesgo , Factores de Riesgo , Índice de Severidad de la Enfermedad , Trabajadores Sociales , Factores de Tiempo , Resultado del TratamientoRESUMEN
BACKGROUND: A central tenet of patient-centered health care advocated by the Institute of Medicine and the American Medical Association is to enhance informed decision-making in a way that incorporates patient values, knowledge and beliefs. Achievement of this goal is constrained by a lack of validated measures of patients' knowledge needs. METHODS: In this study we present a comprehensive and valid methodology for developing a clinically informed and patient-centered measure of knowledge about left ventricular assist device (LVAD) therapy to facilitate discussion and measure candidate understanding of treatment options. Using structured interviews with patients, caregivers, candidates for LVAD treatment (New York Heart Association Class III and IV) and expert clinicians (n = 71), we identified top patient decisional needs and perspectives on essential knowledge needs for informed decision-making. From this list, we generated 20 knowledge scale question items to refine in cognitive interviews (n = 5) with patients and patient consultants. RESULTS: Good internal consistency and reliability of the knowledge scale (Cronbach's α = 0.81) was seen in 30 LVAD patients and candidates. Knowledge was higher among patients currently with LVADs than candidates, regardless of receiving standard education (with education: 69.9 vs 50.1, adjusted p = 0.02; without education: 69.9 vs 37.6, adjusted p < 0.001). CONCLUSION: The LVAD knowledge scale may be useful in clinical settings to identify gaps in knowledge among patient candidates considering LVAD treatment, and to better tailor education and discussion with patients and their caregivers, and to enhance informed decision-making before treatment decisions are made.