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BACKGROUND: The role of wood smoke (WS) exposure in the etiology of chronic obstructive pulmonary disease (COPD), lung cancer (LC), and mortality remains elusive in adults from countries with low ambient levels of combustion-emitted particulate matter. This study aims to delineate the impact of WS exposure on lung health and mortality in adults age 40 and older who ever smoked. METHODS: We assessed health impact of self-reported "ever WS exposure for over a year" in the Lovelace Smokers Cohort using both objective measures (i.e., lung function decline, LC incidence, and deaths) and two health related quality-of-life questionnaires (i.e., lung disease-specific St. George's Respiratory Questionnaire [SGRQ] and the generic 36-item short-form health survey). RESULTS: Compared to subjects without WS exposure, subjects with WS exposure had a more rapid decline of FEV1 (- 4.3 ml/s, P = 0.025) and FEV1/FVC ratio (- 0.093%, P = 0.015), but not of FVC (- 2.4 ml, P = 0.30). Age modified the impacts of WS exposure on lung function decline. WS exposure impaired all health domains with the increase in SGRQ scores exceeding the minimal clinically important difference. WS exposure increased hazard for incidence of LC and death of all-cause, cardiopulmonary diseases, and cancers by > 50% and shortened the lifespan by 3.5 year. We found no evidence for differential misclassification or confounding from socioeconomic status for the health effects of WS exposure. CONCLUSIONS: We identified epidemiological evidence supporting WS exposure as an independent etiological factor for the development of COPD through accelerating lung function decline in an obstructive pattern. Time-to-event analyses of LC incidence and cancer-specific mortality provide human evidence supporting the carcinogenicity of WS exposure.
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Doença Pulmonar Obstrutiva Crônica , Qualidade de Vida , Adulto , Envelhecimento , Humanos , Pulmão , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/epidemiologia , Doença Pulmonar Obstrutiva Crônica/etiologia , Fumaça/efeitos adversos , Fumantes , Madeira/efeitos adversosRESUMO
Background: In the past two decades, many advances have been made to our understanding of interstitial lung disease (ILD) and the way we approach its treatment. Despite this, many questions remain unanswered, particularly those related to how the disease and its therapies impact outcomes that are most important to patients. There is currently a lack of guidance on how to best define and incorporate these patient-centered outcomes in ILD research. Objectives: To summarize the current state of patient-centered outcomes research in ILD, identify gaps in knowledge and research, and highlight opportunities and methods for future patient-centered research agendas in ILD. Methods: An international interdisciplinary group of experts was assembled. The group identified top patient-centered outcomes in ILD, reviewed available literature for each outcome, highlighted important discoveries and knowledge gaps, and formulated research recommendations. Results: The committee identified seven themes around patient-centered outcomes as the focus of the statement. After a review of the literature and expert committee discussion, we developed 28 research recommendations. Conclusions: Patient-centered outcomes are key to ascertaining whether and how ILD and interventions used to treat it affect the way patients feel and function in their daily lives. Ample opportunities exist to conduct additional work dedicated to elevating and incorporating patient-centered outcomes in ILD research.
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Doenças Pulmonares Intersticiais/enfermagem , Pesquisa em Enfermagem/organização & administração , Objetivos Organizacionais , Avaliação de Resultados da Assistência ao Paciente , Satisfação do Paciente , Assistência Centrada no Paciente/organização & administração , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estados UnidosRESUMO
Background: This document provides clinical recommendations for the pharmacologic treatment of chronic obstructive pulmonary disease (COPD). It represents a collaborative effort on the part of a panel of expert COPD clinicians and researchers along with a team of methodologists under the guidance of the American Thoracic Society.Methods: Comprehensive evidence syntheses were performed on all relevant studies that addressed the clinical questions and critical patient-centered outcomes agreed upon by the panel of experts. The evidence was appraised, rated, and graded, and recommendations were formulated using the Grading of Recommendations, Assessment, Development, and Evaluation approach.Results: After weighing the quality of evidence and balancing the desirable and undesirable effects, the guideline panel made the following recommendations: 1) a strong recommendation for the use of long-acting ß2-agonist (LABA)/long-acting muscarinic antagonist (LAMA) combination therapy over LABA or LAMA monotherapy in patients with COPD and dyspnea or exercise intolerance; 2) a conditional recommendation for the use of triple therapy with inhaled corticosteroids (ICS)/LABA/LAMA over dual therapy with LABA/LAMA in patients with COPD and dyspnea or exercise intolerance who have experienced one or more exacerbations in the past year; 3) a conditional recommendation for ICS withdrawal for patients with COPD receiving triple therapy (ICS/LABA/LAMA) if the patient has had no exacerbations in the past year; 4) no recommendation for or against ICS as an additive therapy to long-acting bronchodilators in patients with COPD and blood eosinophilia, except for those patients with a history of one or more exacerbations in the past year requiring antibiotics or oral steroids or hospitalization, for whom ICS is conditionally recommended as an additive therapy; 5) a conditional recommendation against the use of maintenance oral corticosteroids in patients with COPD and a history of severe and frequent exacerbations; and 6) a conditional recommendation for opioid-based therapy in patients with COPD who experience advanced refractory dyspnea despite otherwise optimal therapy.Conclusions: The task force made recommendations regarding the pharmacologic treatment of COPD based on currently available evidence. Additional research in populations that are underrepresented in clinical trials is needed, including studies in patients with COPD 80 years of age and older, those with multiple chronic health conditions, and those with a codiagnosis of COPD and asthma.
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Corticosteroides/normas , Agonistas de Receptores Adrenérgicos beta 2/normas , Broncodilatadores/normas , Quimioterapia Combinada/normas , Antagonistas Muscarínicos/normas , Doença Pulmonar Obstrutiva Crônica/tratamento farmacológico , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Corticosteroides/uso terapêutico , Agonistas de Receptores Adrenérgicos beta 2/uso terapêutico , Adulto , Idoso , Idoso de 80 Anos ou mais , Broncodilatadores/uso terapêutico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Antagonistas Muscarínicos/uso terapêutico , Guias de Prática Clínica como Assunto , Sociedades Médicas/normas , Estados UnidosRESUMO
BACKGROUND: Spirometrically-defined chronic obstructive pulmonary disease (COPD) is considered progressive but its natural history is inadequately studied. We hypothesized that spirometrically-defined COPD states could undergo beneficial transitions. METHODS: Participants in the Lovelace Smokers' Cohort (n = 1553), primarily women, were longitudinally studied over 5 years. Spirometric states included normal postbronchodilator spirometry, COPD Stage I, Unclassified state, and COPD Stage II+, as defined by GOLD guidelines. Beneficial transitions included either a decrease in disease severity, including resolution of spirometric abnormality, or maintenance of non-diseased state. 'All smokers' (n = 1553) and subgroups with normal and abnormal spirometry at baseline (n = 956 and 597 respectively) were separately analyzed. Markov-like model of transition probabilities over an average follow-up period of 5 years were calculated. RESULTS: Among 'all smokers', COPD Stage I, Unclassified, and COPD Stage II+ states were associated with probabilities of 16, 39, and 22 % respectively for beneficial transitions, and of 16, 35, and 4 % respectively for resolution. Beneficial transitions were more common for new-onset disease than for pre-existing disease (p < 0.001). Beneficial transitions were less common among older smokers, men, or those with bronchial hyperresponsiveness but more common among Hispanics and smokers with excess weight. CONCLUSIONS: This observational study of ever smokers, shows that spirometrically-defined COPD states, may not be uniformly progressive and can improve or resolve over time. The implication of these findings is that the spirometric diagnosis of COPD can be unstable. Furthermore, COPD may have a pre-disease state when interventions might help reverse or change its natural history. TRIAL REGISTRATION: NA.
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Pulmão/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Fumantes , Fumar/efeitos adversos , Espirometria , Idoso , Distribuição de Qui-Quadrado , Comorbidade , Progressão da Doença , Feminino , Volume Expiratório Forçado , Hispânico ou Latino , Humanos , Modelos Lineares , Estudos Longitudinais , Masculino , Cadeias de Markov , Pessoa de Meia-Idade , Análise Multivariada , New Mexico/epidemiologia , Sobrepeso/etnologia , Valor Preditivo dos Testes , Doença Pulmonar Obstrutiva Crônica/etnologia , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Fatores de Risco , Índice de Gravidade de Doença , Fumar/epidemiologia , Fatores de Tempo , Capacidade VitalRESUMO
BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity, mortality, and resource use worldwide. The goal of this Official American Thoracic Society (ATS)/European Respiratory Society (ERS) Research Statement is to describe evidence related to diagnosis, assessment, and management; identify gaps in knowledge; and make recommendations for future research. It is not intended to provide clinical practice recommendations on COPD diagnosis and management. METHODS: Clinicians, researchers, and patient advocates with expertise in COPD were invited to participate. A literature search of Medline was performed, and studies deemed relevant were selected. The search was not a systematic review of the evidence. Existing evidence was appraised and summarized, and then salient knowledge gaps were identified. RESULTS: Recommendations for research that addresses important gaps in the evidence in all areas of COPD were formulated via discussion and consensus. CONCLUSIONS: Great strides have been made in the diagnosis, assessment, and management of COPD as well as understanding its pathogenesis. Despite this, many important questions remain unanswered. This ATS/ERS Research Statement highlights the types of research that leading clinicians, researchers, and patient advocates believe will have the greatest impact on patient-centered outcomes.
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Pesquisa Biomédica/organização & administração , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/terapia , Sociedades Médicas/organização & administração , Europa (Continente) , Medicina Baseada em Evidências/métodos , Medicina Baseada em Evidências/organização & administração , Humanos , Objetivos Organizacionais , Formulação de Políticas , Estados UnidosRESUMO
There is growing awareness that dyspnoea, like pain, is a multidimensional experience, but measurement instruments have not kept pace. The Multidimensional Dyspnea Profile (MDP) assesses overall breathing discomfort, sensory qualities, and emotional responses in laboratory and clinical settings. Here we provide the MDP, review published evidence regarding its measurement properties and discuss its use and interpretation. The MDP assesses dyspnoea during a specific time or a particular activity (focus period) and is designed to examine individual items that are theoretically aligned with separate mechanisms. In contrast, other multidimensional dyspnoea scales assess recalled recent dyspnoea over a period of days using aggregate scores. Previous psychophysical and psychometric studies using the MDP show that: 1) subjects exposed to different laboratory stimuli could discriminate between air hunger and work/effort sensation, and found air hunger more unpleasant; 2) the MDP immediate unpleasantness scale (A1) was convergent with common dyspnoea scales; 3) in emergency department patients, two domains were distinguished (immediate perception, emotional response); 4) test-retest reliability over hours was high; 5) the instrument responded to opioid treatment of experimental dyspnoea and to clinical improvement; 6) convergent validity with common instruments was good; and 7) items responded differently from one another as predicted for multiple dimensions.
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Dispneia/diagnóstico , Inquéritos e Questionários , Dispneia/psicologia , Humanos , Psicometria , Reprodutibilidade dos TestesRESUMO
Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity, mortality, and resource use worldwide. The goal of this official American Thoracic Society (ATS)/European Respiratory Society (ERS) research statement is to describe evidence related to diagnosis, assessment and management; identify gaps in knowledge; and make recommendations for future research. It is not intended to provide clinical practice recommendations on COPD diagnosis and management. Clinicians, researchers, and patient advocates with expertise in COPD were invited to participate. A literature search of Medline was performed, and studies deemed relevant were selected. The search was not a systematic review of the evidence. Existing evidence was appraised and summarised, and then salient knowledge gaps were identified. Recommendations for research that addresses important gaps in the evidence in all areas of COPD were formulated via discussion and consensus. Great strides have been made in the diagnosis, assessment and management of COPD, as well as understanding its pathogenesis. Despite this, many important questions remain unanswered. This ATS/ERS research statement highlights the types of research that leading clinicians, researchers, and patient advocates believe will have the greatest impact on patient-centred outcomes.
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Pesquisa Biomédica/organização & administração , Medicina Baseada em Evidências , Guias de Prática Clínica como Assunto , Doença Pulmonar Obstrutiva Crônica/terapia , Sociedades Médicas/organização & administração , Gerenciamento Clínico , Europa (Continente) , Feminino , Humanos , Masculino , Prognóstico , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/mortalidade , Inquéritos e Questionários , Análise de Sobrevida , Estados UnidosRESUMO
Background and Purpose: Stability testing, conducted using a test-retest protocol, measures an instrument's reliability by evaluating the consistency of participant responses to survey questions with repeated testing within a short interval. No studies have measured the stability of the Verran Professional Governance Scale© (VPGS). The purpose of this study was to evaluate the test-retest reliability of the VPGS. Methods: Volunteers from a parent study using the VPGS were sent a link to a retest version of the survey 14 days after taking the initial survey with a reminder email sent 5 days after the first request. Item-level and subscale comparisons were made between participants' initial and retest responses using intraclass correlation coefficients (ICCs) applying a two-way random-effects model. Results: VPGS subscales had ICC scores of 0.71 for decision-making, 0.73 for collateral relationships, and 0.86 for professional obligation. Conclusions: Findings suggest that the VPGS demonstrates test-retest reliability. Future research should evaluate the instrument's responsiveness.
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BACKGROUND: Dyspnea is a common, distressing symptom of cardiopulmonary and neuromuscular diseases. Since the ATS published a consensus statement on dyspnea in 1999, there has been enormous growth in knowledge about the neurophysiology of dyspnea and increasing interest in dyspnea as a patient-reported outcome. PURPOSE: The purpose of this document is to update the 1999 ATS Consensus Statement on dyspnea. METHODS: An interdisciplinary committee of experts representing ATS assemblies on Nursing, Clinical Problems, Sleep and Respiratory Neurobiology, Pulmonary Rehabilitation, and Behavioral Science determined the overall scope of this update through group consensus. Focused literature reviews in key topic areas were conducted by committee members with relevant expertise. The final content of this statement was agreed upon by all members. RESULTS: Progress has been made in clarifying mechanisms underlying several qualitatively and mechanistically distinct breathing sensations. Brain imaging studies have consistently shown dyspnea stimuli to be correlated with activation of cortico-limbic areas involved with interoception and nociception. Endogenous and exogenous opioids may modulate perception of dyspnea. Instruments for measuring dyspnea are often poorly characterized; a framework is proposed for more consistent identification of measurement domains. CONCLUSIONS: Progress in treatment of dyspnea has not matched progress in elucidating underlying mechanisms. There is a critical need for interdisciplinary translational research to connect dyspnea mechanisms with clinical treatment and to validate dyspnea measures as patient-reported outcomes for clinical trials.
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Dispneia , Corticosteroides/uso terapêutico , Analgésicos Opioides/uso terapêutico , Broncodilatadores/uso terapêutico , Dispneia/diagnóstico , Dispneia/etiologia , Dispneia/fisiopatologia , Dispneia/terapia , Terapia por Exercício , Humanos , Imageamento por Ressonância Magnética , OxigenoterapiaRESUMO
Household air pollution from wood smoke (WS), contributes to adverse health effects in both low- and high-income countries. However, measurement of WS exposure has been limited to expensive in-home monitoring and lengthy face-to-face interviews. This paper reports on the development and testing of a novel, self-report nine-item measure of WS exposure, called the Household Exposure to Wood Smoke (HEWS). A sample of 149 individuals using household wood stoves for heating from western states in the U.S., completed the HEWS during the winter months (November to March) of 2013 through 2016 with 30 subjects having in-home particle monitoring. Hard copy or online surveys were completed. Cronbach's alpha (α), intraclass correlations (ICC), exploratory factor analysis (EFA) and tests of associations were done to evaluate reliability and validity of the HEWS. Based on initial analysis, only 9 of the 12 items were retained and entered in the EFA. The EFA did not support a unitary scale as the 9 items demonstrated a 3-factor solution (WS exposure duration, proximity, and intensity) with Cronbach's α of 0.79, 0.91, and 0.62, respectively. ICC was 0.86 of the combined items with single items ranging from 0.46 to 0.95. WS intensity was associated with symptoms and levoglucosan levels, while WS duration was associated with stove and flume maintenance. The three-dimensional HEWS demonstrated internal consistency and test-retest reliability, structural validity, and initial criterion and construct validity.
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BACKGROUND: Dyspnea is among the most common reasons for emergency department (ED) visits by patients with cardiopulmonary disease who are commonly asked to recall the symptoms that prompted them to come to the ED. The reliability of recalled dyspnea has not been systematically investigated in ED patients. METHODS: Patients with chronic or acute cardiopulmonary conditions who came to the ED with dyspnea (N = 154) completed the Multidimensional Dyspnea Profile (MDP) several times during the visit and in a follow-up visit 4 to 6 weeks later (n = 68). The MDP has 12 items with numerical ratings of intensity, unpleasantness, sensory qualities, and emotions associated with how breathing felt when participants decided to come to the ED (recall MDP) or at the time of administration ("now" MDP). The recall MDP was administered twice in the ED and once during the follow-up visit. Principal components analysis (PCA) with varimax rotation was used to assess domain structure of the recall MDP. Internal consistency reliability was assessed with Cronbach's alpha. Test-retest reliability was assessed with intraclass correlation coefficients (ICCs) for absolute agreement for individual items and domains. RESULTS: PCA of the recall MDP was consistent with two domains (Immediate Perception, 7 items, Cronbach's alpha = .89 to .94; Emotional Response, 5 items; Cronbach's alpha = .81 to .85). Test-retest ICCs for the recall MDP during the ED visit ranged from .70 to .87 for individual items and were .93 and .94 for the Immediate Perception and Emotional Response domains. ICCs were much lower for the interval between the ED visit and follow-up, both for individual items (.28 to .66) and for the Immediate Perception and Emotional Response domains (.72 and .78, respectively). CONCLUSIONS: During an ED visit, recall MDP ratings of dyspnea at the time participants decided to seek care in the ED are reliable and sufficiently stable, both for individual items and the two domains, that a time lag between arrival and questionnaire administration does not critically affect recall of perceptual and emotional characteristics immediately prior to the visit. However, test-retest reliability of recall over a 4- to 6-week interval is poor for individual items and significantly attenuated for the two domains.
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Dispneia/fisiopatologia , Dispneia/psicologia , Serviço Hospitalar de Emergência/estatística & dados numéricos , Rememoração Mental , Inquéritos e Questionários/normas , Adulto , Idoso , Dispneia/etiologia , Emoções , Feminino , Insuficiência Cardíaca/complicações , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Percepção , Estudos Prospectivos , Reprodutibilidade dos Testes , Doenças Respiratórias/complicaçõesRESUMO
OBJECTIVES: To determine the prevalence of burnout among the midwifery workforce and the association between fixed personal and practice characteristics and modifiable organizational factors, specifically practice environment, to burnout among midwives in the United States. DATA SOURCE: Primary data collection was conducted via an online survey of the complete national roster of certified nurse-midwives and certified midwives over 3 weeks in April 2017. STUDY DESIGN: The study was a cross-sectional observational survey consisting of 95 items about personal and practice characteristics, respondents' practice environments, and professional burnout. DATA COLLECTION METHODS: The inclusion criterion was actively practicing midwifery in the United States. Data were analyzed with bivariate analyses to determine the association between personal and practice characteristics and burnout. A hierarchal multilinear regression evaluated the interrelationship between personal and practice characteristics, practice environment, and burnout. PRINCIPAL FINDINGS: Of the almost one third (30.9%) of certified nurse-midwives and certified midwives who responded to the survey, 40.6% met criteria for burnout. Weak negative correlations existed between burnout and indicators of career longevity: age (r(2256) = -0.09, p < 0.01), years as a midwife (r(2267) = -0.07, p = 0.01), and years with employer (r(2271) = -0.05, p = 0.02). There were significant relationships between burnout score and patient workload indicators: patients per day in outpatient setting (F(5,2292) = 13.995, p < 0.01), birth volume (F(3,1864) = 8.35, p < 0.01), and patient acuity (F(2,2295) = 20.21, p < 0.01). When the practice environment was entered into the model with personal and practice characteristics, the explained variance increased from 6.4% to 26.5% (F(20,1478) = 27.98, p < 0.01). CONCLUSIONS: Our findings suggested that a key driver of burnout among US midwives was the practice environment, specifically practice leadership and participation and support for the midwifery model of care. Structural and personal characteristics contributed less to burnout score than the practice environment, implying that prevention of burnout may be achieved through organizational support and does not require structural changes to the provision of perinatal health.
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Esgotamento Profissional , Tocologia , Enfermeiros Obstétricos , Esgotamento Profissional/epidemiologia , Estudos Transversais , Feminino , Humanos , Gravidez , Inquéritos e Questionários , Estados Unidos/epidemiologia , Recursos HumanosRESUMO
In experimental settings, replacing old wood stoves with new wood stoves results in reduced personal exposure to household air pollution. We tested this assumption by measuring PM2.5 and levoglucosan concentrations inside homes and correlated them with wood stove age. Methods: Thirty homes in the Albuquerque, NM area were monitored over a seven-day period using in-home particulate monitors placed in a common living area during the winter months. Real-time aerosol monitoring was performed, and filter samples were analyzed gravimetrically to calculate PM2.5 concentrations and chemically to determine concentrations of levoglucosan. A linear regression model with backward stepwise elimination was performed to determine the factors that would predict household air pollution measures. Results: In this sample, 73.3% of the households used wood as their primary source of heating, and 60% burned daily or almost daily. The mean burn time over the test week was 50 ± 38 h, and only one household burned wood 24/day (168 h). The average PM2.5 concentration (standard deviation) for the 30 homes during the seven-day period was 34.6 µg/m3 (41.3 µg/m3), and median (min, max) values were 15.5 µg/m3 (7.3 µg/m3, 193 µg/m3). Average PM2.5 concentrations in 30 homes ranged from 0−15 µg/m3 to >100 µg/m3. Maximum PM2.5 concentrations ranged from 100−200 µg/m3 to >3000 µg/m3. The levoglucosan levels showed a linear correlation with the total PM2.5 collected by the filters (R2 = 0.92). However, neither mean nor peak PM2.5 nor levoglucosan levels were correlated with the age (10.85 ± 8.54 years) of the wood stove (R2 ≤ 0.07, p > 0.23). The final adjusted linear regression model showed that average PM2.5 was associated with reports of cleaning the flue with a beta estimate of 35.56 (3.47−67.65) and R2 = 0.16 (p = 0.04). Discussion: Cleaning the flue and not the wood stove age was associated with household air pollution indices. Education on wood stove maintenance and safe burning practices may be more important in reducing household air pollution than the purchase of new stoves.
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BACKGROUND: Family caregivers of patients with a destination therapy left ventricular assist device play a central and formalized role in postimplant care. We aimed to characterize longitudinal stress, predictors and correlates of stress, and coping processes among left ventricular assist device caregivers. METHODS: We performed a sequential, exploratory, mixed-methods study from 6 diverse left ventricular assist device programs. The primary outcome for the quantitative analysis was the Perceived Stress Scale-10 at 6 months (0-40). Based on the quantitative findings and guided by the Transactional Model of Stress and Coping, semistructured interviews explored causes of stress and coping processes. Integration was performed during the qualitative and interpretation phase. RESULTS: A total of 96 caregivers met inclusion criteria for quantitative analysis. Mean (SD) Perceived Stress Scale score was 14.3 (5.5) preimplant and 11.8 (6.9) at 6 months. Preimplant, only decreased preparedness for caregiving was associated with higher Perceived Stress Scale score at 6 months. At 6 months, increased caregiver depressive symptoms, decreased caregiver preparedness for caregiving, and lower patient quality of life were associated with higher Perceived Stress Scale score. Qualitative analysis of 25 caregivers revealed the causes of stress coalesced around 3 themes: (1) lack of preparedness to be a caregiver, (2) uniqueness of stress for the caregiver and patient situation, and (3) caregiving responsibilities physically and emotionally impacting caregivers. To cope with stress, most caregivers employed emotion-focused coping. CONCLUSIONS: In family caregivers of patients with a left ventricular assist device, higher perceived stress was associated with lower caregiver preparedness, higher caregiver depressive symptoms, and lower patient quality of life. Emotion-focused coping strategies were common for caregivers. Future work should better prepare caregivers for this role and support them through the caregiving experience. Registration: URL: https://www.clinicaltrials.gov; Unique identifier: NCT02344576.
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Cuidadores/psicologia , Insuficiência Cardíaca/psicologia , Coração Auxiliar/psicologia , Estresse Psicológico/fisiopatologia , Adaptação Psicológica/fisiologia , Adulto , Idoso , Feminino , Insuficiência Cardíaca/fisiopatologia , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Estresse Psicológico/diagnósticoRESUMO
BACKGROUND: Home-based palliative care (HBPC) is an important aspect of care for patients with moderate to advanced stages of chronic obstructive pulmonary disease (COPD) and their caregivers. HBPC provides symptom management, advanced care planning and goals of care conversations in the home, with the goal of maximizing quality of life and minimizing health care utilization. There is a gap in the knowledge of how the patients with COPD and their caregivers experience HBPC. The overall purpose of this study is to describe which aspects of HBPC were the most meaningful to patients with COPD, and their caregivers. METHODS: Through a descriptive design with narrative analysis methodology, we interviewed COPD patients and their caregivers to investigate their experience of HBPC received in the 30 days post hospitalization for a COPD exacerbation. A thematic analysis was conducted and the patient and caregiver interviews were analyzed in dyad using thematic analysis. RESULTS: A total of 10 dyads were interviewed. Patients and their caregivers perceived 3 times as many facilitators as barriers of receiving home-based palliative care in the 30 days post hospitalization for a COPD exacerbation. The outcomes of this study provide information that describes the aspects of HBPC that patients and their caregivers found most meaningful. CONCLUSION: An understanding of the most meaningful aspects of HBPC from the perspectives of the patients with COPD and their caregivers can be used to inform the development of the best model for HBPC for this patient population.
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Background: Incorporating patient narratives into the electronic health record (EHR) is an opportunity to integrate patients' values and beliefs into their care and improve patient-clinician communication. Objective: The study's aims were to (1) identify barriers and facilitators influencing the implementation of a cocreated patient narrative intervention and (2) assess the acceptability/usability of the patient's narrative from the perspective of key stakeholders-the patient and acute care bedside nurse. Design: We used an implementation design using mixed methods. Setting/Subjects: Twenty patients and 18 nurses were enrolled from five units in an acute care hospital. Results: For patients, the narrative intervention provided an avenue to discuss and share how illness has impacted their life in psychological, social, and spiritual belief domains. For nurses, the ability to read the patient's narrative provided benefits that fostered improved communication and more connection with their patients. Despite successfully meeting recruitment targets, time was the largest barrier for patient and nurse participants. Overall, the nurse participants gave high ratings on most of the items on the System Usability Scale with one exception-EHR integration. The lack of EHR integration on the System Usability Survey corresponds with the nurses' stated desire for a prominent location of patient narratives in the EHR. Conclusions: The patient narrative intervention was acceptable and usable for hospitalized patients and nurse participants. Our study demonstrates that a cocreated patient narrative intervention provides avenues for patients and nurses to connect despite being in hectic acute care settings. Trial Registration: ClinicalTrials.gov NCT03391115.
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Comunicação , Registros Eletrônicos de Saúde , Humanos , Narração , Inquéritos e QuestionáriosRESUMO
Chronic obstructive pulmonary disease (COPD) ranks fourth as a cause of death in the United States, behind heart disease, cancer, and stroke. Additionally, since serious co-morbidities are often present in patients with COPD, many die from other diseases such as cardiac disease or cancer. Not surprisingly, multiple factors, reflective of both respiratory disease process and the substantial co-morbidity, predict survival in the disease. As might be expected, physiologic derangements such as airflow obstruction, hypoxemia, lung hyperinflation, and exercise capacity predict survival in COPD. Anemia, cachexia and reductions in lean body mass also relate to prognosis. Perhaps less recognized is the more recent documentation that more subjective assessments, such as dyspnea and health related quality of life, are also important predictors of survival. The integration of some of the most important of these variables may provide a more comprehensive evaluation of disease severity. For example, a validated multi-dimensional disease rating that includes the body mass index (B), degree of airflow obstruction (O), dyspnea (D), and exercise capacity (E) (BODE Index) is capable of predicting COPD-related hospitalization and mortality more than its individual components.