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While the supporting role of families and friends has been widely recognized in cancer care, little data exist on how they influence patients' decisions regarding clinical trial participation, accounting for patients' decisional preferences. The goal of our study was to examine the process of clinical trial decision-making from the perspective of adults with cancer and their decision partners. Semi-structured interviews were conducted with 12 patients and 12 decision partners-family and friends engaged in the medical decision-making. Themes included: (1) having the ability and confidence to make decisions; (2) gaining insight about clinical trials; (3) trusting someone in the process; and (4) realizing readiness and context. Our findings will enhance understanding of how patients make clinical trial decisions based on decisional preferences from the perspectives of patients and decision partners. The findings may also help to increase clinician awareness and inclusion of decision partners in conversations regarding clinical trials.
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Toma de Decisiones , Neoplasias , Adulto , Toma de Decisiones Clínicas , Ensayos Clínicos como Asunto , Comunicación , Humanos , Neoplasias/terapia , Participación del Paciente , Prioridad del Paciente , Investigación CualitativaRESUMEN
RATIONALE: Individuals with cystic fibrosis (CF) experience frequent acute pulmonary exacerbations, which lead to decreased lung function and reduced quality of life. OBJECTIVES: The goal of this study was to determine if an intervention directed toward early detection of pulmonary exacerbations using home spirometry and symptom monitoring would result in slower decline in lung function than in control subjects. METHODS: We conducted a multicenter, randomized trial at 14 CF centers with subjects at least 14 years old. The early intervention arm subjects measured home spirometry and symptoms electronically twice per week. Sites were notified if a participant met criteria for an exacerbation and contacted participants to determine if treatment for acute exacerbation was required. Participants in the usual care arm were seen every 3 months and were asked to contact the site if they were concerned about worsening pulmonary symptoms. MEASUREMENTS AND MAIN RESULTS: The primary outcome was the 52-week change in FEV1. Secondary outcomes included time to first exacerbation and subsequent exacerbation, quality of life, and change in weight. A total of 267 patients were randomized, and the study arms were well matched at baseline. There was no significant difference between study arms in 52-week mean change in FEV1 slope (mean slope difference, 0.00 L, 95% confidence interval, -0.07 to 0.07; P = 0.99). The early intervention arm subjects detected exacerbations more frequently than usual care arm subjects (time to first exacerbation hazard ratio, 1.45; 95% confidence interval, 1.09 to 1.93; P = 0.01). Adverse events were not significantly different between treatment arms. CONCLUSIONS: An intervention of home monitoring among patients with CF was able to detect more exacerbations than usual care, but this did not result in slower decline in lung function. Clinical trial registered with www.clinicaltrials.gov (NCT01104402).
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Fibrosis Quística/fisiopatología , Pulmón/fisiopatología , Autocuidado/métodos , Adulto , Femenino , Volumen Espiratorio Forzado/fisiología , Humanos , Masculino , Espirometría/métodosRESUMEN
BACKGROUND: People living with cystic fibrosis experience pain that is associated with decreased quality of life, poorer health outcomes, and increased mortality. Though pain is highly prevalent as a symptom, it is currently unknown how persons with CF describe their pain experiences or the ways those experiences impact their lives. AIMS: To explore and describe ways adolescents and adults with CF experience pain. Design/Setting/Subjects/Methods: An exploratory descriptive design was implemented to perform interviews with 10 individuals with CF and self-reported moderate to severe pain. The interviews explored their pain experiences within five domains: Pain Characteristics, Activities, Relationships, Work/School Life, and Health Care Team. Transcribed interviews underwent a content analysis with team-based constant comparisons. RESULTS: Individuals with CF identify the disease as being painful; express how pain negatively affects all aspects of their lives, including loss of functionality and productivity; and are able to disclose their pain to those with whom they have relationships. Adolescents feel an emotional toll from the loss of socialization as a result of pain and feel their health care team adequately supports their pain. Adults express a unique emotional pain component to CF and feel stigmatized and unsupported by their health care team when asking for pain management solutions. CONCLUSION: There are differences in how pain is perceived by adolescents and adults with CF that have otherwise not been reported in the current literature. Further explorations of pain across the lifespan and health care provider attitudes toward pain management are needed to guide the development of effective pain management interventions for those with CF.
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Fibrosis Quística/complicaciones , Percepción del Dolor , Adolescente , Adulto , Fibrosis Quística/psicología , Femenino , Humanos , Entrevistas como Asunto/métodos , Masculino , Persona de Mediana Edad , Manejo del Dolor/métodos , Manejo del Dolor/normas , Calidad de Vida/psicología , AutoinformeRESUMEN
The prevalence of fungi in the respiratory tracts of cystic fibrosis (CF) patients has risen. However, fungal surveillance is not routinely performed in most clinical centers in the United States, which may lead to an underestimation of the true prevalence of the problem. We conducted a prospective study comparing the rates of detection for clinically important fungi (CIF), defined as Aspergillus, Scedosporium, and Trichosporon species and Exophiala dermatitidis, in CF sputa using standard bacterial and selective fungal culture media, including Sabouraud dextrose agar with gentamicin (SDA), inhibitory mold agar (IMA), and brain heart infusion (BHI) agar with chloramphenicol and gentamicin. We described the prevalence of these fungi in an adult CF population. A total of 487 CF respiratory samples were collected from 211 unique participants. CIF were detected in 184 (37.8%) samples. Only 26.1% of CIF-positive samples were detected in bacterial culture medium, whereas greater rates of detection for fungi were found in IMA (65.8%; P < 0.001), in SDA (at 30°C, 64.7%; P = 0.005), and in BHI agar (63.0%; P = 0.001). The prevalences of Aspergillus and Scedosporium species were 40.8% and 5.2%, respectively, which are greater than the nationally reported prevalence numbers of 20.4% and 1.9%. Selective fungal culture media and longer incubation periods yielded higher rates of detection for CIF in CF sputum samples compared with that detected in bacterial culture medium, resulting in an underdetection of fungi by bacterial culture alone. The prevalence of fungi in CF may be better estimated by using selective fungal culture media, and this may translate to important clinical decisions.
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Medios de Cultivo/química , Fibrosis Quística/complicaciones , Hongos/clasificación , Hongos/aislamiento & purificación , Técnicas Microbiológicas/métodos , Micosis/microbiología , Infecciones del Sistema Respiratorio/microbiología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Micosis/epidemiología , Prevalencia , Estudios Prospectivos , Sistema Respiratorio , Infecciones del Sistema Respiratorio/epidemiología , Esputo/microbiología , Estados Unidos/epidemiología , Adulto JovenRESUMEN
OBJECTIVES: To determine the incidence and risk factors of tracheostomy-related pressure injuries (TRPI) and examine the COVID-19 pandemic's impact on TRPI incidence. DESIGN: Secondary analysis of Global Tracheostomy Collaborative database and a multi-center hospital system's electronic medical records. SETTING: 27 hospitals, primarily in the United States, United Kingdom, and Australasia. PATIENTS: 6,400 adults and 2,405 pediatric patients hospitalized with tracheostomy between 1 January 2019 and 31 December 2021. MEASUREMENT: TRPI as a binary outcome, reported as odds ratios. RESULTS: TRPI incidence was 4.69 % in adults and 5.65 % in children. For adults, associated risks were female sex (OR: 0.64), severe obesity (OR: 2.62), ICU admission (OR: 2.05), cuffed tracheostomy (OR: 1.49), fenestrated tracheostomy (OR: 15.37), percutaneous insertion (OR: 2.03) and COVID-19 infection (OR: 1.66). For children, associated risks were diabetes mellitus (OR: 4.31) and ICU admission (OR: 2.68). TRPI odds increased rapidly in the first 60 days of stay. Age was positively associated with TRPI in adults (OR: 1.014) and children (OR: 1.060). Black patients had higher TRPI incidence than white patients; no moderating effects of race were found. Hospital cluster effects (adults ICC: 0.227; children ICC: 0.138) indicated unmeasured hospital-level factors played a significant role. CONCLUSIONS: Increasing age and length of stay up to 60 days are TRPI risk factors. Other risks for adults were female sex, severe obesity, cuffed/fenestrated tracheostomy, percutaneous insertion, and COVID-19; for children, diabetes mellitus and FlexTend devices were risks. Admission during the COVID-19 pandemic had contrasting effects for adults and children. Additional research is needed on unmeasured hospital-level factors. IMPLICATIONS FOR CLINICAL PRACTICE: These findings can guide targeted interventions to reduce TRPI incidence and inform tracheostomy care during public health crises. Hospital benchmarking of tracheostomy-related pressure injuries is needed.
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Background: Elexacaftor/Tezacaftor/Ivacaftor (ETI) is a CFTR modulator that has led to large benefits in lung function, pulmonary exacerbation rates, and respiratory symptoms. Less is known about the effect of ETI on non-pulmonary symptoms. The objective of this study was to examine the changes in patient reported outcomes after starting ETI in multiple non-pulmonary symptoms. Methods: This was a prospective cohort study of adults with CF. Participants completed questionnaires prior to starting ETI and then at weeks 2, 4, 6, 8, 10, 12, and 14 after starting ETI. They completed the following validated instruments: PROMIS Pain Intensity, PROMIS Pain Interference, FACIT Fatigue, SNOT22, PAC-SYM, PHQ8, GAD7 and Pittsburgh Sleep Quality Index. Longitudinal changes for outcomes were modelled using linear regression based on general estimating equations. Results: 22 participants enrolled who answered questionnaires before and after starting ETI. The median age was 35.3 years (IQR 11.1) and 13 (59.1%) were male. In models adjusted for age, sex, and baseline value there were significant improvements in pain interference (ß = -2.57; 95% CI -4.92, -0.23), sinus symptoms (ß = -4.50; 95% CI -7.59, -1.41), and sleep disturbance (ß = -1.90; 95% CI -2.71, -1.09) over 14 weeks after starting ETI. No symptom areas worsened over the study period. Conclusions: In this prospective study we found statistically significant improvements in three different non-pulmonary symptom areas in people with CF started on ETI. While this was a small, uncontrolled study it suggests that use of highly effective CFTR modulators can result in benefits for patients beyond pulmonary symptoms.
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Background: An intersectional approach to health research provides an analytical foundation to explain the multidimensionality of health status, resource accessibility, privilege, oppression, and current and historical context. The use of intersectionality in health research has known limitations. Its use in health-related fields too often focuses on outcomes, such as health disparities, rather than processes, such as power structures and social determinants. Objective: This scoping review serves to examine how intersectionality has been implemented by nurses in the peer-reviewed literature. We offer insight into how it may be incorporated to inform future nursing research and healthcare provision. Design & Methods: Systematic searches of PubMed (n = 257), SCOPUS (n = 807), EMBASE (n = 396), CINAHL (n = 224), and Health Source: Nursing and Academics (n = 491), published since the seminal publication on intersectionality (1989 - 2023), identified 131 research articles that met inclusion and exclusion criteria. Data extraction and synthesis were used to describe the breadth and depth of the literature specific to the application of intersectionality in nursing research. Results: The included studies used intersectionality to examine the intersections of numerous identities, such as race, gender, and immigration status. However, most studies were descriptive/observational in nature, underreported their methods, and conducted deficit-based research instead of strength-based inquiries. Of note, the vast majority of included articles were published within the last five years. Conclusions: Future researchers using intersectionality as a framework can improve their approach by reporting clear definitions and operationalization of intersectionality. Observational science dominated the included studies; future research should focus on intervention development and evaluation using an intersectional lens. Lastly, caution should be placed on research that focuses solely on deficits among marginalized communities, which places scientists at risk of perpetuating stereotypes or enhancing already-existing stigmas.
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BACKGROUND: Chronic pain is common among people living with cystic fibrosis (CF) and associated with worse clinical outcomes. Despite this, little is known about how pain is managed and how opioids are used to treat pain. The purpose of this convergent mixed methods study was to examine self-reported satisfaction and effectiveness of pain management strategies among a sample of adults with CF who are prescribed opioids. METHODS: We developed an online survey querying 4 domains - demographics, pain characteristics, pain communication, and management strategies. This was distributed nationally to adults with CF (n=48) via various online platforms. We obtained quantitative and qualitative responses regarding satisfaction and effectiveness of pain management. Emerged themes from qualitative data were compared with responses from quantitative survey domains. RESULTS: Participants reported high levels of satisfaction and effectiveness with their opioid pain management plans. However, qualitative themes emerged regarding fears of addiction, experiences of feeling stigmatized by the healthcare system and ineffectiveness and inefficiency of alternative therapies for adequate pain relief. CONCLUSIONS: Adults with CF reported opioids as an important component of their current pain management plans despite risks associated with opioid use. CF-specific pain management guideline development is warranted as is further research exploring pain development.
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Analgésicos Opioides/uso terapéutico , Dolor Crónico/tratamiento farmacológico , Fibrosis Quística/tratamiento farmacológico , Manejo del Dolor/métodos , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
Background: As nurses, we identify our profession as a caring one, but how does this identity translate from a conceptual definition, to real-world practice for the Clinical Research Nurse? Aim: To offer a novel, four-point conceptual model that encapsulates the Clinical Research Nurse's intrinsic value, active leadership, and direct contribution to high quality, person-centered, safe care, addressing current misperceptions of research nursing. Methods: This paper describes the provision of 'care', safely delivered by the Clinical Research Nurse through a four-point conceptual model and case-driven example. Discussion: Clinical research nursing is conceptualized within the domains of Care and Trust, Role, Impact, and Integration. The case example demonstrates real-world application of these domains and the expertise required to balance the complexities of clinical needs and research demands in a healthcare environment. Conclusions: This paper offers a mechanism for understanding the importance of the Clinical Research Nurse and their role in maintaining safety and a high-level view of the care arena. These reflections are considered with an international application for the role.
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Black transgender women are disproportionately affected by violence and poor care-delivery, contributing to poor mental health. Little is known regarding the effect of transgender and gender diverse (TGD) community connection (TCC) on health. This analysis (a) explores relationships between TCC, polyvictimization, and mental health and (b) analyzes how TCC influenced help-seeking following violent experiences among Black transgender women. Mixed-methods data from 19 Black transgender women were analyzed using correlational and thematic content analyses. Findings suggest that TCC is associated with improved help-seeking and mental health among Black transgender women, highlighting a need for longitudinal research to identify approaches for leveraging TCC.
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Personas Transgénero , Atención a la Salud , Femenino , Identidad de Género , Humanos , Salud Mental , Personas Transgénero/psicología , ViolenciaRESUMEN
BACKGROUND: Females with cystic fibrosis (CF) have been shown to have worse pulmonary exacerbation (PEx) related outcomes compared to males. However, it is unknown if sex differences in treatment patterns are contributing to these outcomes. Thus, we sought to explore sex differences in treatment patterns in the Standardized Treatment of Pulmonary Exacerbations (STOP) cohort. METHODS: Data for 220 participants from the STOP cohort were analyzed. Multivariable regression models were used to assess if female sex was associated with duration of treatment with IV antibiotics and inpatient length of stay. Secondary outcomes included antibiotic selection, adjunctive therapies, mean FEV1pp and CFRSD-CRISS respiratory symptom scores at the four study assessments. RESULTS: In our adjusted model, the average number of IV antibiotic treatment days was 13% higher in females compared to males (IRR 1.13, 95% CI=1.02,1.25; p=0.02). We found no sex differences in inpatient length of stay, number of IV antibiotics, antibiotic selection or initiation of adjunctive therapies. Overall, females had higher CFRSD-CRISS scores at the end of IV therapy indicating worse symptom severity (23.6 for females vs. 18.5 for males, p=0.03). CONCLUSIONS: Despite females having a longer treatment duration, our findings demonstrate that males and females are receiving similar treatments which suggest that the outcome disparities in females with CF may not be due to failure to provide the same level of care. Further research dedicated to sex differences in CF is necessary to understand why clinical outcomes differ between males and females.
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Antibacterianos/administración & dosificación , Fibrosis Quística/tratamiento farmacológico , Fibrosis Quística/fisiopatología , Brote de los Síntomas , Adulto , Duración de la Terapia , Femenino , Humanos , Masculino , Factores SexualesRESUMEN
Although precise numbers are difficult to obtain, the population of patients receiving long-term ventilation has increased over the last 20 years, and includes patients with chronic lung diseases, neuromuscular diseases, spinal cord injury, and children with complex disorders. This article reviews the equipment and logistics involved with ventilation outside of the hospital. Discussed are common locations for long-term ventilation, airway and secretion management, and many of the potential challenges faced by individuals on long-term ventilation.
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Enfermedades Neuromusculares/terapia , Respiración Artificial/métodos , Insuficiencia Respiratoria/cirugía , Traqueostomía/métodos , Enfermedad Crónica , Humanos , Insuficiencia Respiratoria/terapiaRESUMEN
CONTEXT: Pain is a common problem in patients with cystic fibrosis (CF) and in adults is associated with lower quality of life and more pulmonary complications. Less is known about the impact of pain in adolescents with CF. OBJECTIVES: This study aimed to describe pain in an adolescent CF population and to determine if pain at baseline is associated with lower health-related quality of life (HRQoL) and worse pulmonary outcomes at six-month follow-up. METHODS: We administered surveys at baseline and at six months to CF patients aged 12 to 20 years. Analyses included Wilcoxon log-rank tests, Spearman correlations, and linear and logistic regressions. RESULTS: Seventy-three patients (86.9%) completed the baseline questionnaire and 53 patients (63.1%) completed the six-month follow-up questionnaire. Mean age was 15.6 ± 2.5 and mean FEV1 was 79 ± 26% predicted; 89% of patients reported pain in the three months before the survey, but in most it was short lived and mild to moderate in severity. Abdominal pain was the most common location. Pain was associated with increased pulmonary exacerbations (odds ratios = 1.99 for every one-point increase on a composite pain scale, P = 0.03) and with lower HRQoL. CONCLUSIONS: Pain in adolescents with CF is associated with lower HRQoL and more pulmonary exacerbations. Greater efforts are needed to manage pain in this population and to determine if treatment of pain improves other outcomes.