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Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessment, based on healthcare professionals' insights, could improve patient outcomes. This study aimed to explore how healthcare professionals define and assess breakthrough pain in paediatric palliative care and their attitudes towards a validated paediatric breakthrough pain assessment. This was a descriptive qualitative interview study. Semi-structured interviews were conducted with 29 healthcare professionals working in paediatric palliative care across the UK. An inductive thematic analysis was conducted on the data. Five themes were generated: 'the elusive nature of breakthrough pain', 'breakthrough pain assessment', 'positive attitudes towards', 'reservations towards' and 'features to include in' a paediatric breakthrough pain assessment. The definition and assessment of breakthrough pain is inconsistent in paediatric palliative care. There is a clear need for a validated assessment questionnaire to improve assessment, diagnosis and management of breakthrough pain followed by increased healthcare professional education on the concept.
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Background: Treatment-simplification strategies are important tools for patient-centred management. We evaluated long-term outcomes from a PI monotherapy switch strategy. Methods: Eligible participants attending 43 UK treatment centres had a viral load (VL) below 50 copies/ml for at least 24 weeks on combination ART. Participants were randomised to maintain ongoing triple therapy (OT) or switch to a strategy of physician-selected PI monotherapy (PI-mono) with prompt return to combination therapy if VL rebounded. The primary outcome, previously reported, was loss of future drug options after 3 years, defined as new intermediate/high level resistance to at least one drug to which the participant's virus was considered sensitive at trial entry. Here we report resistance and disease outcomes after further extended follow-up in routine care. The study was registered as ISRCTN04857074. Findings: We randomised 587 participants to OT (291) or PI-mono (296) between Nov 4, 2008, and July 28, 2010 and followed them for a median of more than 8 years (100 months) until 2018. At the end of this follow-up time, one or more future drug options had been lost in 7 participants in the OT group and 6 in the PI-mono group; estimated cumulative risk by 8 years of 2.7% and 2.1% respectively (difference -0.6%, 95% CI -3.2% to 2.0%). Only one PI-mono participant developed resistance to the protease inhibitor they were taking (atazanavir). Serious clinical events (death, serious AIDS, and serious non-AIDS) were infrequent; reported in a total of 12 (4.1%) participants in the OT group and 23 (7.8%) in the PI-mono group (P = 0.08) over the entire follow-up period. Interpretation: A strategy of PI monotherapy, with regular VL monitoring and prompt reintroduction of combination treatment following rebound, preserved future treatment options. Findings confirm the high genetic barrier to resistance of the PI drug class that makes them well suited for creative, patient-centred, treatment-simplification approaches. The possibility of a small excess risk of serious clinical events with the PI monotherapy strategy cannot be excluded. Funding: The National Institute for Health Research Health Technology Assessment programme.
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BACKGROUND: Collaborative relationships between academic oncology and industry (pharmaceutical, biotechnology, "omic," and medical device companies) are essential for therapeutic development in oncology; however, limited research on engagement in and perceptions of these relationships has been done. METHODS: Survey questions were developed to evaluate relationships between academic oncology and industry. An electronic survey was delivered to 1000 randomly selected members of the American Society of Clinical Oncology, a professional organization for oncologists, eliciting respondents' views around oncology-industry collaborations. The responses were analyzed according to prespecified plans. RESULTS: There were 225 survey respondents. Most were from the United States (70.0%), worked at an academic institution (60.1%), worked in medical oncology (81.2%), and had an active relationship with industry (85.8%). One quarter (26.7%) of respondents reported difficulty establishing a relationship with industry collaborators, and most respondents (75%) did not report having had mentorship in developing these relationships. The majority (85.3%) of respondents considered these collaborations important to their careers. Respondents generally thought that scientific integrity was preserved (92%), and most respondents (95%) had little concern over the quality of the collaborative product. Many (60%) shared concerns over potential conflict of interest if an individual with a compensated relationship promoted an industry product for clinical care/research, yet most respondents (67%) stated these relationships did not shape their interactions with patients. CONCLUSIONS: This study provides novel data characterizing the nature of collaborative relationships between clinicians, researchers, and industry in oncology. Although respondents considered these collaborations an important part of clinical and academic oncology, formal education or mentorship around these relationships was rare. Conflicting findings around conflict of interest highlight the importance of more dedicated research in this area. PLAIN LANGUAGE SUMMARY: Business enterprises in health care play a central role in cancer research and care, driving the development of new medical testing, drugs, and devices. Effective working relationships among clinicians, researchers, and these industry partners can promote innovative research and enhance patient care. Study of these collaborations has been limited to date. Through distribution of a questionnaire to cancer clinicians and researchers, we found that most participants consider these relationships valuable, though they find establishing such relationships challenging partly because of gaps in educational programs in this area. Our findings also highlight the need for further policy around the potential bias these relationships can introduce.
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Neoplasias , Oncologistas , Humanos , Estados Unidos , Conflito de Interesses , Oncologia , Neoplasias/terapia , Comércio , Indústria FarmacêuticaRESUMO
Background: Few studies have assessed the impact of race on short-term patient outcomes in the brain metastasis population. The goal of this study is to evaluate the association of race with inpatient clinical presentation, treatment, in-hospital complications, and in-hospital mortality rates for patients with brain metastases (BM). Method: Using data collected from the National Inpatient Sample between 2004 and 2014, we retrospectively identified adult patients with a primary diagnosis of BM. Outcomes included nonroutine discharge, prolonged length of stay (pLOS), in-hospital complications, and mortality. Results: Minority (Black, Hispanic/other) patients were less likely to receive surgical intervention compared to White patients (odds ratio [OR] 0.70; 95% confidence interval [CI] 0.66-0.74, pâ <â 0.001; OR 0.88; 95% CI 0.84-0.93, pâ <â 0.001). Black patients were more likely to develop an in-hospital complication than White patients (OR 1.35, 95% CI 1.28-1.41, pâ <â 0.001). Additionally, minority patients were more likely to experience pLOS than White patients (OR 1.48; 95% CI 1.41-1.57, pâ <â 0.001; OR 1.34; 95% CI 1.27-1.42, pâ <â 0.001). Black patients were more likely to experience a nonroutine discharge (OR 1.25; 95% CI 1.19-1.31, pâ <â 0.001) and higher in-hospital mortality than White (OR 1.13; 95% CI 1.03-1.23, pâ =â 0.008). Conclusion: Our analysis demonstrated that race is associated with disparate short-term outcomes in patients with BM. More efforts are needed to address these disparities, provide equitable care, and allow for similar outcomes regardless of care.
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Rationale: Quality of life (QoL) matters the most to patients with chronic obstructive pulmonary disease (COPD) and is associated with healthcare usage and survival. Pulmonary rehabilitation is the most effective intervention in improving QoL but has low uptake and adherence. Home-based programs are a proposed solution. However, there is a knowledge gap on effective and sustainable home-based programs impacting QoL in patients with COPD. Objectives: To determine whether remote patient monitoring with health coaching improves the physical and emotional disease-specific QoL measured by the Chronic Respiratory Questionnaire (CRQ). Methods: This multicenter clinical trial enrolled 375 adult patients with COPD, randomized to a 12-week remote patient monitoring with health coaching (n = 188) or wait-list usual care (n = 187). Primary outcomes include physical and emotional QoL measured by the CRQ summary scores. Prespecified secondary outcomes included the CRQ domains: dyspnea, CRQ-fatigue, CRQ-emotions, CRQ-mastery, daily physical activity, self-management abilities, symptoms of depression/anxiety, emergency room/hospital admissions, and sleep. Results: Participant age: 69 ± 9 years; 59% women; forced expiratory volume in 1 second percent predicted: 45 ± 19. At 12 weeks, there was a significant and clinically meaningful difference between the intervention versus the control group in the physical and emotional CRQ summary scores: change difference (95% confidence interval): 0.54 points (0.36-0.73), P < 0.001; 0.51 (0.39-0.69), P < 0.001, respectively. In addition, all CRQ domains, self-management, daily physical activity, sleep, and depression scores improved (P < 0.01). CRQ changes were maintained at 24 weeks. Conclusions: Remote monitoring with health coaching promotes COPD wellness and behavior change, given its effect on all aspects of QoL, self-management, daily physical activity, sleep, and depression scores. It represents an effective option for home-based rehabilitation. Clinical trial registered with clinicaltrials.gov (NCT03480386).
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Tutoria , Doença Pulmonar Obstrutiva Crônica , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Masculino , Qualidade de Vida , Dispneia , Volume Expiratório ForçadoRESUMO
The Pediatric Quality Measures Program (PQMP) was established in response to the Children's Health Insurance Program Reauthorization Act of 2009, aiming to measure and improve health care quality and outcomes for the nation's children. This brief report describes the PQMP 2.0 and its components. PQMP 2.0 established a priori research questions (Research Foci) and endeavored to assess usability and feasibility of measures through measure implementation and quality improvement initiatives. The Agency for Healthcare Research and Quality (AHRQ) and the Centers for Medicare and Medicaid Services (CMS) awarded 6 grants to Centers of Excellence (COEs), and a contract to facilitate collaboration and learning across the COEs. The 6 COEs partnered with stakeholders from multiple levels (eg, state, health plan, hospital, provider, family) to field test real-world implementation and refinement of pediatric quality measures and quality improvement initiatives. The PQMP Learning Collaborative (PQMP-LC) consisted of AHRQ, CMS, the 6 COEs, and L&M Policy Research, LLC. The PQMP-LC completed literature reviews, key informant interviews, and data collection to develop reports to address the Research Foci; aided with development of measure implementation and quality improvement toolkits; conceptualized an implementation science framework, analysis, and roadmap; and facilitated dissemination of learnings and products. The various products are intended to support the uptake of PQMP measures and inform future pediatric measurement and improvement work.
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Serviços de Saúde da Criança , Indicadores de Qualidade em Assistência à Saúde , Idoso , Centers for Medicare and Medicaid Services, U.S. , Criança , Proteção da Criança , Humanos , Medicare , Estados UnidosRESUMO
OBJECTIVE: Since its inception, the Pediatric Quality Measures Program has focused on the development and implementation of new and innovative pediatric quality measures (PQM) for both public and private use. Building the evidence base related to measure usability and feasibility is central to increasing measure uptake and, thereby, to increased performance monitoring and quality improvement (QI) for children in Medicaid or the Children's Health Insurance Program. This paper describes key stakeholder insights focused on measure implementation and increasing the uptake of PQM. METHODS: The PQMP Learning Collaborative conducted semistructured interviews with 9 key informants (KIs) representing states, health plans, and other potential end users of the measures. The interviews focused on gaining KIs' perspectives on 6 research questions focused on assessing the feasibility and usability of PQM and strengthening the connection between measurement and improvement. RESULTS: Our synthesis identified insights that highlight facilitators and barriers from the KIs' experience and the strategies they employ when using measures to drive improvement "on-the-ground." Importantly, while the KIs agreed on how essential the research questions are to measure implementation and uptake, they uniformly acknowledged the complexity of the issues raised and pinpointed multiple unresolved issues. DISCUSSION: The views expressed by these stakeholders point to several key issues - including incorporation of socio-economic status into quality measures and performance comparisons, use of benchmark data, and criteria for QI versus accountability - for developing a real-world research agenda to guide the future direction of quality measurement and implementation to improve children's health care.
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Serviços de Saúde da Criança , Medicaid , Criança , Proteção da Criança , Humanos , Resolução de Problemas , Melhoria de Qualidade , Estados UnidosRESUMO
BACKGROUND: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. AIM: To systematically identify pain assessment tools that are currently used in paediatric palliative care and examine their psychometric properties and feasibility and make recommendations for clinical practice. DESIGN: A systematic literature review and evaluation of psychometric properties of pain assessment tools of original peer-reviewed research published from inception of data sources to April 2021. DATA SOURCES: PsycINFO via ProQuest, Web of Science Core, Medline via Ovid, EMBASE, BIOSIS and CINAHL were searched from inception to April 2021. Hand searches of reference lists of included studies and relevant reviews were performed. RESULTS: From 1168 articles identified, 201 papers were selected for full-text assessment. Thirty-four articles met the eligibility criteria and we examined the psychometric properties of 22 pain assessment tools. Overall, the Faces Pain Scale-Revised (FPS-R) had high cross-cultural validity, construct validity (hypothesis testing) and responsiveness; while the Faces, Legs, Activity, Cry and Consolability (FLACC) scale and Paediatric Pain Profile (PPP) had high internal consistency, criterion validity, reliability and responsiveness. The number of studies per psychometric property of each pain assessment tool was limited and the methodological quality of included studies was low. CONCLUSION: Balancing aspects of feasibility and psychometric properties, the FPS-R is recommended for self-assessment, and the FLACC scale/FLACC Revised and PPP are the recommended observational tools in their respective age groups.
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Dor , Cuidados Paliativos , Adolescente , Criança , Humanos , Lactente , Medição da Dor , Psicometria , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Published literature on health care administration, management, and leadership and its impacts on health systems' programs to address health care inequities is limited, as is information about how organizations integrate health equity in their cultures, missions, and strategic plans. PURPOSE: The aims of this study were to identify the key components necessary for health systems to implement systematic organizational change to promote health equity and to describe approaches organizations have implemented. METHODOLOGY/APPROACH: We conducted an environmental scan to identify central principles for implementing lasting change in health systems and experts working to advance health equity through organizational change. We interviewed 19 experts in health equity and hospital executives in 2020. Using iterative thematic analysis, we identified common themes. RESULTS: Consistent with the literature on organizational change, interviewees described a variety of systematic approaches to change, all of which involve the following core components: (a) committed and engaged leadership; (b) integrated organizational structure; (c) commitment to quality improvement and patient safety; (d) ongoing training and education; (e) effective data collection and analytics; and (f) stakeholder communication, engagement, and collaboration. CONCLUSION AND PRACTICE IMPLICATIONS: There is no "one-size-fits-all" approach to advancing health equity. Decisions about which components require the most attention vary depending on an organization's internal and external environment. Understanding those environments and identifying which levers will be most effective are essential. As provider organizations strive to develop more strategic and systematic approaches to addressing disparities, long-term vision and commitment are necessary to achieve sustainable organizational change.
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Equidade em Saúde , Atenção à Saúde , Promoção da Saúde , Humanos , Liderança , Inovação OrganizacionalRESUMO
BACKGROUND: Early diagnosis is key to improve cancer outcomes, and most cancers are diagnosed in primary care after initial symptomatic presentation. Emerging evidence suggests an increase in avoidable cancer deaths owing to the COVID-19 pandemic. AIM: To understand GPs' views on the impact of the COVID-19 pandemic on the clinical assessment of possible cancer. DESIGN & SETTING: A qualitative semi-structured interview study with GPs from the East of England. METHOD: GPs were purposively sampled based on age, sex, and years of experience. Interviews were conducted via Zoom or Microsoft Teams in August and September 2020. Transcribed recordings were analysed inductively using thematic analysis. The Model of Pathways to Treatment guided the analysis. RESULTS: Three themes were identified across 23 interviews on GP views on the impact of: (1) changes in patient help-seeking behaviour on symptoms at presentation; (2) remote consultations on managing patients with possible cancer symptoms; and (3) the COVID-19 pandemic on triaging and referring patients with possible cancer. There were positive changes to practice, but concerns were raised about the adequacy of remote consultations for assessing symptoms. Some GPs reported delayed cancer diagnoses, and uncertainty about how backlog in referrals would be managed. CONCLUSION: This study provides new evidence on the impact of the COVID-19 pandemic on assessing symptomatic patients. Recommendations are made to inform safe and effective primary care clinical practice. Urgent action is needed to mitigate the impact of the COVID-19 pandemic, and ensure appropriate symptomatic assessment now and in the future.
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BACKGROUND: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. AIM: To explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial. DESIGN/ PARTICIPANTS: Three focus groups, analysed using a Framework approach. Doctors, nurses and pharmacists (n = 28), caring for children with life-limiting illnesses receiving palliative care, participated. RESULTS: Oral morphine is frequently used for breakthrough pain across all settings; with transmucosal diamorphine largely limited to use in hospices or given by community nurses, predominantly buccally. Perceived advantages of oral morphine included confidence in its use with no requirement for specific training; disadvantages included tolerability issues, slow onset, unpredictable response and unsuitability for patients with gastrointestinal failure. Perceived advantages of transmucosal diamorphine were quick onset and easy administration; barriers included lack of licensed preparations and prescribing guidance with fears over accountability of prescribers, and potential issues with availability, preparation and palatability. Factors potentially affecting recruitment to a trial were patient suitability and onerousness for families, trial design and logistics, staff time and clinician engagement. CONCLUSIONS: There were perceived advantages to transmucosal diamorphine, but there is a need for access to a safe preparation. A clinical trial would be feasible provided barriers were overcome.
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Dor Irruptiva , Neoplasias , Analgésicos Opioides , Criança , Atenção à Saúde , Estudos de Viabilidade , Fentanila , Grupos Focais , Heroína , Humanos , MorfinaRESUMO
OBJECTIVES: Guidelines recommend routine testing for latent TB infection (LTBI) in people living with HIV. However there are few cost-effectiveness studies to justify this in contemporary high resource, low TB/HIV incidence settings. We sought to assess the uptake, yield and cost-effectiveness of testing for latent and active TB. METHODS: Adults attending an ambulatory HIV clinic in London, UK were prospectively recruited by stratified selection and tested for TB infection using symptom questionnaires, chest radiograph (CXR), tuberculin skin test (TST), T-Spot.TB and induced sputum. From this, 30 testing strategies were compared in a cost-effectiveness model including probabilistic sensitivity analysis using Monte Carlo simulation. RESULTS: 219 subjects were assessed; 95% were using antiretroviral therapy (ART). Smear negative, culture positive TB was present in 0.9% asymptomatic subjects, LTBI in 9%. Only strategies testing those from subSaharan Africa with a TST or interferon gamma release assay (IGRA) with or without CXR, or testing those from countries with a TB incidence of >40/100,000 with TST alone were cost-effective using a £30,000/QALY threshold. CONCLUSIONS: Cost-effectiveness analysis in an adult HIV cohort with high ART usage suggests there is limited benefit beyond routine testing for latent TB in people from high and possibly medium TB incidence settings.
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Infecções por HIV , Tuberculose Latente , Adulto , Análise Custo-Benefício , Infecções por HIV/complicações , Humanos , Testes de Liberação de Interferon-gama , Tuberculose Latente/diagnóstico , Tuberculose Latente/epidemiologia , Londres/epidemiologia , Teste TuberculínicoRESUMO
The Lethality Assessment Program (LAP) aims to empower law enforcement officers to screen victims of domestic violence for potential lethality and connect them to service providers. This research surveyed domestic violence victims seeking legal services (n = 141) to assess whether LAP receipt is associated with greater rates of self-protective measures, service use, or empowerment, and to examine victims' perspectives on the LAP process. Findings indicate no relationship between receipt of the LAP and use of self-protective measures or victim empowerment, mixed evidence between receipt of the LAP and service utilization, and room for improvement regarding how law enforcement officers explain the LAP to victims. Implications are discussed.
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Vítimas de Crime/psicologia , Violência Doméstica/estatística & dados numéricos , Comportamento de Busca de Ajuda , Polícia , Violência Doméstica/legislação & jurisprudência , Violência Doméstica/prevenção & controle , Feminino , Homicídio/prevenção & controle , Humanos , Medição de Risco , Inquéritos e QuestionáriosRESUMO
PURPOSE: Bootstrapping can account for uncertainty in propensity score (PS) estimation and matching processes in 1:1 PS-matched cohort studies. While theory suggests that the classical bootstrap can fail to produce proper coverage, practical impact of this theoretical limitation in settings typical to pharmacoepidemiology is not well studied. METHODS: In a plasmode-based simulation study, we compared performance of the standard parametric approach, which ignores uncertainty in PS estimation and matching, with two bootstrapping methods. The first method only accounted for uncertainty introduced during the matching process (the observation resampling approach). The second method accounted for uncertainty introduced during both PS estimation and matching processes (the PS reestimation approach). Variance was estimated based on percentile and empirical standard errors, and treatment effect estimation was based on median and mean of the estimated treatment effects across 1000 bootstrap resamples. Two treatment prevalence scenarios (5% and 29%) across two treatment effect scenarios (hazard ratio of 1.0 and 2.0) were evaluated in 500 simulated cohorts of 10 000 patients each. RESULTS: We observed that 95% confidence intervals from the bootstrapping approaches but not the standard approach, resulted in inaccurate coverage rates (98%-100% for the observation resampling approach, 99%-100% for the PS reestimation approach, and 95%-96% for standard approach). Treatment effect estimation based on bootstrapping approaches resulted in lower bias than the standard approach (less than 1.4% vs 4.1%) at 5% treatment prevalence; however, the performance was equivalent at 29% treatment prevalence. CONCLUSION: Use of bootstrapping led to variance overestimation and inconsistent coverage, while coverage remained more consistent with parametric estimation.
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Estudos de Coortes , Avaliação de Resultados em Cuidados de Saúde/métodos , Projetos de Pesquisa , Administração Oral , Anticoagulantes/uso terapêutico , Fibrilação Atrial/tratamento farmacológico , Simulação por Computador , Interpretação Estatística de Dados , Humanos , Método de Monte Carlo , Avaliação de Resultados em Cuidados de Saúde/estatística & dados numéricos , Pontuação de Propensão , Modelos de Riscos ProporcionaisRESUMO
Purpose: The creation of the Centers for Medicare & Medicaid Services Office of Minority Health placed increased emphasis on federal efforts to address health disparities. Although the literature establishes a social justice case for addressing health disparities, there is limited evidence of this case being sufficient for businesses to invest in such initiatives. The purpose of this study was to better understand the "business case" behind an organization's investment in health disparity reduction work. Methods: We conducted six case studies (44 on-site interviews) with diverse private-sector provider and payer organizations. Results: While providers and payers cited business rationales for initiating disparity-focused efforts, their motivations differed. Conclusion: As federal entities address health disparities, and payment models shift from volume to value, engaging private stakeholders with the leverage to move the health disparities needle is of principal importance.
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CONTEXT: Although the early and middle stages of Huntington's disease (HD) and its complications have been well described, less is known about the course of late-stage illness. In particular, little is known about the population of patients who enroll in hospice. OBJECTIVES: Our goal is to describe the characteristics of patients with HD who enrolled in hospice. METHODS: This is a retrospective cohort study of electronic medical record data from 12 not-for-profit hospices in the United States from 2008 to 2012. RESULTS: Of the 164,032 patients admitted to these hospices, 101 (0.06%) had a primary diagnosis of HD. Their median age was 57 (IQR 48-65) and 53 (52.5%) were women. Most patients were cared for by a spouse (n = 36, 36.6%) or adult child (n = 20, 19.8%). At the time of admission, most patients were living either at home (n = 39, 38.6%) or in a nursing home (n = 41, 40.6%). All were either bedbound or could ambulate only with assistance. The most common symptom reported during enrollment in hospice was pain (n = 34, 33.7%) followed by anxiety (n = 30, 29.7%), nausea (n = 18, 17.8%), and dyspnea (n = 10, 9.9%). Patients had a median length of stay in hospice of 42 days, which was significantly longer than that of other hospice patients in the sample (17 days), P < 0.001. Of the 101 patients who were admitted to hospice, 73 died, 11 were still enrolled at the time of data analysis, and 17 left hospice either because they no longer met eligibility criteria (n = 14, 13.7%) or because they decided to seek treatment for other medical conditions (n = 3, 3.0%). Of the 73 patients who died while on hospice, most died either in a nursing home (n = 29; 40%) or a hospital (n = 27; 37%). Seventeen patients (23%) died at home. No patient that started in a facility died at home. CONCLUSION: Patients with HD are admitted to hospice at a younger age compared with other patients (57 vs. 76 years old) but have a significant symptom burden and limited functional status. Although hospice care emphasizes the importance of helping patients to remain in their homes, only a minority of these patients were able to die at home.
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Cuidados Paliativos na Terminalidade da Vida , Doença de Huntington/terapia , Aceitação pelo Paciente de Cuidados de Saúde , Idoso , Efeitos Psicossociais da Doença , Feminino , Humanos , Doença de Huntington/epidemiologia , Masculino , Pessoa de Meia-Idade , Estudos RetrospectivosRESUMO
OBJECTIVES: We sought to describe the characteristics of adult patients with bronchiectasis enrolled in the US Bronchiectasis Research Registry (BRR). METHODS: The BRR is a database of patients with non-cystic-fibrosis bronchiectasis (NCFB) enrolled at 13 sites in the United States. Baseline demographic, spirometric, imaging, microbiological, and therapeutic data were entered into a central Internet-based database. Patients were subsequently analyzed by the presence of NTM. RESULTS: We enrolled 1,826 patients between 2008 and 2014. Patients were predominantly women (79%), white (89%), and never smokers (60%), with a mean age of 64 ± 14 years. Sixty-three percent of the patients had a history of NTM disease or NTM isolated at baseline evaluation for entry into the BRR. Patients with NTM were older, predominantly women, and had bronchiectasis diagnosed at a later age than those without NTM. Gastroesophageal reflux disease (GERD) was more common in those with NTM, whereas asthma, primary immunodeficiency, and primary ciliary dyskinesia were more common in those without NTM. Fifty-one percent of patients had spirometric evidence of airflow obstruction. Patients with NTM were more likely to have diffusely dilated airways and tree-in-bud abnormalities. Pseudomonas and Staphylococcus aureus isolates were cultured less commonly in patients with NTM. Bronchial hygiene measures were used more often in those with NTM, whereas antibiotics used for exacerbations, rotating oral antibiotics, steroid use, and inhaled bronchodilators were more commonly used in those without NTM. CONCLUSIONS: Adult patients with bronchiectasis enrolled in the US BRR are described, with differences noted in demographic, radiographic, microbiological, and treatment variables based on stratification of the presence of NTM.
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Bronquiectasia/epidemiologia , Síndromes de Imunodeficiência/epidemiologia , Síndrome de Kartagener/epidemiologia , Infecções por Mycobacterium não Tuberculosas/epidemiologia , Sistema de Registros , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Idoso , Animais , Asma/epidemiologia , Pesquisa Biomédica , Bronquiectasia/microbiologia , Bronquiectasia/fisiopatologia , Comorbidade , Etnicidade/estatística & dados numéricos , Feminino , Volume Expiratório Forçado , Refluxo Gastroesofágico/epidemiologia , Hispânico ou Latino/estatística & dados numéricos , Humanos , Seguro Saúde , Masculino , Pessoa de Meia-Idade , Infecções por Mycobacterium não Tuberculosas/microbiologia , Micobactérias não Tuberculosas , Otite/epidemiologia , Pseudomonas , Infecções por Pseudomonas/epidemiologia , Rinite/epidemiologia , Sinusite/epidemiologia , Fumar/epidemiologia , Espirometria , Infecções Estafilocócicas/epidemiologia , Staphylococcus aureus , Tomografia Computadorizada por Raios X , Estados Unidos/epidemiologia , Capacidade Vital , População Branca/estatística & dados numéricosRESUMO
Generally, women are less likely than men to disclose their HIV status. This analysis examined the relationship between HIV disclosure and (1) perceived barriers to care and (2) quality of life (QoL) for women with HIV. The ELLA (EpidemioLogical study to investigate the popuLation and disease characteristics, barriers to care, and quAlity of life for women living with HIV) study enrolled HIV-positive women aged ≥18 years. Women completed the 12-item Barriers to Care Scale (BACS) questionnaire. QoL was assessed using the Health Status Assessment. BACS and QoL were stratified by dichotomized HIV disclosure status (to anyone outside the healthcare system). Multilevel logistic regression analysis was used to identify factors associated with disclosure. Of 1945 patients enrolled from Latin America, China, Central/Eastern Europe, and Western Europe/Canada between July 2012 and September 2013, 1929 were included in the analysis (disclosed, n = 1724; nondisclosed, n = 205). Overall, 55% of patients lived with a husband/partner, 53% were employed, and 88% were receiving antiretroviral therapy. Patients who were with a serodiscordant partner were more likely to disclose (p = 0.0003). China had a disproportionately higher percentage of participants who did not disclose at all (nearly 30% vs. <15% for other regions). Mean BACS severity scores for medical/psychological service barriers and most personal resource barriers were significantly lower for the disclosed group compared with the nondisclosed group (p ≤ 0.02 for all). Compared with the disclosed group, the nondisclosed group reported statistically significantly higher (p ≤ 0.03) BACS item severity scores for 8 of the 12 potential barriers to care. The disclosed group reported better QoL. Overall, HIV nondisclosure was associated with more severe barriers to accessing healthcare by women with HIV.
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Infecções por HIV/psicologia , Acessibilidade aos Serviços de Saúde , Qualidade de Vida , Parceiros Sexuais , Revelação da Verdade , Adulto , Canadá , China , Europa (Continente) , Europa Oriental , Feminino , Infecções por HIV/diagnóstico , Humanos , América Latina , Masculino , Estado Civil , Pessoa de Meia-Idade , Percepção , Parceiros Sexuais/psicologia , Estigma Social , Inquéritos e QuestionáriosRESUMO
It has been shown that socioeconomic factors are associated with the prognosis of several chronic diseases; however, there is no recent systematic review of their effect on HIV treatment outcomes. We aimed to review the evidence regarding the existence of an association of socioeconomic status with virological and immunological response to antiretroviral therapy (ART). We systematically searched the current literature using the database PubMed. We identified and summarized original research studies in high-income countries that assessed the association between socioeconomic factors (education, employment, income/financial status, housing, health insurance, and neighbourhood-level socioeconomic factors) and virological response, immunological response, and ART nonadherence among people with HIV-prescribed ART. A total of 48 studies met the inclusion criteria (26 from the United States, six Canadian, 13 European, and one Australian), of which 14, six, and 35 analysed virological, immunological, and ART nonadherence outcomes, respectively. Ten (71%), four (67%), and 23 (66%) of these studies found a significant association between lower socioeconomic status and poorer response, and none found a significant association with improved response. Several studies showed that adjustment for nonadherence attenuated the association between socioeconomic status and ART response. Our review provides strong support that socioeconomic disadvantage is associated with poorer response to ART. However, most studies have been conducted in settings such as the United States without universal free healthcare access. Further study in settings with free access to ART could help assess the impact of socioeconomic status on ART outcomes and the mechanisms by which it operates.