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1.
Plast Reconstr Surg Glob Open ; 12(5): e5840, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38818233

RESUMO

Background: Metoidioplasty and phalloplasty gender-affirming surgery (MaPGAS) is increasingly performed and requires patients to make complex decisions that may lead to decisional uncertainty. This study aimed to evaluate decisional conflict in individuals considering MaPGAS. Methods: We administered a cross-sectional survey to adult participants assigned female sex at birth and considering MaPGAS, recruited via social media platforms and community health centers. We collected data on demographics, medical and surgical history, MaPGAS type considered, and the Decisional Conflict Scale (DCS). DCS scores range from 0 to 100 (>37.5 indicates greater decisional conflict). Demographic characteristics and DCS scores were compared between subgroups, using descriptive and chi-square statistics. Participants commented on MaPGAS uncertainty, and their comments were evaluated and thematically analyzed. Results: Responses from 264 participants were analyzed: mean age 29 years; 64% (n = 168) trans men, 80% (n = 210) White, 78% (n = 206) nonrural, 45% (n = 120) privately insured, 56% (n = 148) had 4 or more years of college, 23% (n = 84) considering metoidioplasty, 24% (n = 87) considering phalloplasty, and 26% (n = 93) considering metoidioplasty and phalloplasty. DCS total scores were significantly higher (39.8; P < 0.001) among those considering both MaPGAS options, as were mean ratings on the Uncertainty subscale [64.1 (SD 25.5; P < 0.001)]. Concerns surrounding complications were the top factor contributing to uncertainty and decisional conflict. Conclusions: In a cross-sectional national sample of individuals seeking MaPGAS, decisional uncertainty was the highest for those considering both MaPGAS options compared with metoidioplasty or phalloplasty alone. This suggests this cohort would benefit from focused decision support.

2.
Chest ; 159(3): e163-e166, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33678286

RESUMO

CASE PRESENTATION: A 50-year-old woman was initially seen in 2016 for sleep disorders consultation, referred by Neurology because of progressive cerebellar ataxia syndrome with possible autonomic involvement and sleep-disordered breathing described as having stridorous sounds during her sleep. She had initially presented to Neurology because of issues with balance, and she had frequent falls at home. In 2016, her speech was clear, and she was able to ambulate steadily with a cane. She underwent a diagnostic polysomnogram that did not demonstrate clinically significant sleep apnea. However, the study demonstrated rapid eye movement (REM) sleep without atonia in 62% of REM epochs (normal, up to 27%) and a soft inspiratory stridor during non-REM and REM sleep. The patient was lost to follow-up until she presented to us for reevaluation 3 years later. In the interim, she had been diagnosed with multiple system atrophy-cerebellar type (MSA-C) at another health-care institution.


Assuntos
Ataxia Cerebelar , Atrofia de Múltiplos Sistemas , Cuidados Paliativos/métodos , Sons Respiratórios , Síndromes da Apneia do Sono , Disfunção da Prega Vocal , Doenças do Sistema Nervoso Autônomo/diagnóstico , Doenças do Sistema Nervoso Autônomo/etiologia , Doenças do Sistema Nervoso Autônomo/fisiopatologia , Ataxia Cerebelar/etiologia , Ataxia Cerebelar/fisiopatologia , Deambulação com Auxílio , Progressão da Doença , Evolução Fatal , Feminino , Humanos , Pessoa de Meia-Idade , Atrofia de Múltiplos Sistemas/diagnóstico , Atrofia de Múltiplos Sistemas/fisiopatologia , Polissonografia/métodos , Respiração com Pressão Positiva/métodos , Equilíbrio Postural , Prognóstico , Sons Respiratórios/diagnóstico , Sons Respiratórios/etiologia , Sons Respiratórios/fisiopatologia , Síndromes da Apneia do Sono/diagnóstico , Síndromes da Apneia do Sono/etiologia , Síndromes da Apneia do Sono/terapia , Disfunção da Prega Vocal/etiologia , Disfunção da Prega Vocal/fisiopatologia
3.
Am J Respir Crit Care Med ; 198(11): 1367-1374, 2018 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-30601674

RESUMO

BACKGROUND: Mounting evidence indicates that out-of-pocket costs for prescription medications, particularly among low- and middle-income patients with chronic diseases, are imposing financial burden, reducing medication adherence, and worsening health outcomes. This problem is exacerbated by a paucity of generic alternatives for prevalent lung diseases, such as asthma and chronic obstructive pulmonary disease, as well as high-cost medicines for rare diseases, such as cystic fibrosis. Affordability and access challenges are especially salient in the United States, as citizens of many other countries pay lower prices for and have greater access to prescription medications. METHODS: The American Thoracic Society convened a multidisciplinary committee comprising experts in health policy pharmacoeconomics, behavioral sciences, and clinical care, along with individuals providing industry and patient perspectives. The report and its recommendation were iteratively developed over a year of in-person, telephonic, and electronic deliberation. RESULTS: The committee unanimously recommended the establishment of a publicly funded, politically independent, impartial entity to systematically draft evidence-based pharmaceutical policy recommendations. The goal of this entity would be to generate evidence and action steps to ensure people have equitable and affordable access to prescription medications, to maximize the value of public and private pharmaceutical expenditures on health, to support novel drug development within a market-based economy, and to preserve clinician and patient choice regarding personalized treatment. An immediate priority is to examine the evidence and make recommendations regarding the need to have essential medicines with established clinical benefit from each drug class in all Tier 1 formularies and propose recommendations to reduce barriers to timely generic drug availability. CONCLUSIONS: By making explicit, evidence-based recommendations, the entity can support the establishment of coherent national policies that expand access to affordable medications, improve the health of patients with chronic disease, and optimize the use of public and private resources.


Assuntos
Custos e Análise de Custo/economia , Gastos em Saúde , Honorários por Prescrição de Medicamentos , Transtornos Respiratórios/tratamento farmacológico , Transtornos Respiratórios/economia , Doença Crônica , Política de Saúde , Humanos , Sociedades Médicas , Estados Unidos
4.
Clin Chest Med ; 31(2): 249-70, 2010 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-20488285

RESUMO

A wide variety of mechanisms can lead to the hypoventilation associated with various medical disorders, including derangements in central ventilatory control, mechanical impediments to breathing, and abnormalities in gas exchange leading to increased dead space ventilation. The pathogenesis of hypercapnia in obesity hypoventilation syndrome remains somewhat obscure, although in many patients comorbid obstructive sleep apnea appears to play an important role. Hypoventilation in neurologic or neuromuscular disorders is primarily explained by weakness of respiratory muscles, although some central nervous system diseases may affect control of breathing. In other chest wall disorders, obstructive airways disease, and cystic fibrosis, much of the pathogenesis is explained by mechanical impediments to breathing, but an element of increased dead space ventilation also often occurs. Central alveolar hypoventilation syndrome involves a genetically determined defect in central respiratory control. Treatment in all of these disorders involves coordinated management of the primary disorder (when possible) and, increasingly, the use of noninvasive positive pressure ventilation.


Assuntos
Síndrome de Hipoventilação por Obesidade/fisiopatologia , Músculos Respiratórios/fisiologia , Humanos , Hipercapnia/fisiopatologia , Doenças Neuromusculares/fisiopatologia , Obesidade/fisiopatologia , Troca Gasosa Pulmonar , Apneia Obstrutiva do Sono/fisiopatologia , Sono REM/fisiologia , Volume de Ventilação Pulmonar/fisiologia , Vasoconstrição/fisiologia , Capacidade Vital
5.
Chest ; 123(6): 1887-94, 2003 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-12796164

RESUMO

STUDY OBJECTIVE: Expert consensus recommends testing pleural fluid for pH to assist the selection of patients with malignant pleural effusions for pleurodesis. Although published studies report an association between pleural fluid pH and patient outcomes after pleurodesis, clinicians have no definitive information on how to use pH to select patients for pleurodesis. Thus, we quantitatively assessed different methods for deriving likelihood ratios from pleural fluid pH and evaluated the potential role of pH in selecting patients for pleurodesis. DATA SOURCES: MEDLINE, systematic reviews, article reference lists, and contact with primary authors. STUDY SELECTION: Studies that assessed the impact of pleural fluid pH on survival and pleurodesis failure rates among patients with malignant pleural effusions. DATA EXTRACTION: Primary authors provided their data in electronic spreadsheets. DATA SYNTHESIS: Retrieved data sets included survival and pleurodesis failure rates for 417 patients and 433 patients, respectively. Binary, multilevel, and continuous likelihood ratios were calculated to estimate the likelihood of death within 3 months of pleurodesis or pleurodesis failure rates. Values for the likelihood ratios were compared for each of the three strategies, and relative clinical and statistical significance were assessed. Pleural fluid pH had marginal performance for identifying patients with < 3-month anticipated survival; binary likelihood ratios provided as much information as the multilevel and continuous strategies. Likelihood ratios for identifying patients likely to fail pleurodesis were clinically useful. Continuous likelihood ratios provided statistically more information as compared with the multilevel and binary strategies. CONCLUSIONS: Pleural fluid pH has marginal value for estimating death within 3 months of pleurodesis, and binary likelihood ratios (cut point

Assuntos
Derrame Pleural Maligno/diagnóstico , Derrame Pleural/química , Interpretação Estatística de Dados , Humanos , Concentração de Íons de Hidrogênio , Funções Verossimilhança , Seleção de Pacientes , Derrame Pleural Maligno/mortalidade , Pleurodese , Falha de Tratamento
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