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BACKGROUND: A growing body of evidence suggests that use of race terms in spirometry reference equations underestimates disease burden in Black populations, which may lead to disparities in pulmonary disease outcomes. Data on asthma-specific health consequences of using race-adjusted spirometry are lacking. METHODS: We performed a secondary analysis of 163 children from two observational asthma studies to determine the frequencies of participants with ppFEV1 < 80% (consistent with uncontrolled asthma) or ppFEV1 ≥ 80% using race-specific (GLI-African American or Caucasian) vs. race-neutral (GLI-Global) spirometry and their alignment with indicators of asthma control (Asthma Control Test™, ACT). Comparisons of mean ppFEV1 values were conducted using Wilcoxon matched-pairs signed-rank tests. Two group comparisons were conducted using Wilcoxon rank-sum tests. RESULTS: Data from 163 children (100 Black, 63 White) were analyzed. Mean ppFEV1 was 95.4% (SD 15.8) using race-specific spirometry and 90.4% (16.3) using race-neutral spirometry (p < 0.0001). Among 54 Black children with uncontrolled asthma (ACT ≤ 19), 20% had ppFEV1 < 80% using race-specific spirometry compared to 40% using race-neutral spirometry. In Black children with controlled asthma (ACT > 19), 87% had ppFEV1 ≥ 80% using race-specific compared to 67% using race-neutral spirometry. Children whose ppFEV1 changed to ≤ 80% with race-neutral spirometry had lower FEV1/FVC compared to those whose ppFEV1 remained ≥ 80% [0.83 (0.07) vs. 0.77 (0.05), respectively; p = 0.04], suggesting greater airway obstruction. Minimal changes in alignment of ppFEV1 with ACT score were observed for White children. CONCLUSIONS: Use of race-specific reference equations in Black children may increase the risk of inappropriately labeling asthma as controlled.
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Obstrução das Vias Respiratórias , Asma , Adolescente , Criança , Humanos , Obstrução das Vias Respiratórias/diagnóstico , Obstrução das Vias Respiratórias/epidemiologia , Obstrução das Vias Respiratórias/etnologia , Asma/diagnóstico , Asma/epidemiologia , Asma/etnologia , Asma/terapia , Negro ou Afro-Americano , Efeitos Psicossociais da Doença , Espirometria/normas , Estudos Observacionais como Assunto , BrancosRESUMO
OBJECTIVE: The purpose of this study was to investigate the extent to which adolescent asthma management self-efficacy, outcome expectations, and asthma responsibility were associated with asthma control and quality-of-life. Adolescent self-efficacy and outcome expectations are important components of social cognitive theory, which guided this research. METHODS: English- and Spanish-speaking adolescents ages 11-17 with persistent asthma were recruited at four pediatric clinics. Adolescents were interviewed and parents completed questionnaires. Multiple linear regression was used to analyze the data. RESULTS: Three hundred and fifty-nine adolescents were recruited. Older adolescent age, male gender, and higher adolescent asthma management self-efficacy were significantly associated with higher adolescent responsibility; outcome expectations were not significantly associated with responsibility. Adolescent ratings of their own responsibility were higher than parent ratings of their child's responsibility for almost all asthma management tasks. Adolescents with higher reported asthma management self-efficacy were significantly more likely to have better quality-of-life and controlled asthma. Adolescents with more positive outcome expectations were significantly more likely to have controlled asthma. Being Native American was associated with worse quality-of-life and asthma not being controlled. Being Black was associated with asthma not being controlled. CONCLUSIONS: Parents and providers should work to improve adolescent self-efficacy in managing their asthma because it is associated with asthma responsibility, asthma control, and quality-of-life. Providers need to especially work with Native American and Black adolescents to improve quality-of-life and asthma control.
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Asma , Criança , Humanos , Masculino , Adolescente , Asma/psicologia , Autoeficácia , Pais , Inquéritos e Questionários , Qualidade de VidaRESUMO
OBJECTIVE: We examined how an asthma question prompt list with video intervention influenced discussion of and provider education about asthma triggers. METHODS: English or Spanish-speaking adolescents ages 11-17 with persistent asthma and their caregivers were enrolled from four pediatric clinics. Adolescents were randomized to the intervention or usual care groups. Adolescents in the intervention group watched the video on an iPad and then completed a one-page asthma question prompt list before their visits. All visits were audio-recorded. Generalized Estimating Equations were used to predict the number of trigger areas discussed and the number of areas providers educated adolescents about during visits. RESULTS: Forty providers and 359 patients participated. Triggers were discussed during 89% of intervention group visits and 81% of usual care visits; providers educated adolescents about triggers during 59% of intervention group visits and 46% of usual care visits. More triggers were significantly more likely to be discussed and providers educated about more trigger areas during visits of adolescents in the intervention group and when adolescents asked one or more questions during visits. More trigger areas were significantly more likely to be discussed if the adolescent was White and male. Providers were significantly more likely to educate adolescents whose family spoke Spanish at home about more trigger areas than adolescents who spoke English at home. CONCLUSIONS: More trigger areas were significantly more likely to be discussed and providers educated about more trigger areas during visits of adolescents who received the intervention and when adolescents asked one or more questions.
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Asma/fisiopatologia , Comunicação , Educação de Pacientes como Assunto/organização & administração , Relações Profissional-Paciente , Adolescente , Cuidadores , Criança , Feminino , Humanos , Idioma , Masculino , Gravidade do Paciente , Fatores SociodemográficosRESUMO
In patients with sickle cell disease (SCD) and diabetes mellitus (DM), hemoglobin A1c (HbA1c ) is unreliable and the American Diabetes Association recommends monitoring long-term glycemia by measuring serum glucose, but use of serum fructosamine (SF), a measurement independent of red cell lifespan, has been reported. SF as a screen for DM in SCD, however, is not standardized and its relationship to serum glucose has not been validated. Further, screening for DM was not adequately addressed in the 2014 National Heart, Lung, and Blood Institute (NHLBI) guidelines for SCD management. Blood transfusions, an important treatment for some patients with SCD, can also impact HbA1c . We present a case of a patient with SCD and cystic fibrosis-related diabetes on monthly chronic transfusions therapy (CTT) who had well-correlated "steady state" HbA1c and SF levels over time, suggesting for the first time these markers may actually be useful when following long-term glycemic control in patients with SCD on CTT programs.
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Anemia Falciforme/sangue , Biomarcadores/sangue , Transfusão de Sangue/métodos , Fibrose Cística/sangue , Diabetes Mellitus/sangue , Frutosamina/sangue , Hemoglobinas Glicadas/análise , Adolescente , Anemia Falciforme/complicações , Anemia Falciforme/terapia , Glicemia/análise , Fibrose Cística/complicações , Fibrose Cística/terapia , Diabetes Mellitus/fisiopatologia , Diabetes Mellitus/terapia , Feminino , Humanos , PrognósticoRESUMO
Introduction: Electronic nicotine delivery systems (ENDS) use is on the rise in the adolescent and young adult populations, especially in the wake of sweet flavored ENDS solutions and youth-targeted marketing. While the extent of effect of ENDS use and aerosolized flavorings on airway epithelium is not known, there remains significant concern that use of ENDS adversely affects airway epithelial function, particularly in populations with asthma.Case Study: In this case series, we review two cases of adolescents with history of recent and past ENDS use and asthma who required veno-venous extracorporeal membrane oxygenation (VV-ECMO) for status asthmaticus in the year 2018.Results: Both patients experienced hypercarbic respiratory failure requiring VV-ECMO secondary to their status asthmaticus, with slow recovery on extensive bronchodilator and steroid regimens. They both recovered back to respiratory baseline and were counseled extensively on cessation of ENDS use.Conclusion: While direct causation by exposure to ENDS cannot be determined, exposure likely contributed to symptoms. Based on the severity of these cases and their potential relationship with ENDS use, we advocate for increased physician screening of adolescents for ENDS use, patient and parent education on the risks of use, and family cessation counseling.
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Sistemas Eletrônicos de Liberação de Nicotina , Oxigenação por Membrana Extracorpórea , Insuficiência Respiratória/etiologia , Estado Asmático/etiologia , Vaping/efeitos adversos , Adolescente , Feminino , Humanos , Masculino , Insuficiência Respiratória/diagnóstico , Insuficiência Respiratória/terapia , Índice de Gravidade de Doença , Estado Asmático/diagnóstico , Estado Asmático/terapia , Resultado do TratamentoRESUMO
Objective: This study examined whether youth who received an asthma question prompt list/video intervention were more likely to have their asthma controlled and better quality-of-life at 12 months than youth who received usual care.Methods: English or Spanish-speaking youth ages 11-17 were enrolled and randomized to intervention or usual care. The 185 youth and parents in the intervention group watched the video on an iPad and then received a one-page asthma question prompt list to complete before their visits. One hundred seventy-four received usual care. Baseline and 6-month visits were audio-tape recorded. Generalized Estimating Equations were used to predict a youth's quality-of-life and whether asthma was controlled at 12 months.Results: Asthma control and quality-of-life improved significantly from baseline to 12-month follow-up in both intervention and usual care groups. Baseline asthma control and quality-of-life were significantly associated with 12-month asthma control and quality-of-life, respectively. Adolescents on a control medication at baseline were significantly more likely to have their asthma controlled at 12 months.Conclusions: Asthma control and quality-of-life did not improve significantly more in the intervention group than in the usual care group.
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Asma/terapia , Educação de Pacientes como Assunto/métodos , Qualidade de Vida , Autogestão/educação , Adolescente , Adulto , Asma/complicações , Asma/psicologia , Recursos Audiovisuais , Criança , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Teoria Psicológica , Autoeficácia , Resultado do Tratamento , Gravação em VídeoRESUMO
BACKGROUND: Many adolescents do not obtain the maximum benefit from their asthma medications. Improving patient-provider communication may improve adolescents' asthma knowledge, adherence, and clinical outcomes. OBJECTIVE: To determine how a question prompt list and educational video intervention affect youth- and caregiver-reported medication adherence and self-reported medication problems. METHODS: Adolescents with persistent asthma (n = 359; 56.4% with moderate to severe asthma) and their caregivers were enrolled in a randomized controlled trial at 4 pediatric clinics. Intervention group families received a question prompt list and watched a short video before seeing the provider; control families received usual care. Youth- and caregiver-reported medication adherence was measured with a Visual Analog Scale, ranging from 0 to 100. Generalized estimating equations were used to determine how the intervention and covariates were associated with medication adherence and reported problems at 12 months. RESULTS: The intervention was not a significant predictor of medication adherence at 12 months. Higher caregiver education was associated with higher youth-reported adherence (ß = 1.1; 95% CI = 0.1, 2.1; P = 0.036) and caregiver-reported adherence (ß = 1.2; 95% CI = 0.3, 2.0; P = 0.006). The intervention was associated with fewer caregiver-reported problems at 12 months (ß = -0.32; 95% CI = -0.48, -0.16; P < 0.001). CONCLUSIONS AND RELEVANCE: A question prompt list and educational video decreased the number of caregiver-reported medication problems, but did not significantly affect medication adherence. Further research is needed to develop more effective interventions to improve medication adherence and outcomes.
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Antiasmáticos/uso terapêutico , Asma/tratamento farmacológico , Adesão à Medicação/estatística & dados numéricos , Educação de Pacientes como Assunto/métodos , Terapia Assistida por Computador/métodos , Webcasts como Assunto , Adolescente , Antiasmáticos/administração & dosagem , Cuidadores , Criança , Feminino , Humanos , Educação de Pacientes como Assunto/estatística & dados numéricos , Autorrelato , Inquéritos e Questionários , Terapia Assistida por Computador/estatística & dados numéricosRESUMO
OBJECTIVES: The purpose of this study was to: (a) describe the types of medication problems/concerns youth with asthma and their caregivers reported and (b) examine the association between sociodemographic characteristics and youth and caregiver reported medication problems/concerns. METHODS: English- and Spanish-speaking youth ages 11-17 with persistent asthma were recruited at four pediatric clinics. Youth were interviewed and caregivers completed questionnaires about reported asthma medication concerns/problems. Multiple logistic regression was used to analyze the data. RESULTS: Three hundred and fifty-nine youth were recruited. Eighty percent of youth and 70% of caregivers reported one or more problems in using asthma medications. The most commonly reported problems by youth were: (a) hard to remember when to take the asthma medication (54%) and (b) hard to use asthma medication at school (34%). Younger children were significantly more likely to report difficulty in understanding their asthma medication's directions and difficulty reading the print on the medication's package. Caregivers' top-reported problem was that it is hard for their child to remember to take their asthma medications (49%). Caregivers without Medicaid were significantly more likely to express difficulty paying for their child's asthma medications. CONCLUSIONS: Difficulty remembering to take asthma medication was a significant problem for youth and their caregivers. Providers should work with youth and their caregivers to identify asthma medication problems and discuss strategies to address those problems.
Assuntos
Antiasmáticos/administração & dosagem , Asma/tratamento farmacológico , Cuidadores/estatística & dados numéricos , Adesão à Medicação/estatística & dados numéricos , Inquéritos e Questionários , Administração por Inalação , Adolescente , Comportamento do Adolescente , Adulto , Asma/diagnóstico , Criança , Escolaridade , Etnicidade/estatística & dados numéricos , Feminino , Humanos , Relações Interpessoais , Entrevistas como Assunto , Modelos Logísticos , Masculino , Medicaid/economia , Medicaid/estatística & dados numéricos , Análise Multivariada , Nebulizadores e Vaporizadores/estatística & dados numéricos , Avaliação das Necessidades , Medição de Risco , Fatores Socioeconômicos , Estados UnidosRESUMO
BACKGROUND: The Asthma Control Test (ACT) is widely used to assess asthma control, yet the validity and reliability of the test have not been specifically evaluated in adolescents or African-Americans. We conducted a prospective psychometric study of the ACT in African-American (AA) and non-African-American (nAA) adolescents with persistent asthma, with emphasis on the clinical utility of the test for medical decision making. METHODS: Participants completed the ACT and performed spirometry. A physician conducted a guidelines-based assessment of asthma control, blinded to the ACT score. Study procedures were repeated 6-8 weeks later. The ACT-based asthma control assessment was compared to physician assessment. RESULTS: For baseline and follow-up visits, internal consistency, as measured using Cronbach's alpha, was 0.80 and 0.81 in AA teens and 0.80 and 0.83 in nAA teens. Intraclass correlation coefficients were 0.59 and 0.76 in AA and nAA teens, respectively, with stable asthma control over time. Agreement between ACT and physician assessment was moderate in AA teens and fair in nAA teens. An ACT score of ≤19 showed reduced sensitivity for not well controlled asthma in both groups, while a score of ≤21 had the greatest area under the ROC curve. ACT scores were marginally responsive to change in control status. CONCLUSIONS: Concerns for the ACT's ability to detect uncontrolled asthma in adolescents emphasizes the need for a more comprehensive evaluation of asthma control in clinical settings. A higher threshold ACT score to define not well controlled asthma may be needed if the ACT is to be used for medical decision making. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02671643 , NCT02662413 .
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Asma/diagnóstico , Asma/epidemiologia , Negro ou Afro-Americano , Espirometria/normas , Adolescente , Fatores Etários , Asma/fisiopatologia , Criança , Feminino , Seguimentos , Humanos , Masculino , Estudos Prospectivos , Reprodutibilidade dos Testes , Método Simples-Cego , Espirometria/métodos , Inquéritos e Questionários/normas , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Many factors affect youth adherence to asthma medications. Better understanding of the relationship between problems reported by youth in using asthma medications, self-efficacy, outcome expectations, and adherence is needed. OBJECTIVE: The study examined the relationship between youth and caregiver problems in using asthma medications, asthma management self-efficacy, outcome expectations, and youth- and caregiver-reported adherence to asthma controller medications. METHODS: Adolescents with persistent asthma and their caregivers were recruited at 4 pediatric practices. Youth were interviewed after their medical visit while caregivers completed a questionnaire. Multivariable linear regression was used to analyze the data. RESULTS: Of 359 participating youth, 319 were on controller medications. Youth reported 60% average adherence, whereas caregivers reported 69%. Youth who reported difficulty using their inhaler correctly and youth who reported difficulty remembering to take their medications were significantly less likely to be adherent. Caregivers who reported that it was hard to remember when to give the asthma medications were significantly less likely to report their child being adherent. Both youth and caregivers with higher outcome expectations were significantly more likely to self-report being adherent. CONCLUSIONS: Pharmacists and other health care providers should consider asking youth and caregivers about problems in using asthma medications, self-efficacy in managing asthma, and outcome expectations for following treatment regimens, so that they can help youth overcome difficulties they might have in managing their asthma.
Assuntos
Antiasmáticos/uso terapêutico , Asma/tratamento farmacológico , Adesão à Medicação/estatística & dados numéricos , Adolescente , Cuidadores , Criança , Feminino , Humanos , Masculino , Nebulizadores e Vaporizadores , Autoeficácia , Autorrelato , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: Our objective was to develop a series of short educational videos for teens and parents to watch before pediatric visits to motivate teens to be more actively involved during their visits. METHODS: The development of the short educational videos was theoretically guided by Social Cognitive Theory. First we conducted four focus groups with teens (ages 11 to 17) with asthma, four focus groups with the teens' parents, and seven focus groups with pediatric providers from four clinics. The research team, which included two teens with asthma and their parents, analyzed the focus group transcripts for themes and then developed the initial video script. Next, a visual storyboard was reviewed by focus groups with parents and four with teens to identify areas of the script for improvement. The English videos were then produced. Focus groups with Hispanic parents and teens were then conducted for advice on how to modify the videos to make a more culturally appropriate Spanish version. RESULTS: Based on focus group results, teen newscasters narrate six one- to two-minute videos with different themes: (a) how to get mom off your back, (b) asthma triggers, (c) staying active with asthma, (d) tracking asthma symptoms, (e) how to talk to your doctor and (f) having confidence with asthma. Each video clip has three key messages and emphasizes how teens should discuss these messages with their providers. CONCLUSIONS: Teens, parents, and providers gave us excellent insight into developing videos to increase teen involvement during medical visits.
Assuntos
Asma/tratamento farmacológico , Motivação , Pais , Educação de Pacientes como Assunto/métodos , Participação do Paciente/métodos , Adolescente , Asma/psicologia , Asma/terapia , Criança , Exercício Físico , Feminino , Humanos , Idioma , Masculino , Adesão à Medicação , Relações Pais-Filho , Participação do Paciente/psicologia , Relações Profissional-Paciente , Grupos RaciaisRESUMO
Asthma is the most common chronic disease in children, affecting an estimated 6.1 million children in the United States. SARS-CoV2 had a significant impact on asthma exacerbations and healthcare utilization of patients with asthma in 2021. Additionally, studies in 2021 influenced the field of asthma with improvements in diagnostic testing and monitoring, treatment of severe exacerbations, social determinants of health, and evaluation of medical costs. This article is part of our 2021 "Year in Review" series, in which we summarize publications in major pulmonary topics, in the context of selected literature from other journals relevant to our discipline.
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Asma , COVID-19 , Pneumologia , Criança , Humanos , Asma/epidemiologia , Asma/terapia , RNA Viral , SARS-CoV-2 , Estados Unidos/epidemiologiaRESUMO
In 2022, new research studies influenced the field of pediatric asthma with improvements in diagnosis and evaluation; new treatment options including biologic therapies; changes in risk factors for asthma; and increased discussion about the impact of social determinants of health on asthma. Additionally, three years after the start of the COVID-19 pandemic, we continue to see the impact of SARS-CoV-2 virus on pediatric asthma care. In this review article, we summarize the significant findings from publications in Pediatric Pulmonology and other relevant journals from the last year. We hope this review will provide new insight within the field of pediatric asthma, as well as guidance for implementation into clinical practice.
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Asma , COVID-19 , Pneumologia , Humanos , Criança , SARS-CoV-2 , Pandemias , Asma/diagnóstico , Asma/epidemiologia , Asma/terapiaRESUMO
OBJECTIVE: The aim of this study was to look at a cohort of adolescents who were already enrolled in a randomized controlled trial to see (1) how demographics were associated with hurricane impact, and (2) how hurricane impact was associated with reported asthma quality of life. METHODS: One hundred fifty-one adolescents ages 11-17 and their parents enrolled in a randomized controlled trial at 2 sites in southeastern North Carolina completed questions about asthma quality of life, demographics, and the impact of Hurricane Matthew. RESULTS: The most common effects of Hurricane Matthew were that the family's home was damaged or flooded (32.5%), the school was damaged or flooded (31.8%), and the home had mold or mildew as a result of flooding or damage (25.8%). Problems with access to care were more common for families whose adolescent was non-White (P = 0.04), on Medicaid (P = 0.05), or if the family spoke Spanish at home (P < 0.001). Being affected by the hurricane was negatively associated with asthma quality of life. CONCLUSIONS: Hurricane Matthew had significant impact on the health of adolescents with asthma in the affected region, especially in the most vulnerable populations. Providers should ensure that families of adolescents with asthma have a hurricane plan to mitigate impact on their children's health.
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Asma , Tempestades Ciclônicas , Criança , Humanos , Adolescente , North Carolina/epidemiologia , Qualidade de Vida , Inundações , Asma/epidemiologiaRESUMO
INTRODUCTION: Asthma care teams are well-positioned to help caregivers address financial toxicity in pediatric asthma care, although discussing cost can be challenging. We sought to characterize cost conversations in pediatric asthma specialty care. METHOD: We surveyed 45 caregivers of children aged 4-17 with asthma. Eligible caregivers reported costs concerns and had accompanied their child to a multisite asthma specialty practice in North Carolina. RESULTS: About one-third of caregivers reported a cost conversation (36%). Cost conversations were less common among caregivers whose child had public versus private health insurance (16% vs. 56%), who attended a telehealth versus in-person visit (6% vs. 52%), or who did not versus did want a conversation (19% vs. 77%, all p < .05). Common cost conversation topics were medications and equipment like spacers. DISCUSSION: Our findings suggest cost conversations may be relatively uncommon in pediatric asthma care, particularly for publicly insured patients and telehealth visits.
RESUMO
E-cigarette or vaping product use-associated lung injury (EVALI) is a severe pulmonary illness associated with the use of e-cigarettes or vaping products that was officially identified and named in 2019. This American Thoracic Society workshop was convened in 2021 to identify and prioritize research and regulatory needs to adequately respond to the EVALI outbreak and to prevent similar instances of disease associated with e-cigarette or vaping product use. An interdisciplinary group of 26 experts in adult and pediatric clinical care, public health, regulatory oversight, and toxicology were convened for the workshop. Four major topics were examined: 1) the public health and regulatory response to EVALI; 2) EVALI clinical care; 3) mechanisms contributing to EVALI; and 4) needed actions to address the health effects of EVALI. Oral presentations and group discussion were the primary modes used to identify top priorities for addressing EVALI. Initiatives including a national EVALI case registry and biorepository, integrated electronic medical record coding system, U.S. Food and Drug Administration regulation and enforcement of nicotine e-cigarette standards, regulatory authority over nontobacco-derived e-cigarettes, training in evaluating exogenous exposures, prospective clinical studies, standardized clinical follow-up assessments, ability to more readily study effects of cannabinoid e-cigarettes, and research to identify biomarkers of exposure and disease were identified as critical needs. These initiatives will require substantial federal investment as well as changes to regulatory policy. Overall, the workshop identified the need to address the root causes of EVALI to prevent future outbreaks. An integrated approach from multiple perspectives is required, including public health; clinical, basic, and translational research; regulators; and users of e-cigarettes. Improving the public health response to reduce the risk of another substantial disease-inducing event depends on coordinated actions to better understand the inhalational toxicity of these products, informing the public of the risks, and developing and enforcing regulatory standards for all e-cigarettes.
Assuntos
Sistemas Eletrônicos de Liberação de Nicotina , Lesão Pulmonar , Vaping , Adulto , Criança , Humanos , Estados Unidos/epidemiologia , Lesão Pulmonar/epidemiologia , Lesão Pulmonar/etiologia , Lesão Pulmonar/terapia , Estudos Prospectivos , Surtos de Doenças , Nicotina , Vaping/efeitos adversosRESUMO
One of the most compelling arguments for telemedicine is its potential to increase health care access by making care more affordable for patients and families, including those affected by asthma. This goal is critically important in the United States, where the high cost of asthma care is associated with nonadherence to preventive care regimens and suboptimal health outcomes. In this clinical commentary review, we draw from the literature and our own research to identify opportunities for and challenges to leveraging telemedicine to reduce the financial burden of asthma care. Our interviews with 42 families affected by asthma during the COVID-19 pandemic suggest that under favorable circumstances, telemedicine can meaningfully reduce costs, including those related to transportation and missed work, while offering high-quality care. However, families also identified ways in which telemedicine can increase costs. For example, some reported reduced access to support services and material resources such as medication samples, which they relied on to manage costs. In this way, our findings underscore the need for careful care coordination and communication in telemedicine. We conclude by discussing the 4Rs, a structured communication approach designed to support cost conversations, increase care coordination, and help families reduce asthma care cost burden.
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Asma , COVID-19 , Telemedicina , Asma/terapia , Estresse Financeiro , Humanos , Pandemias , Estados Unidos/epidemiologiaRESUMO
INTRODUCTION: Rubinstein-Taybi syndrome (RSTS) is a rare genetic syndrome caused primarily by a mutation in the CREBBP gene found on chromosome 16. Patients with RSTS are at greater risk for a variety of medical problems, including upper airway obstruction and aspiration. Childhood interstitial lung disease (ILD) thus far has not been definitively linked to RSTS. Here we present three patients with RSTS who developed ILD and discuss possible mechanisms by which a mutation in CREBBP may be involved in the development of ILD. METHODS: Routine hematoxylin and eosin staining was performed on lung biopsy tissue for histological analysis. Immunofluorescent staining was performed on lung biopsy tissue for markers of fibrosis, surfactant deficiency and histone acetylation. Cases 1 and 2 had standard clinical microarray analysis. Case 3 had whole exome sequencing. Bioinformatics analyses were performed to identify possible causative genes using ToppGene. RESULTS: Computed tomography images in all cases showed consolidated densities overlying ground glass opacities. Lung histopathology revealed accumulation of proteinaceous material within alveolar spaces, evidence of fibrosis, and increased alveolar macrophages. Immunofluorescent staining showed increase in surfactant protein C staining, patchy areas of increased anti-smooth muscle antibody staining, and increased staining for acetylated histone 2 and histone 3 lysine 9. DISCUSSION: Clinical characteristics, radiographic imaging, lung histopathology, and immunofluorescent staining results shared by all cases demonstrated findings consistent with ILD. Immunofluorescent staining suggests two possible mechanisms for the development of ILD: abnormal surfactant metabolism and/or persistent activation of myofibroblasts. These two pathways could be related to dysfunctional CREBBP protein.
Assuntos
Doenças Pulmonares Intersticiais , Síndrome de Rubinstein-Taybi , Proteína de Ligação a CREB/genética , Criança , Humanos , Doenças Pulmonares Intersticiais/etiologia , Doenças Pulmonares Intersticiais/genética , Mutação , Síndrome de Rubinstein-Taybi/complicações , Síndrome de Rubinstein-Taybi/diagnóstico , Síndrome de Rubinstein-Taybi/genética , Sequenciamento do ExomaRESUMO
BACKGROUND: Pulmonary function testing (eg, spirometry) is recommended by the National Heart, Lung, and Blood Institute as part of basic asthma management. Previous research has shown that spirometry is feasible in primary care settings. OBJECTIVES: In this retrospective study, we sought to describe the proportion of spirometries meeting American Thoracic Society (ATS) and European Respiratory Society (ERS) quality criteria in children with asthma evaluated in North Carolina primary care pediatric clinics and to characterize predictors of spirometry that meets ATS/ERS quality criteria. METHODS: Medical records and spirometries from January 1, 2001, to August 1, 2009, were reviewed and analyzed from children enrolled in a larger asthma study that focused on communication between physicians, children, and caregivers. Children were eligible for the larger study if they were between the ages of 8 and 16 years and had received a previous diagnosis of persistent asthma. Children were enrolled from primary care pediatric practices. RESULTS: Spirometry was not acceptable, on the basis of ATS/ERS criteria, in 75% of cases. Approximately 19% of spirometries used incorrect or outdated predictive sets. CONCLUSIONS: More than three-quarters of spirometries in these primary care pediatric clinics were unacceptable. Changes or lack of changes in asthma management may be based on unacceptable spirometry. Additional education and training regarding accurate spirometry and interpretation are warranted.