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1.
J Med Internet Res ; 25: e41446, 2023 10 31.
Artigo em Inglês | MEDLINE | ID: mdl-37906223

RESUMO

BACKGROUND: Decision-making and strategies to improve service delivery must be supported by reliable health data to generate consistent evidence on health status. The data quality management process must ensure the reliability of collected data. Consequently, various methodologies to improve the quality of services are applied in the health field. At the same time, scientific research is constantly evolving to improve data quality through better reproducibility and empowerment of researchers and offers patient groups tools for secured data sharing and privacy compliance. OBJECTIVE: Through an integrative literature review, the aim of this work was to identify and evaluate digital health technology interventions designed to support the conducting of health research based on data quality. METHODS: A search was conducted in 6 electronic scientific databases in January 2022: PubMed, SCOPUS, Web of Science, Institute of Electrical and Electronics Engineers Digital Library, Cumulative Index of Nursing and Allied Health Literature, and Latin American and Caribbean Health Sciences Literature. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses checklist and flowchart were used to visualize the search strategy results in the databases. RESULTS: After analyzing and extracting the outcomes of interest, 33 papers were included in the review. The studies covered the period of 2017-2021 and were conducted in 22 countries. Key findings revealed variability and a lack of consensus in assessing data quality domains and metrics. Data quality factors included the research environment, application time, and development steps. Strategies for improving data quality involved using business intelligence models, statistical analyses, data mining techniques, and qualitative approaches. CONCLUSIONS: The main barriers to health data quality are technical, motivational, economical, political, legal, ethical, organizational, human resources, and methodological. The data quality process and techniques, from precollection to gathering, postcollection, and analysis, are critical for the final result of a study or the quality of processes and decision-making in a health care organization. The findings highlight the need for standardized practices and collaborative efforts to enhance data quality in health research. Finally, context guides decisions regarding data quality strategies and techniques. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1101/2022.05.31.22275804.


Assuntos
Benchmarking , Confiabilidade dos Dados , Humanos , Reprodutibilidade dos Testes , Tecnologia Biomédica , Lista de Checagem
4.
J Pediatr ; 232: 87-94.e4, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33417919

RESUMO

OBJECTIVE: To compare in-hospital outcomes after umbilical cord milking vs delayed cord clamping among infants <29 weeks of gestation. STUDY DESIGN: Multicenter retrospective study of infants born <29 weeks of gestation from 2016 to 2018 without congenital anomalies who received active treatment at delivery and were exposed to umbilical cord milking or delayed cord clamping. The primary outcome was mortality or severe (grade III or IV) intraventricular hemorrhage (IVH) by 36 weeks of postmenstrual age (PMA). Secondary outcomes assessed at 36 weeks of PMA were mortality, severe IVH, any IVH or mortality, and a composite of mortality or major morbidity. Outcomes were assessed using multivariable regression, incorporating mortality risk factors identified a priori, confounders, and center. A prespecified, exploratory analysis evaluated severe IVH in 2 gestational age strata, 22-246/7 and 25-286/7 weeks. RESULTS: Among 1834 infants, 23.6% were exposed to umbilical cord milking and 76.4% to delayed cord clamping. The primary outcome, mortality or severe IVH, occurred in 21.1% of infants: 28.3% exposed to umbilical cord milking and 19.1% exposed to delayed cord clamping, with an aOR that was similar between groups (aOR 1.45, 95% CI 0.93, 2.26). Infants exposed to umbilical cord milking had higher odds of severe IVH (19.8% umbilical cord milking vs 11.8% delayed cord clamping, aOR 1.70 95% CI 1.20, 2.43), as did the 25-286/7 week stratum (14.8% umbilical cord milking vs 7.4% delayed cord clamping, aOR 1.89 95% CI 1.22, 2.95). Other secondary outcomes were similar between groups. CONCLUSIONS: This analysis of extremely preterm infants suggests that delayed cord clamping is the preferred practice for placental transfusion, as umbilical cord milking exposure was associated with an increase in the adverse outcome of severe IVH. TRIAL REGISTRATION: ClinicalTrials.gov: NCT00063063.


Assuntos
Hemorragia Cerebral Intraventricular/epidemiologia , Constrição , Mortalidade Hospitalar , Lactente Extremamente Prematuro , Cordão Umbilical , Feminino , Idade Gestacional , Humanos , Recém-Nascido , Masculino , Estudos Retrospectivos
5.
Ann Hepatol ; 19(4): 437-445, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32139262

RESUMO

INTRODUCTION AND OBJECTIVES: The prevalence of alcohol, tobacco, and coffee use and association with liver health among North Americans with Chronic Hepatitis B (CHB) infection has not been well described. MATERIALS AND METHODS: The Hepatitis B Research Network includes an observational study of untreated CHB adults enrolled at 21 sites in the United States and Canada. Alcohol use was categorized as none, moderate, and at-risk based on the definition from the National Institute on Alcohol Abuse and Alcoholism; tobacco use as never, current and former; coffee use as none, 1-2 cups/day, and ≥3 cups/day. Linear regression and linear mixed models were used to associate lifestyle behaviors with ALT and FIB-4 values. RESULTS: 1330 participants met eligibility: 53% males, 71% Asian and the median age was 42 years (IQR: 34-52). Median ALT was 33U/L (IQR: 22-50), 37% had HBV DNA <103IU/mL, 71% were HBeAg negative, and 65% had a FIB-4 <1.45. At baseline, 8% of participants were at-risk alcohol drinkers, 11% were current smokers and 92% drank <3 cups of coffee/day. Current tobacco and 'at-risk' alcohol use, were significantly associated with elevated ALT levels in univariable analyses, however, these associations were not statistically significant when controlling for sociodemographic and HBV characteristics. CONCLUSIONS: In this large diverse cohort of untreated CHB participants, at-risk alcohol use, current tobacco use and limited coffee consumption did not have an association with high ALT and FIB-4 values. In contrast, significant associations were found between the frequency of these lifestyle behaviors and sociodemographic factors.


Assuntos
Consumo de Bebidas Alcoólicas/epidemiologia , Café , Hepatite B Crônica/epidemiologia , Cirrose Hepática/epidemiologia , Fumar Tabaco/epidemiologia , Adolescente , Adulto , África/etnologia , Idoso , Alanina Transaminase/sangue , Ásia/etnologia , Povo Asiático , População Negra , Canadá/epidemiologia , DNA Viral/sangue , Feminino , Antígenos E da Hepatite B/sangue , Hepatite B Crônica/sangue , Humanos , Cirrose Hepática/sangue , Masculino , Pessoa de Meia-Idade , Prevalência , Índice de Gravidade de Doença , Estados Unidos/epidemiologia , População Branca , Adulto Jovem
6.
Mem. Inst. Oswaldo Cruz ; 115: e190342, 2020. graf
Artigo em Inglês | LILACS | ID: biblio-1091239

RESUMO

BACKGROUND The five BRICS (Brazil, Russian, Indian, China, and South Africa) countries bear 49% of the world's tuberculosis (TB) burden and they are committed to ending tuberculosis. OBJECTIVES The aim of this paper is to map the scientific landscape related to TB research in BRICS countries. METHODS Were combined bibliometrics and social network analysis techniques to map the scientific publications related to TB produced by the BRICS. Was made a descriptive statistical data covering the full period of analysis (1993-2016) and the research networks were made for 2007-2016 (8,366 records). The bubble charts were generated by VantagePoint and the networks by the Gephi 0.9.1 software (Gephi Consortium 2010) from co-occurrence matrices produced in VantagePoint. The Fruchterman-Reingold algorithm provided the networks' layout. FINDINGS During the period 1993-2016, there were 38,315 peer-reviewed, among them, there were 11,018 (28.7%) articles related by one or more authors in a BRICS: India 38.7%; China 23.8%; South Africa 21.1%; Brazil 13.0%; and Russia 4.5% (The total was greater than 100% because our criterion was all papers with at least one author in a BRICS). Among the BRICS, there was greater interaction between India and South Africa and organisations in India and China had the highest productivity; however, South African organisations had more interaction with countries outside the BRICS. Publications by and about BRICS generally covered all research areas, especially those in India and China covered all research areas, although Brazil and South Africa prioritised infectious diseases, microbiology, and the respiratory system. MAIN CONCLUSIONS An overview of BRICS scientific publications and interactions highlighted the necessity to develop a BRICS TB research plan to increase efforts and funding to ensure that basic science research successfully translates into products and policies to help end the TB epidemic.


Assuntos
Humanos , Publicações Periódicas como Assunto/estatística & dados numéricos , Tuberculose , Bibliometria , Viés de Publicação , Pesquisa Biomédica/estatística & dados numéricos , África do Sul , Brasil , China , Federação Russa , Índia
7.
Ethn Dis ; 29(Suppl 1): 113-118, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30906158

RESUMO

While the vast majority of people receive their medical care in community primary and specialty care clinics, most clinical research is performed in academic tertiary care hospitals and hospital clinics. Practice-based research networks are most commonly collections of primary care practices that work together to ask and answer health questions for their patients and communities and are an integral part of the translational pathway from discovery to practice to community health. Community primary care practices are at the front line of health equity issues; equity in clinical care, equity in community health, equity in social determinants of health, and equity in health outcomes. Practice-based research networks can gather and combine data from dozens of communities, hundreds of practices and thousands of patients to address health equity and disparities across the full spectrum of community and public health to clinical and primary care. This article will briefly outline the history of PBRNs, types of PBRNs, locations, topics, and patient outcomes over the past 25 years. Current PBRN efforts to address health disparities and improve health equity will be described. New PBRN opportunities to address health disparities and approaches to advance implementation research for health equity in the practice and community will be described. Readers will be challenged to consider ways to engage practice-based research networks in their health equity efforts.


Assuntos
Redes Comunitárias , Equidade em Saúde , Ciência da Implementação , Pesquisa , Serviços de Saúde Comunitária , Humanos , Atenção Primária à Saúde , Saúde Pública
8.
Medicina (Ribeiräo Preto) ; 51(1): 29-54, jan.-mar., 2018.
Artigo em Português | LILACS | ID: biblio-980777

RESUMO

Modelo do estudo: Estudo transversal nos 32 centros participantes da Rede Nacional de Pesquisa Clínica (RNPC). Objetivos: Desenvolver e validar um questionário eletrônico capaz de medir o desempenho dos centros participantes da RNPC em uma auditoria de qualidade baseada nas Boas Práticas Clínicas (BPC). Avaliar a correlação do instrumento com o guia de inspeção em BPC disposto na Instrução Normativa nº 4, de 11/05/09 da ANVISA (IN4/ANVISA) e verificar, por meio do questionário desenvolvido, o desempenho dos centros participantes da RNPC, em relação ao atendimento a requisitos de um sistema de gestão da qualidade (SGQ). Métodos: Foi aplicado um questionário eletrônico, legitimado por uma validação de conteúdo. As questões foram agrupadas em três domínios, infraestrutura, estrutura organizacional e processos. Os dados foram pontuados de acordo com o cumprimento (1) ou não cumprimento (0) em BPC. As questões do questionário foram arbitrariamente correlacionadas aos itens da IN4, atribuído (0) ponto às questões conformes e (1) para não conforme. O índice de cumprimento para atendimento aos itens críticos e maiores (ICCM) foi calculado para cada domínio usando a equação ICCM = 1 * (Escore IN4) + valor total escore para dado domínio. As comparações foram feitas por teste de Kruskal-Wallis e teste de Spermann, considerando P valor < 0,05. Resultados: O instrumento representa aproximadamente 40% dos itens do roteiro de inspeção da IN4/ANVISA. A pontuação obtida com o questionário correlaciona-se significativamente ao escore correspondente à IN4/ANVISA (r=0,95, 0,89 a 0,98, IC95%, P<0.0001). A mediana do ICCM foi menor que 75% em todos os domínios estudados. Conclusões: O instrumento desenvolvido para medir o desempenho em BPC apresenta alta correlação com a IN4/ANVISA e poderia ser utilizado para auditoria interna de qualidade. A classificação para itens críticos e maiores definidas pela IN4/ANVISA mostrou-se muito restritiva e necessita ser adequada a realidade dos centros de pesquisa nacionais. (AU)


Study design: A transversal study that evaluated 32 Clinical research centers (CRC) of the National Clinical Research Network (Rede Nacional de Pesquisa Clínica/RNPC). Objectives: To develop and validate an electronic questionnaire to measure how CRC that are part of the RNPC performed in a quality audit based in Good Clinical Practice, to evaluate the correlation between our instrument and IN4/ANVISA guide and to access the quality of the CRC. Methods: An electronic questionnaire was applied and validated by contend valid index. The questions were divided into tree domains, infrastructure (I), organization structure (OS) and process (P). Data were scored according compliance (1) or non-compliance (0) with GCP. The questions of our questionnaires where arbitrary related to IN4/ANVISA guide and scored as non-conformity (1) or conformity (0). The indexes of compliance in critical and major items (ICCM) were calculated using the equation: ICCM = 1 * (IN4 score) + total score for the domain. The correlation of the two measurements above was done using Kruskal-Wallis and Spearman rank method, considering P <0.05. Results: The questionnaire represents about 40% of the IN$/ANVISA document. The score obtained with the questionnaire had a significant correlation to IN4/ ANVISA score (r=0.95, 0.89 to 0.98, CI95%, P<0.0001). The median ICCM was less than 75% for all domain studied. Conclusion: The instrument designed to measure performance GCP showed high correlation with IN4/ ANVISA guide and could be used to perform the internal quality audit of a CRC. The IN4/ANVISA guide showed to be very strict and might be necessary to review it and adequate to the reality of nationals centers. (AU)


Assuntos
Gestão da Qualidade Total , Academias e Institutos , Brasil
9.
J Patient Cent Res Rev ; 5(4): 267-275, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-31414012

RESUMO

PURPOSE: With one-half of Americans projected to be living with at least one chronic condition before 2020, enhancing patient self-management support (SMS) may improve health-related behaviors and clinical outcomes. Routine SMS implementation in primary care settings is difficult. Little is known about the practice conditions required for successful implementation of SMS tools. METHODS: Four primary care practice-based research networks (PBRNs) recruited 16 practices to participate in a boot camp translation process to adapt patient-centered SMS tools. Boot camp translation sessions were held over a 2-month period with 2 patients, a clinician, and a care manager from each practice. Qualitative case comparison and qualitative comparative analysis were used to examine practice conditions needed to implement SMS tools. The Consolidated Framework for Implementation Research guided data collection and analysis. RESULTS: Four different practice conditions affected the implementation of new SMS tools: functional practice organization; system that enables innovation and change; presence of a visible, activated champion; and synergy and alignment of SMS changes with other work. Qualitative comparative analysis suggested that it was necessary to have an enabling system, a visible champion, and synergy for a practice to at least minimally implement the SMS tools. Sufficiency testing, however, failed to show robust consistency to satisfactorily explain conditions required to implement new SMS tools. CONCLUSIONS: To implement tailored self-management support tools relatively rapidly, the minimum necessary conditions include a system that enables innovation and change, presence of a visible champion, and alignment of SMS changes with other work; yet, these alone are insufficient to ensure successful implementation.

10.
J Patient Cent Res Rev ; 5(4): 276-286, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-31414013

RESUMO

PURPOSE: Patient self-management is an inevitable part of the work of being a patient, and self-management support (SMS) has become increasingly important in chronic disease management. However, the majority of SMS resources available in the Agency for Healthcare Research and Quality SMS Resource Library were developed without explicit collaboration between clinicians and patients. METHODS: Translation of SMS tools derived from the library into primary care practices occurred utilizing boot camp translation in four different practice-based research networks (PBRNs). The typical model of boot camp translation was adapted for the purpose of the Implementing Networks' Self-management Tools Through Engaging Patients and Practices (INSTTEPP) study to develop SMS tools for implementation in the participating practices. Clinicians, clinic staff members, and patients were involved throughout the translation process. Existing resources from the SMS library were reviewed and adapted by each boot camp translation group to create tools unique to the patients in each network. RESULTS: There was no preexisting resource within the library that was deemed suitable for implementation without modification. Each network adapted tools from the SMS library to create different products. Common themes emerged from each network's translation process that highlighted the importance of patient engagement in the translation process. Boot camp translation, in conjunction with PBRNs, can be implemented to adapt SMS tools for implementation in member practices. CONCLUSIONS: Boot camp translation with a combination of practices and patients can be implemented to facilitate a process of local adaptation that improves the local applicability of SMS tools in primary care clinics.

12.
J Pediatr ; 179: 166-171, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27639529

RESUMO

OBJECTIVE: To determine if parents are receptive to discussing firearm safety with their pediatrician. STUDY DESIGN: Parents completed a self-administered paper survey during a pediatric office visit. Responses of those who confirmed and denied household firearms were compared using Fisher exact test. RESULTS: Between March 23 and May 21, 2015, 1246 of 1363 eligible parents (91.4%) completed the survey (22.6% African American, 79.5% at least some college education); 36% of respondents reported household firearms (owners). An additional 14.3% reported that their child was often in homes that contained firearms. Of the 447 owners, 25.1% reported ≥1 firearm was stored loaded, and 17.9% carried a firearm when leaving the house. Seventy-five percent of parents thought the pediatrician should advise about safe storage of firearms (owners 71.1%, others 77.5%), 16.9% disagreed (owners 21.9%, others 13.4%), and 8.2% were uncertain. Sixty-six percent thought pediatricians should ask about the presence of household firearms (owners 58.4%, others 70.9%), 23.2% disagreed (owners 31.5%, others 17.8%), and 10.5% were uncertain. Differences in parental opinions between owners and other parents were statistically significant. Twenty-two percent of owners would ignore advice to not have household firearms for safety reasons, and 13.9% would be offended by such advice. Only 12.8% of all parents reported a discussion about firearms with the pediatrician. CONCLUSIONS: Avoiding direct questioning about firearm ownership and extending the discussion about why and how to ensure safe storage of firearms to all parents may be an effective strategy to decrease firearm-related injuries and fatalities in children.


Assuntos
Comunicação , Armas de Fogo , Pais , Pediatria , Relações Profissional-Família , Segurança , Adulto , Criança , Feminino , Humanos , Masculino , Autorrelato
13.
Acta Vet. Brasilica ; 8(supl.2): 385-386, 2 jun. 2014.
Artigo em Português | VETINDEX | ID: biblio-1426850

RESUMO

O Programa de Pós-Graduação em Biotecnologia (PPGB) da Renorbio, em nível apenas de doutorado, tem por missão formar pessoal qualificado para o exercício da pesquisa e do magistério superior, assim como promover pesquisa articulada em Biotecnologia incentivando a interação, intercâmbio e transferência de tecnologias para o setor produtivo, depósito de patentes e fortalecer a interação e intercâmbio Universidade-Empresa. O PPGB agrega 36 diferentes Instituições da Região Nordeste e Estado do Espirito Santo, entre universidades e centros de pesquisa, sendo 12 nucleadoras (instituições que podem emitir diplomas). O PPGB possui 4 áreas de conhecimento da biotecnologia: agropecuária, industrial, recursos naturais e saúde. Na área de reprodução animal, vários projetos vem sendo desenvolvidos, inclusive com depósito de patente.


The Graduate Program in Biotechnology (PPGB) ­RENORBIO, in the doctoral level only, has the mission of training students to the research and university teaching and promote articulated research in Biotechnology encouraging interaction, exchange and transfer of technologies to the productive sector, patent deposit and strengthen interaction and exchanges University-Industry. The PPGB adds 36 different institutions (universities and research centers) in the Northeastern Region and Espirito Santo State, 12 of them are institutions that may issue diplomas. Four knowledge areas of biotechnology are developed: Agricultural, industrial, natural resources and health. In the animal reproduction area, several projects have been developed, including patent deposit


Assuntos
Biotecnologia , Pesquisa Científica e Desenvolvimento Tecnológico , Programas de Pós-Graduação em Saúde
15.
Acta Vet. bras. ; 8(supl.2): 385-386, 2014.
Artigo em Português | VETINDEX | ID: vti-22647

RESUMO

O Programa de Pós-Graduação em Biotecnologia (PPGB) da Renorbio, em nível apenas de doutorado, tem por missão formar pessoal qualificado para o exercício da pesquisa e do magistério superior, assim como promover pesquisa articulada em Biotecnologia incentivando a interação, intercâmbio e transferência de tecnologias para o setor produtivo, depósito de patentes e fortalecer a interação e intercâmbio Universidade-Empresa. O PPGB agrega 36 diferentes Instituições da Região Nordeste e Estado do Espirito Santo, entre universidades e centros de pesquisa, sendo 12 nucleadoras (instituições que podem emitir diplomas). O PPGB possui 4 áreas de conhecimento da biotecnologia: agropecuária, industrial, recursos naturais e saúde. Na área de reprodução animal, vários projetos vem sendo desenvolvidos, inclusive com depósito de patente.(AU)


The Graduate Program in Biotechnology (PPGB) RENORBIO, in the doctoral level only, has the mission of training students to the research and university teaching and promote articulated research in Biotechnology encouraging interaction, exchange and transfer of technologies to the productive sector, patent deposit and strengthen interaction and exchanges University-Industry. The PPGB adds 36 different institutions (universities and research centers) in the Northeastern Region and Espirito Santo State, 12 of them are institutions that may issue diplomas. Four knowledge areas of biotechnology are developed: Agricultural, industrial, natural resources and health. In the animal reproduction area, several projects have been developed, including patent deposit.(AU)


Assuntos
Educação de Pós-Graduação/história , Biotecnologia , Reprodução , Técnicas Reprodutivas/veterinária , Brasil
16.
J Pediatr ; 163(6): 1759-1763.e1, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24103921

RESUMO

OBJECTIVE: To provide weight-for-age, height-for-age, and body mass index-for-age growth reference standards for ambulatory, steroid-naïve males, ages 2-12 years, with Duchenne muscular dystrophy (DMD) and to compare these growth curves to the 2000 Centers for Disease Control and Prevention growth charts for boys, which serve as references of physical size and growth for the general male pediatric population in the US. STUDY DESIGN: Through a multi-state population-based surveillance of individuals with muscular dystrophy, a total of 1877 weight and 1544 height measurements ascertained during 1985-2010 from 513 males with DMD were obtained retrospectively from medical record review. Cases were classified as DMD if loss of ambulation occurred before the 12th birthday or, if younger than 12 years and still ambulating, the earliest symptoms of dystrophinopathy occurred before the 6th birthday. Each growth chart was constructed using 5 percentiles: 10th, 25th, 50th, 75th, and 90th. Smoothing procedures were applied in 2 stages to the irregular plots of the empirical percentile values. RESULTS: A set of growth curves, derived from a large cohort of male youth with DMD, are presented. These curves demonstrate that DMD males are shorter and tend to the extremes of weight and body mass index compared with the general male pediatric population in the US. CONCLUSION: Charts representing the pattern of growth in ambulatory, steroid-naïve males with DMD can facilitate monitoring of growth and early detection of unusual growth patterns. Use of these growth standards also will assist in monitoring responses to corticosteroid treatment.


Assuntos
Crescimento , Distrofia Muscular de Duchenne/fisiopatologia , Estatura , Índice de Massa Corporal , Peso Corporal , Criança , Pré-Escolar , Humanos , Masculino , Estudos Retrospectivos
17.
J Pediatr ; 163(6): 1705-1710.e1, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-24084106

RESUMO

OBJECTIVE: To prospectively characterize acute hyperammonemic episodes in patients with urea cycle disorders (UCDs) in terms of precipitating factors, treatments, and use of medical resources. STUDY DESIGN: This was a prospective, longitudinal observational study of hyperammonemic episodes in patients with UCD enrolled in the National Institutes of Health-sponsored Urea Cycle Disorders Consortium Longitudinal Study. An acute hyperammonemic event was defined as plasma ammonia level >100 µmol/L. Physician-reported data regarding the precipitating event and laboratory and clinical variables were recorded in a central database. RESULTS: In our study population, 128 patients with UCD experienced a total of 413 hyperammonemia events. Most patients experienced between 1 and 3 (65%) or between 4 and 6 (23%) hyperammonemia events since study inception, averaging fewer than 1 event/year. The most common identifiable precipitant was infection (33%), 24% of which were upper/lower respiratory tract infections. Indicators of increased morbidity were seen with infection, including increased hospitalization rates (P = .02), longer hospital stays (+2.0 days; P = .003), and increased use of intravenous ammonia scavengers (+45%-52%; P = .003-.03). CONCLUSION: Infection is the most common precipitant of acute hyperammonemia in patients with UCD and is associated with indicators of increased morbidity (ie, hospitalization rate, length of stay, and use of intravenous ammonia scavengers). These findings suggest that the catabolic and immune effects of infection may be a target for clinical intervention in inborn errors of metabolism.


Assuntos
Hiperamonemia/etiologia , Infecções/complicações , Distúrbios Congênitos do Ciclo da Ureia/complicações , Doença Aguda , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Hiperamonemia/epidemiologia , Masculino , Fatores Desencadeantes , Estudos Prospectivos , Taxa de Sobrevida
18.
J Pediatr ; 163(4): 1080-4.e1, 2013 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23866715

RESUMO

OBJECTIVE: To estimate the age when cardiomyopathy develops in boys with Duchenne muscular dystrophy (DMD) and to analyze the effect of corticosteroid treatment on the age of cardiomyopathy onset. STUDY DESIGN: We identified a population-based sample of 462 boys with DMD, born between 1982 and 2005, in 5 surveillance sites in the US. Echocardiographic and corticosteroid treatment data were collected. Cardiomyopathy was defined by a reduced fractional shortening (<28%) or ejection fraction (<55%). The age of cardiomyopathy onset was determined. Survival analysis was performed to determine the effects of corticosteroid treatment on cardiomyopathy onset. RESULTS: The mean (SD) age of cardiomyopathy onset was 14.3 (4.2) years for the entire population and 15.2 (3.4) years in corticosteroid-treated vs 13.1 (4.8) in non-treated boys. Survival analysis described a significant delay of cardiomyopathy onset for boys treated with corticosteroids (P < .02). By 14.3 years of age, 63% of non-treated boys had developed cardiomyopathy vs only 36% of those treated. Among boys treated with corticosteroids, there is a significant positive effect of duration of corticosteroid treatment on cardiomyopathy onset (P < .0001). For every year of corticosteroid treatment, the probability of developing cardiomyopathy decreased by 4%. CONCLUSIONS: Oral corticosteroid treatment was associated with delayed cardiomyopathy onset. The duration of corticosteroid treatment also correlated positively with delayed cardiomyopathy onset. Our analysis suggests that a boy with DMD treated for 5 years with corticosteroids might experience a 20% decrease in the likelihood of developing cardiomyopathy compared with untreated boys.


Assuntos
Corticosteroides/uso terapêutico , Cardiomiopatias/epidemiologia , Distrofia Muscular de Duchenne/complicações , Distrofia Muscular de Duchenne/tratamento farmacológico , Administração Oral , Adolescente , Corticosteroides/administração & dosagem , Idade de Início , Cardiomiopatias/complicações , Cardiomiopatias/tratamento farmacológico , Criança , Pré-Escolar , Ecocardiografia , Humanos , Masculino , Análise de Regressão , Fatores de Tempo , Resultado do Tratamento
19.
J Pediatr ; 163(5): 1384-8.e1-6, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-23810720

RESUMO

OBJECTIVE: To describe pediatric primary care providers' attitudes toward retail clinics and their experiences of retail clinics use by their patients. STUDY DESIGN: A 51-item, self-administered survey from 4 pediatric practice-based research networks from the midwestern US, which gauged providers' attitudes toward and perceptions of their patients' interactions with retail clinics, and changes to office practice to better compete. RESULTS: A total of 226 providers participated (50% response). Providers believed that retail clinics were a business threat (80%) and disrupted continuity of chronic disease management (54%). Few (20%) agreed that retail clinics provided care within recommended clinical guidelines. Most (91%) reported that they provided additional care after a retail clinic visit (median 1-2 times per week), and 37% felt this resulted from suboptimal care at retail clinics "most or all of the time." Few (15%) reported being notified by the retail clinic within 24 hours of a patient visit. Those reporting prompt communication were less likely to report suboptimal retail clinic care (OR 0.20, 95% CI 0.10-0.42) or disruption in continuity of care (OR 0.32, 95% CI 0.15-0.71). Thirty-six percent reported changes to office practice to compete with retail clinics (most commonly adjusting or extending office hours), and change was more likely if retail clinics were perceived as a threat (OR 3.70, 95% CI 1.56-8.76); 30% planned to make changes in the near future. CONCLUSIONS: Based on the perceived business threat, pediatric providers are making changes to their practice to compete with retail clinics. Improved communication between the clinic and providers may improve collaboration.


Assuntos
Instituições de Assistência Ambulatorial/organização & administração , Atitude do Pessoal de Saúde , Pediatria/organização & administração , Médicos/psicologia , Qualidade da Assistência à Saúde , Adulto , Idoso , Assistência Ambulatorial , Comércio , Comunicação , Continuidade da Assistência ao Paciente , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Meio-Oeste dos Estados Unidos , Preferência do Paciente , Atenção Primária à Saúde/organização & administração , Inquéritos e Questionários
20.
J Pediatr ; 163(4): 961-7.e3, 2013 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23726546

RESUMO

OBJECTIVE: Candida remains an important cause of late-onset infection in preterm infants. Mortality and neurodevelopmental outcome of extremely low birth weight (ELBW) infants enrolled in the Candida study were evaluated based on infection status. STUDY DESIGN: ELBW infants born at Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network (NRN) centers between March 2004 and July 2007 who were screened for suspected sepsis were eligible for inclusion in the Candida study. Primary outcome data for neurodevelopmental impairment (NDI) or death were available for 1317 of the 1515 infants (87%) enrolled in the Candida study. The Bayley Scales of Infant Development-II or -III was administered at 18 months' adjusted age. A secondary comparison was performed with 864 infants enrolled in the NRN Generic Database during the same cohort who were never screened for sepsis and therefore not eligible for the Candida study. RESULTS: Among ELBW infants enrolled in the Candida study, 31% with Candida and 31% with late-onset non-Candida sepsis had NDI at 18 months. Infants with Candida sepsis and/or meningitis had an increased risk of death and were more likely to have the composite outcome of death and/or NDI compared with uninfected infants in adjusted analysis. Compared with infants in the NRN registry never screened for sepsis, overall risk for death were similar but those with Candida infection were more likely to have NDI (OR 1.83, 95% CI 1.01-3.33, P = .047). CONCLUSIONS: In this cohort of ELBW infants, those with infection and/or meningitis were at increased risk for death and/or NDI. This risk was highest among those with Candida sepsis and/or meningitis.


Assuntos
Candidíase/complicações , Recém-Nascido de Peso Extremamente Baixo ao Nascer/crescimento & desenvolvimento , Candida , Candidíase/mortalidade , Bases de Dados Factuais , Deficiências do Desenvolvimento/diagnóstico , Feminino , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro/crescimento & desenvolvimento , Doenças do Prematuro , Masculino , Meningite Fúngica/diagnóstico , Estudos Prospectivos , Fatores de Risco , Sepse/diagnóstico , Sepse/microbiologia
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