RESUMEN
OBJECTIVES: Racial and ethnic differences in drug testing have been described among adults and newborns. Less is known regarding testing patterns among children and adolescents. We sought to describe the association between race and ethnicity and drug testing at US children's hospitals. We hypothesized that non-Hispanic White children undergo drug testing less often than children from other groups. METHODS: We conducted a retrospective cohort study of emergency department (ED)-only encounters and hospitalizations for children diagnosed with a condition for which drug testing may be indicated (abuse or neglect, burns, malnutrition, head injury, vomiting, altered mental status or syncope, psychiatric, self-harm, and seizure) at 41 children's hospitals participating in the Pediatric Health Information System during 2018 and 2021. We compared drug testing rates among (non-Hispanic) Asian, (non-Hispanic) Black, Hispanic, and (non-Hispanic) White children overall, by condition and patient cohort (ED-only vs. hospitalized) and across hospitals. RESULTS: Among 920,755 encounters, 13.6% underwent drug testing. Black children were tested at significantly higher rates overall (adjusted odds ratio [aOR]: 1.18; 1.05-1.33) than White children. Black-White testing differences were observed in the hospitalized cohort (aOR: 1.42; 1.18-1.69) but not among ED-only encounters (aOR: 1.07; 0.92-1.26). Asian, Hispanic, and White children underwent testing at similar rates. Testing varied by diagnosis and across hospitals. CONCLUSIONS: Hospitalized Black children were more likely than White children to undergo drug testing at US children's hospitals, though this varied by diagnosis and hospital. Our results support efforts to better understand and address healthcare disparities, including the contributions of implicit bias and structural racism.
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Etnicidad , Hospitales Pediátricos , Adolescente , Niño , Preescolar , Femenino , Humanos , Lactante , Masculino , Servicio de Urgencia en Hospital/estadística & datos numéricos , Etnicidad/estadística & datos numéricos , Disparidades en Atención de Salud/etnología , Hospitalización/estadística & datos numéricos , Grupos Raciales , Estudios Retrospectivos , Detección de Abuso de Sustancias/estadística & datos numéricos , Trastornos Relacionados con Sustancias/diagnóstico , Trastornos Relacionados con Sustancias/etnología , Estados Unidos , Blanco , Asiático , Hispánicos o Latinos , Negro o AfroamericanoRESUMEN
PURPOSE: To describe how pediatric educators effectively teach evidence-based medicine (EBM) in the clinical setting. Secondarily, to identify barriers hindering effective practice and teaching of EBM and strategies to overcome these barriers. METHODS: The authors conducted a cross-sectional multi-institutional qualitative study from July 2016 to December 2017 in which they interviewed pediatric educators across many subspecialties who were identified as exemplary teachers of EBM at 3 academic pediatric residency programs. Pediatric residents who had recently worked with these faculty members were also interviewed to allow triangulation between participants. Qualitative analysis was complete once saturation was achieved. RESULTS: Twenty-six pediatric educators identified as exemplary teachers of EBM and 10 residents who worked with those educators participated in the study. Thirteen explicit teaching strategies and 2 implicit teaching strategies, namely disclosure of uncertainty and role modeling, were identified. Barriers to practicing clinical EBM included balancing patient responsibilities, inadequate time, and personal knowledge. Barriers to teaching clinical EBM were inadequate time and learner engagement. To overcome these barriers, faculty limit and focus teaching points, attempt to make EBM relevant to patient care, and incorporate follow-up strategies. CONCLUSIONS: Numerous teaching strategies are available to faculty to improve the clinical teaching of EBM and to overcome commonly encountered clinical EBM barriers. Familiarity with these clinical EBM teaching strategies can be used for faculty development and to enhance the teaching of EBM to learners.
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Internado y Residencia , Niño , Estudios Transversales , Medicina Basada en la Evidencia/educación , Docentes Médicos , Humanos , Investigación Cualitativa , EnseñanzaRESUMEN
BACKGROUND: Newborn screening for mucopolysaccharidosis type I (MPS I) shows promise to improve outcomes by facilitating early diagnosis and treatment. However, diagnostic tests for MPS I are of limited value in predicting whether a child will develop severe central nervous system disease associated with Hurler syndrome, or minimal or no central nervous system involvement associated with the attenuated phenotypes (Hurler-Scheie and Scheie syndromes). Given that the optimal treatment differs between Hurler syndrome and the attenuated MPS I phenotypes, the absence of a reliable prognostic biomarker complicates clinical decision making for infants diagnosed through newborn screening. Information about the natural history of Hurler syndrome may aid in the management of affected infants, contribute to treatment decisions, and facilitate evaluation of treatment effectiveness and prognosis. Thus, the aim of this study was to characterize the progression and timing of symptom onset in infants with Hurler syndrome. RESULTS: Clinical data from 55 patients evaluated at a single center were retrospectively reviewed. Information about each child's medical history was obtained following a standardized protocol including a thorough parent interview and the review of previous medical records. All patients underwent systematic physical and neurodevelopmental evaluations by a multidisciplinary team. Nearly all patients (98%) showed signs of disease during the first 6 months of life. Common early disease manifestations included failed newborn hearing screen, respiratory symptoms, difficulty latching, and otitis media. Other symptoms such as kyphosis, corneal clouding, cardiac disease, joint restrictions, and enlarged head circumference typically appeared slightly later (median age, 8-10 months). During the first 12 months, gross motor development was the most severely affected area of functioning, and a significant number of patients also experienced language delays. Cognition was typically preserved during this period. CONCLUSIONS: In this large cohort of patients with Hurler syndrome, the vast majority showed signs and symptoms of disease during the first months of life. More research is needed to determine the extent to which early clinical manifestations of MPS I can predict phenotype and treatment outcomes.
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Mucopolisacaridosis I/patología , Femenino , Trasplante de Células Madre Hematopoyéticas , Humanos , Lactante , Recién Nacido , Masculino , Mucopolisacaridosis I/terapia , Estudios RetrospectivosRESUMEN
OBJECTIVES: Hurler syndrome is characterized by progressive multisystem deterioration leading to early death in childhood. This prospective study evaluated the long-term outcomes of patients with Hurler syndrome who underwent umbilical cord blood transplantation from unrelated donors. STUDY DESIGN: Only patients with Hurler syndrome who underwent umbilical cord blood transplantation between December 1995 and March 2006 (n = 25) and who were followed for at least 5 years (n = 19) were included in the analysis. The patients were longitudinally evaluated by a multidisciplinary team of specialists following a standardized protocol. RESULTS: Median age at transplantation was 15.9 months (range 2.1-35), and patients were followed up until a median age of 10.1 years (range 7.2-14.9). Overall survival was 80%. All successfully transplanted patients achieved full donor chimerism and normal enzyme levels, and all children continue to make gains in development. Gross motor function was the most affected area. Vision and hearing were compromised in a minority of the patients, with some requiring corneal transplant or hearing aids. Cardiopulmonary function improved. Some children required orthopedic surgery, but severe complications were prevented in most patients. Although longitudinal growth was lower than that of unaffected children, it was considerably higher than expected from the natural course of the disease. Head circumference normalized. Hydrocephalus was not observed at longer follow-up, and cerebral atrophy decreased over time. CONCLUSIONS: In this descriptive study of children with Hurler syndrome, unrelated umbilical cord blood transplantation was associated with improved somatic disease and neurodevelopment.