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1.
Epilepsia ; 63(3): 672-685, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34971001

RESUMO

OBJECTIVE: Pediatric epilepsy is often associated with diminished health-related quality of life (HRQOL). Our aim was to establish the validity of the Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS-QOL-2) questions, a novel two-item HRQOL prompt for children with epilepsy, primarily for use in clinical care. METHODS: We performed a multicenter cross-sectional study to validate the PELHS-QOL-2. Construct validity was established through bivariate comparisons with four comparator measures and known drivers of quality of life in children with epilepsy, as well as by creating an a priori multivariable model to predict the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55). Validity generalization was established through bivariate comparisons with demographic and clinical information. Content validity and clinical utility were established by assessing how well the PELHS-QOL-2 met eight design criteria for an HRQOL prompt established by a multistakeholder group of experts. RESULTS: The final participant sample included 154 English-speaking caregivers of children with epilepsy (mean age = 9.7 years, range = .5-18, 49% female, 70% White). The PELHS-QOL-2 correlated with the four comparator instruments (ρ = .44-.56), was significantly associated with several known drivers of quality of life in children with epilepsy (p < .05), and predicted QOLCE-55 scores in the multivariate model (adjusted R2 = .54). The PELHS-QOL-2 item was not associated with the age, sex, and ethnicity of the children nor with the setting and location of data collection, although PELHS-QOL-Medications was significantly associated with race (worse for White race). Following both quantitative and qualitative analysis, the PELHS-QOL-2 met seven of eight design criteria. SIGNIFICANCE: The PELHS-QOL-2 is a valid HRQOL prompt and is well suited for use in clinical care as a mechanism to routinely initiate conversations with caregivers about quality of life in children with epilepsy. The association of PELHS-QOL-Medications with race merits further study.


Assuntos
Epilepsia , Sistema de Aprendizagem em Saúde , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Epilepsia/tratamento farmacológico , Feminino , Humanos , Masculino , Qualidade de Vida , Inquéritos e Questionários
2.
Pediatr Pulmonol ; 52(1): 84-90, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27362468

RESUMO

STUDY OBJECTIVES: Sleep disruption is increasingly recognized in hospitalized patients. Impaired sleep is associated with measureable alterations in neurodevelopment. The neonatal intensive care unit (NICU) environment has the potential to affect sleep quality and quantity. We aimed: (i) to determine the frequency and duration of hands-on care, and its impact on sleep, for NICU patients; and (ii) to assess the incidence of respiratory events associated with handling for a cohort of sick neonates. METHODS: Term and near-term neonates admitted to the NICU and at risk for cerebral dysfunction due to severity of illness or clinical suspicion for seizures underwent attended, bedside polysomnography. Continuous polysomnogram segments were analyzed and data on handling, infant behavioral state, and associated respiratory events were recorded. RESULTS: Video and polysomnography data were evaluated for 25 infants (gestational age 39.4 ± 1.6 weeks). The maximum duration between handling episodes for each infant was 50.9 ± 26.2 min, with a median of 2.3 min between contacts. Handling occurred across all behavioral states (active sleep 29.5%; quiet sleep 23.1%; awake 29.9%; indeterminate 17.4%; P = 0.99). Arousals or awakenings occurred in 57% of contacts with a sleeping infant. Hypopnea, apnea, and oxygen desaturation occurred with 16%, 8%, and 19.5% of contacts, respectively. Hypopnea was most likely to occur following contact with infants in active sleep (28%; P < 0.001). CONCLUSIONS: Infants in the NICU experience frequent hands-on care, associated with disturbances of sleep and respiration. The potential health and developmental impact of these disturbances merits study, as strategies to monitor sleep and minimize sleep-disordered breathing might then improve NICU outcomes. Pediatr Pulmonol. 2017;52:84-90 © 2016 Wiley Periodicals, Inc.


Assuntos
Unidades de Terapia Intensiva Neonatal , Polissonografia , Respiração , Síndromes da Apneia do Sono/terapia , Sono/fisiologia , Feminino , Idade Gestacional , Humanos , Lactente , Recém-Nascido , Masculino , Síndromes da Apneia do Sono/fisiopatologia
3.
Clin Teach ; 14(4): 251-255, 2017 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-27550326

RESUMO

BACKGROUND: The purpose of this mixed-methods study was to investigate whether increased night shifts for students on paediatric rotations had any negative impact on their overall quality of educational experiences in light of the implementation of duty-hour restrictions. METHODS: Both quantitative and qualitative data were collected from 30 students on paediatric rotations during the academic year 2011/12. Students completed two questionnaires, one in response to their experiences during the day shifts and another in response to their experiences during the night shifts. Only 25 cases were retained for the final analyses. The non-parametric Wilcoxon signed-rank test was used to analyse the quantitative data, and constant comparative thematic analyses, as described by Creswell, were used to analyse the qualitative data. [Do] increased nights shifts for students … [have] any negative impact on their overall quality of educational experiences[?] RESULTS: The results indicated that students' perceived quality of experiences during the night shifts was greater, compared with their day shifts. Students reported having more time to socialise during the night shifts. They further reported that informal ways of learning, such as impromptu teaching and spontaneous discussions on clinical problems, were more beneficial, and these often occurred in abundance during the night shifts as opposed to the scheduled didactic teaching sessions that occur during the day shifts. DISCUSSION: This study documented many unanticipated benefits of night shifts. The feeling of cohesiveness of the night team deserves further exploration, as this can be linked to better performance outcomes. More consideration should be given to implementing night shifts as a regular feature of clerkships.


Assuntos
Internato e Residência , Aprendizagem , Pediatria/educação , Médicos , Estudantes de Medicina/psicologia , Educação de Graduação em Medicina , Humanos , Inquéritos e Questionários
4.
Pediatr Res ; 78(1): 91-6, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25812123

RESUMO

BACKGROUND: Near-infrared spectroscopy (NIRS) measures oxygen metabolism and is increasingly used for monitoring critically ill neonates. The implications of NIRS-recorded data in this population are poorly understood. We evaluated NIRS monitoring for neonates with seizures. METHODS: In neonates monitored with video-electroencephalography, NIRS-measured cerebral regional oxygen saturation (rSO2) and systemic O2 saturation were recorded every 5 s. Mean rSO2 was extracted for 1-h blocks before, during, and after phenobarbital doses. For each electrographic seizure, mean rSO2 was extracted for a period of three times the duration of the seizure before and after the ictal pattern, as well as during the seizure. Linear mixed models were developed to assess the impact of phenobarbital administration and of seizures on rSO2 and fractional tissue oxygen extraction. RESULTS: For 20 neonates (estimated gestational age: 39.6 ± 1.5 wk), 61 phenobarbital doses and 40 seizures were analyzed. Cerebral rSO2 rose (P = 0.005), and fractional tissue oxygen extraction declined (P = 0.018) with increasing phenobarbital doses. rSO2 declined during seizures, compared with baseline and postictal phases (baseline 81.2 vs. ictal 77.7 vs. postictal 79.4; P = 0.004). Fractional tissue oxygen extraction was highest during seizures (P = 0.002). CONCLUSIONS: Cerebral oxygen metabolism decreases after phenobarbital administration and increases during seizures. These small, but clear, changes in cerebral oxygen metabolism merit assessment for potential clinical impact.


Assuntos
Anticonvulsivantes/uso terapêutico , Encéfalo/metabolismo , Oxigênio/metabolismo , Fenobarbital/uso terapêutico , Convulsões/tratamento farmacológico , Anticonvulsivantes/efeitos adversos , Eletroencefalografia , Feminino , Humanos , Recém-Nascido , Doenças do Recém-Nascido , Modelos Lineares , Masculino , Monitorização Fisiológica/métodos , Oximetria , Fenobarbital/efeitos adversos , Espectroscopia de Luz Próxima ao Infravermelho
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