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OBJECTIVE: To evaluate changes in prevalence and severity of cerebral palsy (CP) among surviving children born at <27 weeks of gestation over time and to determine associations between CP and other developmental domains, functional impairment, medical morbidities, and resource use among 2-year-old children who were born extremely preterm. STUDY DESIGN: Retrospective cohort study using prospective registry data, conducted at 25 centers of the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network. Participants were children born at <27 weeks of gestation and followed at 18 through 26 months of corrected age from 2008 through 2019. Outcomes of interest were changes in prevalence of any CP and severity of CP over time and associations between CP and other neurodevelopmental outcomes, functional impairment, and medical comorbidities. Adjusted logistic, linear, multinomial logistic, and robust Poisson regression evaluated the relationships between child characteristics, CP severity, and outcomes. RESULTS: Among 6927 surviving children with complete follow-up data, 3717 (53.7%) had normal neurologic examinations, 1303 (18.8%) had CP, and the remainder had abnormal neurologic examinations not classified as CP. Adjusted rates of any CP increased each year of the study period (aOR 1.11 per year, 95% CI 1.08-1.14). Cognitive development was significantly associated with severity of CP. Children with CP were more likely to have multiple medical comorbidities, neurosensory problems, and poor growth at follow-up. CONCLUSIONS: The rate of CP among surviving children who were born extremely preterm increased from 2008 through 2019. At 18 to 26 months of corrected age, neurodevelopmental and medical comorbidities are strongly associated with all severity levels of CP.
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Paralisia Cerebral , Humanos , Paralisia Cerebral/epidemiologia , Feminino , Pré-Escolar , Prevalência , Masculino , Estudos Retrospectivos , Recém-Nascido , Lactente Extremamente Prematuro , Idade Gestacional , Índice de Gravidade de Doença , Estados Unidos/epidemiologia , Lactente , Estudos de Coortes , Sistema de RegistrosRESUMO
OBJECTIVES: To assess the presence and timing of furosemide diuretic tolerance in infants with bronchopulmonary dysplasia (BPD), and to determine if tolerance is modified by thiazide co-administration. STUDY DESIGN: We performed a retrospective cohort study among infants born very preterm with BPD exposed to repeated-dose furosemide for 72 hours, measuring net fluid balance (total intake minus total output) as a surrogate of diuresis in the 3 days before and after exposure. The primary comparison was the difference in fluid balance between the first and third 24 hours of furosemide exposure. We fit a general linear model for within-subject repeated measures of fluid balance over time, with thiazide co-administration as an interaction variable. Secondary analyses included an evaluation of weight trajectories over time. RESULTS: In 83 infants, median fluid balance ranged between + 43.6 and + 52.7 ml/kg/d in the 3 days prior to furosemide exposure. Fluid balance decreased to a median of + 29.1 ml/kg/d in the first 24 hours after furosemide, but then increased to +47.5 ml/kg/d by the third 24-hour interval, consistent with tolerance (P < .001). Thiazides did not modify the change in fluid balance during furosemide exposure for any time-period. Weight decreased significantly in the first 24 hours after furosemide and increased thereafter (P < .001). CONCLUSIONS: The net fluid balance response to furosemide decreases rapidly during repeated-dose exposures in infants with BPD, consistent with diuretic tolerance. Clinicians should consider this finding in the context of an infant's therapeutic goals. Further research efforts to identify safe and effective furosemide dosage strategies are needed.
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Displasia Broncopulmonar , Doenças do Prematuro , Recém-Nascido , Humanos , Diuréticos/uso terapêutico , Furosemida , Displasia Broncopulmonar/tratamento farmacológico , Lactente Extremamente Prematuro , Estudos Retrospectivos , Doenças do Prematuro/tratamento farmacológico , Tiazidas/uso terapêuticoRESUMO
OBJECTIVE: To describe the current practices in invasive patent ductus arteriosus (PDA) closure (surgical ligation or transcatheter occlusion) in very low birth weight (VLBW) infants and changes in patient characteristics and outcomes from 2016 to 2021 among US children's hospitals. STUDY DESIGN: We evaluated a retrospective cohort of VLBW infants (birth weight 400-1499 g and gestational age 22-31 weeks) who had invasive PDA closure within 6 months of age from 2016 to 2021 in children's hospitals in the Pediatric Health Information System. Changes in patient characteristics and outcomes over time were evaluated using generalized linear models and generalized linear mixed models. RESULTS: 2418 VLBW infants (1182 surgical ligation; 1236 transcatheter occlusion) from 42 hospitals were included. The proportion of infants receiving transcatheter occlusion increased from 17.2% in 2016 to 84.4% in 2021 (P < .001). In 2021, 28/42 (67%) hospitals had performed transcatheter occlusion in > 80% of their VLBW infants needing invasive PDA closure, compared with only 2/42 (5%) in 2016. Although median postmenstrual age (PMA) at PDA closure did not change for the overall cohort, PMA at transcatheter occlusion decreased from 38 weeks in 2016 to 31 weeks by 2020, P < .001. Among those infants not intubated prior to PDA closure, extubation within 3 days postprocedure increased over time (yearly adjusted odds ratios of 1.26 [1.08-1.48]). Length of stay and mortality did not change over time. CONCLUSION: We report rapid adoption of transcatheter occlusion for PDA among VLBW infants in US children's hospitals over time. Transcatheter occlusions were performed at younger PMA over time.
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Permeabilidade do Canal Arterial , Recém-Nascido , Lactente , Humanos , Criança , Estados Unidos , Permeabilidade do Canal Arterial/cirurgia , Estudos Retrospectivos , Resultado do Tratamento , Recém-Nascido de muito Baixo Peso , Peso ao NascerRESUMO
OBJECTIVE: To assess which potential future outcomes are most important to parents of children with bronchopulmonary dysplasia, a disease that affects future respiratory, medical, and developmental outcomes for children born preterm. STUDY DESIGN: We recruited parents from 2 children's hospitals' neonatal follow-up clinics and elicited their importance rating for 20 different potential future outcomes associated with bronchopulmonary dysplasia. These outcomes were identified and selected through a literature review and discussions with panels of parents and clinician stakeholders, via a discrete choice experiment. RESULTS: One hundred and 5 parents participated. Overall, parents ranked "Will my child be more vulnerable to other problems because of having lung disease?" as the most important outcome, with other respiratory health related outcomes also highly ranked. Outcomes related to child development and effects on the family were among the lowest ranked. Individually, parents rated outcomes differently, resulting in a broad distribution of importance scores for many of the outcomes. CONCLUSIONS: The overall rankings suggest that parents prioritize future outcomes related to physical health and safety. Notably, for guiding research, some top-rated outcomes are not traditionally measured in outcome studies. For guiding individual counseling, the broad distribution of importance scores for many outcomes highlights the extent to which parents differ in their prioritization of outcomes.
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Displasia Broncopulmonar , Recém-Nascido , Humanos , Criança , Displasia Broncopulmonar/terapia , Pais/psicologia , Desenvolvimento Infantil , Avaliação de Resultados em Cuidados de SaúdeRESUMO
OBJECTIVE: To describe parent-reported barriers and facilitators to reading to preterm-born infants, both in the neonatal intensive care unit (NICU) and at home. We hypothesized that families of preterm infants face unique barriers previously not described in the literature, and that understanding barriers from the parent perspective will uncover strategies for improving the NICU environment and cognitive home environment and allow refinement of current reading programs. METHODS: We performed a qualitative study of parents of 0 to 12 month corrected age infants presenting to neonatal follow-up clinic. Infants were born <33 weeks gestational age or with birth weight ≤1500 grams. Parents completed a semistructured interview about reading practices. Answers to open-ended questions were coded to highlight key themes. RESULTS: We reached thematic saturation after interviewing 23 parents of 28 infants. Parent-generated items about barriers and facilitators to reading in the NICU and at home were each coded into 4 themes. Competing responsibilities and believing that reading was developmentally inappropriate were 2 shared themes for barriers to reading in both the NICU and home environment. Support people and understanding developmental impact were 2 shared themes for facilitators to reading in both the NICU and home environment. CONCLUSIONS: This qualitative work elucidates new targets for novel programs intended to support cognitive development of high-risk preterm infants. Addressing the unique, parent-reported barriers that we have identified and supporting adoption of the facilitators could increase word exposure for preterm infants, starting in the NICU and continuing at home.
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Recém-Nascido Prematuro , Leitura , Lactente , Recém-Nascido , Humanos , Recém-Nascido Prematuro/psicologia , Pais/psicologia , Unidades de Terapia Intensiva Neonatal , Idade GestacionalRESUMO
Introduction: The American Academy of Pediatrics recommends blood pressure screening at every health care encounter in children younger than 3 years if they have a history of prematurity or other neonatal complications requiring intensive care because these children have an increased risk for hypertension. Methods: A multidisciplinary team conducted a quality improvement initiative to improve blood pressure screening at a single-center outpatient neonatal follow-up clinic. We developed a focused intervention program including a standardized blood pressure measurement protocol, staff training and education, and streamlined documentation. We conducted two Plan-Do-Study-Act cycles from November 2019 to January 2021. The outcome measure was the percentage of patients with a blood pressure measurement. Process measures included the percentage of medical assistants educated on the new protocol, percentage of patients 3 years, and younger old with the first blood pressure measurement taken from the right arm, and the percentage of patients 1 year and younger with 3 documented blood pressures. The balancing measure was staff satisfaction with time to obtain vital signs. We used statistical process control charts and Wilcoxon rank-sum test. Results: At baseline, only 15.3% of patients had documented blood pressure. During the 10-month intervention period, there were 954 patient visits. Overall, blood pressure measurement increased to 54.7% with study interventions. The balancing measure was not negatively impacted. Conclusions: After implementing a program of focused interventions, we substantially improved the frequency of blood pressure measurements and increased adherence to American Academy of Pediatrics screening guidelines. Improved blood pressure screening allows us to identify and evaluate at-risk infants after hospital discharge.
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Home pulse oximeters prescribed for infants with cardiorespiratory conditions generate many false alarms, which create caregiver stress and sleep disturbance and can lead to unsafe practices. Additionally, relationships among oximeters, alarms, and everyday living demands are not well understood. Therefore, we aimed to gather parent perspectives on home pulse oximetry monitoring during the problem analysis phase of a quality improvement (QI) initiative. Methods: We purposively sampled and interviewed parents of infants prescribed home pulse oximeters and receiving local home care company services. We based questions on systems engineering frameworks previously used in healthcare. Data were coded iteratively and analyzed deductively (theoretical frameworks) and inductively (emerging themes). Results: Generally, themes aligned with theoretical frameworks. Parents expressed dissatisfaction with the number of false alarms home pulse oximeters generate, which parents primarily attributed to poor probe adhesiveness and the inability of oximeters to account for infant movement. Interviews highlighted the burden associated with poor device tones and portability. Device-related issues had negative repercussions for the entire family related to sleep quality, mobility, and social interactions. Universally, parents developed workarounds, including cessation of monitoring. Conclusions: Parents of infants monitored at home using pulse oximetry face many challenges, resulting in compromises in safety. Continuing to instruct parents to comply with prescribed monitoring recommendations may be unrealistic. Instead, we suggest re-engineering the home monitoring system with the needs and goals of children and their families at the center. Our description of adapting qualitative research and systems engineering methods may benefit others developing QI work.
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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.
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Hemorragia Cerebral Intraventricular/epidemiologia , Constrição , Mortalidade Hospitalar , Lactente Extremamente Prematuro , Cordão Umbilical , Feminino , Idade Gestacional , Humanos , Recém-Nascido , Masculino , Estudos RetrospectivosRESUMO
OBJECTIVE: To evaluate the associations between the primary indication for extracorporeal membrane oxygenation (ECMO) in neonates and neurodevelopmental outcomes at 12 and 24 months of age. STUDY DESIGN: This is a retrospective cohort study of neonates treated with ECMO between January 2006 and January 2016 in the Children's Hospital of Philadelphia newborn/infant intensive care unit. Primary indication for ECMO was classified as medical (eg, meconium aspiration syndrome) or surgical (eg, congenital diaphragmatic hernia). Primary study endpoints were assessed with the Bayley Scales of Infant and Toddler Development, Third Edition (Bayley-III). Groups were compared with standard bivariate testing and multivariable regression. RESULTS: A total of 191 neonates met the study's inclusion criteria, including 96 with a medical indication and 95 with a surgical indication. Survival to discharge was 71%, with significantly higher survival in the medical group (82% vs 60%; P = .001). Survivors had high rates of developmental therapies and neurosensory abnormalities. Developmental outcomes were available for 66% at 12 months and 70% at 24 months. Average performance on the Bayley-III was significantly below expected population normative values. Surgical patients had modestly lower the Bayley-III scores over time; most notably, 15% of medical infants and 49% of surgical infants had motor delay at 24 months (P = .03). CONCLUSIONS: In this single-center cohort, surgical patients had lower survival rates and higher incidence of motor delays. Strategies to reduce barriers to follow-up and improve rates of postdischarge developmental surveillance and intervention in this high-risk population are needed.
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Deficiências do Desenvolvimento/epidemiologia , Oxigenação por Membrana Extracorpórea/mortalidade , Hérnias Diafragmáticas Congênitas/mortalidade , Síndrome de Aspiração de Mecônio/mortalidade , Estudos de Coortes , Feminino , Hérnias Diafragmáticas Congênitas/cirurgia , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Tempo de Internação , Masculino , Síndrome de Aspiração de Mecônio/terapia , Alta do Paciente , Insuficiência Respiratória/mortalidade , Insuficiência Respiratória/terapia , Estudos RetrospectivosRESUMO
OBJECTIVE: To evaluate the hypothesis that early-onset sepsis increases risk of death or neurodevelopmental impairment (NDI) among preterm infants; and that among infants without early-onset sepsis, prolonged early antibiotics alters risk of death/NDI. STUDY DESIGN: Retrospective cohort study of infants born at the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network centers (2006-2014) at 22-26 weeks of gestation and birth weight 401-1000 g. Early-onset sepsis defined as growth of a pathogen from blood or cerebrospinal fluid culture ≤72 hours after birth. Prolonged early antibiotics was defined as antibiotics initiated ≤72 hours and continued ≥5 days without culture-confirmed infection, necrotizing enterocolitis, or spontaneous perforation. Primary outcome was death before follow-up or NDI assessed at 18-26 months corrected age. Poisson regression was used to estimate adjusted relative risk (aRR) and CI for early-onset sepsis outcomes. A propensity score for receiving prolonged antibiotics was derived from early clinical factors and used to match infants (1:1) with and without prolonged antibiotic exposure. Log binomial models were used to estimate aRR for outcomes in matched infants. RESULTS: Among 6565 infants, those with early-onset sepsis had higher aRR (95% CI) for death/NDI compared with infants managed with prolonged antibiotics (1.18 [1.06-1.32]) and to infants without prolonged antibiotics (1.23 [1.10-1.37]). Propensity score matching was achieved for 4362 infants. No significant difference in death/NDI (1.04 [0.98-1.11]) was observed with or without prolonged antibiotics among the matched cohort. CONCLUSIONS: Early-onset sepsis was associated with increased risk of death/NDI among extremely preterm infants. Among matched infants without culture-confirmed infection, prolonged early antibiotic administration was not associated with death/NDI.
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Antibacterianos/administração & dosagem , Sepse/tratamento farmacológico , Sepse/mortalidade , Idade de Início , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Lactente Extremamente Prematuro , Masculino , Transtornos do Neurodesenvolvimento/epidemiologia , Transtornos do Neurodesenvolvimento/etiologia , Estudos Retrospectivos , Medição de Risco , Sepse/complicações , Taxa de Sobrevida , Fatores de TempoRESUMO
OBJECTIVE: To characterize behavior of 2-year-old children based on the severity of bronchopulmonary dysplasia (BPD). STUDY DESIGN: We studied children born at 22-26 weeks of gestation and assessed at 22-26 months of corrected age with the Child Behavior Checklist (CBCL). BPD was classified by the level of respiratory support at 36 weeks of postmenstrual age. CBCL syndrome scales were the primary outcomes. The relationship between BPD grade and behavior was evaluated, adjusting for perinatal confounders. Mediation analysis was performed to evaluate whether cognitive, language, or motor skills mediated the effect of BPD grade on behavior. RESULTS: Of 2310 children, 1208 (52%) had no BPD, 806 (35%) had grade 1 BPD, 177 (8%) had grade 2 BPD, and 119 (5%) had grade 3 BPD. Withdrawn behavior (P < .001) and pervasive developmental problems (P < .001) increased with worsening BPD grade. Sleep problems (P = .008) and aggressive behavior (P = .023) decreased with worsening BPD grade. Children with grade 3 BPD scored 2 points worse for withdrawn behavior and pervasive developmental problems and 2 points better for externalizing problems, sleep problems, and aggressive behavior than children without BPD. Cognitive, language, and motor skills mediated the effect of BPD grade on the attention problems, emotionally reactive, somatic complaints, and withdrawn CBCL syndrome scales (P values < .05). CONCLUSIONS: BPD grade was associated with increased risk of withdrawn behavior and pervasive developmental problems but with decreased risk of sleep problems and aggressive behavior. The relationship between BPD and behavior is complex. Cognitive, language, and motor skills mediate the effects of BPD grade on some problem behaviors.
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Displasia Broncopulmonar/psicologia , Cognição , Comportamento do Lactente , Desenvolvimento da Linguagem , Destreza Motora , Displasia Broncopulmonar/complicações , Pré-Escolar , Feminino , Humanos , Lactente Extremamente Prematuro , Recém-Nascido , Masculino , Comportamento Problema , Estudos Prospectivos , Índice de Gravidade de DoençaRESUMO
OBJECTIVES: The objectives of this study are to determine whether abnormalities on neonatal cranial ultrasound (CUS) are associated with minor motor abnormalities at 2 years' corrected age (CA) and to assess functional outcomes and resource utilization among children with minor motor abnormalities. METHODS: Infants born at <27 weeks in the National Institute of Child Health and Human Development Neonatal Research Network between January 1, 2010, and December 31, 2014, who underwent neuroimaging with CUS at both <28 days and ≥28 days and were evaluated at 18 to 26 months' CA, were included. Follow-up included Bayley-3, neuromotor examination, Gross Motor Function Classification System (GMFCS) level, and parent questionnaires about special services and resource needs. Children were classified by the most severe motor abnormality at 18 to 26 months' CA as follows: none, minor, or major motor function abnormality. Minor motor abnormalities were defined as any of the following: (1) Bayley-3 motor composite, fine motor score, or gross motor score 1 to 2 SDs below the test normative means; (2) mild abnormalities of axial or extremity motor skills on standardized neuromotor examination; or (3) GMFCS level 1. RESULTS: A total of 809 (35%) of 2306 children had minor motor function abnormalities alone. This did not increase substantially with CUS findings (no intraventricular hemorrhage [IVH]: 37%, grade I IVH: 32%, grade II IVH: 38%, grade III/IV IVH: 30%, isolated ventriculomegaly: 33%, and cystic periventricular leukomalacia: 24%). The adjusted odds of minor axial and upper extremity function abnormalities and GMFCS level 1 were significantly higher in children with more severe CUS findings. Children with minor motor abnormalities had increased resource utilization and evidence of functional impairment compared with those without motor function abnormalities. CONCLUSION: Minor motor abnormalities at 2 years' CA are common and cannot be predicted by neonatal CUS abnormalities alone. Minor motor abnormalities are associated with higher resource utilization and evidence of functional impairment. These findings have important implications for early counseling and follow-up planning for extremely preterm infants.
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Hemorragia Cerebral/diagnóstico por imagem , Deficiências do Desenvolvimento/fisiopatologia , Marcha/fisiologia , Hidrocefalia/diagnóstico por imagem , Lactente Extremamente Prematuro/fisiologia , Leucomalácia Periventricular/diagnóstico por imagem , Destreza Motora/fisiologia , Pré-Escolar , Utilização de Instalações e Serviços , Feminino , Seguimentos , Idade Gestacional , Humanos , Lactente , Recém-Nascido , Masculino , Índice de Gravidade de Doença , UltrassonografiaRESUMO
OBJECTIVE: To determine the impact of policy changes for pulse oximetry oxygen saturation (SpO2) alarm limits on neonatal mortality and morbidity among infants born very preterm. STUDY DESIGN: This was a retrospective cohort study of infants born very preterm in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network. Infants were classified based on treatment at a hospital with an SpO2 alarm policy change and study epoch (before vs after policy change). We used a generalized linear mixed model to determine the effect of hospital group and epoch on the primary outcomes of mortality and severe retinopathy of prematurity (ROP) and secondary outcomes of necrotizing enterocolitis, bronchopulmonary dysplasia, and any ROP. RESULTS: There were 3809 infants in 10 hospitals with an SpO2 alarm policy change and 3685 infants in 9 hospitals without a policy change. The nature of most policy changes was to narrow the SpO2 alarm settings. Mortality was lower in hospitals without a policy change (aOR 0.63; 95% CI 0.50-0.80) but did not differ between epochs in policy change hospitals. The odds of bronchopulmonary dysplasia were greater for hospitals with a policy change (aOR 1.65; 95% CI 1.36-2.00) but did not differ for hospitals without a policy change. Severe ROP and necrotizing enterocolitis did not differ between epochs for either group. The adjusted odds of any ROP were lower in recent years in both hospital groups. CONCLUSIONS: Changing SpO2 alarm policies was not associated with reduced mortality or increased severe ROP among infants born very preterm.
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Displasia Broncopulmonar/diagnóstico , Enterocolite Necrosante/diagnóstico , Mortalidade Infantil/tendências , Lactente Extremamente Prematuro , Oximetria/métodos , Retinopatia da Prematuridade/diagnóstico , Displasia Broncopulmonar/epidemiologia , Estudos de Coortes , Enterocolite Necrosante/epidemiologia , Feminino , Política de Saúde , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Masculino , Morbidade/tendências , Consumo de Oxigênio/fisiologia , Formulação de Políticas , Retinopatia da Prematuridade/epidemiologia , Estudos Retrospectivos , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To assess parents' views of their children's health-related quality of life (HRQoL) and the association between neonatal morbidities and HRQoL in children with severe bronchopulmonary dysplasia (BPD) who survived to 18-36 months of corrected age. STUDY DESIGN: Study population included infants born <32 weeks of gestational age with severe BPD. At 18-36 months of corrected age, parents of children with severe BPD completed age appropriate validated Pediatric Quality of Life Inventory assessing parental views of their child's physical (PHY-QoL) and psychosocial HRQoL (PS-QoL). Ten neonatal morbidities provided a composite morbidity score between 0 and 10. Linear regression evaluated associations between PHY-QoL and PS-QoL with composite morbidity score, adjusting for gestational age, sex, corrected age at assessment. RESULTS: Seventy children (67% male, gestational age 26.1 ± 2.0 weeks, and birth weight 797 ± 318g) were enrolled at 27.1 ± 5.8 months of corrected age. Mean PHY-QoL and PS-QoL were 78.0 ± 21.9 and 75.3 ± 17.9, respectively, both significantly lower than reported means for term and preterm cohorts, with the exception of emotional QoL. Adjusted postnatal composite morbidity score was cumulatively associated with poorer PHY-QoL (P = .002) and poorer PS-QoL (P = .015). Presence of each additional neonatal morbidity was associated with a 4.4-point decrease in PHY-QoL and 2.8-point decrease in PS-QoL. CONCLUSIONS: In this cohort, parental perceived HRQoL for their child with severe BPD was lower than expected for term and preterm populations. Neonatal morbidities had an additive association with poorer parental assessment of PHY-QoL and PS-QoL. These findings may aid in care of children with severe BPD and their families, both in the intensive care nursery and postdischarge.
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Displasia Broncopulmonar/psicologia , Pais/psicologia , Qualidade de Vida , Displasia Broncopulmonar/terapia , Estudos de Casos e Controles , Estudos de Coortes , Feminino , Humanos , Lactente , Lactente Extremamente Prematuro , Recém-Nascido , Recém-Nascido de muito Baixo Peso , Masculino , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To describe how parents of neonatal intensive care unit (NICU) graduates with cerebral palsy (CP) perceive both the accuracy of prognoses provided in the NICU and the timing of their child's diagnosis of CP, and to assess the influence of functional outcome on these perceptions. STUDY DESIGN: We surveyed parents of NICU graduates with CP about timing and benefit of diagnosis, accuracy of prognosis, and functional abilities of their children. After piloting and validation, CP parent support groups circulated the survey on social media, websites, and email lists. Bivariate relationships between categorical responses to survey questions were assessed with the χ2 test, and multivariable logistic regression was performed to identify independent factors associated with perceptions about the timing of diagnosis. RESULTS: Parents of 463 children were included. Two-thirds (67%) of the children were diagnosed with CP before age 2 years, yet 40% of the respondents felt that diagnosis was made late, and only 11% categorized diagnosis as early. More than one-half (59%) perceived a benefit to diagnosis. There was a significant association between earlier age at diagnosis and greater functional limitations; 24% of parents who recalled being given a prognosis reported that their child functioned as predicted, and 46% reported that their child exceeded expectations. Parents were more likely to believe that children with fewer functional limitations had exceeded expectations. CONCLUSION: Parents remember prognostic discussions about children who develop CP as underestimating functional outcome. Diagnosis is rarely seen as early and is associated with benefits. These observations suggest that clinicians should aim to diagnose CP early and to maintain guarded optimism about future outcomes. Tools for improved communication are urgently needed.
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Paralisia Cerebral/diagnóstico , Deficiências do Desenvolvimento/diagnóstico , Unidades de Terapia Intensiva Neonatal/organização & administração , Neuroimagem/métodos , Pais/psicologia , Pré-Escolar , Estudos de Coortes , Deficiências do Desenvolvimento/reabilitação , Diagnóstico Precoce , Feminino , Humanos , Lactente , Recém-Nascido , Modelos Logísticos , Imageamento por Ressonância Magnética/métodos , Masculino , Avaliação de Resultados em Cuidados de Saúde , Equipe de Assistência ao Paciente/organização & administração , Prognóstico , Estudos Retrospectivos , Fatores de TempoAssuntos
Recém-Nascido Prematuro , Parto , Canadá , Estudos de Coortes , Feminino , Humanos , Recém-Nascido , GravidezRESUMO
OBJECTIVES: To describe the frequency and findings of cranial imaging in moderately preterm infants (born at 290/7-336/7 weeks of gestation) across centers, and to examine the association between abnormal imaging and clinical characteristics. STUDY DESIGN: We used data from the Neonatal Research Network Moderately Preterm Registry, including the most severe early (≤28 days) and late (>28 days) cranial imaging. Stepwise logistic regression and CART analysis were performed after adjustment for gestational age, antenatal steroid use, and center. RESULTS: Among 7021 infants, 4184 (60%) underwent cranial imaging. These infants had lower gestational ages and birth weights and higher rates of small for gestational age, outborn birth, cesarean delivery, neonatal resuscitation, and treatment with surfactant, compared with those without imaging (P < .0001). Imaging abnormalities noted in 15% of the infants included any intracranial hemorrhage (13.2%), grades 3-4 intracranial hemorrhage (1.7%), cystic periventricular leukomalacia (2.6%), and ventriculomegaly (6.6%). Histologic chorioamnionitis (OR, 1.47; 95% CI, 1.19-1.83), gestational age (0.95; 95% CI, 0.94-0.97), antenatal steroids (OR, 0.55; 95% CI, 0.41-0.74), and cesarean delivery (OR, 0.66; 95% CI, 0.53-0.81) were associated with abnormal imaging. The center with the highest rate of cranial imaging, compared with the lowest, had a higher risk of abnormal imaging (OR, 2.08; 95% CI, 1.10-3.92). On the classification and regression-tree model, cesarean delivery, center, antenatal steroids, and chorioamnionitis, in that order, predicted abnormal imaging. CONCLUSION: Among the 60% of moderately preterm infants with cranial imaging, 15% had intracranial hemorrhage, cystic periventricular leukomalacia or late ventriculomegaly. Further correlation of imaging and long-term neurodevelopmental outcomes in moderately preterm infants is needed.
Assuntos
Encéfalo/diagnóstico por imagem , Hidrocefalia , Hemorragias Intracranianas , Leucomalácia Periventricular , Triagem Neonatal , Adulto , Cesárea/estatística & dados numéricos , Corioamnionite/diagnóstico , Feminino , Idade Gestacional , Humanos , Hidrocefalia/diagnóstico por imagem , Hidrocefalia/epidemiologia , Lactente , Recém-Nascido , Recém-Nascido Prematuro , Recém-Nascido Pequeno para a Idade Gestacional , Hemorragias Intracranianas/diagnóstico por imagem , Hemorragias Intracranianas/epidemiologia , Leucomalácia Periventricular/diagnóstico por imagem , Leucomalácia Periventricular/epidemiologia , Modelos Logísticos , Gravidez , Estudos Prospectivos , Sistema de Registros , Ressuscitação/estatística & dados numéricos , Fatores de Risco , Adulto JovemRESUMO
OBJECTIVE: To characterize the epidemiology of Car Seat Tolerance Screening (CSTS) failure and the association between test failure and all-cause 30-day postdischarge mortality or hospital readmission in a large, multicenter cohort of preterm infants receiving neonatal intensive care. STUDY DESIGN: This retrospective cohort study used the prospectively collected Optum Neonatal Database. Study infants were born at <37 weeks of gestation between 2010 and 2016. We identified independent predictors of CSTS failure and calculated the risk-adjusted odds of all-cause 30-day mortality or hospital readmission associated with test failure. RESULTS: Of 7899 infants cared for in 788 hospitals, 334 (4.2%) failed initial CSTS. Greater postmenstrual age at testing and African American race were independently associated with decreased failure risk. Any treatment with an antacid medication, concurrent use of caffeine or supplemental oxygen, and a history of failing a trial off respiratory support were associated with increased failure risk. The mean adjusted post-CSTS duration of hospitalization was 3.1 days longer (95% CI, 2.7-3.6) among the infants who failed the initial screening. Rates of 30-day all-cause mortality or readmission were higher among infants who failed the CSTS (2.4% vs 1.0%; P = .03); however, the difference was not significant after confounder adjustment (OR, 0.38; 95% CI, 0.11-1.31). CONCLUSION: CSTS failure was associated with longer post-test hospitalization but no difference in the risk-adjusted odds for 30-day mortality or hospital readmission. Whether CSTS failure unnecessarily prolongs hospitalization or results in appropriate care that prevents adverse postdischarge outcomes is unknown. Further research is needed to address this knowledge gap.
Assuntos
Apneia/diagnóstico , Sistemas de Proteção para Crianças/efeitos adversos , Unidades de Terapia Intensiva Neonatal , Programas de Rastreamento , Apneia/etiologia , Apneia/mortalidade , Hospitalização , Humanos , Recém-Nascido , Recém-Nascido Prematuro , Estudos Retrospectivos , Fatores de RiscoRESUMO
OBJECTIVES: To describe the frequency of postnatal discussions about withdrawal or withholding of life-sustaining therapy (WWLST), ensuing WWLST, and outcomes of infants surviving such discussions. We hypothesized that such survivors have poor outcomes. STUDY DESIGN: This retrospective review included registry data from 18 centers of the National Institute of Child Health and Human Development Neonatal Research Network. Infants born at 22-28 weeks of gestation who survived >12 hours during 2011-2013 were included. Regression analysis identified maternal and infant factors associated with WWLST discussions and factors predicting ensuing WWLST. In-hospital and 18- to 26-month outcomes were evaluated. RESULTS: WWLST discussions occurred in 529 (15.4%) of 3434 infants. These were more frequent at 22-24 weeks (27.0%) compared with 27-28 weeks of gestation (5.6%). Factors associated with WWLST discussion were male sex, gestational age (GA) of ≤24 weeks, birth weight small for GA, congenital malformations or syndromes, early onset sepsis, severe brain injury, and necrotizing enterocolitis. Rates of WWLST discussion varied by center (6.4%-29.9%) as did WWLST (5.2%-20.7%). Ensuing WWLST occurred in 406 patients; of these, 5 survived to discharge. Of the 123 infants for whom intensive care was continued, 58 (47%) survived to discharge. Survival after WWLST discussion was associated with higher rates of neonatal morbidities and neurodevelopmental impairment compared with babies for whom WWLST discussions did not occur. Significant predictors of ensuing WWLST were maternal age >25 years, necrotizing enterocolitis, and days on a ventilator. CONCLUSIONS: Wide center variations in WWLST discussions occur, especially at ≤24 weeks GA. Outcomes of infants surviving after WWLST discussions are poor. TRIAL REGISTRATION: ClinicalTrials.gov: NCT00063063.