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1.
Semin Fetal Neonatal Med ; 29(1): 101531, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38632009

RESUMO

Over 75% of surviving extremely preterm infants do not have major neurodevelopmental disabilities; however, more than half face difficulties with communication, coordination, attention, learning, social, and executive function abilities. These "minor" challenges can have a negative impact on educational and social outcomes, resulting in physical, behavioral, and social health problems in adulthood. We will review assessment tools for social-emotional and adaptive functional skills in early childhood as these determine family and early childhood supports. We highlight bronchopulmonary dysplasia as an example of the critical intersections of parental wellbeing, medical and developmental adaptive trajectories in infancy and early childhood, and partnerships between child neurologists and community medical and developmental professionals. We examine studies of engaging parents to promote developmental trajectories, with a focus on supporting parent-child interactions that underlie communication, social-adaptive behaviors, and learning in the first 1000 days of life. Recommendations for neurodevelopmental surveillance and screening of extremely preterm infants can also be applied to infants with other risk factors for altered neurodevelopment.


Assuntos
Lactente Extremamente Prematuro , Humanos , Lactente Extremamente Prematuro/fisiologia , Recém-Nascido , Desenvolvimento Infantil/fisiologia , Lactente , Relações Pais-Filho , Displasia Broncopulmonar
2.
Pediatr Pulmonol ; 59(6): 1677-1685, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38501327

RESUMO

BACKGROUND: Patients discharged on home oxygen therapy (HOT) for bronchopulmonary dysplasia (BPD) often receive months of this therapy. A previous trial comparing two methods of HOT weaning showed that increased parent involvement in HOT weaning decreased HOT duration. Our outpatient team uses a standard protocol for outpatient HOT weaning, starting at the first clinic visit 4-6 weeks after discharge. AIM: To shorten HOT duration by teaching parents the outpatient HOT weaning process before neonatal intensive care unit (NICU) discharge. METHODS: We launched a quality improvement program in April 2021 for preterm infants with BPD without significant comorbidities who were stable on ≤0.5 L nasal cannula. Eligible infants started the outpatient HOT weaning protocol while inpatient, with education for parents and nurses. The outcome measure was the duration of HOT after discharge. Process measures focused on protocol adherence. Balancing measures included NICU length of stay and appropriateness of parent-directed HOT weaning. RESULTS: During the study period, there were a total of 133 eligible patients discharged on home oxygen, with 75 in the baseline group and 58 in the intervention group. Forty-five (78%) participated in the HOT weaning protocol while inpatient. HOT was reduced from an average of 27 to 12 weeks after May 2021. We observed no change in NICU length of stay or inappropriate HOT weaning. CONCLUSION: Early introduction of HOT weaning with a focus on caregiver education is associated with a decreased duration of HOT.


Assuntos
Displasia Broncopulmonar , Recém-Nascido Prematuro , Oxigenoterapia , Melhoria de Qualidade , Humanos , Displasia Broncopulmonar/terapia , Oxigenoterapia/métodos , Recém-Nascido , Feminino , Masculino , Unidades de Terapia Intensiva Neonatal , Pais/educação , Alta do Paciente , Tempo de Internação/estatística & dados numéricos , Educação de Pacientes como Assunto/métodos , Serviços de Assistência Domiciliar
3.
J Perinatol ; 2024 Jan 26.
Artigo em Inglês | MEDLINE | ID: mdl-38278963

RESUMO

OBJECTIVE: Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD). METHODS: Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used. RESULTS: Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance immediate caregiving activities with future health outcomes; and integrating primary care, specialty, and community supports. CONCLUSIONS: Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care.

4.
J Pediatr ; 265: 113779, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37852433

RESUMO

OBJECTIVE: To describe 3-year post-neonatal intensive care unit (NICU) health care use among children with congenital anomalies discharged home from a level IV NICU. STUDY DESIGN: Retrospective chart review of children with congenital anomalies enrolled in a previous prospective cohort study from 201 to 2020. We assessed hospital readmission rate, number of surgeries, and durable medical equipment (DME) use by type of anomaly. RESULTS: Among 166 infants enrolled in the original study, 158 survived to NICU discharge. One-third of the cohort had a genetic anomaly. Six of 158 patients (4%) died before 3 years of age. More than one-half the children were readmitted within the first 2 years of life, and one-third were readmitted in the third year of life. Readmissions were greatest for those with multiple, musculoskeletal, and central nervous system anomalies and lowest for abdominal-wall defects. Approximately one-half the children underwent surgeries, and this proportion remained constant over the 3-year time. Sixty-two percent of patients received DME at discharge, with gastrostomy tubes being the most common. Gastrostomy tubes were still present in 75% of the patients at 3 years of age. CONCLUSION: Children with congenital anomalies are at risk for increased health care use during early childhood. Those with multiple anomalies, a genetic syndrome, musculoskeletal, and central nervous system anomalies and those discharged with DME are at greatest risk whereas those with abdominal-wall defects are at lowest risk. Provider awareness, high-quality discharge training, parent psychological support, greater assimilation of families in the NICU, and telehealth may be some strategies to better support these families.


Assuntos
Unidades de Terapia Intensiva Neonatal , Malformações do Sistema Nervoso , Recém-Nascido , Lactente , Criança , Humanos , Pré-Escolar , Estudos Retrospectivos , Estudos de Coortes , Aceitação pelo Paciente de Cuidados de Saúde
5.
J Pediatr ; 264: 113773, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37839508

RESUMO

OBJECTIVE: To determine how bronchopulmonary dysplasia (BPD) affects health-related quality of life (HRQL) among infants from NICU hospitalization through 1-year postdischarge. STUDY DESIGN: This was a prospective cohort study of infants with BPD and their parents. Parent HRQL was measured with the PedsQL Family Impact Module before NICU discharge and 3- and 12-months post-discharge. At 12 months, parent-reported child health outcomes included questions from the Test of Respiratory and Asthma Control in Kids, Warner Initial Developmental Evaluation of Adaptive and Functional Skills, and National Survey of Children with Special Health Care Needs. HRQL change over time was assessed by multivariable linear regression. RESULTS: Of 145 dyads, 129 (89%) completed 3-month follow-up, and 113 (78%) completed 12-month follow-up. In the NICU, lower HRQL was associated with earlier gestational age, postnatal corticosteroids, outborn status, and gastrostomy tubes. At 3 months, lower HRQL was associated with readmissions and home oxygen use. At 12 months, lower HRQL was associated with parent-reported difficulty breathing, lower developmental scores, and not playing with other children. At 3 and 12 months, 81% of parents reported similar or improved HRQL compared with the NICU period. Parents reporting infant respiratory symptoms experienced less improvement. CONCLUSIONS: BPD affects parent HRQL over the first year. Most parents report similar or better HRQL after discharge compared with the NICU stay. Less improvement is reported by parents of infants experiencing respiratory symptoms at 12 months. Efforts to improve parent HRQL should target respiratory symptoms and social isolation.


Assuntos
Displasia Broncopulmonar , Recém-Nascido Prematuro , Recém-Nascido , Lactente , Criança , Humanos , Qualidade de Vida , Assistência ao Convalescente , Estudos Prospectivos , Alta do Paciente , Unidades de Terapia Intensiva Neonatal , Pais
6.
Adv Neonatal Care ; 23(6): 583-595, 2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-37948632

RESUMO

BACKGROUND: Stress from preterm infant admission to the neonatal intensive care unit (NICU) is associated with infant and maternal physiologic changes, including endocrine and epigenetic alterations. Little is known about the mechanisms connecting NICU stress to biologic changes, and whether preterm infant and maternal stress are reciprocal. As a preliminary step, feasibility and acceptability of measuring indicators of stress are required. PURPOSE: This study evaluated the feasibility and acceptability of research examining perceptions and biologic markers of stress in premature infant-maternal dyads during and after NICU hospitalization. METHODS: We evaluated study feasibility using a longitudinal descriptive design. Acceptability was measured via a maternal questionnaire. Exploratory data regarding hospitalization, perceptions of stress, social support and social determinants of health, and biologic markers of stress were collected during the first week of life and again 3 months after NICU. RESULTS: Forty-eight mothers were eligible for the study, 36 mothers were approached, 20 mothers consented to participate, and 14 mothers completed data collection. Mothers reported high levels of study acceptability despite also voicing concern about the sharing of genetic data. Exploration of DNA methylation of SLC6A4 in preterm infants was significant for a strong correlation with perception of total chronic stress. IMPLICATIONS FOR PRACTICE AND RESEARCH: Clinical practice at the bedside in the NICU should include standardized screening for and early interventions to minimize stress. Complex research of stress is feasible and acceptable. Future research should focus on linking early life stress with epigenetic alterations and evaluation of the dyad for reciprocity.


Assuntos
Recém-Nascido Prematuro , Unidades de Terapia Intensiva Neonatal , Lactente , Feminino , Recém-Nascido , Humanos , Estudos de Viabilidade , Mães , Hospitalização , Biomarcadores , Proteínas da Membrana Plasmática de Transporte de Serotonina
7.
Res Sq ; 2023 Oct 09.
Artigo em Inglês | MEDLINE | ID: mdl-37886597

RESUMO

Objective: Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD). Methods: Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used. Results: Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance process needs with future trajectories; and integration of primary care, specialty care, and community supports. Conclusions: Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care.

8.
J Pediatr ; 263: 113712, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37659587

RESUMO

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.


Assuntos
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 Nascer
9.
Pediatr Pulmonol ; 58(5): 1551-1561, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36793145

RESUMO

INTRODUCTION: Despite bronchopulmonary dysplasia (BPD) being a common morbidity of preterm birth, there is no validated objective tool to assess outpatient respiratory symptom control for clinical and research purposes. METHODS: Data were obtained from 1049 preterm infants and children seen in outpatient BPD clinics of 13 US tertiary care centers from 2018 to 2022. A new standardized instrument was modified from an asthma control test questionnaire and administered at the time of clinic visits. External measures of acute care use were also collected. The questionnaire for BPD control was validated in the entire population and selected subgroups using standard methodology for internal reliability, construct validity, and discriminative properties. RESULTS: Based on the scores from BPD control questionnaire, the majority of caregivers (86.2%) felt their child's symptoms were under control, which did not differ by BPD severity (p = 0.30) or a history of pulmonary hypertension (p = 0.42). Across the entire population and selected subgroups, the BPD control questionnaire was internally reliable, suggestive of construct validity (albeit correlation coefficients were -0.2 to -0.4.), and discriminated control well. Control categories (controlled, partially controlled, and uncontrolled) were also predictive of sick visits, emergency department visits, and hospital readmissions. CONCLUSION: Our study provides a tool for assessing respiratory control in children with BPD for clinical care and research studies. Further work is needed to identify modifiable predictors of disease control and link scores from the BPD control questionnaire to other measures of respiratory health such as lung function testing.


Assuntos
Displasia Broncopulmonar , Nascimento Prematuro , Lactente , Criança , Feminino , Recém-Nascido , Humanos , Recém-Nascido Prematuro , Pacientes Ambulatoriais , Reprodutibilidade dos Testes , Inquéritos e Questionários
10.
Pediatr Pulmonol ; 58(2): 522-529, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36314365

RESUMO

BACKGROUND: Infants with bronchopulmonary dysplasia (BPD) are often prescribed diuretics before the neonatal intensive care unit (NICU) discharge. It is unknown whether outpatient medication weaning strategies affect the duration of home oxygen therapy. METHODS: This was a secondary cohort analysis of infants born <32 weeks gestational age with BPD from 2015 to 2018 discharged from our NICU or regional NICUs, referred to our pulmonary clinic for home oxygen management. We compared three groups: those discharged with no diuretics, diuretics actively weaned (dose decreased), and diuretics passively weaned (dose not adjusted). RESULTS: Out of 125 infants, 116 were included in the analysis. Forty-five infants were discharged without diuretics, 52 infants were discharged with diuretics that were actively weaned, and 19 infants were discharged with diuretics that were passively weaned. Infants who were passively weaned spent the most time on home oxygen (median 28 weeks, interquartile range [IQR] 16-52; p = 0.011); there were no differences in home oxygen duration in infants actively weaned (median 13 weeks, IQR 10-26) versus not on diuretics (median 22 weeks, IQR 12-30, p = 0.285). Multivariable adjustment for other illness characteristics associated with the duration of home oxygen did not change this finding. CONCLUSIONS: Active weaning of diuretics did not prolong the duration of home oxygen, in the setting of a standardized clinical guideline for weaning home oxygen in infants with BPD. These data can serve as baseline information to implement and test standardized strategies for outpatient medication management.


Assuntos
Displasia Broncopulmonar , Recém-Nascido , Humanos , Lactente , Displasia Broncopulmonar/tratamento farmacológico , Recém-Nascido Prematuro , Alta do Paciente , Diuréticos/uso terapêutico , Oxigênio/uso terapêutico
11.
JAMA Ophthalmol ; 140(11): 1085-1094, 2022 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-36201183

RESUMO

Importance: Anti-vascular endothelial growth factor (VEGF) therapy for retinopathy of prematurity (ROP) has potential ocular and systemic advantages compared with laser, but we believe the systemic risks of anti-VEGF therapy in preterm infants are poorly quantified. Objective: To determine whether there was an association with increased risk of pulmonary hypertension (PH) in preterm infants with ROP following treatment with anti-VEGF therapy as compared with laser treatment. Design, Setting, and Participants: This multicenter retrospective cohort study took place at neonatal intensive care units of 48 children's hospitals in the US in the Pediatric Health Information System database from 2010 to 2020. Participants included preterm infants with gestational age at birth 22 0/7 to 31 6/7 weeks who had ROP treated with anti-VEGF therapy or laser photocoagulation. Exposures: Anti-VEGF therapy vs laser photocoagulation. Main Outcomes and Measures: New receipt of pulmonary vasodilators at least 7 days after ROP therapy was compared between exposure groups, matched using propensity scores generated from preexposure variables, and adjusted for birth year and hospital. The odds of receiving an echocardiogram after 30 days of age was also included to adjust for secular trends and interhospital variation in PH screening. Results: Among 1577 patients (55.9% male) meeting inclusion criteria, 689 received laser photocoagulation and 888 received anti-VEGF treatment (95% bevacizumab, 5% ranibizumab). Patients were first treated for ROP at median 36.4 weeks' postmenstrual age (IQR, 34.6-38.7). A total of 982 patients (491 in each group) were propensity score matched. Good covariate balance was achieved, as indicated by a model variance ratio of 1.15. More infants who received anti-VEGF therapy were treated for PH, but when adjusted for hospital and year, this was no longer statistically significant (6.7%; 95% CI, 2.6-6.9 vs 4.3% 95% CI, 4.4-10.2; adjusted odds ratio, 1.62; 95% CI, 0.90-2.89; P = .10). Conclusions and Relevance: Anti-VEGF therapy was not associated with greater use of pulmonary vasodilators after adjustment for hospital and year. Our findings suggest exposure to anti-VEGF may be associated with PH, although we cannot exclude the possibility of residual confounding based on systemic comorbidities or hospital variation in practice. Future studies investigating this possible adverse effect seem warranted.


Assuntos
Hipertensão Pulmonar , Retinopatia da Prematuridade , Lactente , Recém-Nascido , Humanos , Masculino , Criança , Feminino , Retinopatia da Prematuridade/tratamento farmacológico , Fatores de Crescimento Endotelial/uso terapêutico , Inibidores da Angiogênese/efeitos adversos , Inibidores da Angiogênese/administração & dosagem , Recém-Nascido Prematuro , Hipertensão Pulmonar/etiologia , Hipertensão Pulmonar/induzido quimicamente , Estudos Retrospectivos , Fator A de Crescimento do Endotélio Vascular , Bevacizumab/efeitos adversos , Bevacizumab/administração & dosagem , Idade Gestacional , Lasers , Vasodilatadores
12.
Res Nurs Health ; 45(6): 717-732, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36059097

RESUMO

Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post-traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertainty about illness have been theorized as an antecedent to post-traumatic stress, however the relationship has not been explored in parents of infants requiring care in the NICU. The purpose of this prospective study was to explore parental uncertainty during and after NICU discharge and the relationship between uncertainty and PPTSD. The sample consisted of 319 parents during NICU hospitalization and 245 parents at 3 months postdischarge. Parents who screened positive for PPTSD 3 months after hospital discharge reported more uncertainty both while in the NICU and 3 months after hospital discharge (p < 0.001). In parents with a personal or family history of mental illness, the moderated/mediating structural probit analysis showed no direct or indirect effect of uncertainty during hospitalization or at 3 months after hospital discharge on screening positive for PPTSD. In parents who did not report personal or family history of mental illness, uncertainty at 3 months after hospital discharge had a direct effect (b = 0.678, p < 0.001) and indirect mediating effect (b = 0.276, p < 0.001) on screening positive for PPTSD. The results provide actionable implications for mental health and NICU providers: (1) routine screening for uncertainty and risk factors including previous personal and family history of mental illness, and (2) the development of NICU follow-up support services to mitigate risk for PPTSD.


Assuntos
Unidades de Terapia Intensiva Neonatal , Transtornos de Estresse Pós-Traumáticos , Recém-Nascido , Lactente , Humanos , Incerteza , Estudos Prospectivos , Assistência ao Convalescente , Alta do Paciente , Pais/psicologia
14.
J Pediatr ; 251: 105-112.e1, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35934128

RESUMO

OBJECTIVE: To test whether prospective classification of infants with bronchopulmonary dysplasia identifies lower-risk infants for discharge with home oxygen who have fewer rehospitalizations by 1 year after neonatal intensive care unit discharge. STUDY DESIGN: This is a prospective single-center cohort that included infants from 2016 to 2019 with bronchopulmonary dysplasia, defined as receiving respiratory support at 36 weeks of postmenstrual age. "Lower-risk" infants were receiving ≤2 L/min nasal cannula flow, did not have pulmonary hypertension or airway comorbidities, and had blood gas partial pressure of carbon dioxide <70 mm Hg. We compared 3 groups by discharge status: lower-risk room air, lower-risk home oxygen, and higher-risk home oxygen. The primary outcome was rehospitalization at 1 year postdischarge, and the secondary outcomes were determined by the chart review and parent questionnaire. RESULTS: Among 145 infants, 32 (22%) were lower-risk discharged in room air, 49 (32%) were lower-risk using home oxygen, and 64 (44%) were higher-risk. Lower-risk infants using home oxygen had rehospitalization rates similar to those of lower-risk infants on room air (18% vs 16%, P = .75) and lower rates than higher-risk infants (39%, P = .018). Lower-risk infants using home oxygen had more specialty visits (median 10, IQR 7-14 vs median 6, IQR 3-11, P = .028) than those on room air. Classification tree analysis identified risk status as significantly associated with rehospitalization, along with distance from home to hospital, inborn, parent-reported race, and siblings in the home. CONCLUSIONS: Prospectively identified lower-risk infants discharged with home oxygen had fewer rehospitalizations than higher-risk infants and used more specialty care than lower-risk infants discharged in room air.


Assuntos
Displasia Broncopulmonar , Recém-Nascido , Lactente , Humanos , Displasia Broncopulmonar/terapia , Recém-Nascido Prematuro , Estudos Prospectivos , Assistência ao Convalescente , Alta do Paciente , Oxigenoterapia , Oxigênio/uso terapêutico , Aceitação pelo Paciente de Cuidados de Saúde , Medição de Risco
16.
Pediatr Pulmonol ; 57(9): 2082-2091, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35578392

RESUMO

OBJECTIVE: To describe characteristics, outcomes, and risk factors for death or tracheostomy with home mechanical ventilation in full-term infants with chronic lung disease (CLD) admitted to regional neonatal intensive care units. STUDY DESIGN: This was a multicenter, retrospective cohort study of infants born ≥37 weeks of gestation in the Children's Hospitals Neonatal Consortium. RESULTS: Out of 67,367 full-term infants admitted in 2010-2016, 4886 (7%) had CLD based on receiving respiratory support at either 28 days of life or discharge. 3286 (67%) were still hospitalized at 28 days receiving respiratory support, with higher mortality risk than those without CLD (10% vs. 2%, p < 0.001). A higher proportion received tracheostomy (13% vs. 0.3% vs. 0.4%, p < 0.001) and gastrostomy (30% vs. 1.7% vs. 3.7%, p < 0.001) compared to infants with CLD discharged home before 28 days and infants without CLD, respectively. The diagnoses and surgical procedures differed significantly between the two CLD subgroups. Small for gestational age, congenital pulmonary, airway, and cardiac anomalies and bloodstream infections were more common among infants with CLD who died or required tracheostomy with home ventilation (p < 0.001). Invasive ventilation at 28 days was independently associated with death or tracheostomy and home mechanical ventilation (odds ratio 7.6, 95% confidence interval 5.9-9.6, p < 0.0001). CONCLUSION: Full-term infants with CLD are at increased risk for morbidity and mortality. We propose a severity-based classification for CLD in full-term infants. Future work to validate this classification and its association with early childhood outcomes is necessary.


Assuntos
Terapia Intensiva Neonatal , Pneumopatias , Criança , Pré-Escolar , Doença Crônica , Feminino , Hospitais Pediátricos , Humanos , Lactente , Recém-Nascido , Pneumopatias/epidemiologia , Pneumopatias/etiologia , Pneumopatias/terapia , Estudos Retrospectivos
17.
J Perinatol ; 42(8): 1110-1117, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35132150

RESUMO

OBJECTIVE: To describe an electronic parent support tool for the neonatal intensive care unit (NICU), and to assess whether support requests changed with staff availability. METHODS: We implemented secure text- or email-based parent support in the NICU and in the week after discharge. Questionnaires asked whether a parent would like psychology, social work, child life, chaplain, or post-discharge nurse support. Requested referrals were placed, and customized online resources and contacts were provided. We assessed whether requests changed based on in-person resource availability. RESULTS: Of 378 infants in our NICU from May to December, 202 parents agreed to participate. The proportion agreeing to participate increased over time (38-59%, p = 0.012). Post-discharge nurse requests decreased over time (90-45%, p = 0.033); other requests did not change significantly. CONCLUSIONS: An electronic tool increased parent support availability in the NICU and following discharge, even after staff were available at the bedside.


Assuntos
Unidades de Terapia Intensiva Neonatal , Alta do Paciente , Assistência ao Convalescente , Criança , Eletrônica , Humanos , Lactente , Recém-Nascido , Pais/psicologia
18.
J Pediatr ; 245: 39-46.e2, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35151681

RESUMO

OBJECTIVE: To examine factors associated with parent quality of life during and after neonatal intensive care unit (NICU) discharge among parents of infants with congenital anomalies admitted to the NICU. STUDY DESIGN: This secondary analysis of 2 prospective cohort studies between 2016 and 2020 at a level IV NICU included parents of infants with major congenital anomalies receiving NICU care. The primary outcomes were parent health-related quality of life (HRQL) during the NICU stay and at 3 months post-NICU discharge. RESULTS: A total of 166 parent-infant dyads were enrolled in the study, 124 of which completed the 3-month follow-up interview. During the NICU stay, parent history of a mental health disorder (-13 points), earlier gestational age (-17 points), consultation by multiple specialists (-11 points), and longer hospital stay (-5 points) were associated with lower HRQL. Parents of infants with a neonatal surgical anomaly had higher HRQL (+4 points). At 3 months after NICU discharge, parent receipt of a psychology consult in the NICU, the total number of consultants involved in the child's care, and an infant with a nonsurgical anomaly were associated with lower parent HRQL. Parents of infants with a gastrostomy tube (-6 points) and those with hospital readmission (-5 points) had lower HRQL. Comparing same-parent differences in HRQL over time, parents of infants with anomalies did not show significant improvement in HRQL on discharge home. CONCLUSION: Parents of infants with congenital anomalies reported low HRQL at baseline and at discharge. Parents of infants with nonsurgical, medically complex anomalies requiring multispecialty care represent a vulnerable group who could be better supported during and after their NICU stay.


Assuntos
Terapia Intensiva Neonatal , Qualidade de Vida , Criança , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Pais/psicologia , Estudos Prospectivos
19.
J Perinatol ; 42(1): 58-64, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34354227

RESUMO

OBJECTIVE: To compare three bronchopulmonary dysplasia (BPD) definitions against hospital outcomes in a referral-based population. STUDY DESIGN: Data from the Children's Hospitals Neonatal Consortium were classified by 2018 NICHD, 2019 NRN, and Canadian Neonatal Network (CNN) BPD definitions. Multivariable models evaluated the associations between BPD severity and death, tracheostomy, or length of stay, relative to No BPD references. RESULTS: Mortality was highest in 2019 NRN Grade 3 infants (aOR 225), followed by 2018 NICHD Grade 3 (aOR 145). Infants with lower BPD grades rarely died (<1%), but Grade 2 infants had aOR 7-21-fold higher for death and 23-56-fold higher for tracheostomy. CONCLUSIONS: Definitions with 3 BPD grades had better discrimination and Grade 3 2019 NRN had the strongest association with outcomes. No/Grade 1 infants rarely had severe outcomes, but Grade 2 infants were at risk. These data may be useful for counseling families and determining therapies for infants with BPD.


Assuntos
Displasia Broncopulmonar , Displasia Broncopulmonar/complicações , Canadá , Criança , Idade Gestacional , Hospitais , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro , Estudos Retrospectivos
20.
Artigo em Inglês | MEDLINE | ID: mdl-36590457

RESUMO

Purpose: Seventy percent of preterm infants experience challenges with oral feeding and commonly require tube feedings. Yet it is not well understood how these behaviors change over time while infants are receiving tube feedings only and through the transition to oral feedings. The purpose of this pilot study was to describe the change in behaviors surrounding feeding and with respect to advancing Post Menstrual Age (PMA) for preterm infants who received extended tube feedings during hospitalization in the Neonatal Intensive Care Unit (NICU). Methods and measures: A prospective pilot study was conducted in a NICU. We recruited thirty-five infants who were born between 28 to 32 weeks gestational age and expected to have at least two weeks of tube feedings. Infant health status and feeding progression were obtained from the medical record. Behaviors surrounding feeding included infant state, social interactive behaviors, orally directed behaviors, and hunger/satiation cues were evaluated via weekly recorded videos. Results: During the pre-feeding segment, we noted an increase over time for awake, facial gaze, gaze aversion, tongue protrusion, fussing, mouthing, vocalization, and interest in the pacifier. During the intra-feeding segment, we found an increase over time for fussing, and a decrease for eye widening, eye searching, and vocalization. Conclusion: To our knowledge, this was the first pilot study to comprehensively describe the changes in behaviors surrounding feeding over time and with respect to advancing PMA for preterm infants who received extended tube feedings during the NICU hospitalization. Infants demonstrated distinct behaviors surrounding feeding as young as 28 weeks post menstrual age. These behaviors may vary among infants and change significantly with advancing post-menstrual age. Assessment of subtle behaviors surrounding feeding is important to ensure oral feeding readiness.

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