The Current State of Neonatal Neurodevelopmental Follow-up Programs in North America: A Children's Hospitals Neonatal Consortium Report.

OBJECTIVE: This study aimed to determine neonatal neurodevelopmental follow-up (NDFU) practices across academic centers. STUDY DESIGN: This study was a cross-sectional survey that addressed center-specific neonatal NDFU practices within the Children's Hospitals Neonatal Consortium (CHNC). RESULTS: Survey response rate was 76%, and 97% of respondents had a formal NDFU program. Programs were commonly staffed by neonatologists (80%), physical therapists (77%), and nurse practitioners (74%). Median gestational age at birth identified for follow-up was ≤32 weeks (range 26-36). Median duration was 3 years (range 2-18). Ninety-seven percent of sites used Bayley Scales of Infant and Toddler Development, but instruments used varied across ages. Scores were recorded in discrete electronic data fields at 43% of sites. Social determinants of health data were collected by 63%. Care coordination and telehealth services were not universally available. CONCLUSION: NDFU clinics are almost universal within CHNC centers. Commonalities and variances in practice highlight opportunities for data sharing and development of best practices. KEY POINTS: · Neonatal NDFU clinics help transition high-risk infants home.. · Interdisciplinary neonatal intensive care unit follow-up brings together previously separated outpatient service lines.. · This study reviews the current state of neonatal NDFU in North America..

Withdrawal of Life-Support in Neonatal Hypoxic-Ischemic Encephalopathy.

PURPOSE: We describe the frequency and timing of withdrawal of life-support (WLS) in moderate or severe hypoxic-ischemic encephalopathy (HIE) and examine its associations with medical and sociodemographic factors. PROCEDURES: We undertook a secondary data analysis of a prospective multicenter data registry of regional level IV Neonatal Intensive Care Units participating in the Children's Hospitals Neonatal Database. Infants ≥36 weeks gestational age with HIE admitted to a Children's Hospitals Neonatal Database Neonatal Intensive Care Unit between 2010 and 2016, who underwent therapeutic hypothermia were categorized as (1) infants who died following WLST and (2) survivors with severe HIE (requiring tube feedings at discharge). RESULTS: Death occurred in 267/1,925 (14%) infants with HIE, 87.6% following WLS. Compared to infants with WLS (n = 234), the survived severe group (n = 74) had more public insurance (73% vs 39.3%, P = 0.00001), lower household income ($37,020 vs $41,733, P = 0.006) and fewer [20.3% vs 35.0%, P = 0.0212] were from the South. Among infants with WLS, electroencephalogram was performed within 24 hours in 75% and was severely abnormal in 64% cases; corresponding rates for MRI were 43% and 17%, respectively. Private insurance was independently associated with WLS, after adjustment for HIE severity and center. CONCLUSIONS: In a multicenter cohort of infants with HIE, WLS occurred frequently and was associated with sociodemographic factors. The rationale for decision-making for WLS in HIE require further exploration.

Characteristics Associated With Preferences for Parent-Centered Decision Making in Neonatal Intensive Care.

Importance: Little is known about how characteristics of particular clinical decisions influence decision-making preferences by patients or their surrogates. A better understanding of the factors underlying preferences is essential to improve the quality of shared decision making. Objective: To identify the characteristics of particular decisions that are associated with parents' preferences for family- vs medical team-centered decision making across the spectrum of clinical decisions that arise in the neonatal intensive care unit (NICU). Design, Setting, and Participants: This cross-sectional survey assessed parents' preferences for parent- vs medical team-centered decision making across 16 clinical decisions, along with parents' assessments of 7 characteristics of those decisions. Respondents included 136 parents of infants in 1 of 3 academically affiliated hospital NICUs in Philadelphia, Pennsylvania, from January 7 to July 8, 2016. Respondents represented a wide range of educational levels, employment status, and household income but were predominantly female (109 [80.1%]), white (68 [50.0%]) or African American (53 [39.0%]), and married (81 of 132 responding [61.4%]). Main Outcomes and Measures: Preferences for parent-centered decision making. For each decision characteristic (eg, urgency), multivariable analyses tested whether middle and high levels of that characteristic (compared with low levels) were associated with a preference for parent-centered decision making, resulting in 2 odds ratios (ORs) per decision characteristic. Results: Among the 136 respondents (109 women [80.1%] and 27 men [19.9%]; median age, 30 years [range, 18-43 years]), preferences for parent-centered decision making were positively associated with decisions that involved big-picture goals (middle OR, 2.01 [99% CI, 0.83-4.86]; high OR, 3.38 [99% CI, 1.48-7.75]) and that had the potential to harm the infant (middle OR, 1.32 [99% CI, 0.84-2.08]; high OR, 2.62 [99% CI, 1.67-4.11]). In contrast, preferences for parent-centered decision making were inversely associated with the following 4 decision characteristics: technical decisions (middle OR, 0.82 [99% CI, 0.45-1.52]; high OR, 0.48 [99% CI, 0.25-0.93]), the potential to benefit the infant (middle OR, 0.42 [99% CI, 0.16-1.05]; high OR, 0.21 [99% CI, 0.08-0.52]), requires medical expertise (middle OR, 0.48 [99% CI, 0.22-1.05]; high OR, 0.21 [99% CI, 0.10-0.48]), and a high level of urgency (middle OR, 0.47 [99% CI, 0.24-0.92]; high OR, 0.42 [99% CI, 0.22-0.83]). Conclusions and Relevance: Preferences for parent-centered vs medical team-centered decision making among parents of infants in the NICU may vary systematically by the characteristics of particular clinical decisions. Incorporating this variation into shared decision making and endorsing models that allow parents to cede control to physicians in appropriate clinical circumstances might improve the quality and outcomes of medical decisions.

Intercenter Cost Variation for Perinatal Hypoxic-Ischemic Encephalopathy in the Era of Therapeutic Hypothermia.

OBJECTIVE: To quantify intercenter cost variation for perinatal hypoxic ischemic encephalopathy (HIE) treated with therapeutic hypothermia across children's hospitals. STUDY DESIGN: Prospectively collected data from the Children's Hospitals Neonatal Database and Pediatric Health Information Systems were linked to evaluate intercenter cost variation in total hospitalization costs after adjusting for HIE severity, mortality, length of stay, use of extracorporeal support or nitric oxide, and ventilator days. Secondarily, costs for intensive care unit bed, electroencephalography (EEG), and laboratory and neuroimaging testing were also evaluated. Costs were contextualized by frequency of favorable (survival with normal magnetic resonance imaging) and adverse (death or need for gastric tube feedings at discharge) outcomes to identify centers with relative low costs and favorable outcomes. RESULTS: Of the 822 infants with HIE treated with therapeutic hypothermia at 19 regional neonatal intensive care units, 704 (86%) survived to discharge. The median cost/case for survivors was $58 552 (IQR $32 476-$130 203) and nonsurvivors $29 760 (IQR $16 897-$61 399). Adjusting for illness severity and select interventions, intercenter differences explained 29% of the variation in total hospitalization costs. The widest cost variability across centers was EEG use, although low cost and favorable outcome centers ranked higher with regards to EEG costs. CONCLUSIONS: There is marked intercenter cost variation associated with treating HIE across regional children's hospitals. Our investigation may help establish references for cost and enhance quality improvement and resource utilization projects related to HIE.