Early neurodevelopmental follow-up in the NICHD neonatal research network: Advancing neonatal care and outcomes, opportunities for the future.

At the inception of the Eunice Kennedy Shriver National Institute of Child Health and Development Neonatal Research Network (NRN), provision of care for extremely preterm (EPT) infants was considered experimental. The NRN Follow-up Study Group, initiated in 1993, developed infrastructure with certification processes and standards, allowing the NRN to assess 2-year outcomes for EPT and to provide important metrics for randomized clinical trials. This chapter will review the NRN Follow-up Study Group's contributions to understanding factors related to improved neurodevelopmental, behavioral, and social-emotional outcomes of EPT infants.

Impact of COVID-19 on Admissions and Outcomes for Children With Complex Chronic Conditions.

Background: Although pediatric health care use declined during the coronavirus disease 2019 (COVID-19) pandemic, the impact on children with complex chronic conditions (CCCs) has not been well reported.

Objective: To describe the impact of the pandemic on inpatient use and outcomes for children with CCCs.

Methods: This multicenter cross-sectional study used data from the Pediatric Health Information System.

Qualitative indications for tracheostomy and chronic mechanical ventilation in patients with severe bronchopulmonary dysplasia.

Background: The decision to pursue chronic mechanical ventilation involves a complex mix of clinical and social considerations. Understanding the medical indications to pursue tracheostomy would reduce the ambiguity for both providers and families and facilitate focus on appropriate clinical goals.

Objective: To describe potential indications to pursue tracheostomy and chronic mechanical ventilation in infants with severe BPD (sBPD).

Readmissions Following Hospitalization for Infection in Children With or Without Medical Complexity.

Objective: To describe the prevalence and characteristics of infection-related readmissions in children and to identify opportunities for readmission reduction and estimate associated cost savings.

Study Design: Retrospective analysis of 380,067 nationally representative index hospitalizations for children using the 2014 Nationwide Readmissions Database. We compared 30-day, all-cause unplanned readmissions and costs across 22 infection categories.

Health-related quality of life in children with chronic kidney disease is affected by the number of medications.

Introduction: The number of medications could serve as a surrogate for burden of care at home and may affect health-related quality of life (HRQoL) in children with chronic kidney disease (CKD).

Methods: Using baseline data from the Chronic Kidney Disease in Children (CKiD) Study, we modeled HRQoL scores, self-reported by the child (if ≥ 8 years old) and/or caregiver (all children) on unique counts and administrations of CKD- and non-CKD-related medications, using multivariate linear regression. Heterogeneity of associations between HRQoL and medication burden by age group (≥ 8 vs.

Utilization of the Naranjo scale to evaluate adverse drug reactions at a free-standing children's hospital.

The relationship between the Naranjo scaling system and pediatric adverse drug reactions (ADR) is poorly understood. We performed a retrospective review of 1,676 pediatric ADRs documented at our hospital from 2014-2018. We evaluated patient demographics, implicated medication, ADR severity, calculated Naranjo score, associated symptoms, and location within the hospital in which the ADR was documented.

The conchal butterfly graft in secondary reconstruction of the bilateral cleft lip nasal deformity.

Objectives: The bilateral cleft nasal deformity is characterized by a short columella and a broad, flattened nasal tip. Secondary correction is challenging and often complicated by skin envelope scarring and hypoplastic alar cartilages. Adequate and durable tip projection requires a procedure that adequately augments the nasal tip and maximizes tip support.

Impact of tracheostomy on language and cognitive development in infants with severe bronchopulmonary dysplasia.

Objective: The impact of tracheostomy on language and cognitive development in infants with severe bronchopulmonary dysplasia (BPD) is not known. We hypothesize that tracheostomy has an independent negative impact on language and cognitive development in infants with severe BPD.

Study Design: This is a retrospective cohort study of de-identified data of infants with severe BPD who received tracheostomy at <2 years of age, compared with infants with severe BPD without tracheostomy.

National Cooperative Growth Study: 25 Years of Growth Hormone Data, Insights, and Lessons for Future Registries.

Background: The National Cooperative Growth Study (NCGS) data are reviewed from 1985-2010 to report on final demographic, efficacy, and safety findings, and to illustrate the value of long-term, real-world follow-up to physicians and patients.

Methods: The NCGS was a multicenter, open-label, observational, postmarketing surveillance study of Genentech growth hormone (GH) products for the treatment of children with growth failure in North America.

Findings: Data from 65,205 patients representing 240,951 patient-years of experience were collected.

Prognostic neurodevelopmental testing of preterm infants: do we need to change the paradigm?

Longitudinal follow-up with assessment of developmental status at about 2 years of age is routine for high-risk newborns. The results of these assessments can be used for many purposes, including helping physicians, parents, and teachers plan educational or developmental interventions. These assessments also provide outcome measures for clinical research studies.