OBJECTIVE: To measure the appropriateness of end-of-life care for children who died with neurological conditions. STUDY DESIGN: Based on linked routinely collected databases, we conducted a population-level decedent retrospective cohort study of…
OBJECTIVE: To identify demographic, clinical, and hospital factors associated with mortality on readmission within 180 days following an inpatient hospitalization. STUDY DESIGN: We conducted a retrospective cohort study including 33 US children's…
Objective: To understand what considerations drive family decisions for, and against, pediatric home ventilation. Study design: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3…
Objectives: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. Study design: We first convened an expert panel of…
Objective: To describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016. Study design: Retrospective cohort study of patients…
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the…
Objectives: To evaluate factors associated with admission from emergency department (ED) encounters for children with medical complexity (CMC) and to quantify the hospital admission rate as well as variation in adjusted hospital admission rates…
Objective: Our objective was to characterize sleep-disordered breathing in 88 children with achondroplasia aged 1 month to 12.6 years. Results: At the time of their initial polysomnography, five children had previously undergone tracheostomy, and…
Objectives: To determine whether patients with ataxia-telangiectasia exhibit oropharyngeal dysphagia with concomitant aspiration and to examine the relationships among swallowing function, age, and nutritional status. Study design: Seventy patients…
OBJECTIVE: To describe children's anxiety, depression, behaviors, and school performance at 2-13 months after sibling neonatal/pediatric intensive care unit (NICU/PICU) or emergency department (ED) death and compare these outcomes by child age, sex,…
OBJECTIVE: To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY DESIGN: In this qualitative study…
OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of…
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was…
OBJECTIVE: To assess the influence of resiliency and stress on parental perspectives of the future quality of life (QOL) of neonatal intensive care unit (NICU) newborns at high risk of neurodevelopmental disability. STUDY DESIGN: We conducted a…
OBJECTIVE: Well-child visits (WCVs) help optimize children's health. We measured annual WCVs for children with medical complexity (CMC) and correlated WCVs with hospitalizations. STUDY DESIGN: This was a retrospective analysis of 93 121 CMC aged 1-18…
OBJECTIVE: To determine how parents of infants in the neonatal intensive care unit with a poor or uncertain prognosis view their experience, and whether they view their choices as "worth it," regardless of outcome. STUDY DESIGN: Parents of eligible…
CONCLUSIONS: Although death in the NICU often has a brief course, consequences for survivor siblings can be life-long. Siblings born both before and after the death of an infant may be at risk and in need of psychological support. Family rituals and…
OBJECTIVE: To identify the characteristics of the subset of children with malignancy in whom massive opioid infusions are needed during the terminal phase. DESIGN: Retrospective review of the records of the 199 patients who died of malignancy after…
OBJECTIVES: (1) To determine the pharmacokinetics of morphine, morphine-6-glucuronide (M6G), and morphine-3-glucuronide (M3G) in children with cancer receiving morphine as immediate-release morphine liquid or sustained-release tablets. (2) To…
A randomized, double-blind, prospective study was performed to determine the effects of perioperative administration of morphine or methadone on postoperative analgesic requirements and pain scores in 35 children aged 3 to 7 years undergoing major…
OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The…
OBJECTIVES:
To quantify the use of adult-trained medical subspecialists by children and to determine the association between geographic access to pediatric subspecialty care and the use of adult-trained subspecialists. Children with limited access to…
