Respiratory hospitalizations and ICU admissions among children with and without medical complexity at the end of the COVID-19 pandemic.

Decreased severe respiratory illness was observed during the first 2 years of the COVID-19 pandemic, with a relatively smaller decrease among children with medical complexity (CMC) compared to non-CMC. We extended this analysis to the third pandemic year (April 1, 2022, to March 31, 2023) when pandemic public health measures were loosened. A population-based repeated cross-sectional study evaluated respiratory hospitalizations among CMC and non-CMC (<18 years) in Ontario, Canada.

Characteristics and outcomes of home parenteral nutrition among children with severe neurological impairment.

Objectives: To describe the characteristics, secular trends, and outcomes of home parenteral nutrition (HPN) use among children with severe neurological impairment (SNI) and non-primary digestive disorders from 2010 to 2023 and compare outcomes to children with primary digestive disorders on HPN.

Methods: A retrospective review of all children with SNI and non-primary digestive disorders, where HPN was initiated between January 2010 and September 2023 at a tertiary care pediatric hospital. The Mann-Kendall trend test was used to assess trends in HPN initiation.

Out-of-pocket expenses reported by families of children with medical complexity.

Objectives: Due to their medical and technology dependence, families of children with medical complexity (CMC) have significant costs associated with care. Financial impact on families in general have been described, but detailed exploration of expenses in specific categories has not been systematically explored. Our objective was to describe out-of-pocket (OOP) expenses incurred by caregivers of CMC and to determine factors associated with increased expenditures.

Improved long-term outcome of children with congenital diarrhea followed by an intestinal rehabilitation program.

Background: Long-term outcomes of congenital diarrheas and enteropathies (CODE) are poorly described. We evaluated the morbidity and mortality of children with CODE followed by an intestinal rehabilitation program (IRP) compared to children with short bowel syndrome (SBS).

Methods: Matched case-control study of children with intestinal failure (IF) due to CODE (diagnosed between 2006 and 2020; N = 15) and SBS (N = 42), matched 1:3, based on age at diagnosis and duration of parenteral nutrition (PN).

Use of Latent Class Analysis to Predict Intensive Care Unit Admission and Mortality in Children with a Major Congenital Anomaly.

Objective: To define major congenital anomaly (CA) subgroups and assess outcome variability based on defined subgroups.

Study Design: This population-based cohort study used registries in Denmark for children born with a major CA between January 1997 and December 2016, with follow-up until December 2018. We performed a latent class analysis (LCA) using child and family clinical and sociodemographic characteristics present at birth, incorporating additional variables occurring until age of 24 months.

Small and large bowel anatomy is associated with enteral autonomy in infants with short bowel syndrome: A retrospective cohort study.

Background: Achievement of enteral autonomy (EA) is the ultimate treatment goal in pediatric intestinal failure (IF). We aimed to assess predictors of EA in pediatric short bowel syndrome (SBS) and explore the impact of residual small bowel (SB) and large bowel (LB) length on EA.

Methods: A retrospective cohort study was performed on infants aged <12 months (n = 367, six centers) with SBS referred between 2010 and 2015.

Severe Respiratory Disease Among Children With and Without Medical Complexity During the COVID-19 Pandemic.

Importance: Severe respiratory disease declined during the COVID-19 pandemic, partially due to decreased circulation of respiratory pathogens. However, the outcomes of children with higher risk have not been described using population-based data.

Objective: To compare respiratory-related hospitalizations, intensive care unit (ICU) admissions, and mortality during the pandemic vs prepandemic, among children with medical complexity (CMC) and without medical complexity (non-CMC).

Cost-utility analysis of teduglutide compared to standard care in weaning parenteral nutrition support in children with short bowel syndrome.

Background & Aims: A growing proportion of children with short bowel syndrome (SBS) remain dependent on long-term parenteral nutrition (PN). Teduglutide offers the potential for more children to decrease PN support and achieve enteral autonomy (EA), but at a significant expense. This study aims to assess the incremental costs of teduglutide plus standard of care compared to standard of care alone in weaning PN support per quality-adjusted life year (QALY) gained in children with SBS.

Body Composition and Physical Activity in Pediatric Intestinal Failure On and Off Parenteral Nutrition.

Objectives: Data on the relationship between body composition (BC) and physical activity (PA) in children with intestinal failure (IF) are lacking. The objectives were to collect data on PA and BC in children with IF, both parenterally and enterally fed, and to assess the relationship between PA and BC.

Methods: Cross-sectional study in children 5-18 years with IF including those receiving parenteral nutrition (PN) and those fully enterally fed.

Composite lipid emulsion use and essential fatty acid deficiency in pediatric patients with intestinal failure with high parenteral nutrition dependence: A retrospective cohort study.

Background: Reports of essential fatty acid deficiency (EFAD) in patients receiving parenteral nutrition (PN) and a composite lipid (mixed oil intravenous lipid emulsion [MO ILE]) are predominantly when managed by lipid restriction. The objective of this study was to determine the prevalence of EFAD in patients with intestinal failure (IF) who are PN dependent without lipid restriction.

Methods: We retrospectively evaluated patients, ages 0-17 years, followed by our intestinal rehabilitation program between November 2020 and June 2021 with PN dependency index (PNDI) of >80% on a MO ILE.

Assessment of body composition in pediatric intestinal failure: A comparison study.

Background: The objective of the study was to compare bioelectrical impedance analysis (BIA) and skinfolds with dual energy x-ray absorptiometry (DXA) in the assessment of body composition of children with intestinal failure. DXA is the reference method for body composition assessment in clinical settings.

Methods: Children aged 1-18 years with intestinal failure whohave DXA as part of routine clinical monitoring were eligible.

Intestinal failure among adults and children: Similarities and differences.

Intestinal failure (IF) is a complex medical condition that is caused by a constellation of disorders, resulting in the gut's inability to adequately absorb fluids and nutrients to sustain hydration, growth, and survival, thereby requiring the use of parenteral fluid and/or nutrition. Significant advancements in intestinal rehabilitation have resulted in improved survival rates for individuals with IF. There are distinct differences, however, related to etiology, adaptive potential and complications, and medical and surgical management when comparing children with adults.

Use of a combined transient elastography and biochemical strategy to determine liver fibrosis in pediatric intestinal failure.

Background & Aims: Non-invasive monitoring of intestinal failure (IF) associated liver disease is an ongoing challenge in children with IF. Our objective was to develop a combined algorithm of clinical, transient elastography (TE) and biochemical parameters to identify liver fibrosis in this population.

Methods: A retrospective cohort study of IF patients followed by our intestinal rehabilitation program between November 2015 to October 2019.

Predictors of Social-Emotional Development and Adaptive Functioning in School-Age Children with Intestinal Failure.

Objectives: Despite a focus on neurocognition in pediatric intestinal failure (IF) to date, we examined social-emotional and adaptive functioning.

Methods: Children (N = 63) in our IF rehabilitation program underwent neuropsychological assessments including caregiver- and teacher-reported questionnaires. Results were compared to norms using z-tests.

Stress, anxiety, depression, and health-related quality of life in caregivers of children with intestinal failure receiving parenteral nutrition: A cross-sectional survey study.

Background: Improved survival rates for children with intestinal failure (IF) have resulted in an increased population of children receiving long-term parenteral nutrition (PN). Our objective was to determine burden on caregivers of children with IF receiving long-term PN.

Methods: We performed a cross-sectional study of caregivers of children with IF receiving long-term PN in our intestinal rehabilitation program.

An international multicenter validation study of the Toronto listing criteria for pediatric intestinal transplantation.

Deciding which patients would benefit from intestinal transplantation (IT) remains an ethical/clinical dilemma. New criteria* were proposed in 2015: ≥2 intensive care unit (ICU) admissions, loss of ≥3 central venous catheter (CVC) sites, and persistently elevated conjugated bilirubin (CB ≥ 75 μmol/L) despite 6 weeks of lipid modification strategies. We performed a retrospective, international, multicenter validation study of 443 children (61% male, median gestational age 34 weeks [IQR 29-37]), diagnosed with IF between 2010 and 2015.

Muscle Strength, Agility, and Body Composition in Children With Intestinal Failure on Parenteral Nutrition.

Objectives: With increasing number of children with intestinal failure (IF) on long-term parenteral nutrition (PN), this study assesses the impact of IF on muscle strength, speed, and agility and body composition (BC), identifying clinical factors that may predict impairment.

Methods: Cross-sectional study in children 5-18 years with IF on PN. Assessments included Bruininks-Oseretsky Test of Motor Proficiency-2 strength and agility subtest (BOT-2), and grip strength.

Management of pediatric intestinal failure related to short bowel syndrome.

Intestinal failure (IF) secondary to short bowel syndrome is a challenging and complex medical condition with significant risk for surgical and medical complications. Significant advancements in the care of this patient population have led to improved survival rates. Due to their intensive medical needs children with IF are at risk for long-term complications that require comprehensive management and close monitoring.

Carrying the Burden: Informal Care Requirements by Caregivers of Children with Intestinal Failure Receiving Home Parenteral Nutrition.

Objective: To measure the time that caregivers spend on tasks related to providing care to their child with intestinal failure receiving home parenteral nutrition (PN).

Study Design: We conducted an exploratory cross-sectional study of caregivers of children with intestinal failure receiving long-term PN followed by our intestinal rehabilitation program. Caregivers completed a daily diary of care-related tasks.

"Line care governs our entire world": Understanding the experience of caregivers of children with intestinal failure receiving long-term parenteral nutrition.

Background: Children with intestinal failure (IF) receiving long-term parenteral nutrition (PN) require significant medical care, including high-risk procedures such as accessing a central venous catheter, with the majority provided by family caregivers in the home. This study sought to understand the experiences of family caregivers.

Methods: This was a qualitative study of family caregivers of children with IF.

Normal anthropometry does not equal normal body composition in pediatric intestinal failure.

Background: Published reports on abnormal body composition in pediatric patients with intestinal failure have been in patients with poor growth. The goal of the current study is to report the body composition of normally growing patients with intestinal failure.

Methods: Children 8-18 years old with a dual-energy x-ray absorptiometry (DXA) between January 1, 2013, and July 15, 2018, were included in the study.