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Curated by Dr. Paul Wales From 2 sources across the library

Neurodevelopmental & Psychosocial Outcomes

items total cited expert statements Updated Nov 6, 2026
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Infant & Early Childhood2 items
Early neurodevelopmental outcomes of infants with intestinal failure
Background: The survival rate of infants and children with intestinal failure is increasing, necessitating a greater focus on their developmental trajectory. Aims: To evaluate neurodevelopmental outcomes in children with intestinal failure
article · Nov 2026
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Neurodevelopmental outcomes of infants with intestinal failure at 12 and 26 months corrected age
Background: Survival rates of infants with intestinal failure (IF) are increasing, yet multiple medical factors may impact development. Aims: This study examines neurodevelopmental outcomes at 12-15 and 26-32 months corrected age in a cohor
article · Nov 2026
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School-Age & Adolescent3 items
Motor and cognitive outcomes in pediatric intestinal failure: A longitudinal cohort study
Background: Improved survival in pediatric intestinal failure (IF) necessitates a focus on neurodevelopmental outcomes. Existing cross-sectional research demonstrates increased risk of developmental delay. This novel study explores longitud
article · Nov 2026
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Predictors of Social-Emotional Development and Adaptive Functioning in School-Age Children with Intestinal Failure.
Despite a focus on neurocognition in pediatric intestinal failure (IF) to date, we examined social-emotional and adaptive functioning. Children (N = 63) in our IF rehabilitation program underwent neuropsychological assessments including car
article · Nov 2026
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Motor Proficiency and Generalized Self-Efficacy Toward Physical Activity in Children With Intestinal Failure
Objective: Survival rates of children with intestinal failure have increased; however, associated co-morbidities may affect long-term motor developmental outcomes. This study evaluates motor proficiency and generalized self-efficacy toward
article · Nov 2026
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Health-Related Quality of Life in Pediatric Intestinal Failure from Infancy to Adolescence: An International, Multi-Center Evaluation
Objective: To evaluate health-related quality of life (HRQOL) and associated factors in pediatric intestinal failure (PIF) using a prospective, multi-institutional structure. Study Design: HRQOL in 336 children with PIF was assessed using t
article · Nov 2026
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Caregiver Burden & Stress4 items
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 childre
article · Nov 2026
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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 care
article · Nov 2026
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"Line care governs our entire world": Understanding the experience of caregivers of children with intestinal failure receiving long-term parenteral nutrition.
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 caregiver
article · Nov 2026
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Supporting families managing home TPN and preventing caregiver burnout
Dr. Paul Wales, Surgical Director of Intestinal Rehabilitation at Cincinnati Children's, discusses the significant responsibilities families undertake when caring for patients on home Total Parenteral Nutrition (TPN). He highlights tasks li
video0:25 · Nov 2026
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Impact of social determinants of health on outcomes in pediatric short bowel syndrome
Objective: To determine the impact of social determinants of health (SDOH) on outcomes in pediatric short bowel syndrome (SBS) patients. Methods: A retrospective cohort of SBS children managed by an Intestinal Rehabilitation Program was ana
article · Nov 2026
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