Early childhood developmental skills of children with tracheostomies and ventilators recently discharged home

Abstract

Background Infants who survive prematurity and critical illnesses but require ongoing invasive mechanical ventilation (IMV) are at high risk for developmental disabilities. However, their detailed developmental profiles are largely unknown. Objective To understand the developmental profiles of a cohort of young children with IMV after hospital‐to‐home transition. Design/methods Developmental testing was completed 1 month after hospital discharge to determine functioning within motor, cognitive, and communicative domains using (1) the Clinical Adaptive Test/Clinical Linguistic and Auditory Milestone Scale (CAT/CLAMS); (2) the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI‐CAT); and (3) The Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA‐FS). To complement validated testing, semi‐structured interviews were conducted with parents to understand perceived influences on neurodevelopment. Results Twenty children were evaluated at median (range) age 11 (5–27) months. Nearly half (45%) were male, 40% non‐Hispanic Black, and 25% Hispanic. Sixteen (80%) children were survivors of prematurity. After gestational age correction, median (range) full‐scale developmental quotients (DQ) were 69.5 (8–119): CAT DQ 62.5 (3–113) and CLAMS DQ 71.5 (12–125). Parents described that prolonged restriction within the hospital crib away from caregivers, despite hospital therapists, impedes development. Home environments improve development primarily through increased time with parents, but also play outside of the crib. One month after hospital discharge only 10% were receiving early intervention therapies. Conclusions/significance Children with IMV display wide ranges of neurodevelopmental skills with a majority experiencing substantial delays in motor, communicative, and adaptive functioning. The degree and cross‐domain challenges highlight the need for targeted and timely therapeutic strategies.

Time‐motion observations to characterize the developmental environment in a paediatric post‐acute care hospital

“…A growing number of CMC spend significant parts of their lives hospitalized, often in intensive care units (Horak et al, 2019). Hospital rooms are not developmentally optimal environments (Blackburn, 1998; Hartman et al, 2020; Sobotka et al, 2021). The lack of literature describing patient movements in paediatric hospitals exemplifies how little attention this topic has received and how challenging it is to facilitate time out of bed for children with high medical needs.…”

Predictors for invasive home mechanical ventilation duration in bronchopulmonary dysplasia

“…1 While IHMV provides essential life-sustaining support to children, IHMV serves an important role in enabling children to be discharged home to a more developmentally long-term care environment compared to the hospital setting. 9,10 However, IHMV can limit patient development and social participation, 9,11 negatively impact family well-being, [11][12][13][14][15] and lead to high-cost equipment rental and home nursing service expenditures. 16,17 Understanding which factors contribute to the duration of time children with BPD spend on IHMV remains an understudied area.…”

“…In one estimate, the number of children with severe BPD reliant on invasive home mechanical ventilation (IHMV) has quadrupled from 1.2 per 100,000 to 4.8 per 100,000 between 1984 and 2010 1 . While IHMV provides essential life‐sustaining support to children, IHMV serves an important role in enabling children to be discharged home to a more developmentally long‐term care environment compared to the hospital setting 9,10 . However, IHMV can limit patient development and social participation, 9,11 negatively impact family well‐being, 11–15 and lead to high‐cost equipment rental and home nursing service expenditures 16,17 …”

Codesign of remote data collection for chronic management of pediatric home mechanical ventilation

“…[1][2][3] When children with IHMV are discharged home, they require longitudinal monitoring to optimize growth and development while minimizing morbidity. 4,5 The level of ventilatory support a child on IHMV receives may change as a child grows or as their underlying conditions improve or worsen. 6,7 However, access to IHMV outpatient care to adjust ventilator support can be disrupted by transportation limitations, clinic space availability, and other structural barriers to care.…”

“…Children who require invasive home mechanical ventilation (IHMV) via tracheostomy are medically fragile, with complex daily medical needs and high healthcare costs 1–3 . When children with IHMV are discharged home, they require longitudinal monitoring to optimize growth and development while minimizing morbidity 4,5 . The level of ventilatory support a child on IHMV receives may change as a child grows or as their underlying conditions improve or worsen 6,7 .…”