Very Preterm Infants with Technological Dependence at Home: Impact on Resource Use and Family

Abstract

Objective: To examine the impact of medical complexity among very preterm infants on health care resource use, family, and neurodevelopmental outcomes at 18 months’ corrected age. Methods: This observational cohort study of Canadian infants born < 29 weeks’ gestational age in 2009–2011 compared infants with and those without medical complexity defined as discharged home with assistive medical technology. Health care resource use and family outcomes were collected. Children were assessed for cerebral palsy, deafness, blindness, and developmental delay at 18 months. Logistic regression analysis was performed for group comparisons. Results: Overall, 466/2,337 infants (20%) needed assistive medical technology at home including oxygen (79%), gavage feeding (21%), gastrostomy or ileostomy (20%), CPAP (5%), and tracheostomy (3%). Children with medical complexity were more likely to be re-hospitalized (OR 3.6, 95% CI 3.0–4.5) and to require ≥2 outpatient services (OR 4.4, 95% CI 3.5–5.6). Employment of both parents at 18 months was also less frequent in those with medical complexity compared to those without medical complexity (52 vs. 60%, p < 0.01). Thirty percent of children with medical complexity had significant neurodevelopmental impairment compared to 13% of those without medical complexity (p < 0.01). Lower gestational age, lower birth weight, bronchopulmonary dysplasia, sepsis, and surgical necrotizing enterocolitis were associated with a risk of medical complexity. Conclusion: Medical complexity is common following very preterm birth and has a significant impact on health care use as well as family employment and is more often associated with neurodevelopmental disabilities. Efforts should be deployed to facilitate care coordination upon hospital discharge and to support families of preterm children with medical complexity.

Interdisciplinary care of children with trisomy 13 and 18

“…Clinicians carry professional obligations to present balanced information, to not only elicit family values but to also consider offering professional guidance and medical recommendations regarding escalation of technology unique for each child's circumstance (Wilfond, 2014). Technology advancement warrants open conversation about not only the mechanisms of a tracheostomy or home ventilator, but also open discussion on the impact to family sleep patterns and sustained parental employment due to hands‐on care needs for the child in order for families to make truly informed and insightful decisions (Hammer, 2000; Lazzarin, Schiavon, Brugnaro, & Benini, 2018; Nassel et al, 2019). While tracheostomy placement may seem like a straightforward surgical step, the procedure represents a significant shift in family caregiver duties and becoming “a semipermanent resident of the healthcare system, dependent on artificial support for survival” (Venkat, 2013).…”

Predictors of home oxygen duration in chronic neonatal lung disease

“…Centers may consider PSG to evaluate the need for pressure support in infants who have evidence of alveolar hypoventilation (more than 25% of the total sleep time with pCO 2 > 50 mmHg) 39 but it is unclear which infants with moderate to severe hypercapnia benefit from pressure support over supplemental oxygen. A Canadian retrospective cohort study identified that of infants born at GA < 29 weeks, only 0.9% and 0.6% were discharged on noninvasive ventilation (NIV) or tracheostomy ventilation respectively 40 . The indications for initiating NIV were not stated.…”

Predictors of home oxygen duration in chronic neonatal lung disease

“…A Canadian retrospective cohort study identified that of infants born at GA < 29 weeks, only 0.9% and 0.6% were discharged on non-invasive ventilation (NIV) or tracheostomy ventilation respectively. 42 The indications for initiating NIV were not stated. After laryngomalacia, CNLD was the second most common indication for home CPAP over a period of 10 years at Westmead Children's Hospital.…”