Feeding outcomes in tracheostomy-dependent infants - can we predict future gastrostomy tube use?

OBJECTIVES: To identify characteristics of infants with tracheostomy that require gastrostomy tube insertion versus those likely to orally feed to predict which patients may benefit from insertion of gastrostomy at the time of tracheostomy placement. METHODS: Retrospective review of infants undergoing tracheostomy from birth to 18 months of age. The primary outcome was to identify pre-operative factors predictive of future gastrostomy tube use. Univariate and multivariate analyses evaluated association between pre-operative patient characteristics and feeding outcomes. RESULTS: Of 103 patients identified, 73 met inclusion criteria. Upper airway anomaly was the indication for tracheostomy in 70.4 %. Gastrostomy tube was required in 52 patients (75.4 %), with 7 (13.5 %) placed concurrently with tracheostomy. Infants with birth complications, a neurologic diagnosis, multiple co-morbidities, or identified with aspiration risk were more likely to require a gastrostomy tube (p < 0.05). CONCLUSIONS: Most infants who require tracheostomy placement from birth until 18 months of age will require nutritional support. Tracheostomy and gastrostomy are uncommonly placed concurrently. Coordination of placement would theoretically minimize the risk of general anesthetic exposure while potentially reducing hospital length of stay and healthcare related costs.

Utility of Genetic Testing from the Perspective of Parents/Caregivers: A Scoping Review.

In genomics, perceived and personal utility have been proposed as constructs of value that include the subjective meanings and uses of genetic testing. Precisely what constitutes these constructs of utility and how they vary by stakeholder perspective remains unresolved. To advance methods for measuring the value of genetic testing in child health, we conducted a scoping review of the literature to characterize utility from the perspective of parents/caregivers. Peer reviewed literature that included empiric findings from parents/caregivers who received genetic test results for an index child and was written in English from 2016-2020 was included. Identified concepts of utility were coded according to Kohler's construct of personal utility. Of 2142 abstracts screened, 33 met inclusion criteria. Studies reflected a range of genetic test types; the majority of testing was pursued for children with developmental or neurodevelopmental concerns. Coding resulted in 15 elements of utility that mapped to Kohler's four domains of personal utility (affective, cognitive, behavioural and social) and one additional medical management domain. An adapted construct of utility for parents/caregivers may enable specific and standardized strategies for researchers to use to generate evidence of the post-test value of genetic testing. In turn, this will contribute to emerging methods for health technology assessment and policy decision making for genomics in child health.