A Core Outcome Set for Children With Feeding Tubes and Neurologic Impairment: A Systematic Review.

Abstract

Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting. To synthesize an evidence base of qualitative data on all outcomes selected and/or reported for neurologically impaired children 0 to 18 years living with gastrostomy/gastrojejunostomy tubes. Medline, Embase, and Cochrane Register databases searched from inception to March 2014. Articles examining health outcomes of neurologically impaired children living with feeding tubes. Outcomes were extracted and assigned to modified Outcome Measures in Rheumatology 2.0 Filter core areas; death, life impact, resource use, pathophysiological manifestations, growth and development. We identified 120 unique outcomes with substantial heterogeneity in definition, measurement, and frequency of selection and/or reporting: "pathophysiological manifestation" outcomes (n = 83) in 79% of articles; "growth and development" outcomes (n = 13) in 55% of articles; "death" outcomes (n = 3) and "life impact" outcomes (n = 17) in 39% and 37% of articles, respectively; "resource use" outcomes (n = 4) in 14%. Weight (50%), gastroesophageal reflux (35%), and site infection (25%) were the most frequently reported outcomes. We were unable to investigate effect size of outcomes because quantitative data were not collected. The paucity of outcomes assessed for life impact, resource use and death hinders meaningful evidence synthesis. A COS could help overcome the current wide heterogeneity in selection and definition. These results will form the basis of a consensus process to produce a final COS.