CONTEXT:

Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting.

OBJECTIVE:

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.

DATA SOURCES:

Medline, Embase, and Cochrane Register databases searched from inception to March 2014.

STUDY SELECTION:

Articles examining health outcomes of neurologically impaired children living with feeding tubes.

DATA EXTRACTION:

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.

RESULTS:

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.

LIMITATIONS:

We were unable to investigate effect size of outcomes because quantitative data were not collected.

CONCLUSIONS:

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.

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