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A Core Outcome Set for Children With Feeding Tubes and Neurologic Impairment: A Systematic Review
Mufiza Z Kapadia1, Kariym C Joachim2, Chrinna Balasingham2
1Toronto Outcomes Research in Child Health (TORCH), Child Health Evaluative Sciences, mufiza.farid@gmail.com.
Insights
This study synthesized outcomes for neurologically impaired children with feeding tubes, finding 120 unique outcomes but limited data on life impact and resource use. A core outcome set (COS) is needed to standardize reporting.
Area of Science:
- Pediatric Health Outcomes
- Neurology
- Medical Devices
Background:
- Feeding tubes are common for neurologically impaired children, but their impact on outcomes is unclear.
- Standardized outcome reporting is lacking, hindering evidence synthesis.
Purpose of the Study:
- To synthesize qualitative data on all outcomes reported for neurologically impaired children (0-18 years) with gastrostomy/gastrojejunostomy tubes.
- To identify the heterogeneity in outcome selection, definition, and measurement.
Main Methods:
- Systematic literature search of Medline, Embase, and Cochrane Register databases (inception to March 2014).
- Extraction of health outcomes from articles on neurologically impaired children with feeding tubes.
- Categorization of outcomes using modified Outcome Measures in Rheumatology 2.0 Filter criteria.
Main Results:
- 120 unique outcomes were identified, showing significant heterogeneity.
- "Pathophysiological manifestation" outcomes were most frequent (n=83), followed by "growth and development" (n=13).
- Weight, gastroesophageal reflux, and site infection were the most commonly reported outcomes.
Conclusions:
- There is a paucity of data on life impact, resource use, and death outcomes.
- Significant heterogeneity in outcome reporting hinders evidence synthesis.
- Developing a core outcome set (COS) is crucial for standardizing outcome assessment in this population.
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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