A Core Outcome Set For Children With Feeding Tubes And Neurologic Impairment: A Systematic Review

Title

A Core Outcome Set For Children With Feeding Tubes And Neurologic Impairment: A Systematic Review

Creator

Mufiza Z Kapadia; Kariym C Joachim; Chrinna Balasingham; Eyal Cohen; Mahant Sanjay; Katherine Nelson; Jonathon L Maguire; Astrid Guttmann; Martin Offringa

Identifier

10.1542/peds.2015-3967

Publisher

Pediatrics

Date

2016

Subject

Brain-damaged Children; Home Enteral Nutrition; Quality Of Life; Video-assisted Gastrostomy; Percutaneous Endoscopic Gastrostomy; Randomized Controlled-trials; Severe Cerebral-palsy; Single-center Experience; Clinical-trials; Pediatrics; Gastroesophageal-reflux; Neurologic Manifestations Of General Diseases; Research; Child; Health Aspects

Description

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.

Rights

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Citation List Month

July 2016 List

Citation

Mufiza Z Kapadia; Kariym C Joachim; Chrinna Balasingham; Eyal Cohen; Mahant Sanjay; Katherine Nelson; Jonathon L Maguire; Astrid Guttmann; Martin Offringa, “A Core Outcome Set For Children With Feeding Tubes And Neurologic Impairment: A Systematic Review,” Pediatric Palliative Care Library, accessed March 29, 2024, https://pedpalascnetlibrary.omeka.net/items/show/10513.