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Core outcome set for children with neurological impairment and tube feeding

Kariym C Joachim1, Mufiza Farid-Kapadia1, Nancy J Butcher1

  • 1Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Ontario, Canada.

Developmental Medicine and Child Neurology
|August 3, 2019
PubMed

Insights

A core outcome set (COS) was developed to evaluate the impact of gastrostomy/gastrojejunostomy tubes in children with neurological impairment. This standardized set of 12 outcomes will improve research consistency and decision-making.

Area of Science:

  • Pediatric Gastroenterology
  • Clinical Outcomes Research
  • Neurology

Background:

  • Children with neurological impairment often require gastrostomy/gastrojejunostomy tubes for feeding.
  • Evaluating the impact of these tubes is crucial for patient care and research.
  • Existing research lacks a standardized approach to outcome measurement.

Framework:

  • A consensus-based approach was used to develop the core outcome set (COS).
  • Candidate outcomes were rated by healthcare providers, researchers, and caregivers.
  • Outcomes achieving high consensus were included in the final COS.

Implementation:

  • Twelve core outcomes were identified from an initial 120 candidate outcomes.
  • The COS includes measures of life impact, pathophysiological manifestations, resource use, growth, and mortality.
  • The developed COS was validated with a separate group of caregivers.

Implications:

  • The COS provides a standardized framework for evaluating gastrostomy/gastrojejunostomy tube impact in pediatric populations.
  • Implementation will reduce heterogeneity in clinical studies.
  • Facilitates evidence-based decision-making for improved patient outcomes and resource allocation.
Abstract

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