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Dev Med Child Neurol. 2020 Feb;62(2):201-206. doi: 10.1111/dmcn.14326. Epub 2019 Aug 1.

Core outcome set for children with neurological impairment and tube feeding.

Author information

1
Child Health Evaluative Sciences, The Hospital for Sick Children Research Institute, Toronto, Ontario, Canada.
2
Division of Paediatric Medicine, Department of Paediatrics, Hospital for Sick Children, Toronto, Ontario, Canada.
3
Institute for Health Policy, Management and Evaluation, Toronto, Ontario, Canada.
4
Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada.
5
CanChild Centre for Childhood Disability Research, Hamilton, Ontario, Canada.
6
Paediatrics Outcomes Research Team, Division of Paediatric Medicine, Department of Paediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada.

Abstract

in English, Portuguese, Spanish

AIM:

To develop a core outcome set (COS) for evaluating gastrostomy/gastrojejunostomy tube impact in children with neurological impairment.

METHOD:

Healthcare providers/researchers and caregivers rated the importance of candidate outcomes on a 5-point Likert scale. Outcomes rated 'somewhat important' or 'very important' by most (≥85%) respondents were voted on during a consensus meeting. Outcomes that reached consensus for inclusion were ratified and assigned to Outcome Measures in Rheumatology filter core areas. The COS was validated in a separate group of caregivers.

RESULTS:

Twelve outcomes were selected from 120 candidate outcomes to form the COS. These included five 'Life Impact' outcomes, three 'Pathophysiological Manifestations' outcomes, two 'Resource Use' outcomes, one 'Growth and Development' outcome, and one 'Death' outcome.

INTERPRETATION:

We developed an evidence-informed and consensus-based COS for use in studies of gastrostomy/gastrojejunostomy tube feeding in children with neurological impairment. Implementation of this COS will help reduce heterogeneity between studies and facilitate evidence-based decision-making.

WHAT THE PAPER ADDS:

Caregivers, healthcare providers, and researchers ranked the importance of 120 outcomes. Twelve core outcomes were identified as essential to measure in future clinical research studies.

PMID:
31372989
DOI:
10.1111/dmcn.14326

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