Core outcome set for children with neurological impairment and tube feeding

Title

Core outcome set for children with neurological impairment and tube feeding

Creator

Joachim K C; Farid-Kapadia M; Butcher N J; Chee-a-tow A; Monsour A; Cohen E; Mahant S; Guttmann A; Offringa M

Identifier

Publisher

Developmental Medicine and Child Neurology

Date

2019

Subject

gastrostomy; Pediatrics; neurological impairment; tube feeding; gastrojejunostomy; core outcome set

Description

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 THIS 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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

October 2019 List

Collection

Citation

Joachim K C; Farid-Kapadia M; Butcher N J; Chee-a-tow A; Monsour A; Cohen E; Mahant S; Guttmann A; Offringa M, “Core outcome set for children with neurological impairment and tube feeding,” Pediatric Palliative Care Library, accessed July 6, 2022, https://pedpalascnetlibrary.omeka.net/items/show/16509.

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