Core outcome set for children with neurological impairment and tube feeding

Core outcome set for children with neurological impairment and tube feeding

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

Developmental Medicine and Child Neurology

2019

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

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.

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October 2019 List