Outcomes for gastrostomy-fed children and their parents: qualitative findings from the 'Your Tube' study.
Jane MaddisonJohanna TaylorMark O'NeillJanet CadeCatherine HewittKaren A HorridgeAlison McCarterLorna Katherine FraserBryony BeresfordPublished in: Developmental medicine and child neurology (2021)
Findings indicate a number of refinements to, and allow further specification of, the current 'initial' core outcome set for tube-fed children. Findings also have implications for choice of outcomes measures. Further qualitative research with children and young people is needed. What this paper adds Sleep is a key outcome for children and parents. Gastrointestinal symptoms and physical health were regarded as outcomes most likely to be affected by type of diet. Well-being and participation were identified as key distal outcomes. Gastrostomies are complex interventions. Further specification of the core outcome set is possible.