title: A Core Outcome Set for Children With Feeding Tubes and Neurologic Impairment: A Systematic Review.
abstract: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting.
  
  
  
  To synthesize an evidence base of qualitative data on all outcomes selected and/or reported for neurologically impaired children 0 to 18 years living with gastrostomy/gastrojejunostomy tubes.
  
  
  
  Medline, Embase, and Cochrane Register databases searched from inception to March 2014.
  
  
  
  Articles examining health outcomes of neurologically impaired children living with feeding tubes.
  
  
  
  Outcomes were extracted and assigned to modified Outcome Measures in Rheumatology 2.0 Filter core areas; death, life impact, resource use, pathophysiological manifestations, growth and development.
  
  
  
  We identified 120 unique outcomes with substantial heterogeneity in definition, measurement, and frequency of selection and/or reporting: "pathophysiological manifestation" outcomes (n = 83) in 79% of articles; "growth and development" outcomes (n = 13) in 55% of articles; "death" outcomes (n = 3) and "life impact" outcomes (n = 17) in 39% and 37% of articles, respectively; "resource use" outcomes (n = 4) in 14%. Weight (50%), gastroesophageal reflux (35%), and site infection (25%) were the most frequently reported outcomes.
  
  
  
  We were unable to investigate effect size of outcomes because quantitative data were not collected.
  
  
  
  The paucity of outcomes assessed for life impact, resource use and death hinders meaningful evidence synthesis. A COS could help overcome the current wide heterogeneity in selection and definition. These results will form the basis of a consensus process to produce a final COS.
authors.affiliation: Toronto Outcomes Research in Child Health (TORCH), Child Health Evaluative Sciences, mufiza.farid@gmail.com.
authors.forename: Mufiza Z
authors.initials: MZ
authors.lastname: Kapadia
authors.affiliation: Toronto Outcomes Research in Child Health (TORCH), Child Health Evaluative Sciences.
authors.forename: Kariym C
authors.initials: KC
authors.lastname: Joachim
authors.affiliation: Toronto Outcomes Research in Child Health (TORCH), Child Health Evaluative Sciences.
authors.forename: Chrinna
authors.initials: C
authors.lastname: Balasingham
authors.affiliation: Division of Paediatric Medicine, Paediatrics Outcomes Research Team, and Institute of Health Policy, Management and Evaluation, and Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada; CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada; and.
authors.forename: Eyal
authors.initials: E
authors.lastname: Cohen
authors.affiliation: Division of Paediatric Medicine, Paediatrics Outcomes Research Team, and Institute of Health Policy, Management and Evaluation, and CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, Ontario, Canada; and.
authors.forename: Sanjay
authors.initials: S
authors.lastname: Mahant
authors.affiliation: Division of Paediatric Medicine, Institute of Health Policy, Management and Evaluation, and Paediatric Advanced Care Team, Department of Paediatrics, The Hospital for Sick Children (SickKids), Toronto, Ontario, Canada;
authors.forename: Katherine
authors.initials: K
authors.lastname: Nelson
authors.affiliation: Division of Paediatric Medicine, Department of Paediatrics, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada; Li Ka Shing Knowledge Institute, and Department of Paediatrics, St. Michael's Hospital, Toronto, Ontario, Canada.
authors.forename: Jonathon L
authors.initials: JL
authors.lastname: Maguire
authors.affiliation: Division of Paediatric Medicine, Paediatrics Outcomes Research Team, and Institute of Health Policy, Management and Evaluation, and Institute for Clinical Evaluative Sciences, Toronto, Ontario, Canada;
authors.forename: Astrid
authors.initials: A
authors.lastname: Guttmann
authors.affiliation: Toronto Outcomes Research in Child Health (TORCH), Child Health Evaluative Sciences.
authors.forename: Martin
authors.initials: M
authors.lastname: Offringa
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D004750:Enteral Nutrition / Q000379:methods; D015390:Gastric Bypass; D005774:Gastrostomy; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007441:Intubation, Gastrointestinal / Q000379:methods; D009422:Nervous System Diseases / Q000628:therapy*; D017063:Outcome Assessment, Health Care / Q000379:methods*