Mufiza Z Kapadia1, Kariym C Joachim2, Chrinna Balasingham2, Eyal Cohen3, Sanjay Mahant4, Katherine Nelson5, Jonathon L Maguire6, Astrid Guttmann7, Martin Offringa2. 1. Toronto Outcomes Research in Child Health (TORCH), Child Health Evaluative Sciences, mufiza.farid@gmail.com. 2. Toronto Outcomes Research in Child Health (TORCH), Child Health Evaluative Sciences. 3. 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. 4. 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. 5. 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; 6. 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. 7. 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;
Abstract
CONTEXT: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting. OBJECTIVE: 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. DATA SOURCES: Medline, Embase, and Cochrane Register databases searched from inception to March 2014. STUDY SELECTION: Articles examining health outcomes of neurologically impaired children living with feeding tubes. DATA EXTRACTION: 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. RESULTS: 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. LIMITATIONS: We were unable to investigate effect size of outcomes because quantitative data were not collected. CONCLUSIONS: 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.
CONTEXT: Uncertainty exists about the impacts of feeding tubes on neurologically impaired children. Core outcome sets (COS) standardize outcome selection, definition, measurement, and reporting. OBJECTIVE: 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. DATA SOURCES: Medline, Embase, and Cochrane Register databases searched from inception to March 2014. STUDY SELECTION: Articles examining health outcomes of neurologically impaired children living with feeding tubes. DATA EXTRACTION: 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. RESULTS: 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. LIMITATIONS: We were unable to investigate effect size of outcomes because quantitative data were not collected. CONCLUSIONS: 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.
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