title: Parental Perceptions of Quality of Life in Children on Long-Term Ventilation at Home as Compared to Enterostomy Tubes.
abstract: OBJECTIVE
  Health related quality of life (HRQL) of children using medical technology at home is largely unknown. Our aim was to examine the HRQL in children on long-term ventilation at home (LTHV) in comparison to a cohort using an enterostomy tube.
  
  
  METHODS
  Participants were divided into three groups: 1) LTHV without an enterostomy tube (LTHV cohort); 2) Enterostomy tube (GT cohort); 3) LTHV with an enterostomy tube (LTHV+GT cohort). Caregivers of children ≥ 5 years and followed at SickKids, Toronto, Canada, completed three questionnaires: Health Utilities Index 2/3 (HUI2/3), Caregiver Priorities Caregiver Health Index (CPCHILD), and the Paediatric Quality of Life Inventory (PedsQL). The primary outcome was the difference in utility (HUI2/3) scores between the cohorts.
  
  
  RESULTS
  One hundred and nineteen children were enrolled; 47 in the LTHV cohort, 44 in the GT cohort, and 28 in the LTHV+GT cohort. In univariate analysis, HUI2 mean (SE) scores were lowest for the GT cohort, 0.4 (0.04) followed by the LTHV+GT, 0.42 (0.05) and then the LTHV cohort, 0.7 (0.04), p = 0.001. A similar trend was seen for the HUI3 mean (SE) scores: GT cohort, 0.1 (0.06), followed by the LTHV +GT cohort, 0.2 (0.08) and then the LTHV cohort, 0.5 (0.06), p = 0.0001. Technology cohort, nursing hours and the severity of health care needs predicted HRQL as measured by the HUI2/3.
  
  
  CONCLUSIONS
  The HRQL of these children is low. Children on LTHV had higher HRQL than children using enterostomy tubes. Further work is needed to identify modifiable factors that can improve HRQL.
authors.affiliation: Division of Respiratory Medicine, The Hospital for Sick Children, Toronto, Canada.|Department of Pediatrics, University of Toronto, Toronto, Canada.
authors.forename: Brahim
authors.initials: B
authors.lastname: Redouane
authors.affiliation: Department of Pediatrics, University of Toronto, Toronto, Canada.|Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Canada.|Department of Child Health and Evaluative Sciences, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Eyal
authors.initials: E
authors.lastname: Cohen
authors.affiliation: Department of Biostatistics, Design and Analysis, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Derek
authors.initials: D
authors.lastname: Stephens
authors.affiliation: Department of Pediatrics, University of Toronto, Toronto, Canada.|Centre for Innovation and Excellence in Child and Family Centered Care, The Hospital for Sick Children, Toronto, Canada.|Department of Pediatrics, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Krista
authors.initials: K
authors.lastname: Keilty
authors.affiliation: Department of Pediatrics, University of Toronto, Toronto, Canada.|Division of Gastroenterology, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Marialena
authors.initials: M
authors.lastname: Mouzaki
authors.affiliation: Department of Pediatrics, University of Toronto, Toronto, Canada.|Department of Child Health and Evaluative Sciences, The Hospital for Sick Children, Toronto, Canada.|Department of Orthopedic Surgery, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Unni
authors.initials: U
authors.lastname: Narayanan
authors.affiliation: Division of Respiratory Medicine, The Hospital for Sick Children, Toronto, Canada.|Department of Pediatrics, University of Toronto, Toronto, Canada.
authors.forename: Theo
authors.initials: T
authors.lastname: Moraes
authors.affiliation: Division of Respiratory Medicine, The Hospital for Sick Children, Toronto, Canada.|Department of Pediatrics, University of Toronto, Toronto, Canada.|Department of Child Health and Evaluative Sciences, The Hospital for Sick Children, Toronto, Canada.
authors.forename: Reshma
authors.initials: R
authors.lastname: Amin
mesh_terms: D000293:Adolescent; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D004766:Enterostomy; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012121:Respiration, Artificial; D011795:Surveys and Questionnaires; D012122:Ventilators, Mechanical / Q000706:statistics & numerical data*