Parental Perceptions of Quality of Life in Children on Long-Term Ventilation at Home as Compared to Enterostomy Tubes

Brahim Redouane; Eyal Cohen; Derek Stephens; Krista Keilty; Marialena Mouzaki; Unni Narayanan; Theo Moraes; Reshma Amin

doi:10.1371/journal.pone.0149999

Parental Perceptions of Quality of Life in Children on Long-Term Ventilation at Home as Compared to Enterostomy Tubes

PLoS One. 2016 Feb 25;11(2):e0149999. doi: 10.1371/journal.pone.0149999. eCollection 2016.

Authors

Brahim Redouane^{1

2}, Eyal Cohen^{2

3

4}, Derek Stephens⁵, Krista Keilty^{2

6

7}, Marialena Mouzaki^{2

8}, Unni Narayanan^{2

4

9}, Theo Moraes^{1

2}, Reshma Amin^{1

2

4}

Affiliations

¹ Division of Respiratory Medicine, The Hospital for Sick Children, Toronto, Canada.
² Department of Pediatrics, University of Toronto, Toronto, Canada.
³ Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Canada.
⁴ Department of Child Health and Evaluative Sciences, The Hospital for Sick Children, Toronto, Canada.
⁵ Department of Biostatistics, Design and Analysis, The Hospital for Sick Children, Toronto, Canada.
⁶ Centre for Innovation and Excellence in Child and Family Centered Care, The Hospital for Sick Children, Toronto, Canada.
⁷ Department of Pediatrics, The Hospital for Sick Children, Toronto, Canada.
⁸ Division of Gastroenterology, The Hospital for Sick Children, Toronto, Canada.
⁹ Department of Orthopedic Surgery, The Hospital for Sick Children, Toronto, Canada.

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.

Study design: 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.

Conclusion: 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.

Publication types

Comparative Study
Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Caregivers / psychology
Child
Child, Preschool
Cross-Sectional Studies
Enterostomy*
Female
Health Status
Humans
Male
Parents / psychology*
Quality of Life / psychology*
Respiration, Artificial*
Surveys and Questionnaires
Ventilators, Mechanical / statistics & numerical data*

Grants and funding

This work was supported by a Health Utilities Index New Investigator Grant (The licensing fees to use the HUI2/3 were waived for this study), http://www.healthutilities.com/fees.htm. The Health Utilities Index New Investigator Grant had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.