Child-rated and Parent-rated Quality of Life in Childhood Intermittent Exotropia: Findings from an Observational Cohort Study
Deborah Buck *
Institute of Neuroscience, Newcastle University, Newcastle Upon Tyne, United Kingdom
Nadeem Ali
Moorfields Eye Hospital, London, United Kingdom
Peter Tiffin
Sunderland Eye Infirmary, Sunderland, United Kingdom
Robert H. Taylor
York Hospitals NHS Trust, York, United Kingdom
Christine J. Powell
Newcastle Eye Centre, Royal Victoria Infirmary, Newcastle upon Tyne Hospitals NHS Foundation Trust, United Kingdom
Michael P. Clarke
Institute of Neuroscience, Newcastle University, Newcastle Upon Tyne, United Kingdom and Newcastle Eye Centre, Royal Victoria Infirmary, Newcastle upon Tyne Hospitals NHS Foundation Trust, United Kingdom
*Author to whom correspondence should be addressed.
Abstract
Purpose: To use the Pediatric Quality of Life Inventory (PedsQLTM) to describe generic quality of life (QOL) in children with intermittent exotropia [X(T)], to examine changes in scores, and to compare scores in children with X(T) to those of age-matched healthy cohorts.
Methods: PedsQLTM was administered to children and parents as part of the UK Improving Outcomes in Intermittent Exotropia (IOXT) study. Excluding 27 children with co-morbidity, PedsQL data was available from 365 parents and 152 children. Paired-samples t-tests examined change in PedsQLTM scores over time. One-sample t-tests and mean differences compared scores between children with X(T) and healthy UK samples.
Results: Mean parent-rated PedsQLTM scores from the X(T) cohort at baseline were: 90.6 (Physical Health), 78.2 (Emotional Functioning), 88.8 (Social Functioning), 83.4 (School/Nursery Functioning), 83.6 (Psychosocial Summary), 86.2 (Total). Mean baseline child-rated scores were: 78.1 (Physical Health), 76.5 (Emotional Functioning), 73.6 (Social Functioning), 72.2 (School/Nursery Functioning), 74.2 (Psychosocial Summary), 75.5 (Total). X(T) parents rated their child’s QOL similar to healthy children’s parents, except for poorer School/Nursery Functioning in 2-4 year olds. X(T) children rated their QOL significantly better than age-matched healthy children. There were no significant changes over time.
Conclusion: Using the PedsQLTM we were unable to detect significant effects of X(T) on generic QOL. However, evidence for PedsQL’s utility in this condition remains limited without further investigation in larger samples and concurrent control groups. Further qualitative work and consideration of condition-specific measures in UK cohorts are needed before practitioners can better inform parents about psychosocial impacts of X(T).
Keywords: Intermittent exotropia, divergent strabismus, quality of life, surgery, child, parent, proxy