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S. R. Hatt, D. A. Leske, T. Yamada, E. A. Bradley, J. M. Holmes; Reduced Quality of Life in Childhood Intermittent Exotropia. Invest. Ophthalmol. Vis. Sci. 2009;50(13):1210.
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© ARVO (1962-2015); The Authors (2016-present)
To assess health related quality of life (HRQOL) in children with intermittent exotropia (IXT) and their parents.
Individual interviews with children with IXT and one of their parents generated items for Child, Proxy (parental assessment of child’s HRQOL), and Parent questionnaires, which were then refined using standard item reduction methodology. Three final derived IXT questionnaires (IXTQ): Child, Proxy, and Parent (12, 12, and 17 items respectively) were administered to 33 children with IXT (median 8 years, range 5-15) and one of their parents, and 49 control children (median 8 years; range 5-13) and one of their parents. Children in the control group had no strabismus or amblyopia. A Likert type scale ranging from ‘never’ (score 100, best HRQOL) to ‘almost always’ (score 0, worst HRQOL) was used for responses. Wilcoxon tests were used to compare median scores between IXT and control groups.
Median Child IXTQ scores were significantly lower (worse HRQOL) in the IXT group compared with the control group: 85 (range 54-100) versus 92 (50-100); P=0.04. Median Proxy IXTQ scores were significantly lower for IXT children than controls: 83 (54-100) versus 98 (65-100); P<0.0001. The most discriminating questions for both Child and Proxy questionnaires related to shutting one eye in the sun and comments from others. Median Parent IXTQ scores were also significantly lower in the IXT group compared with the control group: 68 (range 24-100) versus 93 (49-100); P<0.0001. All Parent questions discriminated well between IXT and control groups, relating to possible surgery, psychosocial concerns, and function concerns of the child
We have developed and validated a new 3-part patient-derived HRQOL questionnaire for children with IXT and their parents. These questionnaires detect reduced HRQOL in children with IXT both as reported by the child themselves and as perceived by their parents. Childhood IXT also affects the HRQOL of the parents. The IXTQ HRQOL questionnaires may prove useful in the clinical assessment of IXT and for clinical trials.
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