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T. Yamada, S. R. Hatt, D. A. Leske, J. M. Holmes; Assessing Health-Related Quality of Life in Parents of Children with Intermittent Exotropia. Invest. Ophthalmol. Vis. Sci. 2010;51(13):3000.
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To assess the health-related quality of life (HRQOL) of parents of children with intermittent exotropia (IXT) using the newly developed condition-specific Parent Intermittent Exotropia Questionnaire (Parent IXTQ) and the established, generic PedsQL Family Impact Module (FIM) questionnaire and to compare the performance of each instrument.
One parent was recruited for each of 59 children with IXT (child ages: 3 to 16, median 7 years). Each parent completed the Parent IXTQ (17 items in 3 subscales: worry about their child’s function, psychosocial interactions and possible surgery) and the PedsQL FIM (36 items). Parent IXTQ and PedsQL FIM scores range from 0 to 100 (worst to best HRQOL), overall and for pre-defined sub-scales. For each questionnaire, "normal" thresholds were defined as the 5th percentile in a separate cohort of parents of visually normal children (n=29). We compared the proportion of subnormal scores (i.e., scores falling below the normal 5th percentile threshold) on each questionnaire in parents of children with IXT.
Overall, more parents scored below normal using the Parent IXTQ than using the PedsQL FIM (31% vs 12%; p=0.008 McNemar’s test). The Parent IXTQ subscale with the highest proportion of subnormal scores was "worry about function" (29%). The PedsQL FIM subscale with the highest proportion of subnormal scores was "emotional functioning" (15%). The proportion of subnormal scores was comparable for parents of younger children (3-7 years old, n=35) and older children (8-17 years old, n=24) on both the Parent IXTQ (26% vs 38%; p=0.4, Fisher’s exact) and on the PedsQL FIM (11% vs 13%; p=1.0).
The newly developed condition-specific Parent IXTQ better detects subnormal HRQOL in parents of children with IXT than the established generic PedsQL FIM. For parents that worry about their child’s IXT, it is possible that such worry may influence management decisions and this topic is worthy of further study.
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