Health-related quality of life in parents of children with intermittent exotropia

Purpose: To assess the health-related quality of life (HRQOL) of parents of children with intermittent exotropia with use of the newly developed condition-specific Parent Intermittent Exotropia Questionnaire (Parent IXTQ) and the generic PedsQL Family Impact Module (PedsQL FIM) and to compare the performance of both instruments. Methods: One parent was recruited for each of 59 children with intermittent exotropia (age range, 3-16; median, 7 years) and for each of 29 visually normal children (age range, 5-13; median, 8 years). The parent completed the Parent IXTQ and the PedsQL FIM. For each questionnaire, we compared median HRQOL scores between the intermittent exotropia group and visually normal group. We also calculated normal thresholds, which were defined as the 5th percentile score in the cohort of parents of visually normal children. The proportion of subnormal scores between questionnaires in parents of children with intermittent exotropia was compared. Results: The Parent IXTQ score was worse in the intermittent exotropia group than in the visually normal group (70.6 vs 94.1, p < 0.0001), whereas the PedsQL FIM scores were similar (97.9 vs 95.8, p = 0.8). More parents scored below normal when the Parent IXTQ was used than when the PedsQL FIM was used (31% vs 12%; p = 0.008, McNemar's test). Conclusions: The Parent IXTQ detects subnormal HRQOL in parents of children with intermittent exotropia more often than the PedsQL FIM. It is possible that parental worry may influence management decisions in children with intermittent exotropia and therefore parental HRQOL is worthy of further study.