Childhood esotropia: child and parent concerns

Purpose To identify specific health-related quality of life (HRQOL) concerns affecting children with esotropia as expressed by children or one of their parents (proxy) and concerns affecting the parents themselves. Methods Sixty children with esotropia (0-17 years of age) and 1 parent for each child were prospectively enrolled. Individual semistructured interviews were conducted with children aged 5-17 years (n = 40) and 1 parent each for child ages 0-17 years. Transcripts of recorded interviews were evaluated using NVivo software. Specific concerns were identified from both child and parent interviews and coded. From these specific codes, broad themes were identified. Frequency of each theme was calculated, along with the frequency of specific codes within each theme. Results Regarding the child's experience 6 broad themes were identified: visual function (mentioned by 32 of 40 children (80%) and by 50 of 60 parents (proxy assessment of child, 83%), treatment (78% and 85%), emotions (65% and 67%), social (58% and 68%), physical (58% and 32%), and worry (45% and 7%). Regarding the parents’ own experience, 5 broad themes were identified: treatment (59 of 60 parents, 98%), worry (97%), emotions (82%), compensation for condition (80%), and affects family (23%). Conclusions A wide range of concerns were identified from interviews of children with esotropia and their parents. Concerns reflect the impact of esotropia in physical, emotional, and social domains, and specific concerns will be used for the development of questionnaires to quantify the effects of esotropia on children's and parents’ quality of life.