Abstract
Purpose:
Esotropia is a common form of childhood strabismus, but there are few data on effects on health related quality of life (HRQOL) in children with esotropia. As part of a larger research effort to develop patient-reported outcome measures for pediatric eye conditions, we interviewed esotropic children and, as a proxy, one of their parents.
Methods:
35 children with esotropia (aged 2 to 17 years) were recruited. Esotropia types were accommodative or partially accommodative (17; 49%), infantile (7; 20%), non-accommodative (6; 17%), consecutive (2; 6%), 6th nerve palsy (1; 3%), Duane syndrome (1; 3%), and mechanical (1; 3%). Individual semi-structured interviews were conducted with children aged 5-17 years (n=23). One parent was also interviewed for each child (for children <5 years only the parent was interviewed). Transcripts from these recorded interviews were independently evaluated by 2 investigators using NVivo software. Specific HRQOL concerns were identified from both child and parent interviews and coded by assigning to themes. Discrepancies were resolved by discussion. The frequency of each theme was calculated.
Results:
Overall, 21 themes were identified. From child interviews (n=23), the top concerns (each mentioned by 18 [78%] of 23) were Negative Emotions such as feeling bad, scared, or nervous, and problems related to Treatment (e.g., glasses, patching or atropine). Vision concerns, including poor vision, poor depth perception, and double vision were mentioned by 17 children (74%). In proxy interviews, most frequently mentioned concerns by parents (n=23) regarding their child’s HRQOL were problems with Treatment (18; 78%), followed by Activities, Sports, or Hobbies (15; 65%), and Negative Emotions (15; 65%). For children <5 years old where only the parent proxy interview was conducted (n=12), top concerns perceived as affecting the child were problems with Treatment (11 [92%] of 12), Negative Emotions (7; 58%), and Discomfort or Ocular Sensations (7; 58%).
Conclusions:
Children with esotropia experience a range of HRQOL concerns but there are differences according to whether they are reported by the child themselves or by the parent as a proxy for the child. Identified concerns will be used to develop child and proxy HRQOL instruments.