Objective: To identify specific health-related quality-of-life (HRQOL) concerns for children with intermittent exotropia (IXT) and their parents.
Methods: Twenty-four children aged 5 to 17 years with IXT and 1 parent for each child were recruited. Individual interviews with the child and then the parent were audiotaped and transcribed. Transcripts were reviewed, phrases regarding effects of IXT on HRQOL recorded, and specific topic areas identified. Topic frequency was analyzed to determine children's perceptions of their own HRQOL, parents' perceptions of their child's HRQOL, and parents' own HRQOL.
Results: Child interviews generated 18 topics. Worry (10 of 24 patients [42%]) was most frequently mentioned. Parent interviews generated 22 topics regarding their children's HRQOL. The most frequently mentioned topic was comments from others (15 of 24 patients [63%]). Regarding the parents' own HRQOL, 14 topics were identified; the most frequently mentioned was worry regarding possible surgery (15 of 24 patients [63%]).
Conclusions: Multiple individual interviews revealed specific HRQOL concerns, such as worry, in children with IXT and their parents. We will use the concerns identified to develop condition-specific HRQOL instruments for IXT.