[show abstract][hide abstract] ABSTRACT: To identify specific health-related quality-of-life (HRQOL) concerns for children with intermittent exotropia (IXT) and their parents.
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.
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%]).
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.
Archives of ophthalmology 12/2008; 126(11):1525-9. · 3.86 Impact Factor
[show abstract][hide abstract] ABSTRACT: As a first step in the development of a health-related quality of life (HRQOL) instrument, we conducted in-depth interviews to identify the specific concerns of adults with strabismus.
Prospective cross-sectional study.
Thirty adults with strabismus, 17 with diplopia, and 13 without were recruited. Individual interviews, using 11 open-ended questions, were audiotaped, transcribed, and transcripts reviewed independently by three investigators. Phrases regarding how strabismus affected everyday life were grouped into topic areas and the frequency of each topic analyzed for subjects with and without diplopia.
A total of 1,508 phrases were extracted: 207 (14%) of 1,508 were excluded because they did not pertain to HRQOL. From the remaining 1,301 phrases, 48 topic areas were apparent. For patients with diplopia, the most frequently occurring topics were: nonspecific negative feeling (15/17; 88%) ("really hard"); general disability (15/17; 88%) ("affects everything"); and driving (14/17; 82%). In those without diplopia, the most frequently mentioned topics were appearance to others (12/13; 92%) ("people notice my eyes") followed by problems with eye contact (10/13; 77%) and interpersonal relationships (10/13; 77%). Of the topics that were common to both groups (n = 42), two of the most frequent were driving and nonspecific negative feeling.
Multiple individual interviews revealed many topics that negatively affect quality of life in patients with strabismus. The frequency and type of concerns confirm the importance of HRQOL assessment as an important aspect of strabismus management.
American Journal of Ophthalmology 12/2007; 144(5):643-7. · 3.63 Impact Factor