Hatt Sarah R, Leske David A, Adams Wendy E, Kirgis Penny A, Bradley Elizabeth A, Holmes Jonathan M
Department of Ophthalmology, Mayo Clinic, Rochester, MN 55905, USA.
Arch Ophthalmol. 2008 Nov;126(11):1525-9. doi: 10.1001/archopht.126.11.1525.
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.
确定间歇性外斜视（IXT）患儿及其父母在健康相关生活质量（HRQOL）方面的具体担忧。
招募了24名年龄在5至17岁的IXT患儿以及每名患儿的1名家长。对患儿及其家长分别进行的个人访谈进行了录音和转录。对转录内容进行了审查，记录了关于IXT对HRQOL影响的表述，并确定了具体的主题领域。分析主题出现的频率，以确定患儿对自身HRQOL的看法、家长对其子女HRQOL的看法以及家长自身的HRQOL。
患儿访谈产生了18个主题。担忧（24名患者中有10名[42%]）被提及的频率最高。家长访谈产生了22个关于其子女HRQOL的主题。被提及频率最高的主题是他人的评论（24名患者中有15名[63%]）。关于家长自身的HRQOL，确定了14个主题；被提及频率最高的是对可能手术的担忧（24名患者中有15名[63%]）。
多次个人访谈揭示了IXT患儿及其父母在HRQOL方面的具体担忧，如担忧。我们将利用所确定的担忧为IXT开发特定疾病的HRQOL工具。
