Abstract
Purpose: :
The Intermittent Exotropia Questionnaire (IXTQ) is a patient-derived health-related quality of life (HRQOL) instrument for children with intermittent exotropia (IXT), with Child, Proxy, and Parent components. We evaluated responses on individual child and proxy IXTQ questions in a large cohort of IXT patients, to identify the highest and lowest rated HRQOL concerns.
Methods: :
174 children with IXT (aged 5 to 17 years), plus one parent for each child, completed Child and Proxy components of the IXTQ. Each question is scored from 0 to 100 (worst to best HRQOL). A mean score was calculated for each question. Questions were then ranked from lowest (worst HRQOL) to highest score. Analysis was repeated for sub-groups of children aged 5 to 7 years (n=80) and 8 to 17 years (n=94).
Results: :
For the Child questionnaire, the questions with the lowest mean score (worst HRQOL) were: "It bothers me that I have to shut one eye when it is sunny," followed by "I worry about my eyes" and "It bothers me that I have to wait for my eyes to clear up" (scores 64.2, 74.3 and 74.3 respectively). For the Proxy questionnaire, the questions with the lowest score (worst HRQOL) were "My child worries about his/her eyes" followed by "It bothers my child because he/she has to shut one eye when it is sunny" (scores 75.3 and 81.4 respectively). The questions with the highest scores (least impact on HRQOL) on both Child and Proxy questionnaires were "My eyes make it hard to make friends" and "Kids tease me because of my eyes" (Child scores 94.4 and 91.5 respectively and Proxy scores 95.6 and 89.4 respectively). Ranking of questions was very similar for younger (5 to 7 years) and older (8 to 17 years) children.
Conclusions: :
Using the IXTQ, the greatest HRQOL concerns for children with IXT were shutting one eye when sunny, worry about their eyes, and waiting for their eyes to clear up. The least HRQOL concerns were related to teasing and making friends. Rating of concerns was similar using Child and Proxy questionnaires and also for younger and older children. Questions that are of least concern should be considered for exclusion in future refinement of the IXTQ.
Keywords: esotropia and exotropia • strabismus • quality of life