Original articleDevelopment and Initial Validation of Quality-of-Life Questionnaires for Intermittent Exotropia
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Patients and Methods
Institutional review board approval was obtained. Each parent gave informed consent and children 8 years and older gave informed assent before participating. All procedures and data collection were conducted in a manner compliant with the Health Insurance Portability and Accountability Act.
Two phases comprising this present study are reported: first, the development of final IXT questionnaires, and second, the initial validation of the newly developed final IXT questionnaires. For both phases
Development of Final Child and Proxy Intermittent Exotropia Questionnaires
Of the 35 original questionnaire items, 10 were removed because 20% or more of either child or proxy responses were not applicable, and an additional 3 items were removed because 80% or more of either child or proxy responses were not at all. There were no negative comments regarding the clarity or wording of questions, and no items were considered potentially unresponsive to, or inappropriate after, treatment; therefore, no items were excluded for these reasons. In total, 13 (37%) of 35 items
Discussion
Using specific concerns identified directly from children with IXT and their parents, a 3-part questionnaire (child, proxy, and parent components) for assessing HRQOL in IXT was developed. Children with IXT showed worse HRQOL (lower scores) than control children when measured using the child IXTQ self-report and when measured using the parental proxy IXTQ report. Parents of children with IXT also showed lower scores when reporting their own HRQOL using the parent IXTQ.
There are limited data on
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Manuscript no. 2009-248.
Financial Disclosure(s): The author(s) have no proprietary or commercial interest in any materials discussed in this article.
Supported by the National Institutes of Health, Bethesda, Maryland (grant nos.: EY015799 [JMH], EY018810 [JMH], and EY013844 [EAB]); Research to Prevent Blindness, Inc., New York, New York (JMH as Olga Keith Weiss Scholar and an unrestricted grant to the Department of Ophthalmology, Mayo Clinic); and the Mayo Foundation, Rochester, Minnesota. None of the sponsors or funding organizations had a role in the design or conduct of this research.