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Suzanne M Wernimont, Yolanda S. Castañeda, Sarah R Hatt, David A Leske, Laura Liebermann, Christina S. Cheng-Patel, Eileen E Birch, Jonathan M Holmes; Identifying items for patient-reported outcome measures in pediatric eye disease. Invest. Ophthalmol. Vis. Sci. 2016;57(12):2453.
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To develop child and proxy (parent) master questionnaires for assessing health-related quality of life (HRQOL) and functional vision in children with strabismus, amblyopia and/or refractive error, as an interim step toward creating new patient-reported outcome measures for children with eye disorders.
264 children with esotropia, exotropia, hypertropia, amblyopia, and/or refractive error were interviewed, along with one parent, to identify specific concerns. Interview transcripts were coded and sections of interview text grouped under broad areas of concern, relating to the child’s experience. First, grouped interview text was reviewed and individual questions formulated to address each specific concern. Second, questions addressing the same specific sub-concern were binned. To balance the need to represent multiple concerns with feasibility, new questions were formulated to encompass several specific concerns, both from HRQOL and functional vision perspectives. Third, each bin of questions was reviewed with the aim of winnowing to a representative set of questions. Questions were removed if they were similar to another, if the content was too narrow, or if the question was confusing or unclear.
A total of 177 unique questions were formulated, addressing specific concerns. Questions were grouped into 23 bins. On reviewing questions within each bin, we identified an organizational framework such that concerns could be assigned to one of 3 categories: dislike, feeling different, and finding something difficult. We used this framework for organizing questions within each bin of concerns, and for creating additional questions (n=25). For example, within the glasses bin, 8 specific questions were initially formulated regarding disliking glasses. But these specific questions were eliminated and combined in the overall question, “Do you dislike wearing glasses?” 36 questions addressing quality of life and functional vision remained for inclusion in a master questionnaire for administration in the next phase of the study.
By following a rigorous approach to question development and refinement, we have produced a master questionnaire for further testing in children with strabismus, amblyopia and refractive error, as part of a larger project developing patient-reported outcome measures for children with eye disorders.
This is an abstract that was submitted for the 2016 ARVO Annual Meeting, held in Seattle, Wash., May 1-5, 2016.
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