Patient-derived questionnaire items for patient-reported outcome measures in pediatric eye conditions.

PURPOSE: To identify specific health-related quality of life (HRQOL) and functional vision concerns of children with eye conditions, and create comprehensive lists of potential questionnaire items as a first step in developing patient-reported outcome measures.
METHODS: Children experiencing a range of pediatric eye conditions, along with one of their parents, were interviewed to identify specific concerns. Transcribed interviews were reviewed, and specific HRQOL and functional vision concerns were coded independently by two reviewers. Coded concerns were reviewed to formulate questions to address specific child concerns (derived from child and parent interviews) and specific parent concerns. Questions were grouped into bins of like questions. Two comprehensive lists of questions were formulated, one addressing child-related concerns and one addressing parent-related concerns.
RESULTS: This study included 180 children and 328 parents. A total of 614 individual child questions were grouped into 36 bins (eg, appearance, coordination, glasses, learning), and 589 parent questions were formulated and grouped into 61 bins (eg, having to assist the child, worry about deterioration, time off work, safety).
CONCLUSIONS: Using rigorous methods based on individual interviews, we identified a comprehensive list of patient- and parent-derived questionnaire items that address functional vision and HRQOL concerns of children with eye conditions and of their parents. We plan to use this large pool of potential questionnaire items to develop a formal set of pediatric outcome measures, and this pool of questions may also be a resource for future research.