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

Area of Science:

• Ophthalmology and Vision Science
• Pediatric Health
• Patient-Reported Outcomes

Background:

• Children with eye conditions face unique challenges impacting their quality of life.
• Existing measures may not fully capture the specific concerns of these children and their families.
• Developing targeted patient-reported outcome measures is crucial for effective care.

Purpose of the Study:

• To identify specific health-related quality of life (HRQOL) and functional vision concerns in children with eye conditions.
• To create comprehensive lists of potential questionnaire items for developing patient-reported outcome measures.
• To address both child and parent perspectives on the impact of pediatric eye conditions.

Main Methods:

• Conducted interviews with 180 children and 328 parents of children with various eye conditions.
• Independently coded transcribed interviews to identify specific HRQOL and functional vision concerns.
• Formulated and grouped questions based on child and parent concerns into comprehensive lists.

Main Results:

• Generated 614 child-related questions categorized into 36 bins (e.g., appearance, learning).
• Formulated 589 parent-related questions grouped into 61 bins (e.g., caregiver assistance, safety concerns).
• Identified a wide range of functional vision and HRQOL issues from both child and parent viewpoints.

Conclusions:

• Developed comprehensive lists of questionnaire items derived from patient and parent interviews.
• These items address functional vision and HRQOL concerns in pediatric eye conditions.
• The identified items will aid in developing formal pediatric outcome measures and support future research.