Identifying potential themes for the Child Amblyopia Treatment Questionnaire

Area of Science:

• Ophthalmology
• Pediatrics
• Health Outcomes Research

Background:

• Patient-reported outcome (PRO) instruments are crucial for clinical and research decision-making.
• Methodological development of PROs, particularly descriptive systems, is underreported.
• Existing literature on PROs for amblyopia in children is sparse.

Purpose of the Study:

• To describe qualitative interview findings for developing the Child Amblyopia Treatment Questionnaire (CAT-QoL).
• To identify themes for a pediatric disease-specific health-related quality of life instrument for amblyopia.
• To target children aged 4 to 7 years with amblyopia.

Main Methods:

• Conducted semistructured interviews with 59 children diagnosed with amblyopia (ages 3y 9m to 9y 11m).
• Transcribed interviews verbatim and analyzed using thematic content analysis with Framework.
• Identified potential items for the descriptive system using QSR NVivo 8 software.

Main Results:

• Identified 11 potential themes for the CAT-QoL instrument.
• Themes include physical treatment sensations, pain, social interactions, schoolwork, daily tasks, and emotional well-being (sad, cross, worried, frustrated).
• Included themes related to feelings toward family members.

Conclusions:

• Children can articulate their health perceptions and the impact of amblyopia treatment.
• Identified themes form the basis for a draft descriptive system for a pediatric self-reported amblyopia quality of life instrument.
• A draft CAT-QoL instrument was developed; further research is needed for refinement and psychometric validation.