Development of the Child Amblyopia Treatment Questionnaire (CAT-QoL): a disease-specific health related quality of life (HRQOL) measure for amblyopia

Purpose: To develop a pediatric disease-specific health related quality of life (HRQOL) instrument for amblyopia.

Methods: In a development phase, 59 children (age 45-119 months, average 6 years 3 months) with amblyopia were interviewed. Interview transcripts were analysed to identify items and levels for the descriptive system. These were used in a piloting phase which was completed by 32 children who were undergoing amblyopia treatment. Ranking exercises and cognitive debriefing were used to modify the developed descriptive system.

Results: Following the cognitive debriefing and ranking exercise, the draft questionnaire was modified. Eleven items were identified relating to the health-related implications of amblyopia treatment. Seven versions of the Children’s Amblyopia Treatment Quality of Life Questionnaire (CAT-QoL) were developed (patch; drops; glasses; patch and drops; patch and glasses; glasses and drops; glasses, patch and drops).

Conclusions: Children were able to identify their thoughts and opinions of their own health; and to find out what impact their amblyopia treatment has had upon their daily lives. They are able to understand and articulate what it is they feel and have experienced because of their eye condition. Version 1 of the CAT-QoL is currently being undertaken at a number of sites in England. This data will be used to assess the psychometric properties of the CAT-QOL, such as reliability and responsiveness. This measure can then be used in healthcare studies to investigate the impact of amblyopia treatment upon a child’s HRQoL.