ABSTRACT

Purpose: Patient reported outcome (PRO) instruments are increasingly common in both clinical practice and research. The data obtained from these instruments can be used to help inform decision-making and policy-making decisions. The methodological approaches undertaken in developing PROs is not frequently reported. Literature on the development of the descriptive systems for PROs is sparse in comparison to the assessment of the psychometric properties of such instruments. The purpose of this study is to describe the methodological approach taken in identifying potential items for the Child Amblyopia Treatment Questionnaire (CAT-QoL); a paediatric disease-specific health related quality of life instrument for amblyopia designed for children aged 4 to 7 years.
Methods: Semi-structured interviews were undertaken with 59 children (age 3 yrs 9 months – 9 years 11 months; average 6 years 3 months) with amblyopia. Interview transcripts were analysed to identify potential items to be included in the descriptive system.
Results: Eleven potential items were identified for inclusion in the Children’s Amblyopia Treatment Questionnaire (CAT-QoL) instrument.
Conclusions: Children are able to identify their thoughts and opinions of their own health; and to describe 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. Items for the draft descriptive system for a paediatric self-reported amblyopia HRQoL have been identified.