Vision-related quality of life in children with amblyopia

Purpose: Vision-related quality of life (VRQoL) of children with and without amblyopia is poorly understood from the children's perspective. The aims of the work presented in this thesis were to understand aspects of VRQoL in children with and without amblyopia from their perspectives and to examine parents’ awareness of their children’s VRQoL. Methods: A number of studies were conducted. Firstly, an existing instrument designed to assess VRQoL in children with visual impairment was tested for validity to assess amblyopic children using Rasch analysis. Secondly, semi-structured interviews with amblyopic children and their carers were qualitatively analysed. Thirdly, items generated from the qualitative study and the literature were tested in amblyopic and control children and developed into a unidimensional instrument designed to assess vision-related activity limitation (VRAL), a subset of VRQoL according to the Rasch model. Construct validity of the newly developed instrument was then tested by comparing amblyopes at different stages of treatment and controls. Finally, parental awareness of their children’s VRAL was tested using the newly developed instrument.Results: An existing instrument designed to assess VRQoL in children with visual impairment was shown to be poorly targeted for amblyopic children supporting the argument for a need of a new instrument to assess VRQoL in amblyopic children. Qualitative interviews indicated that many amblyopic children reported negative social and emotional experiences and problems doing activities attributable to their amblyopia. Subsequently, 43 items were developed into an instrument which was piloted in a total of 101 amblyopic and control children. A VRAL questionnaire was formed which fit the Rasch model but a valid subscale from the items relating to social and emotional wellbeing could not be formed. The VRAL scores were significantly lower in amblyopic children than in those without amblyopia. Parents were mostly awar