The development of the Child Amblyopia Treatment Quality of Life Questionnaire (CAT-QoL)
Patient Reported Outcome measures (PROs) are being increasingly used to inform clinical decision-making and resource allocation. Existing generic measures of quality of life are often ineffective in detecting health-related quality of life (HRQoL) implications of visual impairment. The quality of life implications of amblyopia have been reported; however, this in often in the form of clinical opinion, or parental reporting. There is very little literature describing the impact of amblyopia and/or its treatment from a child’s perspective.
In 2006, Jill Carlton was awarded a Researcher Development Award Fellowship as part of the NIHR training programme, to develop a paediatric disease-specific health related quality of life measure for amblyopia.
Development of the CAT-QoL
The CAT-QoL was developed over a number of stages:
1. A systematic literature review to explore the HRQoL implications of amblyopia and/or its treatment. This information was used as a topic guide for use in Stage 2. More details can be found here.
2. Focus group discussions with clinicians, to further explore the impact amblyopia and/or its treatment has upon a child.
3. The results of Stages 1 and 2 were used to create a topic guide for interviewing children undergoing amblyopia treatment. Interviews were carried out with over 50 children during 2009-10, from two hospitals in Sheffield.
4. The interview data was analysed to identify all items (questions) that could be used in the questionnaire. Ranking exercises and cognitive de-debriefing were undertaken to produce a draft questionnaire. More details can be found here
5. A multi-centre validation study was conducted at nine sites in England. The results were used to subsequently refine the final content of the questionnaire using Rasch analysis. Over 300 children participated in the validation study. The following sites collected data for the validation study.
• Bradford Teaching Hospitals NHS Foundation Trust
• Doncaster and Bassetlaw NHS Foundation Trust
• Harrogate and District NHS Foundation Trust
• Maidstone and Tunbridge Wells NHS Trust
• Medway NHS Foundation Trust
• Sandwell and West Birmingham Hospitals NHS Trust
• Sheffield Children’s NHS Foundation Trust
• Sheffield Teaching Hospitals NHS Foundation Trust
• The Mid Yorkshire Hospitals NHS Trust
6. The psychometric properties of the CAT-QoL were assessed using the data obtained from the multi-centre validation study.
More information on this research will appear here as the work progresses; however, if you would like further information, please contact Jill Carlton.
To obtain a copy of CAT-QoL click here
To download the terms and conditions please click here