The development of the Children’s Amblyopia Treatment Quality of Life Questionnaire (CAT-QOL)
Background
Patient Reported Outcome Measures (PROMs) 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.
Research project
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 first stage of the research consisted of a systematic literature review to explore the health related quality of life implications of amblyopia and/or its treatment. This information was used as a topic guide to facilitate focus group discussions with clinicians, to further explore the impact amblyopia and/or its treatment has upon an individual.
The focus group data was analysed to identify topics to discuss with children undergoing treatment of amblyopia in Sheffield. Interviews were carried out with over 50 children during 2009-10, from two hospitals in Sheffield. The interviews were used to determine what items of health related quality of life to be used in a draft questionnaire. Initial piloting and cognitive debriefing of the draft questionnaire was conducted at Sheffield Children’s NHS Foundation Trust.
Piloting of the developed questionnaire is currently being undertaken at the following sites in England. The data will be used to test the psychometric properties of the questionnaire; and to further refine the instrument.
- 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
Further information
More information on this research will appear here as the work progresses; however, if you would like further information, please contact Jill Carlton.
Information for academics/researchers and those interested in using the CAT-QOL (page to be developed)