Developing the draft descriptive system for the child amblyopia treatment questionnaire (CAT-Qol): a mixed methods
1Health Economics and Decision (HEDS), School of Health and Related Research (ScHARR), University of Sheffield, Regent Court, 30 Regent Street, Sheffield S1 4DA, UK. j.carlton@sheffield.ac.uk.
Insights
This study refined a new patient-reported outcome (PRO) instrument, the Child Amblyopia Treatment Questionnaire (CAT-QoL), for children aged 4-7 years. Children
Area of Science:
- Ophthalmology
- Pediatric Vision
- Health Outcomes Research
Background:
- Amblyopia, a common childhood visual condition, necessitates effective screening and treatment programs.
- Existing patient-reported outcome (PRO) measures for amblyopia lack adherence to current development and administration guidelines.
- There is a need for a child-friendly PRO instrument for amblyopia tailored to young children.
Purpose of the Study:
- To develop a self-complete PRO instrument for amblyopia in children aged 4-7 years.
- To incorporate children's direct responses into the development and refinement of the instrument.
- To refine the descriptive system of the draft Child Amblyopia Treatment Questionnaire (CAT-QoL) using qualitative and quantitative methods.
Main Methods:
- Children aged 4-7 years independently completed a draft CAT-QoL questionnaire.
- Cognitive debriefing interviews were conducted to assess children's understanding and identify reading difficulties.
- A ranking exercise was employed with some children to determine the order of response levels, with mid-rank scoring and agreement calculated.
Main Results:
- Thirty-two children completed the draft questionnaire and debriefing; 22 participated in the ranking exercise.
- Qualitative feedback informed modifications to item wording and instrument layout.
- Ranking results guided the sequencing of response levels, though 10 children struggled with the ranking concept.
Conclusions:
- Young children's input is valuable for developing PRO instruments, ensuring content and face validity.
- The CAT-QoL instrument was further refined based on children's responses.
- Further research is necessary to evaluate the psychometric properties of the refined CAT-QoL.
Background:
Amblyopia is a visual condition that occurs in childhood. Screening programmes exist within the United Kingdom (UK) to detect amblyopia, and once detected treatment is given.Existing patient reported outcome (PRO) measures for amblyopia do not meet current recommendations for the methods adopted during their development, or the way in which the instruments are administered. The overall aim of this study was to produce a self-complete PRO instrument for amblyopia for children aged 4-7 years that uses children's responses in the development phase. The study comprised a number of stages. This paper reports on the refinement of the descriptive system for the draft instrument (the Child Amblyopia Treatment Questionnaire, CAT-QoL) using qualitative and quantitative methods.
Methods:
The study consisted of three components. Children were asked to read, and complete the draft questionnaire as independently as possible. They were then asked about the questionnaire, and its format, in a cognitive debriefing exercise. Observations were made as to the child's ability to read the questionnaire, particular attention was made as to which individual words participants struggled to read. Children were also asked their opinion on the design layout of the questionnaire. Finally, some children were asked to complete a ranking task to help determine the order of the levels of the items as judged by the children. Mid-rank scoring and statistical level of agreement were calculated for the ranking exercise.
Results:
Thirty-two (n=32) participants completed a draft questionnaire; each of these underwent a cognitive de-briefing interview. Twenty-two (n=22) children completed the ranking exercise. Ten children did not understand the concept of ranking. The results of the qualitative phase (cognitive de-briefing interview) were used to modify the wording of items and layout of the instrument. Results of the ranking exercise were used to inform the order of the response levels for the items.
Conclusion:
Responses of young children can be used in the development of PRO instruments. They are able to help inform the content, wording, and format of an instrument, ensuring good content and face validity. The results have been used to further refine the CAT-QoL, however further research is required to assess the psychometric properties of the instrument.
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