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One size doesn't fit all: time to revisit patient-reported outcome measures (PROMs) in paediatric ophthalmology?
1Life Course Epidemiology and Biostatistics Section, Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK.
Insights
Developing patient-reported outcome measures (PROMs) for children with visual impairments presents unique challenges. Addressing these methodological issues is crucial for creating effective vision-specific tools for pediatric ophthalmology research and practice.
Area of Science:
- Ophthalmology
- Pediatrics
- Health Outcomes Research
Background:
- Patient-reported outcome measures (PROMs) are vital for assessing health in pediatric populations.
- Children with visual impairments represent a rare and complex group with specific needs for outcome assessment.
Purpose of the Study:
- To summarize methodological challenges and opportunities in developing and applying PROMs for children with visual impairments.
- To identify key issues specific to this population in the context of outcome measure development.
Main Methods:
- Literature review of PROMs development and application in children, including those with disabilities or chronic conditions.
- Identification and discussion of five key issues specific to children with visual impairment.
Main Results:
- Five key issues identified: conflation of vision-related constructs, need for developmentally appropriate approaches, feasibility of standard formats, self-reporting capabilities, and ethical/statistical considerations.
- Significant practical and methodological challenges exist in developing and applying vision-specific, age-appropriate PROMs.
Conclusions:
- There is a clear need for vision-specific, age-appropriate PROMs in pediatric ophthalmology.
- Further understanding of visually impaired children as respondents is necessary for developing quality PROMs and their meaningful application.
Abstract:
The purpose of this article is to summarise methodological challenges and opportunities in the development and application of patient reported outcome measures (PROMs) for the rare and complex population of children with visually impairing disorders. Following a literature review on development and application of PROMs in children in general, including those with disabilities and or/chronic condition, we identified and discuss here 5 key issues that are specific to children with visual impairment: (1) the conflation between theoretically distinct vision-related constructs and outcomes, (2) the importance of developmentally appropriate approaches to design and application of PROMs, (3) feasibility of standard questionnaire formats and administration for children with different levels of visual impairment, (4) feasibility and nature of self-reporting by visually impaired children, and (5) epidemiological, statistical and ethical considerations. There is an established need for vision-specific age-appropriate PROMs for use in paediatric ophthalmology, but there are significant practical and methodological challenges in developing and applying appropriate measures. Further understanding of the characteristics and needs of visually impaired children as questionnaire respondents is necessary for development of quality PROMs and their meaningful application in clinical practice and research.
