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Patient-reported outcome measures (PROMs) in paediatric ophthalmology: a systematic review
Valerija Tadic1, Ailbhe Hogan, Nidhi Sobti
1Medical Research Council (MRC) Centre of Epidemiology for Child Health at the Centre for Paediatric Epidemiology and Biostatistics, University College London (UCL) Institute of Child Health, , London, UK.
Insights
Researchers identified 17 patient-reported outcome measures (PROMs) for pediatric eye conditions. Further development is needed to improve the quality and application of these crucial pediatric ophthalmology tools.
Area of Science:
- Ophthalmology
- Pediatric Health
- Patient-Reported Outcome Measures (PROMs)
Background:
- Assessing the impact of ophthalmic disorders in children requires validated patient-reported outcome measures (PROMs).
- Existing PROMs for pediatric eye conditions vary in development and application.
- Systematic evaluation of PROMs quality is essential for clinical and research use.
Purpose of the Study:
- To identify PROMs developed for assessing ophthalmic disorders in children (ages 2-18).
- To systematically evaluate the quality of identified PROMs.
- To provide recommendations for the use of PROMs in pediatric ophthalmology settings.
Main Methods:
- Systematic literature review across multiple databases (MEDLINE, EMBASE, PsychINFO, CINAHL, AMED).
- Inclusion of papers reporting development and validation of ophthalmic PROMs for children.
- Quality assessment based on instrument purpose and psychometric properties.
Main Results:
- Seventeen instruments were identified: 11 condition-specific and 6 for broader visual impairment.
- Three PROMs were developed for specific trials, and two are still under development.
- Variability in quality and psychometric properties was noted across the identified instruments.
Conclusions:
- The field of pediatric ophthalmology PROM development is emerging, necessitating new instruments.
- Improvements are needed in defining constructs, adopting child-centered approaches, and adhering to best practices.
- Enhanced PROMs are crucial for advancing pediatric eye care research and clinical practice.
Aim:
To identify patient-reported outcome measures (PROMs) specifically developed and used to assess the impact of ophthalmic disorders in children and to systematically assess their quality as a basis for recommendations about their use in clinical and research settings.
Methods:
A systematic review of the literature was performed in MEDLINE, EMBASE, PsychINFO, CINAHL and AMED, supplemented by a grey literature search. Papers reporting development and validation of questionnaire instruments for assessing patient-reported outcomes of an ophthalmic disorder in patients aged 2-18 years were included. Quality was assessed by examining the purpose and psychometric properties of the instruments. Strengths and limitations were summarised with recommendations regarding use.
Results:
Search identified 17 instruments. Of these, 11 were condition-specific and six were intended for a broader population of children and young people with visual impairment regardless of the ophthalmic condition. Three were developed for use in a specific trial and two are still in development.
Conclusions:
Paediatric ophthalmology PROM development and application is a developing field and new instruments are needed. There is scope for improvement in this area through (a) clarity of definitions of the underlying constructs intended to be measured at the onset of development of new instruments, (b) application of child-centred approaches and (c) adherence to extant guidance and best practice in questionnaire instrument development.
