Background Patient-reported outcome measures (PROMs) are increasingly used in paediatric ophthalmology. However, little is known about the distribution of PROM scores among children and young people with visual impairment.
Aim To investigate the distributions and predictors of scores on the VQoL_CYP (measuring vision-related quality of life) and FVQ_CYP (measuring functional vision).
Methods Children and young people aged 8–18 years, with visual impairment/blindness (logarithm of the minimum angle of resolution (LogMAR) worse than 0.48 in the better eye, and/or eligible visual field restriction) completed the VQoL_CYP and FVQ_CYP at home or Great Ormond Street Hospital, London, UK. Associations between VQoL_CYP and FVQ_CYP scores and sociodemographic and clinical factors were analysed using multiple linear regression models.
Results Among 93 participants, VQoL_CYP scores ranged from 36.6 to 78.2 (mean=57.9, SD=8.1). FVQ_CYP scores ranged from 23.5 to 70.3 (mean=48.3, SD=10.1). Only 0.4% of the variation in VQoL_CYP scores was explained, with no associations with the variables of interest. By contrast, 21.6% of the variation in FVQ_CYP scores was explained, with a gradient of worse acuity (p<0.001) and female gender (p=0.04) associated with worse self-rated functional vision. Age, ethnicity, time of onset and stability/progression of visual impairment were not associated.
Discussion Self-rated vision-related quality of life and functional vision are not readily predicted from sociodemographic or clinical characteristics that ophthalmologists measure/record. Routine use of PROMs in clinical practice can offer important insights. Use in research can provide valuable measures of effectiveness of interventions. The reference values provided will aid interpretation in both settings.
- child health (paediatrics)
- diagnostic tests/Investigation
- medical education
- treatment other
Data availability statement
Data are available upon reasonable request. Aggregated data are available upon request to the corresponding author.
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Contributors AOR contributed to the design of the study, and was accountable for data acquisition and interpretation, data analysis, preparation of the manuscript and final manuscript approval. LAH-G and MC-B contributed to the data analysis and interpretation, and critical revision of the manuscript. JSR was accountable for the design of the study, data interpretation and critical revision of the manuscript. All authors share accountability for all aspects of the work and have approved for the final version to be published.
Funding This study was funded by the Great Ormond Street Hospital Charity (V0418). It was undertaken at UCL Great Ormond Street (GOS) Institute of Child Health/Great Ormond Street Hospital, which receive a proportion of funding from the Department of Health’s National Institute for Health Research (NIHR) Biomedical Research Centres funding scheme. Members of the team are also supported by the Ulverscroft Foundation. Professor Rahi is an NIHR Senior Investigator.
Disclaimer The views expressed in this article are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health. The funding sources had no involvement in the conduct of the research and/or preparation of the article.
Competing interests This study was funded by the Great Ormond Street Hospital Charity (V0418). It was undertaken at UCL Great Ormond Street (GOS) Institute of Child Health/Great Ormond Street Hospital, which receive a proportion of funding from the Department of Health’s National Institute for Health Research (NIHR) Biomedical Research Centres funding scheme. Members of the team are also supported by the Ulverscroft Foundation. Professor Rahi is an NIHR Senior Investigator. Professor Jugnoo Rahi had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Provenance and peer review Not commissioned; externally peer reviewed.
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