title: One size doesn't fit all: time to revisit patient-reported outcome measures (PROMs) in paediatric ophthalmology?
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.
authors.affiliation: Life Course Epidemiology and Biostatistics Section, Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK.|Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
authors.forename: V
authors.initials: V
authors.lastname: Tadić
authors.affiliation: Life Course Epidemiology and Biostatistics Section, Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK.|Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.|Ulverscroft Vision Research Group, London, UK.|National Institute for Health Research (NIHR) Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, London, UK.
authors.forename: J S
authors.initials: JS
authors.lastname: Rahi
mesh_terms: D002648:Child; D002908:Chronic Disease / Q000523:psychology; D006801:Humans; D020380:Needs Assessment; D009885:Ophthalmology / Q000592:standards; D000071066:Patient Reported Outcome Measures; D010372:Pediatrics / Q000592:standards; D011594:Psychometrics; D011787:Quality of Health Care / Q000592:standards*; D011788:Quality of Life; D011795:Surveys and Questionnaires; D014786:Vision Disorders / Q000175:diagnosis* / Q000523:psychology / Q000628:therapy*