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Patient-reported outcome measures (PROMs) in paediatric ophthalmology: a systematic review
  1. Valerija Tadić1,2,
  2. Ailbhe Hogan1,
  3. Nidhi Sobti1,
  4. Rachel Louise Knowles1,
  5. Jugnoo Sangeeta Rahi1,2,3
  1. 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
  2. 2Ulverscroft Vision Research Group, UCL Institute of Child Health, London, UK
  3. 3National Institute for Health Research (NIHR) Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, London, UK
  1. Correspondence to Professor Jugnoo S Rahi, MRC Centre of Epidemiology for Child Health at the Centre for Paediatric Epidemiology and Biostatistics, UCL Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK; j.rahi{at}ucl.ac.uk

Abstract

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.

  • Child health (paediatrics)

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