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- Valerija Tadic, Ailbhe Hogan, Nidhi Sobti, Rachel Louise Knowles, and Jugnoo Sangeeta Rahi.
- Medical 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.
- Br J Ophthalmol. 2013 Nov 1;97(11):1369-81.
AimTo 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.MethodsA 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.ResultsSearch 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.ConclusionsPaediatric 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.
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