Tadić, V;
Robertson, AO;
Cortina-Borja, M;
Rahi, JS;
(2020)
An Age- and Stage-Appropriate Patient-Reported Outcome Measure of Vision-Related Quality of Life of Children and Young People with Visual Impairment.
Ophthalmology
, 127
(2)
pp. 249-260.
10.1016/j.ophtha.2019.08.033.
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Abstract
Objective: Developmentally sensitive measures of vision-related quality of life (VQoL) are needed to capture age-specific concerns about the impact of living with visual impairment (VI) in children and young people. Our objective was to use our validated vision-related quality of life instrument for children and young people aged 10-15 years (the VQoL_CYP) as the foundation for development of age-specific extensions. / Design: Questionnaire development. Participants: A representative sample of children and young people aged 6-19 years with visual impairment, visual acuity of the logarithm of the minimum angle of resolution (LogMAR) worse than 0.50 in the better eye. They were identified and recruited from Paediatric Ophthalmology clinics at Great Ormond Street Hospital and Moorfields Eye Hospital and in the final phase of the study from 20 further UK hospitals. / Methods: Standard instrument development processes were followed across four phases. 29 semi-structured interviews with children and young people permitted draft age-appropriate instrument extensions. 28 cognitive interviews informed age-appropriate items and response options. Age-appropriate instrument extensions were pre-piloted on 49 subjects to ensure feasibility, and administered via a postal survey to a national sample of 160 for psychometric evaluation using Rasch analysis. Construct validity was evaluated through correlations with the Pediatric Quality of Life Inventory (PedsQL). / Main Outcome measures: Psychometric indices of validity and reliability of the instrument versions. / Results: Interviews confirmed the existing VQoL_CYP content and format were relevant across a wider age-range. Age-appropriate extensions were drafted for children (8-12 years) and young people (13-17 years). Psychometric item reduction produced 20-item child and 22-item young person versions, each with acceptable fit values, no notable differential item functioning, good measurement precision, ordered response categories and acceptable targeting, and no notable differential item functioning on items common to both. Construct validity was demonstrated through correlations with health-related quality of life (r = .71). / Conclusions: Using an efficient child/young person-centred approach we have developed two robust, age-appropriate versions of an instrument capturing VQoL that can be used cross-sectionally or sequentially across the age-range of 8-17 years in research and clinical practice. This approach is likely to be applicable in other rare childhood ophthalmic disorders.
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