Robertson, Alexandra O.; (2018) Measuring the impact of visual impairment during childhood and adolescence: Development of vision-specific patient-reported outcome measures for children and young people living with visual impairment. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Patient-reported outcome measures (PROMs) are increasingly becoming the gold standard for reporting on the quality of healthcare and are used to capture information about the subjective impact of disability or impairment. In the UK, it is estimated that 2 per 1000 children are visually impaired. Despite this, there is a dearth of psychometrically robust and age-appropriate PROMs designed for children and young people. To address this, a pre-established theoretical and methodological framework was applied to explore the day-to-day impact of visual impairment during childhood and adolescence and, in doing so, develop a suite of age-appropriate, vision-specific PROMs. Specifically, this thesis documents the development of PROMs designed for young people aged older than 15 years. The parallel work comprising final psychometric evaluation of PROMs designed for children aged younger than 10 years is also reported demonstrating calibration of the instruments to allow for their use longitudinally in paediatric ophthalmology contexts. One hundred and twenty-nine young people (aged 13-19 years) living with visual impairment took part in four phases of instrument development, comprising semi-structured interviews, cognitive interviews, and national postal surveys. A further 86 children (aged 7-13 years) took part in the final phase of psychometric validation for the child-instrument versions. Qualitative analysis revealed fluctuation in the self-reported impact of visual impairment during childhood and adolescence, and results have implications for developing and administering interventions to promote self-reported outcomes. The final suite of age-appropriate instruments is grounded in the perspectives of children and young people living with visual impairment and psychometrically robust for use independently, and simultaneously, within clinical practice. Follow-up studies are needed to generate the evidence required to understand children’s, young peoples’, parents’ and clinicians’ attitudes towards using the PROMs, as well as the feasibility of implementing the developed instruments within ophthalmology contexts, and with attention to novel, vision-specific approaches.

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