We aimed to develop and assess age-appropriate child and young person, self and proxy report tools to capture and characterise eye symptoms in childhood ocular inflammatory disease. Children and young people aged under 18 years diagnosed with inflammatory eye disease (uveitis), and their families, were recruited to a multiphase study, involving: text and pictogram items generation through focus groups and interviews (Phase 1), pre-testing face validity analysis including and discussion amongst a multidisciplinary professional panel (Phase 2), and pre-piloting (Phase 3) and piloting (Phase 4) of the instrument amongst a representative sample of the target population. A total of 170 participants, comprising 113 children/young people and 57 parents/carers, were recruited. Phase 1 resulted in the generation of 60 items. Following phases 2 to 3, these items were developed into self-completion, and assisted self-completion tools for children aged 9 years and older, and those aged under 9 years respectively, and a proxy score, for completion by parents and carers. Correlations scores between individual item and whole domain scoring were above 0.58 for the self-completion tools and above 0.39 for the proxy completion tool. Initial Cronbach alpha for the tool overall was good at 0.84, with within-domain alphas of 0.81 to 0.87. In conclusion, these instruments demonstrate the feasibility of capturing ocular sensations in children and young people, with a patient centred development approach resulting in tools with high rates of completion, and acceptable internal instrument consistency.

The authors have declared no competing interest.

National Institute for Health and Care Research (NIHR Clinician Scientist award CS-2018-18-ST2-005)

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The London - Queen Square Research Ethics Committee (REC reference 19/LO/0729) gave ethical approval for this work

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