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Epidemiology of visual impairment, sight-threatening or treatment-requiring diabetic eye disease in children and young people in the UK: findings from DECS
  1. Maria Carolina Ibanez-Bruron1,2,3,
  2. Ameenat Lola Solebo1,3,4,5,6,
  3. Phillippa Cumberland1,3,
  4. Jugnoo S Rahi1,3,4,5,6
  1. 1 Great Ormond Street Institute of Child Health, University College London, London, UK
  2. 2 Departamento de Oftalmologia, Pontificia Universidad Católica de Chile, Santiago, Chile
  3. 3 Ulverscroft Vision Research Group, London, UK
  4. 4 Moorfields NIHR Biomedical Research Centre, London, UK
  5. 5 Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  6. 6 Institute of Ophthalmology, University College London, London, UK
  1. Correspondence to Jugnoo S Rahi, Population, Policy and Practice Research and Teaching Department, Insitute of Child Health, 30 Guildford Street, London, UK; j.rahi{at}


Background We investigated the incidence and causes of sight-threatening diabetes-related eye disease in children living with diabetes in the UK, to inform the national eye screening programme and enable monitoring of trends.

Methods We undertook a prospective active national surveillance via the British Ophthalmic Surveillance Unit. Eligible cases were children aged 18 years or younger, with type 1 or 2 diabetes, newly diagnosed between January 2015 and February 2017 with sight-threatening diabetic eye disease.

Results Eight children were reported. The annual incidence of all sight-threatening diabetes-related eye disease requiring referral to an ophthalmologist among children living with diabetes (n=8) in the UK was 1.21 per 10 000 person-years (95% CI 0.52 to 2.39) and was largely attributable to cataract (n=5) 0.76 per 10 000 person-years (95% CI 0.25 to 1.77). The incidence of sight-threatening diabetic retinopathy (n=3) among those eligible for screening (12 to 18 year-olds living with diabetes) was 1.18 per 10 000 person-years (95% CI 0.24 to 3.46). No subjects eligible for certification as visually impaired or blind were reported.

Conclusions Secondary prevention of visual disability due to retinopathy is currently the sole purpose of national eye screening programmes globally. However, the rarity of treatment-requiring retinopathy in children/young people living with diabetes, alongside growing concerns about suboptimal screening uptake, merit new consideration of the utility of screening for primary prevention of diabetes-related morbidity by using the screening event and findings as a catalyst for better diabetes self-management.

  • Child health (paediatrics)
  • Lens and zonules
  • Epidemiology
  • Diagnostic tests/Investigation
  • Public health
  • Vision

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  • Twitter Jugnoo S Rahi @Rahi_Eye_Vision.

  • Contributors JSR is the guarantor and agrees to be accountable for all aspects of the work. All authors contributed equally to study conceptualisation and design. MCIB and ALS collected the data. MCIB, ALS and JSR analysed the data. MCIB and ALS wrote the article. PC and JSR critically revised and provided feedback on the manuscript. All authors and approved the final version of the manuscript.

  • Funding This work was funded by the Ulverscroft Foundation, the Diabetes Research & Wellness Foundation. Maria Ibanez-Bruron was funded by National Commission for Scientific and Technological Research in Chile (CONICYT). AL Solebo received support from the National Institute for Health Research Biomedical Research Centre (NIHR BRC) based at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, and was funded by an NIHR Clinician Scientist award. JS Rahi received support from the NIHR BRC based at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology, and was also supported by an NIHR Senior Investigator award. This work was undertaken at UCL Green Ormond Street Institute of Child Health/Great Ormond Street Hospital for children, which received a proportion of funding from the Department of Health’s NIHR BRC funding scheme.

    The funding organisations had no role in the design or conduct of this research. This paper presents independent research. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

  • Competing interests None declared.

  • Data sharing statement No data are available.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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