Cumberland, PM

Diabetic Eye Disease in Childhood Study (DECS) group,

Ibanez-Bruron, MC

Rahi, JS

Solebo, AL

Diabetic Eye Disease in Childhood Study (DECS) group

UCL Discovery

For Peer Review      Screening for diabetic retinopathy in children and young people in the UK: potential gaps in ascertainment of those at risk.   Journal: Diabetic Medicine Manuscript ID DME-2017-00140 Manuscript Type: Letter Date Submitted by the Author: 27-Feb-2017 Complete List of Authors: Ibanez-Bruron, Maria; UCL GOS Institute of Child Health, ICH Pop, Policy & Practice Prog; Ulverscroft Vision Research Group, ICH Pop, Policy & Practice Prog Solebo, Ameenat; UCL GOS Institute of Child Health, ICH Pop, Policy & Practice Prog; Ulverscroft Vision Research Group, ICH Pop, Policy & Practice Prog; Great Ormond Street Hospital for Children NHS Foundation Trust, Ophthalmology; Moorfields Eye Hospital NHS Foundation Trust, Paediatric Ophthalmology Service Cumberland, Phillippa; UCL GOS Institute of Child Health, ICH Pop, Policy & Practice Prog; Ulverscroft Vision Research Group, ICH Pop, Policy & Practice Prog Rahi, Jugnoo; UCL GOS Institute of Child Health, ICH Pop, Policy & Practice Prog; Ulverscroft Vision Research Group, ICH Pop, Policy & Practice Prog; Great Ormond Street Hospital for Children NHS Foundation Trust, Ophthalmology; Moorfields Eye Hospital NHS Foundation Trust, Paediatric Ophthalmology Service Keywords: children and adolescents, retinopathy, screening     Diabetic MedicineFor Peer ReviewFull title: Screening for diabetic retinopathy in children and young people in the UK: potential gaps in ascertainment of those at risk.   Short running title: Improving screening for diabetic retinopathy in childhood.  Authors: M.C. Ibanez-Bruron MD, A.L. Solebo FRCOphth, P.M. Cumberland MSc, J.S. Rahi FRCOphth, on behalf of the Diabetic Eye Disease in Childhood Study (DECS) group.  Affiliations of authors: GOS Institute of Child Health, University College London, London, UK (MCI-B, ALS, PMC, JSR); Ulverscroft Vision Research Group, London, UK (MCI-B, ALS, PMC, JSR); Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK (ALS, JSR); Moorfields Eye Hospital NHS Foundation Trust, London, UK (ALS, JSR); Institute of Ophthalmology, University College London, London, UK (ALS, JSR).  Corresponding author:  Professor Jugnoo Sangeeta Rahi FRCOphth.  GOS Institute of Child Health UCL, 30 Guildford Street, London, WC1N 1EH. Tel: 020 7905 2250; email: j.rahi@ucl.ac.uk  Word count: 670 Funding:  This work was funded by the Ulverscroft Foundation, the National Institute for Health Research (NIHR) Biomedical Research Centre at University College London Institute of Child Health / Great Ormond Street Hospital NHS Foundation Trust and Diabetes Research & Wellness Foundation. The funding organisations had no role in the design or conduct of this research.  Conflict of interest statement: We declare no competing interests.           Page 1 of 9 Diabetic Medicine123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960For Peer ReviewAbstract: Letters do not require abstracts.   Page 2 of 9Diabetic Medicine123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960For Peer ReviewText: Guidelines in the UK recommend that children and young people living with Type 1 DM and Type 2 DM undergo annual screening for diabetic retinopathy from the age of 12 years.[1] This is currently delivered though a large number of regional diabetic eye screening programmes (DESPs) which are responsible for identifying eligible children and young people and inviting them to a screening appointment (Fig. 1). In 2014/2015 the National Paediatric Diabetes Audit, based on secondary (hospital-based) care data for over 27,600 children, revealed that only 64% of eligible English children and young people had been recorded as having undergone diabetic retinopathy screening during the last audit year, of whom, 13% were reported to have at least background diabetic retinopathy.[2] One potential cause of low screening coverage is incomplete ascertainment of the eligible population. There has been no systematic investigation of how this population is identified in the English DESPs.  Through multi-disciplinary collaborative clinical research network—the Diabetic Eye disease in Childhood Study (DECS) group – we are undertaking a multi-faceted research programme to address the current paucity of information about the frequency and natural history of childhood diabetic eye disease, in order to inform service planning including diabetic eye screening. From this programme we report here a survey (both postal and electronic approaches) of the 70 English DESPs which was conducted between October 2015 and February 2016. In the absence of a centralised register, contact details of programme leads were manually identified through multiple sources, and at least two reminders were sent to non-responding DESPs. Questionnaires were received from 42 programmes (response rate = 60%). All programmes used primary care (family practitioner) registration systems to compile their screening lists. Eighteen (43%) also drew on information from hospital diabetes clinics (secondary care) as a complementary source.  Less than a third of programmes (n=13) actively searched for eligible patients not registered with a family practitioner, group classified as hard to reach by the DESPs. 52% (n=22) included patients with “syndromatic”/secondary diabetes such as Wolfram Syndrome. In 19% (n=8) of programmes, screening lists were generated entirely manually e.g. using referral letters from family practitioners, and in 24% (n=10) combined manual and electronic methods were used. Frequency of list update varied, from daily to 6 monthly. Information about attendance at Hospital Eye Services following referral for an abnormal screening result was routinely fedback to 93% (n=39) of DESPs.  We report significant heterogeneity and some potential vulnerabilities in the means by which children and young people eligible for diabetic retinopathy screening are identified by DESPs. This may be a risk Page 3 of 9 Diabetic Medicine123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960For Peer Reviewto complete screening coverage in this population.  Differences in methods of ascertainment of children and young people living with diabetes might explain in part the high regional heterogeneity in diabetic retinopathy screening coverage reported by the National Paediatric Diabetes Audit 2014/2015, which ranges from 0% to 100% (median: 77%; interquartile range: 58-91%).[2] Since children and young people living with diabetes are largely diagnosed and managed in secondary care, we suggest it is crucial that both secondary and primary care patient information/registration systems are used to identify this population.  Whilst treatment-requiring paediatric diabetic retinopathy is thought to be uncommon,[3] abnormal retinal vascular findings are present in 6% and 24% of 12 and 18 year olds respectively,[2] and may be the first indicator of microvascular disease.[4] Although there is limited understanding of the natural history of diabetic retinopathy in children and young people, in particular the outcome of the abnormal retinal findings, it is well-recognised that vasculopathy is the main cause of the increased mortality seen in individuals diagnosed with T1 DM in childhood.[5] This, along with the projected doubling European incidence of Type 1 DM between 2005-2020,[6] and the rising incidence of paediatric Type 2 DM,[7] calls for collaborative efforts to increase the diabetic retinopathy screening uptake, ensure integrated paediatric diabetes care, and increase our understanding of paediatric diabetic retinopathy. Other aspects of DECS should provide evidence to support these developments so as to reduce the risk of preventable visual loss and vascular complications in early adulthood.  Authors: M.C. Ibanez-Bruron MD, A.L. Solebo FRCOphth, P.M. Cumberland MSc, J.S. Rahi FRCOphth, on behalf of the Diabetic Eye Disease in Childhood Study (DECS) group. Corresponding author:  Professor Jugnoo Sangeeta Rahi FRCOphth.  GOS Institute of Child Health UCL, 30 Guildford Street, London, WC1N 1EH. Tel: 020 7905 2250; email: j.rahi@ucl.ac.uk    Acknowledgment: We would like to thank to all participating diabetic eye screening programmes, and the DECS Group (online-only supplemental material).  Page 4 of 9Diabetic Medicine123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960For Peer Review       References: 1. National Institute for Health and Care Excellence (NICE). Diabetes (type 1 and type 2) in children and young people: diagnosis and management. NICE guidelines [NG18] August 2015. [Accessed November 2016]. Available from: https://www.nice.org.uk/guidance/ng18  2. National Paediatric Diabetes Audit, Royal College of Paediatrics and Child Health. National Paediatric Diabetes Audit Report 2014-15. Part 1: Care Processes and Outcomes [online]. March 2015. [Accessed November 2016]. Available from: http://www.rcpch.ac.uk/sites/default/files/page/NPDA%20Report%202014-15%20v5.2%20sent%20to%20HQIP%2025.05.2016.pdf 3. Beauchamp G, Boyle CT, Tamborlane WV, Miller KM, Libman IM, Haller MJ, et al; T1D Exchange Clinic Network. Treatable Diabetic Retinopathy Is Extremely Rare Among Pediatric T1D Exchange Clinic Registry Participants. Diabetes Care. 2016;39(12):e218-e219.  4. Rasmussen ML, Broe R, Frydkjaer-Olsen U, Olsen BS, Mortensen HB, Peto T, et al; Microaneurysm count as a predictor of long-term progression in diabetic retinopathy in young patients with type 1 diabetes: the Danish Cohort of Pediatric Diabetes 1987 (DCPD1987). Graefes Arch Clin Exp Ophthalmol. 2015;253(2):199-205. 5. Sandahl K, Nielsen LB, Svensson J, Johannesen J, Pociot F, Mortensen HB, Hougaard P, et al; Increased mortality in a Danish cohort of young people with Type 1 diabetes mellitus followed for 24 years. Diabet Med. 2017;34(3):380-386 6. Patterson CC, Dahlquist GG, Gyürüs E, Green A, Soltész G; EURODIAB Study Group. Incidence trends for childhood type 1 diabetes in Europe during 1989-2003 and predicted new cases 2005-20: a multicentre prospective registration study. Lancet. 2009;373(9680):2027-33. doi: 10.1016/S0140-6736(09)60568-7.  7. Haines L, Wan KC, Lynn R, Barrett TG, Shield JP. Rising incidence of type 2 diabetes in children in the U.K. Diabetes Care. 2007;30(5):1097-101.    Page 5 of 9 Diabetic Medicine123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960For Peer ReviewFigure 1. Points of care of children and young people living with diabetes.      Page 6 of 9Diabetic Medicine123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960For Peer ReviewPaediatric Diabetes Units (Secondary hospital care) DM diagnosis confirmation, registration, monitoring complications, and providing data for the national audit. Hospital Eye Services (HES) (Tertiary care) Conducting diabetic eye screening in selected cases, diagnosis confirmation and treatment of referred cases from DESPs. Family Practitioners  (Primary care)  Referral of CYP the DESPs at 12 years old. Diabetic Eye Screening programmes (DESPs, n=70) Identification eligible population and invitation to diabetic eye screening. Referral cases of sight-threatening retinopathy to HES. Page 7 of 9 Diabetic Medicine123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960For Peer ReviewDiabetic Eye Disease in Childhood Study (DECS) group Dr S. Althauser, Royal Free Hospital, London; Dr J. Anderson, St Bartholomew's Hospital, London; Ms J. Ashworth, Manchester Royal Eye Hospital, Manchester; Dr P. Bhattacharyya, Royal Preston Hospital, Lancashire; Mr S. Biswas, Manchester Royal Eye Hospital, Manchester; Mr C. Brand, Royal Hallamshire Hospital, Sheffield; Dr D. Broadbent, Royal Liverpool University Hospital, Liverpool; Mr A. Brown, Royal Stoke University Hospital, Staffordshire; Mr B. Burton, James Paget University Hospital, Norfolk; Mr A. Chandna, Alder Hey Children's Hospital, Liverpool; Mr H C. Chen, Royal Derby Hospital, Derby; Mr V. Chong, Oxford Eye Hospital, Oxford; Mr S. Choudhary, Chesterfield Royal Hospital, Chesterfield; Dr H. Cilliers, Warwick Hospital, Warwick; Dr M. Clarke, Heartlands Hospital, Birmingham; Ms A. Cole, Bristol Eye Hospital, Bristol; Dr H. Cook, Hull Royal Infirmary, Hull; Dr T. Criddle, Royal Liverpool University Hospital, Liverpool; Mr T. Dabbs, Leeds Teaching Hospitals, Leeds; Mr N. Davies, Chelsea and Westminster Hospital, London; Mr J. Deane, Leicester Royal Infirmary, Leicester; Dr S. Dhanoa, Milton Keynes University Hospital, Milton Keynes; Professor B. Dhillon, University of Edinburgh, Edinburgh; Mr N. Dhingra, Pinderfields Hospital, Wakefield; Ms L. Dhir, Chelsea and Westminster Hospital, London; Dr T. Dugal, Royal Cornwall Hospital, Cornwall; Mr M. Eckstein, Brighton and Sussex University Hospitals, Brighton; Ms C. Egan, Moorfields Eye Hospital, London; Mr H. Eleftheriadis, King’s College Hospital, London; Mr I.A. El-Ghrably, James Cook University Hospital, Middlesbrough; Mr D. Flanagan, Moorfields Eye Hospital, London; Professor B. Fleck, Royal Hospital for Sick Children, Edinburgh; Dr A. Gaskell, Ayr Hospital, Ayr; Dr T. Gazis, Nottingham City Hospital, Nottingham; Ms S. George, Hillingdon Hospital, Uxbridge; Professor F. Ghanchi, Bradford Ophthalmology Research Network, Bradford; Mr C. Goldsmith, James Paget University Hospital, Norfolk; Ms P. Gordon-Bennett, Western Sussex Hospitals NHS Foundation Trust, Sussex; Mr S. Harsum, Epsom and St Helier University Hospitals NHS Trust, Surrey; Mr T. Hashmi, The Pennine Acute Hospitals NHS Trust, Nottingham; Dr J P. Hosker, Doncaster Royal Infirmary, Doncaster; Ms H. Jackson, West Kent Eye Centre, Kent; Dr S. Janikoun, Guy's and St Thomas' NHS Foundation Trust, London; Dr L. Johnson,  Gloucestershire Royal NHSFT, Gloucester; Mr R. Johnston, Cheltenham General Hospital, Gloucestershire; Mr C. Jones, Norfolk and Norwich University Hospital, Norwich; Mrs R. Khan, Calderdale & Huddersfield NHS Trust, West Yorkshire; Mr I. Khan, Hillingdon Hospital, Uxbridge; Ms R. Krishnan, Southampton General Hospital, Southampton; Mrs A. Kulkarni, Warwick Hospital, Warwick; Mr B V. Kumar, Wirral University Hospital NHS Trust, Wirral; Professor G. Leese, Ninewells Hospital and Medical School, Dundee; Mr T. Leong,  Worthing Hospital, West Sussex; Mr A. Lobo, Bedford Hospital, Bedford; Mr V. Long, St. James's University Hospital, Leeds; Dr A. MacLeod, Royal Shrewsbury Hospital, Shrewsbury; Dr M. MacRae, Princess Alexandra Eye Pavilion, Edinburgh; Mrs S. Mann, St Thomas’ Hospital, London; Mr R.H.C. Markham, Bristol Eye Hospital, Bristol; Mr M. McKibbin, St James University Hospital, Leeds; Ms S. Meredith, Queen Alexandra Hospital, Portsmouth; Mr S. Mithra, Queen Elizabeth II Hospital, Hertfordshire; Dr A. Mulvihill, Princess Alexandra Eye Pavilion, Edinburgh; Dr D. Nagi, Mid Yorkshire Hospitals NHS Trust, West Yorkshire; Mr S. Natha, Wrightington, Wigan and Leigh NHS Foundation Trust, Wigan; Mr H. Nayak, Alder Hey Children's Hospital, Liverpool; Mr W.D. Newman, Manchester Page 8 of 9Diabetic Medicine123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960For Peer ReviewRoyal Eye Hospital, Manchester; Dr M. Ng, Southport and Ormskirk NHS Trust, Ormksirk; Ms Z. Ockrim, Moorfields Eye Hospital, London; Dr J.A. Olson, Aberdeen Royal Infirmary, Aberdeen; Mrs O. Osoba, Torbay Hospital, Torquay; Professor D.R. Owens, Diabetes Research Group, Swansea University, Swansea; Mr J. Patil, Furness General Hospital, Barrow-in-Furness; Dr T. Peto, Moorfields Eye Hospital, London; Dr R. Pilling, Bradford Teaching Hospitals NHS Foundation Trust, Bradford; Professor S.M. Rajbhandari, Lancashire Teaching Hospital, Lancashire; Mrs C. Rennie, Southampton General Hospital, Southampton; Mr T. Robinson, Royal United Hospitals Bath NHS Foundation Trust, Bath; Ms C. Sanghvi, East Lancashire Hospitals NHS Trust, Burnley; Mr J. Sardar, Shrewsbury and Telford NHS Trust, Shropshire; Dr S. Sen, Warrington Hospital, Warrington; Ms R. Setty, Bradford Teaching Hospitals NHS Foundation Trust, Bradford; Mr V. Sharma, Manchester Royal Eye Hospital, Manchester; Ms S. Sivaprasad, Moorfields Eye Hospital, London; Mr R. Smith, Buckinghamshire Healthcare NHS Trust, Buckinghamshire; Mr D. Steel, Sunderland Eye Infirmary, Sunderland; Mrs I.M. Stratton, Gloucestershire Retinal Research Group, Cheltenham; Dr C. Styles, Queen Margaret Hospital, Fife; Dr M.I. Tahir, Prince Charles Eye Unit, KE VII Hospital, Windsor; Ms G. Vafidis, Central Middlesex Hospital, London; Ms D. Vaideanu-Collins, James Cook University Hospital, Middlesbrough; Dr J. Warner, University Hospital of Wales, Cardiff; Dr G. Watts, Royal Bolton Hospital, Lancashire; Mr N. Wilson-Holt, Royal Cornwall Hospitals NHS Trust, Cornwall; Mr W. Wykes, NHS Greater Glasgow and Clyde, Glasgow; Dr B. Young, Salford Royal Hospital, Salford.   Page 9 of 9 Diabetic Medicine123456789101112131415161718192021222324252627282930313233343536373839404142434445464748495051525354555657585960

Screening for diabetic retinopathy in children and young people in the UK: potential gaps in ascertainment of those at risk

http://discovery.ucl.ac.uk/1545072/1/submission%20diabetic%20medicine.pdf

Screening for diabetic retinopathy in children and young people in the UK: potential gaps in ascertainment of those at risk

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