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United Kingdom Diabetic Retinopathy Electronic Medical Record (UK DR EMR) Users Group: report 4, real-world data on the impact of deprivation on the presentation of diabetic eye disease at hospital services
  1. Alastair K Denniston1,2,3,
  2. Aaron Y Lee4,
  3. Cecilia S Lee4,
  4. David P Crabb5,
  5. Clare Bailey6,
  6. Peck-Lin Lip7,
  7. Paul Taylor8,
  8. Maria Pikoula8,
  9. Esther Cook9,
  10. Toks Akerele10,
  11. Richard Antcliff11,
  12. Christopher Brand12,
  13. Usha Chakravarthy13,
  14. Randhir Chavan7,
  15. Narendra Dhingra14,
  16. Louise Downey15,
  17. Haralabos Eleftheriadis16,
  18. Faruque Ghanchi17,
  19. Rehna Khan18,
  20. Vineeth Kumar19,
  21. Aires Lobo20,
  22. Andrew Lotery21,
  23. Geeta Menon22,
  24. Rajarshi Mukherjee23,
  25. Helen Palmer1,
  26. Sudeshna Patra24,
  27. Bobby Paul25,
  28. Dawn A Sim26,
  29. James Stephen Talks27,
  30. Elizabeth Wilkinson28,
  31. Adnan Tufail3,
  32. Catherine A Egan3
  33. UK DR EMR Users Group
  1. 1 University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK
  2. 2 University of Birmingham, Birmingham, UK
  3. 3 NIHR Biomedical Research Centre at Moorfields Eye Hospitals NHS Foundation Trust, University College London Institute of Ophthalmology, London, UK
  4. 4 University of Washington, Seattle, Washington, USA
  5. 5 City University London, London, UK
  6. 6 University Hospitals Bristol NHS Foundation Trust, Bristol, UK
  7. 7 Birmingham and Midland Eye Centre, Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK
  8. 8 Institute of Health Informatics, University College London, London, UK
  9. 9 East Kent Hospitals University NHS Foundation Trust, Kent, UK
  10. 10 Hinchingbrooke Health Care NHS Trust, Hinchingbrooke, UK
  11. 11 Royal United Hospital Bath NHS Trust, Bath, UK
  12. 12 Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  13. 13 Department of Ophthalmology, Royal Victoria Hospital, Belfast, UK
  14. 14 Mid Yorkshire Hospitals NHS Trust, Wakefield, UK
  15. 15 Hull and East Yorkshire Hospitals NHS Foundation Trust, Hull, UK
  16. 16 King's College Hospital NHS Foundation Trust, London, UK
  17. 17 Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK
  18. 18 Calderdale and Huddersfield NHS Foundation Trust, Calderdale, UK
  19. 19 Wirral University Teaching Hospital NHS Foundation Trust, Wirral, UK
  20. 20 Moorfields Eye Centre at Bedford Hospital, Bedford, UK
  21. 21 Faculty of Medicine, University of Southampton, Southampton, UK
  22. 22 Frimley Park Hospital NHS Foundation Trust, Frimley, UK
  23. 23 Leeds Teaching Hospitals NHS Trust, Leeds, UK
  24. 24 Barts Health NHS Trust, London, UK
  25. 25 Barking, Havering and Redbridge University Hospitals NHS Trust, Romford, UK
  26. 26 Moorfields Eye Centre at Croydon University Hospital, London, UK
  27. 27 The Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle, UK
  28. 28 Northern Devon Healthcare NHS Trust, Barnstaple, UK
  1. Correspondence to Dr Alastair K Denniston, University Hospitals Birmingham NHS Foundation Trust, Birmingham B15 2WB, UK; a.denniston{at}bham.ac.uk

Abstract

Aim To assess the impact of deprivation on diabetic retinopathy presentation and related treatment interventions, as observed within the UK hospital eye service.

Methods This is a multicentre, national diabetic retinopathy database study with anonymised data extraction across 22 centres from an electronic medical record system. The following were the inclusion criteria: all patients with diabetes and a recorded, structured diabetic retinopathy grade. The minimum data set included, for baseline, age and Index of Multiple Deprivation, based on residential postcode; and for all time points, visual acuity, ETDRS grading of retinopathy and maculopathy, and interventions (laser, intravitreal therapies and surgery). The main  outcome measures were (1) visual acuity and binocular visual state, and (2) presence of sight-threatening complications and need for early treatment.

Results 79 775 patients met the inclusion criteria. Deprivation was associated with later presentation in patients with diabetic eye disease: the OR of being sight-impaired at entry into the hospital eye service (defined as 6/18 to better than 3/60 in the better seeing eye) was 1.29 (95% CI 1.20 to 1.39) for the most deprived decile vs 0.77 (95% CI 0.70 to 0.86) for the least deprived decile; the OR for being severely sight-impaired (3/60 or worse in the better seeing eye) was 1.17 (95% CI 0.90 to 1.55) for the most deprived decile vs 0.88 (95% CI 0.61 to 1.27) for the least deprived decile (reference=fifth decile in all cases). There is also variation in sight-threatening complications at presentation and treatment undertaken: the least deprived deciles had lower chance of having a tractional retinal detachment (OR=0.48 and 0.58 for deciles 9 and 10, 95% CI 0.24 to 0.90 and 0.29 to 1.09, respectively); in terms of accessing treatment, the rate of having a vitrectomy was lowest in the most deprived cohort (OR=0.34, 95% CI 0.19 to 0.58).

Conclusions This large real-world study suggests that first presentation at a hospital eye clinic with visual loss or sight-threatening diabetic eye disease is associated with deprivation. These initial hospital visits represent the first opportunities to receive treatment and to formally engage with support services. Such patients are more likely to be sight-impaired or severely sight-impaired at presentation, and may need additional resources to engage with the hospital eye services over complex treatment schedules.

  • electronic medical record
  • diabetes

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: http://creativecommons.org/licenses/by/4.0

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Footnotes

  • AKD and AYL contributed equally.

  • Collaborators The full list of authors comprising those sites of the UK DR EMR Users Group contributing to this study is provided in online supplementary appendix 1.

  • Contributors AKD, AYL, AT and CAE conceived and designed the study; AYL, CSL, DPC, MP and PT collated the data and undertook primary analysis; TA, RA, CB, CB, RC, UC, ND, LD, HE, FG, RK, VK, PLL, AiL, AnL, GM, RM, BP, SP, HP, DAS, JST and EW led the study at the individual contributing centres, including local data collation, and contributed to interpretation of the data. All authors drafted and revised the manuscript. All authors gave final approval of the version to be published. AKD and AYL share the role of joint first authors. CAE is the guarantor of the manuscript.

  • Funding This work was supported in part by an unrestricted research award by Novartis Pharmaceuticals. No member or affiliate of Novartis had any input into data analysis, interpretation of the data or writing the manuscript. This research has received a proportion of its funding from the Department of Health’s NIHR Biomedical Research Centre for Ophthalmology at Moorfields Eye Hospital and UCL Institute of Ophthalmology. The views expressed in the publication are those of the authors and not necessarily those of the Department of Health. This research was in part supported by Research to Prevent Blindness (AYL, CSL).AKD receives a proportion of their funding from the Wellcome Trust, through a Health Improvement Challenge grant (200141/Z/15/Z). AKD receives a proportion of their funding from the Department of Health’s NIHR Biomedical Research Centre at Moorfields Eye Hospital and UCL Institute of Ophthalmology.

  • Competing interests CAE has received consultancy fees from Medisoft. LD has undertaken advisory board work previously for Novartis, Bayer, Allergan, Alimera, Alcon, Oraya and Thrombogenics; and received speaker fees from Bayer, Novartis and Alimera, and travel grants from Novartis, Bayer and Allergan. HE has undertaken advisory board work for Novartis and Bayer; received speaker fees from Novartis, and travel grants from Novartis, Bayer and Allergan. RM has undertaken advisory board work for Alimera; received speaker fees from Bayer and Alcon; and obtained travel and educational grants from Novartis and Bayer. UC has undertaken advisory board work for Allergan, Bayer, Novartis and Roche; and received speaker fees from Heidelberg and Zeiss. SP has undertaken advisory board work and received travel grants from Bayer, Alimera, Allergan and Novartis. DPC has received speaker fees from Allergan and Santen. DAS has received consultancy fees from Big Picture Medical; speaker fees from Bayer, Novartis, Allergan and Haag-Streit; and travel grants from Bayer and Allergan. AnL has received travel grants from Bayer and Allergan. CB has undertaken advisory board work for Alimera, Bayer and Novartis, and received travel support/speaker fees from Alimera, Bayer and Novartis. FG has undertaken advisory board work for Novartis, Bayer, Allergan, Alimera, Alcon and Roche; received speaker fees from Bayer, Novartis, Alimera and Allergan, and travel grants from Bayer and Allergan. RK has undertaken advisory board work for Alimera; received speaker fees from Novartis, and travel grants from Novartis, Bayer, Alimera and Allergan. TA has undertaken advisory board work for Bayer; received speaker fees from Novartis, and travel grants from Novartis and Bayer. HP has received travel grants from Bayer and Alimera. RA has received travel grants from Novartis, Bayer and Allergan. VK has undertaken advisory board work for Polyphotonix and received speaker fees from Heidelberg. ND has undertaken advisory board work for Novartis and Allergan; received speaker fees for Novartis and Bayer; and received travel grants from Novartis, Allergan and Bayer.

  • Patient consent Not required.

  • Ethics approval The lead clinician and Caldicott Guardian (who oversees data protection) at each centre gave written approval for data extraction. Patient identifiers were stripped out, and site and clinician data were pseudo-anonymised, and on this basis an ethics committee determined that formal ethics approval was not required. The study protocol was approved by the head of research governance at the lead clinical centre. This study was conducted in accordance with the Declaration of Helsinki and the UK’s Data Protection Act.

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

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