Background: Children and young people (CYP) living with diabetes require integrated child-centered care. We hypothesized that suboptimal uptake to diabetic retinopathy screening in CYP may be partly related to the degree of services integration. We investigated the structure of the current pediatric diabetic eye care pathway and associations between service-level characteristics and screening uptake. Methods: A quality improvement project between January and May 2017 comprising a survey of practice of all 158 pediatric diabetes services (pediatric diabetes units, PDUs) across England and secondary data analysis of routinely collected service data. Generalized linear models for proportional responses were fitted to investigate associations between reported PDU characteristics and screening uptake. Results: 124 PDUs (78%) responded. In 67% (n = 83), patients could be referred directly to screening programs; the remainder relied on primary care for onward referral. 97% (n = 120) considered eye screening results useful for counseling patients but only 65% (n = 81) reported it was “easy” to obtain them. Factors independently associated with higher screening uptake were a higher proportion of patients referred from primary care (OR = 1.005; 95%CI = 1.004-1.007 per 1% of increase), absence of “out-of-catchment area” patients (OR = 1.13; 95%CI = 1.04-1.22), and easy access to eye screening results (OR = 1.45; 95%CI = 1.34-1.56). Conclusions: There is limited direct communication between the services involved in diabetic eye care for CYP in England. This risks reducing the effectiveness of diabetic retinopathy screening. Similar vulnerabilities are likely to exist in other countries where retinopathy screening for CYP has been “bolted on” to provision for adults.
Bibliographical noteFunding Information:
We thank all participating Pediatric Diabetic Units, the National Children & Young People's Diabetes Network and the members of the DECS group (Supplement file 1). 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. M. C. I.-B. was also funded by National Commission for Scientific and Technological Research in Chile (CONICYT). A. L. S. is funded, and J. S. R. is supported in part by the National Institute for Health Research (NIHR) Biomedical Research Centre based at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology. Professor Rahi is a National Institute for Health Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health. The funding organizations had no role in the design or conduct of this research.
© 2019 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Copyright 2019 Elsevier B.V., All rights reserved.
- child care
- diabetic retinopathy
- integrated health care systems
- screening programs
ASJC Scopus subject areas
- Internal Medicine
- Pediatrics, Perinatology, and Child Health
- Endocrinology, Diabetes and Metabolism