Vulnerabilities in diabetic eye screening for children and young people in England

Abstract

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.

Clinical and Demographic Factors Associated With Diabetic Retinopathy Among Young Patients With Diabetes

“…Notably, the 2021 American Diabetes Association guidelines specifically state that retinal photography is an acceptable modality for DR screening among youths with type 2 diabetes, but the guidelines do not mention retinal photography for those with type 1 diabetes . The use of fundus photography located in pediatric offices rather than ophthalmologic clinics in our study was likely helpful to our ability to form a large cohort of patients because increased ease of access to DR screenings increases adherence to guidelines …”

Epidemiology of visual impairment, sight-threatening or treatment-requiring diabetic eye disease in children and young people in the UK: findings from DECS

“…We have previously reported vulnerabilities in ascertainment of eligible children/young people in the UK's National Diabetic Eye Screening Programme 17,28 which is delivered through more than 60 standalone programmes designed for, and managing predominantly, adults with type 2 diabetes. Screening outcome is communicated directly (in adult-orientated letters) to the child/young person and family.…”