Title: The impact of cessation of screening for diabetic eye disease on people with diabetes during the COVID-19 pandemic
Funder: Health and Care Research Wales (Welsh Government)

Abstract: Background: Diabetic retinopathy (DR) was the leading cause of blindness in the working population in the UK for many decades prior to the introduction of systematic screening in 2003. Screening detects DR at an early stage when it is asymptomatic and treatment is most effective. In response to the COVID-19 pandemic the Welsh government announced the suspension of all non-urgent services, and Public Health Wales suspended all screening activities including diabetic eye screening. In September 2020 there was a phased approach to the restart of screening starting with those at highest risk. However, with new policies such as social distancing reducing capacity in clinics the service will take time to recover. Aims: To understand how people with diabetes and healthcare professionals became aware about cessation of screening, and the impact on emergency eye care during lockdown. We want to understand the impact of the interruption/delay in screening on the progression of DR, due to the COVID-19 pandemic in Wales. Objectives • Establish how and when people became aware of the cessation, assess the value of the information and its impact. • Evaluate the impact of COVID-19 on the natural history of DR. • Evaluate the impact on hospital eye services (HES) during and after lockdown for those already attending HES and/or requiring emergency eye care. Plan: The study will have three work streams: 1. Questionnaires and interviews will be used to understand the experience and the effect that stopping screening has had on people with diabetes, related health care professionals, families, carers and others. 2. Understand how diabetic retinopathy and vision may have changed between the pre- and post-lockdown screening appointments. Data from the screening service will be linked anonymously with data from primary and secondary care. We will also be able to look at the effect COVID-19 infection has had on changes in DR in people with diabetes including the Black, Asian and Minority Ethnic (BAME) groups and those shielding. 3. An all Wales review of HES clinical records will be undertaken to understand the effects lockdown and the stopping of screening had on those attending hospital eye service, their treatment requirements and vision. Potential benefits: Sight loss/ blindness is amongst the most feared complication of diabetes, necessitating the early detection and treatment of sight threatening DR. Most people with diabetes find their annual DR screening appointments a reassuring part of their care. Therefore, understanding how the cessation of screening was perceived by this vulnerable population and its impact on the status of their eyes and vision is mandatory. Learning from the eye health outcomes due to the cessation of screening will provide lessons to be learnt in the event of another phase of COVID-19 or any other pandemic. The qualitative aspects of the study will also provide additional important information of relevance to people with diabetes and HCPs whilst document their aspirations for the future of screening for DED. The situation presented by the COVID-19 lockdown will allow the safety of extended screening intervals to be assessed in a real-life setting and an opportunity to move closer towards a risk-based screening interval screening programme in the near future to improve the efficiency and cost effectiveness of DESW. The study will also allow us to understand the impact a pandemic has had on emergency eye services.

Lay abstract: Aims: To evaluate the impact of stopping screening for diabetic eye disease i.e. diabetic retinopathy (DR), due to the COVID-19 pandemic across Wales. Reintroduction of screening will provide essential information on the effect of the delay on pre-existing diabetic retinopathy and the sight of people with diabetes and their quality of life. The knowledge gained from this research will help to determine for each individual a safe interval between screening episodes to avoid the occurrence and progression of sight-threatening retinopathy and blindness with the introduction of timely medical and/or surgical intervention. This information will inform the relevant allocation of resources if and when faced with future pandemics. Background: Currently in the UK, diabetic retinopathy screening (DRS) is performed usually once a year with a small number of people requiring to be reviewed more often because of a higher risk of developing sight-threatening DR. COVID-19 has seen all non-urgent services stopped in March 2020 with screening for DR planned to re-start in Wales during September 2020. What you hope to discover: The effect stopping screening had on people with diabetes and healthcare professionals as well as their opinions on the future of the service. Whether or not there was any impact of COVID-19 or the cessation of screening on the progression of diabetic retinopathy and whether there was any changes in the rates of development of sight-threatening DR and numbers seeking emergency eye care. This information would then be used to inform policy should future lockdowns or pandemics arise. Patient and public involvement: People including BAME persons and carers of people with diabetes will be very much involved in this study as their experience before, during and after the pandemic will be an important part in judging the appropriateness of the current screening service and for planning its future. We have an established public reference panel including people with diabetes, parents of children with diabetes and young persons with diabetes. Three members of this panel have been fully involved at each stage in the design and development of this study, reviewing and finalising the proposal. The panel members will also be involved in developing and testing planned questionnaires. Some of the panel members will also be on the different steering groups for the study so that their views are considered throughout. We have tried to ensure that the health, safety and wellbeing of all people with diabetes undergoing screening or attending hospital eye services are fully considered in this application. Dissemination: The findings from this study will be reported to our public reference group, and Public Health Wales with manuscripts submitted for publication in peer reviewed journals. Presentations at related national and international conferences will also be undertaken. The public representatives involved in this study will present at meetings of people with diabetes and prepare lay summaries to published on our diabetes research group website.

Research activity codes: 4.3 INFLUENCES AND IMPACT;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: METABOLIC AND ENDOCRINE;EYE