Title: Improving diabetic retinopathy screening attendance in non-attenders aged =30 years: mixed methods study
Funder: Health Education England

Abstract: Research question: Is there a lack of engagement of people aged 30 years and high-risk groups with the NHS Diabetic Retinopathy Screening Programme (DESP) and what are the key factors (barriers/enablers) that influence screening attendance? Background: Despite evidence supporting the effectiveness of diabetic retinopathy screening in reducing the risk of sight loss, attendance for retinopathy screening in particular demographic groups is consistently below recommended levels. Several factors including socioeconomic deprivation, language and ethnicity may influence screening attendance. There is a need to identify modifiable barriers/enablers to inform the development of effective interventions to increase attendance and avoid preventable sight loss. Aims and objectives: To analyse patterns of attendance based on age, and identify barriers/enablers to attending reported by persons with diabetes and healthcare professionals (HCPs). The specific objectives are: To investigate age-related patterns of attendance across the DESP, to quantify screening uptake at the level of the individual, local screening programme and general practice. To identify barriers/enablers to attendance from the perspective of adults aged 30 years old with diabetes/ and HCPs. To synthesise research findings and generate evidence-based suggestions for improving screening attendance in this population. To determine the feasibility and acceptability of a candidate intervention to patients with diabetes and HCPs.Methods: This mixed methods study will comprise four phases corresponding to each objective: The EROTES nested study will use the results of the scoping study (EROS study) to conduct a statistical analysis of data to identify patterns of attendance at the level of population based on age (30 years), the screening programme and general practice. Semi-structured qualitative interviews (informed by the Theoretical Domains Framework (TDF) of behaviour change); explore HCPs' views of barriers/enablers, including suggestions for how practice or processes could be altered to improve attendance in at-risk groups. Synthesis of research findings with input from patients and stakeholders to identify and operationalise strategies to improve screening attendance and a one-day 'knowledge exchange' event with end users to make recommendations on the design of future screening interventions in areas or population subgroups with low attendance. Co-design with stakeholders and conduct a feasibility study of a candidate intervention.Timelines for delivery: Study duration will be 56 months. Ethical approval (months 1-6); statistical analysis (months 7-18); interviews and concurrent analysis (months 19-27); interviews with HCPs (months 28-36); synthesis (months 37-45) and knowledge exchange event (month 45); feasibility study (months 46-55); writing and submission of final report (months 56-60). Anticipated impact and dissemination: There is little UK-based research to understand the perspectives of adults and high-risk groups at risk of low retinopathy screening attendance. Understanding factors influencing attendance in these groups is an important step towards identifying policies and processes to increase attendance and reduce inequity. The results of this study will be disseminated to service providers, professional bodies and patient groups to develop theory-informed and tailored strategies that are directed at the level of the individual with diabetes, the screening programme and general practice.

Lay abstract: People with diabetes may develop severe vision loss because of the damaging effects of the disease on small blood vessels at the back of the eye (diabetic retinopathy). In the UK, everyone with diabetes aged 12 years and over is offered annual screening, consisting of taking photographs of the back of the eye (retina) to look for early signs of diabetic retinopathy that might need treatment. Treatment of sight-threatening retinopathy with lasers or injections can avoid vision loss, so it is important that people with diabetes regularly attend their screening appointments. However, across the UK, regular attendance for screening varies. This can have major consequences for identifying sight-threatening disease in good time. There are also financial consequences to the NHS, as the costs of missed appointments is high. Previous research shows that certain groups are more likely to miss their annual appointment. For example, attendance may be lower in those living in deprived areas or among certain ethnic groups. I plan to invite people with diabetes to tell us what stops or would encourage them attend screening. We will use detailed one-to-one interviews (by Skype, FaceTime or phone) to record the views of people with diabetes who go or do not go to their screening appointment. I will also interview healthcare professionals, asking for their views about how systems could be changed to improve attendance. Throughout the study, I will work with a group of people with diabetes, who will help me design questions that feel relevant and easy to answer. My research team and I will organise a workshop with organisers of the screening programmes, retinopathy screening providers, healthcare professionals and people with diabetes. We will ask them to consider and discuss the study results. Our research team consists of people with expertise in statistical methods for managing and analysing data on screening attendance, health psychologists with expertise in studying what influences what people do and how to encourage people to turn up, and healthcare providers with expertise in diabetic retinopathy screening. Our findings will tell us how best to organise the screening programme and to develop specific advice to help change the behaviour of those who miss their screening appointments. I also plan to test one of the interventions in a group of people who do not attend their screening appointment and HCPs. This information will let me know whether it can be used in the wider population.

Research activity codes: 4.3 INFLUENCES AND IMPACT
Health categories: METABOLIC AND ENDOCRINE;EYE