Who is looking after your eyes? Preventing vision loss from diabetic retinopathy

An ACBRD study highlights the challenges and rewards of conducting research to meet the needs of those who are usually ‘hardly reached’

By Dr Amelia Lake

Retinopathy is caused by damage to the tiny blood vessels at the back of the eye due to diabetes. It is a common complication of diabetes, and also the leading cause of blindness and vision loss in working-age adults. Younger adults with type 2 diabetes (T2D) are more than twice as likely to develop retinopathy after 10-15 years, than older adults. Younger adults are also least likely to attend retinal screening, which is the proven pathway to early detection, treatment, and prevention of vision loss. The reasons behind this ‘wicked problem’ are complicated and complex, necessitating multi-level action and a range of strategies. 

As behavioural scientists, our team developed an evidence-based eye health leaflet ‘Who is looking after your eyes?’. Ours was a multidisciplinary team, including specialists from Vision 2020 Australia, Centre for Eye Research Australia, Diabetes Victoria and the ACBRD. A paper describing the evaluation of the Vision 2020 Australia-funded project was published in the March issue of BMC Ophthalmology. 

Eye-Leaflet-18-39We used a randomised controlled trial design and recruited 129 young Australian adults with T2D (aged 18-39 years) into the study. Half of the participants were assigned at random to the ‘intervention’ group, and they received the new Who is looking after your eyes? leaflet (pictured). The other half (the ‘control’ group) received nothing but usual care until the end of the study, when we gave them access to the new leaflet. We assessed whether there were differences between groups at follow-up on uptake of eye examinations and psychosocial factors, such as knowledge, attitudes, beliefs and social support.

As our study was carried out in a ‘real world’ setting, it faced many barriers to success. The main barriers were low numbers of participants recruited into the study and high attrition (drop out) during the study. Ultimately, because of these issues, we were unable to determine whether the leaflet increased uptake of retinal screening. On the positive side, we were able to show that ‘single dose’ exposure to the leaflet increased knowledge, which is known to be an important enabler of retinal screening. We were also able to contribute to the knowledge base around this ‘hardly-reached’ and high-need group. 

Who is looking after your eyes? is freely available from Diabetes Victoria here; a second leaflet, tailored to older adults with T2D is available here. The younger adults-focused leaflet was also an invited case study in the Global Compendium of Good Practice in Integrated Care for Diabetes and eye health. Other activities to understand retinal screening rates in Australia and prevent vision loss from diabetic retinopathy are the National Eye Health Survey and KeepSight, a national diabetes eye screening program which provides information and reminders for eye health checks. To learn more about KeepSight, visit here. 

To read more of our research about young adults, eye health and type 2 diabetes, check out our previous blogs.


Lake AJ, Hateley-Browne JL, Rees G, Speight J. Effect of a tailored leaflet to promotediabetic retinopathy screening among young adults with type 2 diabetes: a randomised controlled trial. BMC Ophthalmology, 2020; 80:https://doi.org/10.1186/s12886-020-1311-y.


Diabetes-related retinopathy is the leading cause of blindness and vision loss in working age adults in Australia. An eye health leaflet tailored to meet the needs of young adults with type 2 diabetes can increase knowledge, an important factor in uptake of retinal screening to prevent vision loss. Check out our latest evaluation published in BMC Ophthalmology here.

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