Developing culturally-competent tele-retina screening for diabetic retinopathy

Diabetic retinopathy is a leading cause of preventable blindness in Canada. Guidelines recommend yearly diabetic retinopathy screening (DRS) for people with diabetes to reduce the risk and progression of vision loss. However, most Canadians with diabetes have not attended screening in the last year, and almost a third never have. Rates are even lower in newcomers to Canada including people arriving from China, Africa and the Caribbean; groups also at higher risk of developing diabetes complications. This project builds on our foundational research investigating ways of improving diabetic retinopathy screening attendance.

We conducted a systematic review of the barriers and enablers to DRS attendance that identified factors that get in the way of DRS attendance, including: 

• Environmental contexts and resources (e.g., access, competing priorities, economic concerns, schedule, referral problems, and specialist service availability)
• Social influences (e.g., doctor-patient communication including language, trust, community support, and stigma)
• Knowledge (e.g., about diabetic retinopathy, of the difference between routine eye tests and screening)
• Memory, attention, and decision processes (e.g., lack of symptoms, co-morbidities, and forgetting)
• Emotions (e.g., fear of harm to eyes, defensiveness, and overwhelm)
• Beliefs about consequences (e.g., screening provides important health status information but worry about harmful effects)

We’ve reviewed the evidence from randomized trials of interventions to improve DRS attendance to determine the behaviour change techniques included in interventions that were associated with greater attendance, including:

• Goal setting
• Problem solving
• Feedback on outcomes of behaviour
• Social support
• Credible source
• Restructuring the social environment
• Prompts/cues

The studies that we identified in our review included only three conducted in Canada and only one involved a minority group. We then conducted a study that investigated the barriers and enablers to DRS attendance among newcomers to Canada from China (in Mandarin) and Africa and the Caribbean (in French). We identified similar barriers across groups, such as views about harms caused by screening itself, issues including forgetting, lack of transparency on screening costs (some out-of-pocket), wait times and making/getting to appointments, lack of awareness about retinopathy screening, language barriers, and family and clinical support. We identified specific barriers to the groups, such as preference to return to country of birth for screening, impact of winter, and preferences for alternative medicine. 

Access to DRS is a clear barrier, and tele-retina screening is a promising, cost-effective solution. However, access is not the only barrier and tele-retina screening alone will not ensure newcomers attend. Language barriers, preferences for care outside of Canada, knowledge, fears about screening harming eyes, remembering, lack of transparency about costs, and family influences are among other barriers. There is a need to work with each community to co-develop a tele-retina screening program that also address remaining.

Our overall goal was to co-develop and assess the feasibility of delivering a linguistically- and culturally-competent tele-retina screening program for newcomers to Canada

In 2022, we worked with each community to co-develop a culturally and linguistically tailored, tele-retina screening program in Ottawa. Along with our partners at Centretown Community Health Centre (CCHC) and the Ottawa Eye Institute, we completed a pilot program to test the feasibility and acceptability of Diabetes Eye Screening Ottawa (DESO). Between November 2022 and June 2023, DESO screened over 80 new clients and helped people within these communities access and attend follow-up eye care. 

Today, the DESO program continues to accept referrals from newcomers to Canada from Chinese and Afro-Caribbean communities while broadening outreach to accept referrals for anyone living with diabetes in Ottawa. As we continue screening for diabetic retinopathy though the DESO program at CCHC, we continue to work with community partners to evaluate and adapt the program to meet diverse client needs (e.g., expanding translation/ language services).

If you are interested in learning more about DESO, you can visit the program website: Diabetes Eye Screening Ottawa - Diabetes Central Ottawa.