Research project aims to make a difference with regular screening programs for diabetic retinopathy
Advocate Ryan Hooey (right), who lives with type 1 diabetes, experienced sudden vision loss from diabetic retinopathy (DR). He supports the Diabetes Canada-funded research project that aims to implement more regular screening to protect the sight of individuals with diabetes. supplied
Retinopathy is a serious complication of diabetes that can develop in anyone with type 1 or type 2 diabetes. One in three people with diabetes has retinopathy, and one in 10 will develop a vision-threatening form of the disease.
Diabetes is the leading cause of preventable blindness in those 20 to 65 years of age. The word “preventable” is important. Diabetes experts have the knowledge to help preserve the sight of people with diabetes, but the challenge is there are barriers to ensuring at-risk individuals receive the required care.
Research funded by Diabetes Canada and the Canadian Institutes of Health Research (CIHR) aims to meet this challenge head-on.
Eliminating barriers to regular eye screening for people at risk
Treatments for DR are most effective when provided before serious damage has occurred. Making a diagnosis is often difficult in the early stages, however, when symptoms may be mild or not present at all. That is why Diabetes Canada Clinical Practice Guidelines recommend that people living with diabetes are screened for DR on an annual or biannual basis.
The principal investigator for the research project is Dr. Valeria Rac, program director, Health System and Technology Evaluation, at the Ted Rogers Centre for Heart Research, Toronto General Hospital Research Institute.
The research is funded by a team grant, combining the efforts of researchers, patient partners, health-care providers, and decision- and policy-makers across four provinces.
“Current screening rates fall remarkably short of Diabetes Canada’s guidelines, despite the availability of optometrists and ophthalmologists that can do the screening,” says Dr. Rac.
Dr. Rac and her research team are starting with a focus on Ontario, where recent data shows that between 30 and 40 per cent of Ontarians do not get DR screening as recommended. “Rates are even higher in certain communities such as younger individuals, those with lower income, newer immigrants and remote Indigenous communities,” she says. “Many of the people who need to be screened are simply falling through the cracks.”
“Current screening rates fall remarkably short of Diabetes Canada’s guidelines, despite the availability of optometrists and ophthalmologists that can do the screening.”
Some of the barriers to regular screening are based on cultural and language differences, while others relate to lack of access to primary care physicians, and the fact that many people with diabetes don’t know about the importance of screening. Sometimes, patients can’t go to screening appointments during working hours or can’t afford to travel to a far-away location for testing.
Through this project, the researchers are collecting information from the provincial health-claims database and local data provided through Ontario community health centres to create a list of individuals who are due for DR screening. The names of those individuals are sent to health-care providers who then invite them to be screened.
Building a better system for the long term
The DR screening initiative is helping individuals get evaluated in the short term, while also gathering evidence to support longer-term change. “The initiative will be rigorously evaluated to see if that approach works for the patients, providers and the system, by exploring patient and provider experiences, implementation success factors and challenges, effectiveness and cost-effectiveness,” says Dr. Rac.
“The overarching goal is to develop an organized, population-based DR screening program for people in Ontario – similar to breast cancer screening, where individuals are notified their screening is due,” she explains. “Then, if the person with diabetes is diagnosed with DR, proper treatment would be initiated in a timely manner, along with appropriate follow-up over time.”
Dr. Rac and her colleagues are going to undertake similar programs in Alberta, British Columbia, and Newfoundland and Labrador.
Ryan Hooey, an advocate and person living with type 1 diabetes, is pleased to see these efforts to expand DR screening for Canadians. “I woke up one Sunday and couldn’t see. I was 26. Because of diabetes, I lost my sight,” he says. “Now I stand with Diabetes Canada, as they advocate and support research enabling improved access to sight-saving eye exams and treatment.”
Dr. Rac looks forward to a future where every Canadian province implements the type of systematic DR screening program that has proven so successful in the United Kingdom. “The UK has an excellent model that has been well studied, and the evidence shows it’s making a real difference,” she says. “Across Canada, we can learn and emulate similar models, to finally eliminate diabetic retinopathy as the leading cause of blindness in working-age individuals.”
To view this report on The Globe's website, visit globeandmail.com
To view the full report as it appeared in The Globe's print edition: World Diabetes Day