Care lacking for diabetic eye diseases worldwide

Millions of adults around the world run the risk of losing their eyesight because of inattention to complications of diabetes, according to a team of international researchers.

“A quarter of people with diabetes surveyed are not discussing eye complications with their health care professional, with many presenting when vision problems have already occurred,” the report said.

The Diabetic Retinopathy Barometer Report was produced by the International Federation on Ageing (IFA), International Diabetes Federation (IDF), International Agency for the Prevention of Blindness (IAPB), and Bayer Pharma. Bayer is working with Regeneron to market Regeneron’s aflibercept (Eylea), a treatment for diabetic retinopathy, worldwide.

The researchers conducted a literature review. They surveyed 4,340 patients and 2,329 providers in 41 countries online, mostly in developed countries. They interviewed 48 providers and 73 patients in Germany, Saudi Arabia, Japan, Romania, Mexico, Argentina, Uganda, and Bangladesh to gain “qualitative” perspectives.

The literature review provided some epidemiological context: 415 million adults were living with diabetes in 2015, of whom 75% were in developing countries, they found.

By 2040, the number of adults with diabetes is set to rise to 642 million, about 10% of the adult population between ages 20 and 79 years, they said.

This vast prevalence of diabetes has led to the spread of diabetic retinopathy, which causes 1% of all visual impairment in the world, the researchers found.

In this study, 7.6% of adults with diabetes had diabetic macular oedema and 27% had either diabetic macular oedema or retinopathy. The rates of these eye diseases were slightly higher in Europe than in the Americas or the Western Pacific Region. A high proportion of people with diabetic eye diseases also had other complications of diabetes.

Over half of the ophthalmologists surveyed said that their patients’ limited education about diabetic eye diseases was a serious problem. Patients agreed, with almost a third reporting that they had not received any information on eye complications from “traditional” sources, such as their doctor or nurse.

Over half of providers did not have information on diabetes and potential eye complications or had inadequate information to offer their patients, according to the surveyors. They reported that patients didn’t seem to understand the importance of eye exams, or thought the risk of eye-related complications was small.

While patients said that loss of vision was the complication of diabetes they feared the most, 20% thought their vision problems were a normal part of aging, and some did not schedule screening or make any other special effort to prevent these problems.

Both patients and ophthalmologists said there were long wait-times for appointments, and a third of the patients said that the costs of appointments were prohibitive. A quarter said they were deterred by long wait times once they arrived for the appointments. Almost 1 in 5 reported limited access to eye examinations near their homes.

Close to two-thirds of ophthalmologists believe that late diagnosis is the greatest barrier to improving outcomes, with over half saying that people with diabetes present when vision problems have already occurred, and in many cases when it is too late for treatment.

Over a quarter of patients had either never discussed eye complications with their health care professional or did so only after the onset of vision loss symptoms.

The patients mentioned a variety of other challenges to managing their diabetes, including the difficulty of eating well, competing priorities, and not wanting to think about having diabetes.

About a quarter of patients said that the high cost of care and long wait times to see their specialist limited their access to care. They said that free or low-cost medicines were essential to them, but they also depended on support from family and friends and on health education.

Of those with diabetic macular oedema, 42% were enrolled in a diabetes support program to help them manage their diabetes, almost double the proportion of those with diabetes who did not have macular oedema.

Ophthalmologists were struggling with their own challenges. One in five said they lacked guidelines on referrals and screening, a finding that puzzled the researchers since international guidelines, such as the International Council of Ophthalmology Guidelines, can be readily accessed.

Almost two-thirds of those diagnosed with diabetic eye diseases received treatment, however. The most common was laser, followed by surgery, and anti-VEGF therapy.

Of those treated, over three-quarters said the treatment had been successful and either their vision had improved or their vision had stayed the same. A third of those with untreated diabetic eye disease said that their doctor did not recommend treatment.

The authors acknowledged that respondents in the survey. Notably, the participants were not a random sample but were recruited through “patient and civil society organisations.” Also some countries were overrepresented and others underrepresented.

And patients did not necessarily understand whether their diagnosis was “diabetic retinopathy” or “diabetic macular oedema” or when to use the umbrella term, “diabetic eye disease.”

Still they pointed out that their findings matched those of other published studies.

“Considering the findings of the DR Barometer Study, ‘now’ is the time to act to develop cost-effective strategies to prevent diabetes-related vision loss,” they concluded.