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Study looks at retinopathy awareness among patients with diabetic macular edema
Section:  General Diabetes

A cross sectional analysis of data from participants in the 2005-08 NHANES survey who were 40 years or older with diabetes and diabetic macular edema has some surprising results.  The study was published in the Dec 19 online edition of JAMA Ophthalmology.  

*Less than half of adults who are losing their vision to diabetes reported having been told by a doctor that diabetes could damage their eyesight

*Nearly 3 of every 5 people with diabetes in danger of losing their sight told the researchers they couldn't recall a doctor describing to them the link between diabetes and vision loss

*About half of the people said they hadn't seen a health-care provider in the previous year

*2 in every 5 hadn't received a full eye exam with dilated pupils

*1/3 of them said they already had suffered some vision loss related to their diabetes

Diabetic retinopathy is the most common cause of new cases of blindness in working age Americans and it is usually the result of proliferative diabetic retinopathy or diabetes macular edema (DME).  Because DME can lead to substantial vision loss if left untreated for 1 year or longer, people with diabetes need to be aware of the severity of the condition so they can get it treated.  An eye exam with pupil dilation is needed at least annually to identify the presence of diabetic retinopathy, including DME, even in the absence of vision loss.

Diabetic macular edema occurs when high blood sugar level cause damage to the small blood vessels in the retina.  People with diabetes have at least a 10% risk of developing macular edema during their lifetimes.  The eye disease affects about 745,000 people with type 2 diabetes in the US.  Vision damage can be prevented or halted in 90-95% of cases, if it is treated early enough.  

It was speculated that doctors likely told the patients about the possibility of vision loss but that the message was lost in the overwhelming amount of other information they were told about diabetes at the same time.  

My two cents: At our family medicine center the patients with diabetes are routinely referred for a diabetic eye exam.  Luckily, our eye center is right across the street so transportation isn't an issue, and the cost is covered by Medicare, Medicaid, and other insurers.  So this is one area we appear to be covering rather well on internal audits.  Most of the patients I see are aware of the link between diabetes and vision loss and know that an eye exam is recommended yearly.  So I feel like our doctors and residents are doing a good job regarding eye exams and awareness.  But the information may also come to our patients as word of mouth, along with the information that the eye exams are covered by insurance.  (Sounds like a good topic for a research project.)  

Do your patients know the link between diabetes and vision loss when they initially come to you or is it news to them?


Re: Study looks at retinopathy awareness among patients with diabetic macular edema

Thanks for introducing this very important topic, Micki.

I think that one of the reasons people with diabetes are not aware of the relationship of hyperglycemia to eye problems is that they do not have consistent follow up with a CDE...or at least a supportive diabetes team.

Many times the complications related to diabetes are spouted off in a bunch at one time soon after diagnosis. That is a lot to process when you have been diagnosed with diabetes.

In short, people with diabetes may have been taught that "diabetes causes eye disease" but not that it is persistent hyperglycemia that causes eye disease.....they are so overwhelmed by the diabetes diagnosis they may "forget" or were not told the preventive aspects of annual eye exams and benefits of glycemic control.

People with diabetes are fortunate when they seek care in a supportive environment that follows preventive guidelines along the continuum of care. It sounds like you have such a supportive team at your work location. Kudos to all your team!!!!

Re: Study looks at retinopathy awareness among patients with diabetic macular edema

Another BIG issue that we all tend to forget about that most certainly does affect the prevalance of eye disease in PWDs is health illiteracy.


Inadequate health literacy has been found to be independently associated with worse glycemic control and higher rates of retinopathy among primary care patients with type 2 diabetes, and it may contribute to the disproportionate burden of diabetes-related problems among disadvantaged populations (excerpt from the National Eye Health Education Program Five-Year Agenda).


The National Assessmemt of Adult Literacy (NAAL) measures the health literacy of adults living in the United States. Health literacy was reported using four performance levels: Below Basic, Basic, Intermediate, and Proficient. According to the NAAL, in 2003, approximately:

--36% of adults in the U.S. have limited health literacy

--22% have Basic

--14% have Below Basic health literacy.

--Additional 5% is not literate in English.

--Only 12% has a proficient health literacy level.

 In recent years, the Institute of Medicine and the Agency for Healthcare Quality and Research published reports linking low health literacy with negative patient outcomes. The problem of low health literacy is also increasingly recognized as a problem that influences health care quality and costs.

Health literacy has an effect on a person’s ability to make sound health decisions about his or her health care, and it has a significant impact on the effectiveness of education efforts.

Patients with limited health literacy are more likely not to use preventive health services such as vaccinations and mammograms, and more likely to improperly read medication dosing instructions and referral paperwork.

In a series of focus groups and interviews with patients who have inadequate or marginal health literacy, the patients reported experiencing problems with:


--completing forms

--following medication instructions

--participating in provider-patient interactions

--reading appointment slips, and

--using coping strategies

A study among African American adults suggests that patients who have marginal or inadequate functional health literacy will have difficulty reading, understanding, and interpreting most written health texts and instructions.  In Hispanic/Latino populations, these health literacy problems can be further complicated for those with limited English proficiency.


Studies attest that health literacy is also a marked problem among older adults. One study found that there was considerably higher prevalence of inadequate and marginal health literacy among people aged 85 and older.

A second study found this higher prevalence exists even in an affluent geriatric retirement community.

Failing eyesight, reduced memory, and hearing loss have been found to be variables that adversely affect reading ability and impact health outcomes.

These findings are particularly troubling given that eye disease and low vision noticeably increase with older age and that the average life span for Americans is increasing over time. The higher prevalence of poorer reading and comprehension with aging heightens the need to develop additional or different communications strategies that can address health literacy across diverse groups, but with particular attention to those over the age of 65.


This information is very disconcerting, especially in regard to helping our patients understand the connection between diabetes and eye disease (and how to decrease the risk) given the high rates in health illiteracy.

Mary Ann Hodorowicz