NEHEP
Straight Talk: Diabetic eye disease in our communities
Transcript
Ms. Ammary-Risch: Welcome to today’s webinar. Again this is Neyal Ammary-Risch and I am the director for the National Eye Health Education Program, also known as NEHEP. We are the health education arm of the National Eye Institute at the National Institutes of Health and our goal is to ensure that vision is a health priority by translating eye and vision research in a public and professional education program. We support collaboration among health professionals, patients, and the public, and we currently have five program areas: oneon Glaucoma; one on Diabetic Eye Disease; another on Vision and Aging; one on Low Vision, and our Spanish language program, ¡Ojo con su visión! or Watch Out for Your Vision. It is my pleasure to help present today’s webinar on diabetic eye disease. Co-presenting today is Dr. Hanna Rodríguez-Coleman. She is an assistant clinical professor at New York Presbyterian Hospital and a senior consultant at the Digital Angiography Reading Center in New York. She is a member of the American Academy of Ophthalmology, the New York State Ophthalmological Society, American Medical Association, and a member of the NEHEP Planning Committee. Welcome Dr. Coleman. In addition we have BrettIves. She is a nurse practitioner and certified diabetes educator. She is currently a doctoral student at Boston University School of Public Health. From 2009 to 2014 she worked to improve health for people with diabetes at Mount Sinai Medical Center, as well as in the nearby communities of east and central Harlem. Brett has published articles on diabetes self-management education in several peer reviewed journals and received her master’s in nursing from Yale University School of Nursing. So welcome Brett. During today’s webinar Dr. Coleman is going to provide a brief overview of diabetic eye disease and how to prevent vision loss. I will provide some information about diabetic eye disease, specifically among Hispanics and Latinos and their perceptions about eye health, and then Brett will present a film called Vision Voice, a documentary highlighting the challenges of three women living with diabetic eye disease. And I will wrap up the presentation with outlining some NEHEP resources that we have on diabetic eye disease that you can use in your community to help raise awareness to howpeople can prevent vision loss. I think you will find these resources especially useful as National Diabetes Month is coming up this November. So I am going to start off now by turning it over to Dr. Coleman, who is going to give an overview of diabetic eye disease.
Dr. Coleman: Thank you. Before we discuss diabetic eye disease, we must first address diabetes. This is a disease that has become an epidemic in the United States. It affects 29 million people today and another 86 million people are estimated to have pre-diabetes, a condition that puts the given increased risk to develop the full disease. Of those with diabetes today, about 8 million are undiagnosed and of those with pre-diabetes nine out of ten don’t even know that they have it. While diabetes affects people of all races and ethnicities, some populations are disproportionately affected. This slide shows that Hispanics, African-Americans, American Indians/Alaska Natives, they all have the highest prevalence of diabetes in our country, in the United States. Today we are going to primarily focus on diabetic eye disease among Hispanics and Latinos. So what is diabetic eye disease? Diabetic eye disease is a group of eye problems that people may face as a complication of diabetes. It includes diabetic retinopathy, which is the most common form of diabetic eye disease, it damages the blood vessels in the retina, which is the light sensitive tissue at the back of the eye that captures vision and transmits it to the brain. Diabetes can also cause cataracts, the clouding of the lens of the eye, and it can cause or increase the risk of glaucoma, an increase in the fluid pressure inside the eye that leads to optic nerve damage and loss of vision. While everybody with diabetes can develop diabetic eye disease, African-Americans, American Indians/Alaska Natives, Hispanics and Latinos, and older adults are at a much higher risk of losing vision or going blind from it. All people with diabetes, type 1 and type 2, are at risk for diabetic eye disease.The longer a person has had the disease, the greater the risk is of developing a visual complication. Diabetic eye disease is serious; it’s a serious complication of diabetes and it’s the leading cause of vision loss and blindness in working adults ages 20 to 74. But people with diabetes can take a preventive, proactive approach to protect their eyesight. As part of good diabetes self-management practices people with diabetes should have a comprehensive, dilated eye exam at least once a year. During the dilated exam the eyecare professional will use drops to dilate the pupil so they can examine the back of the eye and identify any signs of damage or of the disease. Too often, people wait until they notice the changes in their vision to have an exam. At this point, treatment isn’t as effective as it could be if a disease was detected in its earlier stages, before it causes symptoms. And unfortunately, for many cases, vision that is lost in the later stages of the disease cannot be restored. It is really important to emphasize that diabetic eye disease has no warning signs or symptoms in its early stages and the only way to detect it is through this dilated eye exam. There are treatments available and through early detection, timely treatment and appropriate follow up care, 95 percent of severe visual loss and blindness can be prevented. That’s why our message to the people with diabetes is to get a yearly dilated eye exam, because early detection is crucial to preventing visual loss and blindness from the disease. In addition to having a regular eye exam there are other things that people with diabetes can do to delay or slow down the progression of diabetic disease—eye disease. I often tell my patients what NEHEP says to do, and that’s to keep your health on TRACK. Let’s explain TRACK. T is take your medications as prescribed. R is reach and maintain a healthy weight. A, add physical activity to your daily routine. C, control blood sugar, blood pressure and your cholesterol. K, kick the smoking habit—TRACK. So now that you know a little bit more about diabetic eye disease. I am going to turn it over to Neyal, who is going to talk about diabetic eye disease among Hispanics and what they know about it. I will be available to answer questions at the end. Neyal?
Ms. Ammary-Risch: Thank you so much Dr. Coleman. So as I mentioned earlier, Hispanics and Latinos are disproportionately affected by diabetes and also vision loss from it. So I wanted to take a moment to give an overview of this population in the U.S. According to the 2010 Census there are 50 million Hispanics and Latinos in the U.S. and they account for 16 percent of the population. The majority are of Mexican origin, plus those from Puerto Rico and Cuba. As you can see on the map here, most live in the western and southern parts of the country, but the top five states with the largest Hispanic/Latino populations are California, Texas, Florida, New York, and Illinois. Now let’s look at the health of Hispanics in the U.S. in terms of their eye health. One of the first studies funded by the National Eye Institute and the National Center on Minority Health and Health Disparities to assess visual health among this population was Proyecto VER, which stands for vision, evaluation, and research. This study assessed visual impairment in a population based sample of 4,500 Mexican-Americans age 40 and older living in Arizona. Results from this study showed that of the 15 percent of those who were newly diagnosed with diabetes, 23 percent had early to moderate diabetic retinopathy. Another major research initiative was the Los Angeles Latino Eye Study or LALES I, carried out in Los Angeles County in California. LALES was designed to gain a greater understanding of the prevalence and incidence of eye disease among Hispanics and Latinos. The results on the first page show that nearly half of all participants with diabetes, almost a quarter of them had some sign of diabetic retinopathy, and then in the second phase of LALES II, researchers examined more than 4,600 Hispanic/Latinos four years later after they initially enrolled in the study to determine the development of new eye disease and the progression of existing conditions. And what they found is that over the four year period 34 percent of Latinos who had diabetes developed diabetic retinopathy and with those age 40 to 59 having the highest rates. So, as Dr. Coleman mentioned, diabetic eye disease includes cataracts, diabetic retinopathy, and glaucoma. The latest data from the National Eye Institute indicate that an estimated 1.8 million over age 40 have cataracts, 1.2 million have diabetic retinopathy, and 224,000 have glaucoma. These numbers are expected to increase by 2030, and we estimate that 4.7 million Hispanics/Latinos over the age 40 will have cataracts, 3 million will have diabetic retinopathy, and over 600,000 will have glaucoma by 2030. So you can see a really huge upward trend in the number of people who are going to have vision problems from diabetes. So in order to look at what people across the U.S. know about eye health, the National Eye Institute, along with the Lions Clubs International Foundation, had conducted a national survey of public knowledge, attitudes and practices related to eye health and disease. Results from the survey found that compared with other racial and ethnic groups that Hispanics and Latinos reported the least access to eye health information and knew the least about eye health. In fact, only 37 percent reported ever hearing the term diabetic eye disease. And additionally, they were the least likely to have their eyes examined. Only 73 percent of Hispanic/Latinos age 18 and older reported having had their eyes examined by a health care provider. So addition to theKAP Survey, we also conducted focus groups nationwide with a wide variety of populations, among them being Hispanics and Latinos, to gather information on the importance of eye health, what they knew about eye health, what their preferred source of eye health information was, and where they were getting their eye health information. Results from the focus groups, which included participants from Atlanta, Chicago, Washington DC, Houston, New York, Miami, and San Francisco showed that diabetes resulted in a wakeup call for many of them, and in fact, they said that they do place a lot of value on their eyesight, because they associate it with independence and work and enjoying life in general and they are willing to have their eyes examined. We even learned the top four reasons among Hispanic/Latino adults for having an eye exam, and the first is it was just a part of a regular checkup; second, having trouble seeing; third, needing new eye glasses or contact lenses, and lastly, having some type of eye infection, injury, or an eye condition. Unfortunately what we found is that few participants had heard the term diabetic eye disease and were less likely to be familiar with it than African-Americans and whites. Hispanics told us that there is inaccurate information about symptoms and how their eyes are affected by the various eye diseases and they also felt that there is a lack of information and awareness about treatments available for their eyes. Here you can see some of the quotes received from participants in the focus groups, and this confirms some of the things they have told us, that they are willing to have their eyes examined, but I think a lot of them just don’t know when to do it or how often. So now you have a better understanding of diabetic eye disease and its prevalence in Hispanic/Latino populations. So I want to turn it over to Brett, so she can talk about a really great project that was done to address diabetic eye disease among a group of women living in Harlem and how it affected their ability to cope with daily life, so Brett, all yours.
Ms. Ives: Thank you, Neyal. So in late 2007, Mount Sinai School of Medicine received funding from the Centers for Disease Control and Prevention REACH U.S. program and spearheaded the formation of a Community Academic Coalition, which was comprised of researchers, community members, and representatives from community based organizations, all focused on addressing diabetes-related disparities among African-Americans and Latinos. I was part of the coalition rooted in community engagements and partnership and we focused on engagement in the communities of east and central Harlem, the former being where Mount Sinai is located, and the latter being very close by. These arecommunities that are characterized—in terms of demographics—as low income, predominantly black and Latino, and have among the highest obesity, diabetes, and diabetes mortality rates in New York City. Fairly early on our coalition identified eye health as an area focus. We formed a workgroup to explore the scope of the problem locally and to develop an intervention to improve the receipt of eye screenings.So one of these interventions is the focus of my presentation today. As I mentioned at the beginning of my presentation, a few years ago we did some formative work in our community to better understand the status of eye health locally. So we surveyed more than 600 Harlem residents, all adults, and were quite surprised to find that more than half of respondents reported that they had problems with their vision that made it difficult to do the things that they would like to do, and they had difficulty recognizing the faces of family and friends across a regular sized room. And nearly half of respondents reported difficulty reading regular sized print, as well as medicine and price labels. Approximately one quarter met the criteria for low vision based on the screening questionnaire and in our exploration we also found disparities in self-reported eye exams and prevalence of low vision. So people under 65 years of age, Latinos, and people without diabetes were significantly less likely to have had an eye exam in the past year. Those over 65 years of age, Latinos, and people with diabetes are more likely to report low vision. So some things to keep in mind before we watch the film, there are disparities in access to eye health services and subsequently eye health status. There is a high incidence of undiagnosed eye diseases and conditions in minority low income populations. As a certified diabetes educator I am often thinking about the materials and the information we put out there, and I just want to target the point that adults appreciate materials that feature personal narratives, stories that they can relate to. And as eye professionals, those of you who are on the call and webinar I do believe we should be developing narrative-based materials.They are highly effective and I believe they should be multimedia so that they can appeal to auditory and visual learners. And all materials ideally should be developed in partnership with community members in order to garner more buy-in and increase relevancy materials for use in the community. So this film, Vision Voice, seeks to raise awareness about the things we discussed today, which is intended to reach on residents, health care providers, and community leaders. This film also looks to bring attention to the importance of eye health in the community, such as east and central Harlem that has high rates of diabetes and other chronic conditions that affect eyesight. So without further ado, Vision Voice.
[Scene of people on the street—Introduction credits role]
[Written on screen]: Communities IMPACT Diabetes Center Presents in partnership with the Mount Sinai Diabetes Center: VISION VOICE.
Produced by Brett Ives, NP, CDE, MichaeI NedeIman, Charysse Redwood
Featuring: Evelyn Hernandez, Yolanda Jordan, Dioris Jordan
[Scene shifts to a deli/restaurant setting woman speaking Spanish]
[Scene shifts to a person’s home]
Yolanda Jordan:(In Spanish: Caballero, cogí cuatro. ¿Ok? Corre la cuenta. ¡Gracias!) I am glad you guys are here today to help celebrate my birthday and that is one of the ways I like to do, you know bring people together and keep everybody informed, especially with this new Vision Voice program because there are a lot of people in my family who have this problem. This is my wall of family here [points to a wall of pictures] and my sisters and my nieces and my cousins, here is my dad. My family has a history of diabetes, starting with my mom’s and my dad has it. My mom is in the middle her name was Georgina. We did not understand what it was and she was pretty much on her own, because we did not know you know how much care or what was involved in diabetes until it was too late. And you know she was, I can’t even say how much I loved her. Then I am going to start crying and I don’t want to do that, I am doing so well. And then you got my sister Georgina.She is a diabetic.Then you have my sister, Lucy, who passed away from diabetes, she was the first one in the whole family. [Camera shifts to the outside]