Emotional support of persons with diabetic retinopathy specifically tailored to point-of-care providers treating patients with diabetes
Emotional support can be defined as the expression of empathy and understanding towards an individual living with a problem. In the case of a person living with diabetes, emotional support may allow him or her to communicate fears and anxieties, receive positive feedback from friends and family, and help sustain self-care abilities. Emotional support and encouragement from health care providers are essential for patient’s motivation and management of diabetes which requires lifelong self-care and discipline. Patients self-manage diabetes, a chronic condition, in the absence of any day to day positive feedback. Research has consistently documented the beneficial effects of social support and supportive relationships on physical and mental well-being, particularly for patients living with diabetes. This section is dedicated to ways you can empower your patients by addressing their fears and discussing treatments options in a respectful and meaningful manner.
A 3D View – Distress, Depression, and Diabetes
Self-care is the cornerstone of diabetes management. Living with diabetes means managing and coping with the condition every hour of every day. This constant effort can be exhausting and stressful for patients and often leaves them feeling isolated and alone. It is thus not surprising that people living with diabetes have a higher risk of developing emotional problems than the general population. Despite advances in diabetes care a significant proportion of patients with diabetes still experience diabetes-related distress (44.6%) or clinical depression (13.8%) (nicolucci a, 2013 Diabetes Med 767-777). Moreover, it has been well documented that the psychological well-being of patients plays a pivotal role in day to day self-management of diabetes. Distress and depression in patients with diabetes can lead to worsening of metabolic control, higher rate of complications, increased health care costs, worsened functional disability and early mortality. Put simply, diabetes-related distress and depression can limit one’s functional ability and coping mechanisms leading to reduced diabetes self-care.
The diagnosis of diabetes related retinopathy can be the source of significant additional emotional stress for patients as noted below:
Fear of going blind
The new diagnosis of diabetes related retinopathy can be distressing for patients as it brings the fear of losing vision and going blind. This anxiety and concern are heightened by the fact that for those living with diabetes are 25 times more likely to experience visual impairment. Patients with a prior history of diabetes with no retinopathy may view this new diagnosis as a setback in their efforts to manage diabetes. Patient’s distress may be heightened further by the plethora of information about diabetes related retinopathy and complications on the internet that may not be relevant to their condition.
Change in lifestyle
For most of us the world is what we see through our eyes. When confronted with the possibility of vision loss, patients worry what that would mean for their quality of life. Patients express fear of losing their means of livelihood and financial earnings. Cost of care, rising insurance premiums and higher copayments may be additional points of stress.
Loss of independence
The prospect of vision loss for patients often means becoming dependent on friends and family for daily tasks that have thus far been routine. Loss of vision may mean having to give up driving privileges, reading, playing sports etc.
As physicians, it is our job acknowledge this concern and reduce risk factors to ensure the best possible visual outcome for our patients. Fortunately, this has become easier with improvements in both systemic and intraocular medications. Coupled with advancements in insulin delivery and glucose monitoring we are now able to arrest and often reverse the stages of diabetes-related retinopathy that if untreated can lead to visual loss. When discussing these treatment modalities it is important to deliver this care in a supportive and understanding manner; often it is not what is said but how it is said that will be remembered. In other sections of this report, we hope to ease some of the concerns and fears related to diabetes-related retinopathy and its treatments. We believe that the goal from an ophthalmologic point of view (aside from preventing visual loss) should be improving self-management skills and reducing diabetes-related distress help people live with diabetes.
Sticks and Stones – The Language of Diabetes
Sticks and stones will break my bones but …. sadly words do hurt and the language we chose often reflects the unspoken opinion that we may be feeling. When talking about diabetes it is important to use language that does not judge but rather informs. Try to avoid language that implies a moral judgment about behaviors and blame. Try to respect and accept that patients have the right to make choices and use language that reflects the understanding that diabetes may not always take priority in one’s life, and that patients have accepted responsibility for their condition. Diabetes is frustrating, challenging and distressing for many people. When we focus on what is perceived as a patients ‘non-adherent’ behavior we can dismiss the efforts that they are making. Remember that wellness and health involve more than just gaining ‘control’ or achieving a number on a lab result. We should enable and educate our patients using appropriate and encouraging language.
The Most Powerful Drug Used by Mankind
It is arguable that the role of a physician is moving in the direction where the patient is at the center of care and physicians are peripheral health advisors. Physicians empower their patients to use the available resources, wanting what is best and practicing under the assumption of “first, do no harm”. Physicians recommend tests or treatments where the potential benefits outweigh the harm. What is often unrecognized and unintentional is that the way the recommendations are delivered can be causing harm. Language is an important part of our identity and we create meaning from the messages that we hear.
The English writer, Rudyard Kipling, once said: “words are, of course, the most powerful drug used by mankind”. Words can shape how a person thinks and feels about themselves as well as their medical conditions. As physicians, we use words to influence a patient to do or feel things that are not normal for them — just as medications would do. Language can empower people when used in a positive way. Words can link people together, spread knowledge, and improve self-image. However, it is important to realize that language can also be used to disempower people by degrading or harming their self-image. Words can completely wipe out a part of someone’s identity and can leave a negative impression causing their emotions to deflate. Language cannot be separated from thought or experience.
Empowering language should be used to educate and motivate people with diabetes. Careful use of language applies equally to the conduct of health services, health professionals, family, friends, and colleagues of people with diabetes, and the media. When people use language to shame and judge others, it can contribute to diabetes distress and ultimately slow progress and hinder diabetes outcomes. Furthermore, people with diabetes may do themselves a disservice if they also use negative language. There are effective ways of communicating about diabetes. When discussing a medical condition such as diabetes we, as physicians, should be using language that encourages positive interactions and positive outcomes.
To expand, the word “diabetic” is often used as an adjective or as a noun. When used as an adjective, diabetic foot, diabetic eye, and diabetic person, the word places focus on the physiology or pathophysiology. It is better to put the person first. Avoid using a disease to describe a person and to avoid describing people as a disease. Suggested replacement language would include foot ulcer, infection on the foot, diabetes-related retinopathy, and a person with diabetes. When the diabetic is used as a noun, “Are you diabetic?”, this labels someone as a disease. There is much more to a person than diabetes. “Do you have diabetes?”, a person living with diabetes, a person with diabetes, a person who has diabetes would be appropriate replacement language. When in doubt, call someone with diabetes by their name and remember person-first language puts the person first. There is much more to a person than his or her diabetes – mindful language is a simple shift that can be powerful in reducing stigma and negativity.
As health care professionals we should be working toward person-centered care that is based on respectful, inclusive, and empowering interactions. We have an opportunity to respect the language used when counseling our patients and should be selecting strength-based, collaborative, and person-centered messages that encourage people to learn about and take action to manage complex diseases.
Management approach to diabetes related retinopathy
Diabetes-related visual loss is a fear that all persons with diabetes will experience at one time or another. When faced with the thought of blindness, individuals often focus on what they stand to lose along with their vision. Patients often express concern over the loss of employment, their independence and privacy, along with the loss of friends and family. These anxieties are normal and as a physician, it’s important for us to acknowledge our patients’ fears, as they are to be expected. It is also our responsibility to help our patients move beyond those fears and help them reclaim a positive outlook about their vision and diabetes management. Losing your vision does not mean you’ve lost your intelligence, knowledge, or skills, but you may need to learn some new ways of doing things to remain independent. With proper training and practice, people with diabetes and visual impairment can manage their diabetes and other daily activities. Your goals to live confidently, independently, and productively can be achieved.
Sadly, it is the concern and fear of going blind that will often lead to patients missing appointments and delaying care which can lead to worsening of their retinopathy and vision. Currently, it is recommended that adult patients with Type 1 diabetes undergo an eye exam 5 years after diagnosis and that adults with Type 2 diabetes have an exam at the time of their diagnosis. Subsequent exams will occur every 1-2 years if no signs of diabetes-related retinopathy are seen. More frequent examinations will be required if there is evidence of diabetes-related retinopathy (Solomon et al Diabetes Care 2017 Mar; 40(3): 412-418
). Unfortunately, in the United States, less than two-thirds of patients are receiving appropriate screening and 90% of diabetes-related visual loss can be avoided with appropriate treatment and follow up. By educating our patients on the importance of eye screenings and addressing their fears we have the ability to prevent visual loss from diabetes.
Eye exam, timing, and experience
There are several parts to an eye exam that is performed by an ophthalmologist (medical doctor) or optometrist. Health care professionals recommend that all people have periodic and thorough eye exams as part of routine primary care, this is especially true for patients with diabetes as they can be asymptotic in the early stages of retinopathy. The typical eye examination will begin with an initial screening room where technician may take a complete medical history including a complete list of medications and allergies. Vision is then checked both at near and distance and with and without eyeglasses. After a careful assessment of pupillary function, a series of eye drops are placed in each eye to dilate the iris and check the intraocular pressure. Dilation will typically take about 15-20 minutes. Once the eye is dilated, the doctor will examine the eye using a microscope called a slit lamp. Further examination of retina may be done with a light source worn on the head called an indirect ophthalmoscope. Both of which allow a view of the ocular structures including the retina. The light from each instrument may appear very intense but will not injure the eye. The doctor may decide to take various photographs of the back portion of the eye. This may or may not include an injection of a dye to better visualize the retinal vessels and ocular circulation. Images of the retina are often displayed on a monitor to help explain the ocular findings. This is meant as a tool to help with the understanding of the diagnosis and not to criticize or frighten the patient. If diabetes-related retinopathy has been detected and requires treatment it may come in the form of an intravitreal injection, laser treatment, or intraocular surgery. The importance of maintaining glycemic control in target range coupled with controlling blood pressure, lipid levels, and avoiding tobacco is also stressed.
Cross my heart, hope to die…(Well You Know the Rest) – The Reversal of Retinopathy
As you have read in other chapters the past decade has seen a dramatic shift in the management of diabetes-related retinopathy. With the appropriate care, we are now able to stabilize retinopathy and ongoing treatments will often lead to improvement in vision (Ref Wells et al. Ophthalmology 2016;123(6):1351-9). The wonderful aspect about treating changes that affect vision is that the eye is an organ that is easily accessed. While the thought of placing medications into the eye is at first frightening the reality is that by treating the eye locally we minimize complications that may occur the medication is given systemically. As a primary care provider, you have the ability to help set the expectations for our patients. This should be hope rather than fear and punishment. All too often we tell our patients if you don’t do this you will have to do that. “If you don’t control your blood sugar you will need to go on insulin. You don’t want a shot do you?” We have created a relationship that has our patients believing that they have failed and the necessary treatment can be seen as a form of punishment. We know that the progression of diabetes is towards the failure of beta cells to produce enough insulin. This happens early for patients with Type 1 diabetes and late for Type 2. We should express to our patients that it is the progression of diabetes, not their failure that leads to the need to take medications to remain healthy. By presenting a positive outlook on how we are able to treat the damage that diabetes causes, and preparing your patients for having an eye exam and possible treatment, we have the ability to dramatically reduce the number of patients that lose their site from diabetes-related retinopathy.
What to Expect From an Intravitreal Injection
Intravitreal injections provide an effective method for the administration of medications in the treatment of many ocular diseases. In fact, the number of intravitreal injections has increased to a point that they are a common ocular treatment. By reducing anxiety and increasing knowledge about a procedure we can help our patients experience less emotional and physical discomfort with intravitreal injections. Chen et al. (2012) reported that diversion methods such as listening to classical music before and during intravitreal injections significantly decreased anxiety in patients. While there are multiple ways to give an injection the basic principles are as follows:
The patient is placed in a comfortable supine position with the head supported.
Numbing drops or injection will be placed on the eye.
Topical betadine drops will be instilled on the eye.
A small device will help keep he eyelids open and away from the site of injection.
The patient is then asked to look in a given direction, often away from the physician.
Medicine will then be injected into the eye with a small needle. There may be a pressure sensation but typically not painful.
Afterward, the eye may be rinsed with sterile eye wash.
The procedure is done in the providers’ office and takes less than 15 minutes. This may need to be repeated as often as every month until diabetes-related retinopathy stabilizes.
Emotional and Informational support
Patients living with diabetes should be well educated about diabetes, its management, and its consequences. Knowledge about disease pathophysiology, dietary and lifestyle modifications, treatment regimens and warning signs of possible complications are prudent for patients and their close family and friends. Patients should also have easy access to information about new treatment modalities and technologies. The internet is a useful resource however patients should be educated about reliable websites and information sources. Patients should be cautioned about unfiltered and unsubstantiated perspectives about a disease and its management which may provide disinformation and be the cause of additional anxiety and stress. A certified diabetes educator can help you set priorities and coach you on seven key areas of diabetes management.
Below are trusted resources for additional information.
AAO Preferred Practice Pattern for DR:
AOA Clinical Practice Guideline:
American Diabetes Association: Figures and Tables
AADE7 Self-Care Behaviors for Managing Diabetes Effectively
AADE’s DANA: One-Stop Healthcare Technology Resource for Diabetes Educator
Visual Impairment and Low Vision support
Despite our best efforts patients may still lose vision and go blind. There is no such thing as being “prepared” for this kind of news. It is important to remember that regardless of the stage of diabetic retinopathy individuals with diabetes should continue to control their risk factors to help preserve the remaining vision as well as minimizing other diabetes-related complications. Fortunately, professional support is available and far more accessible than most people realize. There are adaptive techniques and remarkable, ever-advancing technology and products to help patients with visual loss continue to maintain visual independence.
During the early stage of diabetes-related retinopathy, no visual aid may be necessary as there is often no visible change or loss in vision. However, as retinopathy progresses, or should macular edema occur, treatment and vision assistive tools may be necessary for utilizing remaining vision. Once visual loss occurs finding devices that provide additional lighting, viewing choices (such as a vertical and horizontal screen), focus adjustment/magnification power, and color contrast options are all great features for visual support. Some visual aids, like an electronic magnifier, can be carried in a pocket or a purse and offer powerful magnification, lighting, and image capture, which is helpful when viewing a menu for individuals with central loss of vision. With a feature like an image capture, the information being viewed can be captured on the screen and displayed like a photograph, allowing the user to move the device displaying the image, to where peripheral sight can gather the magnified information. Larger visual aids such as a desktop magnifier provide more hands-free visual assistance, geared at home and office usage. When deciding upon which visual aid is right, determine what your primary use of the device will be, explore the features available and the ease of use of each aid, seek product feedback, and discuss with your eye-care specialist the available products for visual aids.
LOW VISION AIDS
Patients with diabetes have specific visual needs related to their diabetes self-care. These include being able to test blood sugar level and administer appropriate insulin dose, read food labels and medicine bottles, perform foot care and attention to any wounds. The ability to safely drive and maintain economic self-reliance would have a positive impact on their emotional state. Visual aids may allow patients with visual impairment to maximize the use of their vision and live independently while managing their diabetes.
Optimal Lighting: It’s hard to overstate the importance of good lighting — but too much lighting can also impede vision. The lighting in your home should be evaluated with attention given to directional lighting for near tasks and motion-activated lights to help prevent accidents in dark environments. Filtered lenses can reduce the glare from bright light and improve the ability to discern objects from their surroundings. Because many patients with diabetes experience color vision loss along the yellow-blue axis, they are able to benefit from the contrast enhancement of amber filters with less awareness of the yellow-amber color than those with normal color vision.
Magnification: Magnifiers, strong bifocals, closed-circuit television systems, large print, and computer screen magnification programs are some examples of tools that can provide effective magnification for low vision. Small pocket magnifiers can be used to read labels or menus. Standing magnifiers can be used to read or view items at home or work. Closed Circuit TVs (CCTVs) are cameras that project a magnified image onto a computer or television screen and can help with reading the newspaper, mail, or medicine labels.
Computer adaptations: There are numerous ways to modify a computer to make it usable by a person with visual impairment. Software programs can change the text size, screen background color, or text color. Screen magnifiers work like a magnifying glass for the computer screen. Screen readers speak everything on the screen, including text, graphics, control buttons, and menus in a computerized voice. Some programs are available in basic, free versions and other programs have free trial periods so that users can give the software a try before making a purchase. Some e-readers also have voiceover, and can read the book out loud — no audiobook subscription required.
Writing aids: Use paper with bold lines to help you write in a straight line. If bold lines aren’t enough, plastic guides can be purchased to help you sign documents, write letters, fill out checks, and write addresses on envelopes more easily. Felt-tipped markers create lines that are bolder and easier to see than lines created by ballpoint pens. Black print on yellow or ivory paper reduces glare and improves visibility. Some banks will provide large-print checks, check guides to help fill in the correct spaces, and in addition billing statements can be provided in large print.
Home safety: Falls can be avoided in the home by making some relatively small changes. Place strips of reflective tape or paint on stairs to make each step more visible. Remove throw rugs or use non-skid rubber-backed rugs. Use a rubber mat in the bathtub or shower. Have grab bars professionally installed in the bathroom; towel racks are not strong enough to support you if you slip.
Smart Devices: Voice-activated personal assistants can summon up information on command, lessening the need to read from a screen. And smart home devices can perform hundreds of tasks on your behalf: play music, check the weather, place orders online, make a grocery list, and sync with other smart home devices like thermostats and outlets. Wearables use head-mounted magnification technology to help people see distances, faces, and television.