Ensuring a Successful Eye Exam for Individuals with Ocular Visual Impairments

Chapters:

1. Introduction
2. Finding Appropriate Eye Care
3. Before the Exam: Providing the Information and Preparing the Patient
4. An Adaptive Approach to the Eye Exam
5. Beyond Acuity: Other Issues in Eye Health
6. Addressing Potential Barriers

CHAPTER 1: Introduction

DR. KRAN: During optometry school, I had the opportunity to work in a subgroup of my rotation with folks with special needs. And I found it to be challenging and exciting, and what clearly was evident to be an unmet need. There are many individuals with need for glasses that, because of their potential inability to express their needs, or the need to use alternative ways of collecting information in order to understand what their needs are, they go unmet.

And many years later, when I was doing some consulting work at some developmental centers here in Massachusetts, it was obvious that there were many people on campus with either substantial changes in their vision that required glasses, or unprescribed glasses that were needed in order to increase their ability to be aware of the world around them. And it was really illuminating to the staff, once glasses were prescribed, to see the significant positive changes in behavior that ensued, in spite of their initial hesitancy to consider glasses for this population because they felt like they weren't going to be tolerated or worn effectively.

And with respect to that, it is challenging to try and determine in a patient where an atypical exam has to occur, to find out what would be the most, or best tolerated, prescription. But it can be done. And we often see the effects, positive effects, of that care.

CHAPTER 2: Finding Appropriate Eye Care

DR. KRAN: Now in general, individuals with intellectual disability or neurodevelopmental delays statistically have a higher percentage of the need for glasses than the general population. So routine care is something that should occur automatically. Every individual with intellectual disabilities needs to be on an actively managed eye care plan by their eye care provider. So the frequency the eye exam, then, is dependent upon either a sudden change in condition, or the frequency that the doctor recommends.

But going back, then. So the patient needs to have a sense of what's happening. There's a change. The caregiver needs to have a sense of that. And then the caregiver, if the patient themselves can initiate the eye exam, needs to initiate the eye exam. So of course, the first question is then, well, who do you call? Here in Massachusetts, we have a registry of doctors that have the ability to work with this population. And that could be accessed at a vision loss sight that's put out collaboratively with the developmental disability service here in Massachusetts, and the Mass Commission for the Blind. And so that could be accessed.

NARRATOR: We see a screen capture of the home page of the website Dr. Kran referenced. Focus on vision and visionloss.org.

Under the heading Eye Care, a dropdown menu option reads find an eye care provider. The list is searchable by town.

DR. KRAN: In other states, there maybe other venues, other ways. And another provinces, there might be other ways of accessing that registry of information.

Alternatively, certain state medical societies or certain optometric societies may also have lists of providers that self select as being able to work with this population. So that'd be the first place to start with resources for eye doctors.

CHAPTER 3: Before the Exam: Providing the Information and Preparing the Patient

DR. KRAN: The doctor needs to have as much information as possible about that patient, and as much as possible ahead of time. So the doctor's staff will need all the insurance information. If the guardian is not coming in for the exam, there needs to be some communication between the agency and the guardian about that eye exam so that everyone's on board with it. So there might be some paperwork, insurance paperwork, that needs to be pre-signed from the office by the guardian to insure that appropriate care process can be followed through to completion.

There's also a face or fact sheet that agencies often have about the individual that they're caring for. And in that information would be all the medications, all the other medical history diagnoses, allergies, if I didn't say already, medications. And the list of who the guardian is, and who the other emergency contacts are, as well as who the primary care physician is. So the doctor, the eye doctor, at the end of the examination can be sure that the appropriate people are getting copies of whatever report. So now the doctor has all the initial information that they need before doing a face to face history and background information about this patient. So the stage is set when they meet, then. The patient and the doctor meet, they're ready to hit the ground running with the eye exam.

NARRATOR: We see on the screen the first page of the checklist that the low vision clinic at Perkins provides online to patients and caregivers regarding information necessary prior to and at the time of the first appointment.

Most eye care providers would require similar information. The checklist includes an insurance referral, copies of the latest eye reports and medical records. Caregivers are asked to bring a medical insurance card, all eyeglasses and low vision devices used, favorite toys, examples of school work. Other professionals or caregivers who work with the patient are welcome to attend as well.

DR. KRAN: When the patient or caregiver then calls, they need to identify their situation and their needs. Hi, I'm Joe. I'm calling on behalf of Mary, who's a 42-year-old individual with Down syndrome who's had a sudden change in how she's moving through the world, and we're unsure if there's a changing need for glasses, or something else going on. And that alerts the staff then to know, OK, this is an individual with special needs.

And they may then ask further questions about how they are in novel environments, or what the needs are around having a successful eye exam. Does it need to be first thing in the morning? If there's need for extra time for an appointment, that, during this conversation between the doctor's staff and the person calling, that needs to be articulated in discussed. And then ultimately, the appropriate time during the day where it will work best for the patient and the office, that's when the appointment should be set up for us, so that you maximize the chances of success.

If the patient needs to be desensitized to the office ahead of time, then book the appointment enough in advance where the patient can come in and visit the office, get used to the setting, and then just leave and come back appropriately for their examine. And at least they'll be desensitized to that environment.

NARRATOR: As we watch this video clip, a young girl who was visually impaired and neurodevelopmentally disabled, is in the exam room of the Perkins low vision clinic. An intern in the clinic sits in the exam chair as the girl is encouraged to role play.

Using symbol cards that test acuity, she asks the intern to match the symbol that the girl presents. This role playing is a way to familiarize the young girl with the exam she will soon undergo.

CHAPTER 4: An Adaptive Approach to the Eye Exam

DR. KRAN: Many doctors can collect very basic information about many patients of varying levels of interaction with the doctor. There's certain objective information that can, and often is, obtained with varying levels of degree of thoroughness. But beyond that, coming up with an accurate prescription that's than achievable and wearable by the patient, looking at some subtle issues around eye teaming and focusing, looking at other important issues around eye care, and collecting actual acuity information, for example, is really difficult.

We've seen many patients with intellectual disabilities who come in wearing glasses, and they come in, say, with their — I'm thinking of this one case. She came in with her mother, and she was probably 26, 27 years old. And she was moderately nearsighted. And we ended up obtaining acuity on her using a modified technique. Using four symbols that are universally available, and showing her one symbol and giving her choice of two to match from.

So she was nonverbal, but she was able to point to the one that matched. And at the end, we had an acuity. And mom was in tears. She was like, I never knew what my daughter could see. Now I know. I have a number.

NARRATOR: In a video clip, we see an exam taking place much in the way Dr. Kran described.

A woman who is visually impaired and wears glasses is being asked to distinguish between a circle and a square that is being presented on a card by a clinician who stands at a fixed distance in front of her.

The woman is prompted to look at the card, and then point to either the circle or square that are both displayed on a card that another clinician, who is sitting beside the woman, brings within her reach.

DR. KRAN: Having this alternative ways of obtaining acuity is one very important thing that, perhaps, when people are calling the office, might want to ask about. Do you have — other than the standard acuity chart, do you have other ways of obtaining acuity? So there could be symbols. And there could be grading cards that are used. Also that's done at near. And you just go by where a patient fixates. Do they see the stripes on one side of the card, or the paddle, versus the blank paddle, or the blank side of the card. And then the doctor goes through a series of paddles, or cards, and obtains the actual acuity at near. ,/

It's not exactly the same as a letter acuity, and it's not the same as a distance acuity because it's at near, but at least it gives us some solid information about what their acuity is. And then, if glasses are indicated, if the acuity subsequently improves.

NARRATOR: We watch as teller acuity cards are being used to obtain some estimation of a young boy's visual acuity at near.

The boy, who is visually impaired, nonverbal, and multiply disabled, wears a patch over his left eye. The acuity cards, which each display a different grading, or pattern of vertical stripes calibrated at varying cycles per centimeter, are presented at a measured distance. The grading appears on only one end of the card.

The presenter, who is unaware of the location of the grading, attempts to determine if the boy is clearly directing his gaze towards one side over the other, a queue that the test subject is able to distinguish the pattern of stripes from the background of the card.

DR. KRAN: So in some respects, it can take a community of people to make sure that the eye exam is successful. And another resource that could be utilized for school age children, many of whom will have the services of a teacher, the visually impaired or an orientation a mobility specialist. And they can help work with the, in this case, the school age child to — if they don't know their letters — to learn, and use, and work with the symbols, and work out a paradigm upon which acuity than could be successfully obtained in the eye doctor's office. So many vision teachers and orientation mobility specialists are trained in order to provide that level of training to their students. And that'll make for a much easier transition to the eye exam itself.

Further, they're familiar with various aspects of the eye exam. And if they know that covering one eye is going to be difficult, they can work on various desensitization approaches, or make the doctor aware of what might work.

NARRATOR: We see an example of a simple adaptation to achieve a monocular acuity measurement.

In a video clip, a young woman, who is visually impaired, nonverbal, and neurodevelopmental disabled, has the left lens of her glasses covered with a sticky note. In her left hand, she holds a three dimensional, black, wooden outline of a square.

And in her right hand, a black wooden circle. When presented with LEA symbol cards that are displayed perhaps for or five feet in front of her, she is asked to indicate the matching symbol she holds.

DR. KRAN: Functionally, people, eye doctors, look at acuity in different ways without a measure. Can they fixate? How long can they fixate? Can they follow and can they track? And we're all trained to do that. But what's also very important with this population is to use targets that are of interest to them. A target that might be the thing that we learned in medical school or optometry school may not be a target that's of sufficient interest for them. And so they won't look, and fixate, and follow. And so you have to think about what you're using to capture them and how to then maintain their interest in it.

And sometimes, if they have certain eye movement problems, or they have other issues, moving a target super fast, or what we would normally do in our rush to get through an exam, is also not appropriate.

NARRATOR: In a video clip, we observe a young girl who is visually impaired and multiply disabled undergoing a LEA symbol matching test to measure her visual acuity.

Taped to a board that rests on her lap is a rectangular white card with four two dimensional shapes outlined in black. Circle, square, a house, and an apple. A clinician presents a card that displays one of the four shapes.

The girl's caregiver knows that she enjoys being prompted, so the caregiver counts to three, and the girl then points to the matching symbol.

DR. KRAN: So you have to understand the patient across from you and meet them where they are. You have to find the appropriate targets, move at the appropriate speed, and if breaks are needed, to give the brakes.

CHAPTER 5: Beyond Acuity: Other Issues in Eye Health

DR. KRAN: There is the need for increased public awareness. And probably, on the part of primary care doctors, a need for additional education. And then provide that education forward to the families of individuals with intellectual disabilities. That, in fact, there is a higher risk of the need for glasses or an eye turn, or both. And those need to be evaluated periodically, If not regularly.

In terms of seeing, per se, we often think of vision as solely being acuity. Central vision. But really, that's a very tiny part of the back of the eye. An analogy I like to use is that the area responsible for 20/20 vision is sort of like second base in Fenway Park. There's a lot of real estate out there that's not involved in what something is, but is more involved in where something is, and sense of movement, and all sorts of other things that are happening. And so that's also something that needs to be explored during an eye exam. How full is the field?

NARRATOR: In this video clip, we see a young boy who is visually impaired and multiply disabled sitting on his caregivers lap in an exam chair at the Perkins low vision clinic.

Dr. Kran stands behind them and holds a bright white ball on the end of a thin, black rod. The boy's gaze is fixed on a bag of cookies that an intern holds in front of him, perhaps four feet away. Dr. Kran slowly presents the ball into the periphery. And as the boy becomes aware of it, he turns his head towards the ball. This allows for a measurement of the boy's visual field.

DR. KRAN: You think about glaucoma in an adult population. And the chances of getting it double every 10 years from the time you're 40 on. And it's often a silent cause of blindness, and among the top leading causes of blindness in a typical adult population. And so the need for even just regular eye pressure checks and an assessment of side vision, even in a modified way, not the same way that a typical patient would have their side vision assessed, can be accomplished. And field changes can be picked up upon.

We unfortunately have had several cases, one just a few weeks ago. An adult with intellectual disabilities came in for an exam with his caregiver. And well, he had a red eye. His left eye was red back in June, but since then there has been no problem. It's been over year since an exam. We just want to make sure everything's OK. We dilated the patient, and the patient had a retinal detachment in the left eye. Totally silent. In other words, they noticed no changes in his behavior. They didn't notice him swatting at things that people might do at times if there's floaters and flashes as a result of the back of the neural retinal tissue coming loose, and a little bit of bleeding going on. They didn't notice any of it. The retina doesn't have any pain receptors, so it can't say ouch. So instead, when there's some pulling and tugging as it's coming loose, you get these little bursts of light.

So it was obviously pretty dramatic. We had to tell the caregiver that, all right, this is what I think is going on. And don't pass go. Don't collect $200. You need to get immediately to a retinal person. And this needs to be evaluated.

We also the case a few years ago, again, with side vision issues. Where the adult lived with his mother. And he would jump down the stairs, and run out into the driveway, and get into the van that took him to his day program. And then one day, that just stopped. And he wouldn't leave the house without a lot of persuasion. And he would hold on to the banister with both hands and go down very, very carefully. And his mother took him for various eye exams. And we ultimately saw him a few months later. And again, he had a retinal detachment in one eye, and the other eye looked like there was one about to happen as well. And ultimately, he received care and did well. So side vision is very important to deal with. So changes in behavior can be a sign that there's something going on.

Cataracts are also another issue that we all face, and is an issue that individuals with intellectual disabilities have as well. And so we need to be careful as we assess them. And we pay attention to are they more bothered by glare? As it gets dimmer in a poorly illuminated room, are they more likely to bump into things than maybe they did six or nine months, or a year ago. So paying attention to things like that, and then thinking about how to coordinate. If and when the surgery is necessary, and who to use, is a very critical thing.

CHAPTER 6: Addressing Potential Barriers

DR. KRAN: So a barrier to care for this population, aside from some of the things we've already talked about it in the inverse, of how to assure a successful exam. So if you don't make those happen, then those are going to become barriers to care. Other issues are the training of the doctors in working with this population. And there are programs in place, and programs developing, to try and take care of that issue as well.

A final piece, of course, is are doctors going to be reimbursed for the potential extra time and care that it takes to work with this population. And that's certainly a more sensitive and important issue. And different doctors will manage this differently in their offices. So some doctors will, if they want to, if they provide additional time to do it — like when I was in my primary care practice, I would book an appointment just before lunch. And if it went over, it went over, and that's what we needed to see that patient. That's what we did. Other doctors, in slower times of the day during their office hours, might then put aside some slots for eye care for individuals with intellectual disabilities, or other difficult exams.

Other doctors will not change appointment time, but might do multiple visits. That's another way to go around it. So they would get done what they could get done in their standard time, and have the patient return. Of course, the patient may or may not be comfortable with those multiple return visits. So to some extent, it's a matter of the patient and the doctor finding the appropriate relationship and timing of the examination portion that works for that particular patient. So I guess the take home message from that question, also, is don't assume that because you've had one negative experience with one doctor, that all eye exams are going to be the same way.

Similarly, if you are aware that that Doctor generally enjoys a good reputation of working with patients with intellectual disability, or neurodevelopmental delays, then perhaps speaking with that patient or that doctor, or the office at another time and saying, hey. Here's what my experience was. Here's what my son's, daughter's, or the person in my charge from the group home — here's what my experience was. Is this typical? Or are there things we can do to make this a more positive experience next time. And depending upon your feedback, then you either give that Doctor another try, or you seek care elsewhere the next time that an eye exam is called for.

NARRATOR: Additional information about eye examinations can be found in the following Perkins webcasts. Visual acuity testing part one, a history a preferential looking and early testing, and visual acuity testing part II, acuity cards and testing procedures. Both of these webcasts can be found on the Perkins e-learning website, perkinselearning.org.