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Volume 12, Number 2

August 2003

 

 


Preview Reception Highlights Celebration of 40 Years of Glaucoma Fellowship at Wills

 

Edna and Stanley Tuttleman hosted a reception at their home in Lower Merion on June 5th to thank patrons, partners, and sponsors for their support of the Foundation’s October 3–5 Scientific Symposium and Celebration of 40 Years of Glaucoma Fellowship at Wills Eye Hospital. The event also served to introduce the Glaucoma Service, the Glaucoma Service Foundation, and the International Society of Spaeth Fellows to other community leaders in the Delaware Valley.

 

Stan Tuttleman, long-time patient and friend of Dr. Spaeth, is also a member of the Foundation’s Board of Directors and of the Steering Committee planning the October 4th Celebration. “The extremely important work being done by this Foundation and the physicians on the Glaucoma Service at Wills is having a significant impact around the world. But I am not sure enough people locally really understand what they are accomplishing through their various research and education programs. My wife Edna and I hosted this Preview Reception because it seemed like a good way to highlight those accomplishments. We also hoped it would be an opportunity to tell people about the October 4th Celebration and generate some excitement about that event.”

 

As the lovely summer evening began, over 50 guests chatted, enjoying hor d’oeuvres on the stone patio overlooking the exquisite boxwood gardens.

Mr. Tuttleman began the program, welcoming the guests, and introducing Dr. William Tasman, Ophthalmologist-in-Chief at Wills Eye Hospital. Dr. Tasman thanked Mr. and Mrs. Tuttleman for hosting the reception, the distinguished guests for coming, and Dr. George Spaeth for his years of dedicated service in building what is perhaps the finest facility in the world for the diagnosis and management of glaucoma.

 

Mr. Tuttleman then introduced Dr. Spaeth. After thanking Mr. and Mrs. Tuttleman and the Celebration Steering Committee — along with Mr. Tuttleman, Committee Chair Bonnie Long, Ann Spaeth, and Foundation Managing Director Nancy Petrongolo — he spoke about the importance of doctors’ being sensitive to each unique individual seeking their help.

 

This principle, he explained, has been the centerpiece of the Glaucoma Service Fellowship program for the past 40 years. It is also the theme of the Scientific Symposium to take place at the time of the Celebration, “Enhancing the Quality of Life of Patients with Glaucoma: A World of Individuals,” as well as the founding principle of the group of 194 physicians trained on the Glaucoma Service, the International Society of Spaeth Fellows.

 

“The goal of the Celebration,” he continued, “is not only to bring our Fellows and leading glaucoma experts together for a landmark conference and to strengthen the International Society of Spaeth Fellows. It is also intended to publicize the accomplishments of the Glaucoma Service of Wills Eye Hospital, locally, nationally, and internationally, with the hope of gaining support for our important research and educational programs.”

 

“We hope,” he concluded, “that all will leave the Celebration in some way transfigured, more aware of the tragedy of unnecessary blindness, more aware of what we can do to decrease the misery caused by glaucoma and other illness, and more committed to caring knowledgeably for every person, every unique person everywhere.” (Dr. Spaeth’s comments are presented in detail, click here to read “Hallmark of the Glaucoma Service.”)

 

Foundation Chair Dr. Andrew Medcalf, after sharing his personal story of living with glaucoma, reiterated the importance of the Foundation’s research and education programs and the need for funds to ensure that they continue and expand. Adding his personal testimony about the essential role the Glaucoma Service has played and continues to play in his own life, he concluded, “A commitment to the Glaucoma Service Foundation is a commitment to glaucoma patients everywhere.”

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Foundation Board member and Preview Reception host Mr. Stan Tuttleman (left), Glaucoma Service Director and Foundation President Dr. George Spaeth (center), and Foundation Chair Dr. Andrew Medcalf sport their “Celebration ties” at the Preview Reception. The ties (and scarves for the ladies) were donated in part by Philadelphia University and Lord West Accessories specifically for the occasion.

vol12no2_7.jpg - 9638 Bytes At the Celebration Preview Reception at the home of Edna and Stan Tuttleman (left to right): Glaucoma Service Foundation Board member and President of the Board of Directors of City Trusts Mr. Louis Esposito, Mrs. Alice Lea Tasman, Wills Ophthalmologist-in-Chief Dr. William Tasman, and Mrs. Anne Esposito.
vol12no2_8.jpg - 15104 Bytes In addition to the Tasmans, Tuttlemans, and Espositos, Preview Reception guests including Dr. and Mrs. James Gallagher, Mr. and Mrs. Mark Baiada, Mr. and Mrs. John M. Kellogg, Jr., Mr. and Mrs. James Keating, Dr. David Adamany, and Executive Director and CEO of Wills Eye Hospital Mr. James Mulvihill listen as Dr. Spaeth speaks about the Hospital, the Glaucoma Service Foundation, and the upcoming Celebration.
vol12no2_9.jpg - 7334 Bytes Celebration Honorary Committee Co-Chair Mrs. Dorrance (Dodo) Hamilton (left) and Philadelphia University President Dr. James Gallagher listen as Foundation Board Chair Dr. Andrew Medcalf shares his vision of the future of the Foundation and Wills Eye Hospital.

Photos by Roger Barone

 

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Celebration Volunteer: Portrait of a Remarkable Lady

 

By Ken Parker, PhD

 

 

vol12no2_3.jpg - 8094 BytesElizabeth Kennedy is one of several volunteers who are helping to do all those pesky little, but absolutely essential tasks needed to ensure the success of the October 4th Celebration of 40 Years of Glaucoma Fellowship. I spoke with her one day when she and three other volunteers, Gloria Fischer, Ann Spaeth, and Marie Torchon Sixto, were busy putting labels on “Save the Date” postcards being mailed to 1000 former fellows and friends of the Glaucoma Service.

 

She explained that volunteering is not something she usually does. For her, she says, it meant “stepping outside my comfort zone.” Understanding why she took such a step in this case involves understanding a bit about this remarkable 74-year-old woman and her experiences with the Glaucoma Service of Wills Eye Hospital. In a nutshell she says she’s

 

volunteering because it is a “great cause” and “because I have been helped by Wills Eye Hospital and the Glaucoma Service.” And, indeed, not just herself. In the early ‘70’s her father was a glaucoma patient at the Hospital, treated by Dr. Spaeth. She herself was diagnosed with glaucoma in 1985. She came to see Dr. Wilson for emergency treatment in 1993 to fix a failed trabeculectomy. “He saved my sight,” she said.

 

Though the vision in her left eye is gone and she has only one-half center vision in the right, she continues to follow her credo to “not let what you can’t do get in the way of what you can do.” This means, among other things, a remarkably active involvement with computers. It is an involvement that goes back to 1969 when she programmed IBM’s first commercial computer at John Wanamaker. Then, she went on to become the administrator for SmithKline Beecham’s electronic mail system. All the while she was actively involved in home decorating and landscaping.

 

Following a 1996 trip to China she matriculated at Chestnut Hill College, where she majored in “Culture, Science, and Technology.” Now she is on the Dean’s List at Community College, where she is studying website design and is in charge of the College’s website. It seems only natural that she regularly reads the “Chat Highlights” on the Glaucoma Service website.

 

When she, a regular contributor to the Glaucoma Service Foundation’s Annual Fund, heard about the celebration of training on the Glaucoma Service and the need for volunteers, something about it seems to have captured her imagination. Being who she is, she knew she had to do it. We can all count ourselves fortunate for that. Indeed, her remarkable spirit is, I believe, what the Celebration is all about.

 
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Celebration volunteers (left to right) Marie Torchon Sixto, Gloria Fischer, Ann Spaeth, and Elizabeth Kennedy help with the mailing of 1000 “Save the Date” postcards for the October event.

 

Photos by Ken Parker

 

 

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Dr. Wilson Chats About Doctor-Patient Communication

 

 

Wednesday evening, July 16th, Dr. Richard Wilson “chatted” with visitors to the Glaucoma Service and Foundation’s website about communication between doctors, patients, and their families. Here are some excerpts.

 

Moderator:  I guess most new glaucoma patients are frightened. Do you have a way to gauge a patient’s fear and if help is needed to overcome it?

Dr. Rick Wilson:  I am not sure I have a way, other than trying to be sensitive to the patient’s emotional state. Since glaucoma for most people is a lifetime disease, the doctor has to be honest or he or she will be found out. Finding the balance between honesty and sensitivity is the key.

P:  I understand patients’ fear. I fainted a few times during laser surgery and I shake during appointments. The patient gets scared if the doctor is candid. Then the doctor reassures the patient. It seems like an endless cycle for the patient. If the news can always turn bad, how can the endless cycle of fear and relief from it be broken?

Dr. Rick Wilson:  For most glaucoma patients, the doctor can be relatively reassuring. Most of the damage caused by glaucoma, occurs before the patient sees the doctor. We have good medicines and good surgery. It still is scary for the patient, but not anything like it was when I first started doing this in 1978.

P:  Visits with my glaucoma specialist are rushed, with little time for more than a few quick questions. With his waiting room full, and an additional workload as a professor and a researcher, that’s not surprising. I understand his time is valuable, but I leave frustrated. Do you have any tips on how we can both gain maximum benefit from the visit? By the way, the opportunity to ask questions and have them answered in this chat room has enabled me to keep my sanity.

Dr. Rick Wilson:  Thanks. One way would be to come to the office with a list of questions each time. If you hand the list over and let him run through the questions, you might get the most information with the least demand upon his time. You could also suggest that he dictate a letter to you later, when he is less rushed.

P:  I think a lot of patients are intimidated by doctors and are afraid that getting a second opinion might insult them. My primary care doctor is very supportive, but I haven’t discussed getting a second opinion with my eye doctor. Do you have any suggestions about that?

Dr. Rick Wilson:  I think the softest approach is to say, “I have full confidence in you, doctor, but my wife (husband, daughter, etc., someone the doctor does not run into) is worried about me and would like me to get a second opinion. To keep her happy, can you suggest another glaucoma specialist I can see for a second opinion?”

P:  That’s a good way of putting it, Dr. Wilson. You can tell you had a residency in psychiatry.

Dr. Rick Wilson:  Thanks. It has come in handy. If your doctor is secure, he or she should not mind your seeking a second opinion. It is always best, from my point of view, to have the patient totally assured that the course chosen is the most rational one. If the doctor gets too upset, it might be better to move on.

P:  Do you think well-informed patients who require treatment that may be uncomfortable or difficult are more or less compliant than poorly informed patients?

Dr. Rick Wilson:  I try to have all my patients well aware of their circumstances — the risks of the treatment plan, as well as the benefits and alternatives. It is not only better for them, but also for me if they know the challenges we both are facing and the possibilities of how things will play out. If an untoward event happens, then the patient is much more understanding.

P:  There are psychologists who are good at devising coping strategies and activating support from family, etc. They think of things we patients wouldn’t think of, things that make a big difference in coping with the uncertainty.

Dr. Rick Wilson:  I agree, and occasionally I suggest people avail themselves of that help if our support group and the chat room aren’t enough.

P:  I want to know more, but my doctor just keeps telling me it’s all right. (I have not noticed any severe vision change). I think he is too reassuring. He does not give me details — simply that he can see changes. What suggestions do you have so I can get more details?

Dr. Rick Wilson:  Tell him you participate in this chat group, and you would like to see your visual fields. Read the information we have on visual fields on the website. That information will give you a tool to see for yourself how much damage you have and follow it along with the doctor.

P:  The baby boomers, who are reaching their 60’s, are more computer- literate than their parents. Do you think glaucoma specialists will be using e-mail more often with the baby-boomer generation?

Dr. Rick Wilson:  Yes. The problems at the moment are that e-mail is usually written at the end of a 10- to 14-hour day, is not reimbursed, and means more liability in both HIPAA (Health Insurance Portability and Accountability Act), medical aspects, keeping records, etc.

P:  Are there many women glaucoma specialists? Some women seem to prefer women doctors and seem to relate better to them.

Dr. Rick Wilson:  About 1 in 8 is a woman, as I remember, but that ratio may be changing. All three of our fellows (fellowettes?) this year are female.

P:  What kind of training do glaucoma specialists receive in learning to relate to the patient, not just to the glaucoma?

Dr. Rick Wilson:  Unfortunately, that depends entirely upon who is doing the training and how they relate to patients. I think one of the strongest aspects of the Wills glaucoma fellowships is that our fellows get to see eight specialists and how they interact with their patients.

P:  In the last three months since my diagnosis, this chat room has been a source of security. I have learned to open up with my doctor and to talk to him like he is a person. He now talks to me the same way. I was on the verge of a breakdown when I found this chat room. I have to say thanks to everyone and to you.

Dr. Rick Wilson:  Hearing that it helps makes the time I invest worthwhile. Good night, everyone.

Moderator:  Good night, and thanks again.

 

 

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Dr. George Shafranov Speaks to Fellows

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Dr. Jay Katz (left) with Dr. George Shafranov, Assistant Professor of Ophthalmology and Director of the Glaucoma Service, Department of Ophthalmology and Visual Science, Yale University. Dr. Shafranov spoke in May to fellows and residents about corneal thickness and glaucoma. His talk was co-sponsored by Alcon and Pfizer.

 

Photo by Ken Parker

 

 

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The Disc Damage Likelihood Scale and Patient Care

 

By Ken Parker, PhD

 

Sometimes when we don’t feel well we take our temperature. Perhaps it’s 99°F. We decide that’s not so bad and take an aspirin and then measure it again a little later to see if the aspirin’s worked. We may then measure it again a few hours later to see if the fever has returned after the aspirin has worn off. Or, in another scenario, let’s say we feel really sick, take our temperature, and find a high fever, 104°F. We will want to do more than take an aspirin! We may call the doctor or go directly to the emergency room. The doctor, then will, just as we did, provide a treatment appropriate to the severity of the condition and then continue to measure the temperature at regular intervals to see if the treatment has had the intended effect.

 

In the same way, in order to be able to provide the most appropriate treatment, a glaucoma doctor needs to know the severity of the patient’s glaucoma and whether it is getting worse, staying the same, or improving.

 

It is with this fundamental need in mind that Dr. George Spaeth developed what he calls the Disc Damage Likelihood Scale (DDLS).

 

In May of this year it was adopted by the National Eye Institute for use in their glaucoma studies. In a recent interview I asked Dr. Spaeth to explain the development and importance of the DDLS in patient care.

What was behind the development of the DDLS?

A clock measures the passage of time. How is the passage of glaucoma measured? If the passage of glaucoma cannot be measured reproducibly and validly, then it is not possible to determine whether a person is getting worse, staying the same, or getting better. By “reproducibly” I mean simply in such a way that different examiners taking measurements in the same way will come up with pretty much the same measurements. If the measurements they took were different we would think that either those examiners or the method they were using were not very reliable. But even if the measurements are reproducible, they still may be wrong. Treatment cannot be appropriate unless it is known, reproducibly and validly, whether the person’s condition is getting worse, staying the same, or getting better.

Three Ways to Determine the Passage of Glaucoma

1. Ask the Person
There are three major ways to determine the passage of glaucoma: The first is to ask the person. In some situations, especially when a person has far-advanced glaucoma, the person’s symptoms may be the most important measure of how the person is doing. Many patients, however, are unable to provide accurate histories. They may be deniers, worriers, or poor observers. Furthermore, in the early stage of the disease damage can occur and progress without causing any symptoms, even in the most realistic and sensitive person. For these reasons, the history is an appropriate way to monitor the course of glaucoma only in certain individuals and at certain times.

 

2. Administer a Visual Field Test
The second way is to measure the nature of the visual field. The visual field has been used for years as a way to chart the course of glaucoma, but there are disadvantages to that method also. Specifically, between one third and one half of all the nerve fibers must die before enough damage has occurred that a visual field defect is detectable using standard testing. Additionally, many things affect the visual field other than glaucoma, including the patient’s ability to understand and cooperate, and a variety of other illnesses, such as brain tumors and cataracts. Thus, while visual fields are an important part of the evaluation of patients, like taking a patient’s history, they have limited value because they cannot monitor the passage from start to finish and are neither highly reproducible nor universally valid.

 

3. Measure the Nature of the Optic Disc
The third way is to measure the nature of the optic disc. In most people with glaucoma the optic nerve becomes damaged prior to the development of visual field loss. Furthermore, the changes that occur in the optic nerve are sufficiently characteristic that they are of great value in determining whether or not a person actually has glaucoma. When glaucoma damage becomes far advanced, it is difficult to see further damage occurring in the optic nerve. However, the difficult decisions regarding if and how vigorously to treat usually involve the early and moderate stages of the disease. By the time damage is far advanced it is obvious that treatment needs to be vigorous. Furthermore, in patients with very severe damage, patients themselves notice any further deterioration. Therefore, the progress of the disease at that point is best determined by careful questioning of the patient. Finally, the examination of the optic disc does not depend on the patient’s subjective feelings. It is an objective measure of whether or not glaucoma damage is present and how much damage has occurred.

 

Thus, evaluation of the optic nerve is at the heart of the diagnosis and management of patients with glaucoma. Being able to measure quantitatively the amount of damage that is present allows a highly valuable and practical assessment of whether the patient has glaucoma and whether the patient is getting worse, remaining stable, or improving.

 

Behind the development of the DDLS, then, was the desire to find a method of monitoring the course of glaucoma that was more reproducible, more valid, more practical, and more valuable than any system we presently have.

How would you describe the DDLS?

The Disc Damage Likelihood Scale is a method of estimating the amount of damage that has occurred to the optic nerve based on one consideration, specifically, the width of the tissue that is made up of the living nerve fibers that pass from the retina, through the optic nerve, back into the brain. Or, if that tissue is absent, the extent of its absence.

Optic Nerve and Optic Disc

One can look into the eye and see the end of the optic nerve, the optic disc. The disc is part of the back side of the eye ball. Nerve fibers extend from the retina, converge in a bundle of fibers that pass out through the wall of the eyeball, and reach back to the middle of the brain. This bundle of nerve fibers is called the optic nerve, and the inside surface of it that one can see when one looks into the eye is called the optic disc.

The Cup and the Neuroretinal Rim

Where the fibers all come together they make a funnel, which is tiny in some people and large in others. That funnel is called the cup, and the rim of the funnel surrounding the cup is called the neuroretinal rim. It is the width, or the extent of absence, of the neuroretinal rim that is the basis for the DDLS. Viewed from the front, the optic disc looks rather like a donut, the hole being the optic cup, and the actual donut being the rim. The DDLS is based on looking at the rim, and estimating how wide the rim is in comparison to how wide the entire disc is. If one had a donut with a tiny, tiny hole in the middle, then the percentage of the rim width to the width of the disc would be great. Whereas if one had a donut that was very narrow with a huge hole, then the relative rim width would be small. In glaucoma the rim gets increasingly narrow as the nerve worsens. In some people the rim actually disappears in a localized area (see c. in the illustration), and in others who have especially severe glaucoma, the rim disappears almost completely. Thus, a wide rim is a good sign, and the absence of rim a bad sign.

The Stages of the DDLS: Measuring the Level of Damage by Measuring the Width of the Neuroretinal Rim

The DDLS is divided into stages in the same way that a thermometer is divided into degrees. The DDLS has 10 stages, from 0 to 7, the first and the last stage being subdivided into 0a and 0b and 7a and 7b, respectively. Stage 0 signifies the absence of any damage at all. A DDLS score of 0 indicates an optic disc that has absolutely no glaucoma damage (see a. in the illustration). In contrast, a DDLS score of 7 would mean that the glaucoma had almost killed the optic nerve, and that there were virtually no nerve fibers left.

 

The first five stages of the DDLS are determined by measuring the point of the optic disc where the rim is narrowest. 0a means that there is no narrowing of the rim at all. Stage 3 means that the rim in at least one area is extremely narrow; so narrow that one can just barely see it. The final five stages of the DDLS describe discs in which at least one portion of the neuroretinal rim has been lost totally. In stage 4, this occupies less than one eighth of the circumference of the entire rim, whereas in stage 7b more than three quarters of the entire neuroretinal rim has been lost.

 

It becomes possible to stage the amount of glaucoma damage, then, merely by looking into the eye with a standard ophthalmoscope and noting the width of the rim or the extent of loss of the rim. Because the width of the rim varies with the absolute size of the optic nerve, it is also important to determine the size of the optic nerve before attributing the DDLS score to a particular patient. This can be done quite easily with standard equipment.

I believe that some doctors use the cup/disc ratio method to characterize the amount of optic disc damage. What is that? Why do you believe the DDLS is better?

The cup/disc ratio method is still the standard method of staging optic discs in glaucoma. The idea is that the larger the width of the cup is in comparison with the width of the whole optic disc, the more damage there is. There are two problems with this method. Most importantly, it assumes that rims become narrower concentrically. This is not usually the case, at least not in the commonest type of glaucoma. Also, neither is an optic disc with a large cup/disc ratio necessarily damaged, nor one with a small cup/disc ratio necessarily healthy. Thus, the validity of the cup/disc ratio method is not high.

 

In our studies of the DDLS we found that measurements obtained using it correlated better with amount of visual field loss than did cup/disc ratios. Additionally, the DDLS is more reproducible than cup/disc ratios. It is presumably because the validity is high, the reproducibility is good, and the method is simple to use that the National Eye Institute has decided to use the DDLS as a way to characterize the optic discs of patients with glaucoma.

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In glaucoma the neuroretinal rim gets increasingly narrow as the nerve worsens. It is the width, or the extent of absence, of the neuroretinal rim that is the basis for the DDLS.


In the illustrations, the cup is the area inside the inner “circle” and the rim is the area between the two “circles.”

“a” is a healthy optic disc, DDLS Stage 0a, in which the ratio of the rim to the whole disc (rim/disc ratio) is 0.4.

“b” is an optic disc which may possibly be damaged, DDLS Stage 2, with a rim/disc ratio of .25.

“c” is a severely damaged optic disc, DDLS Stage 7a, with no rim at all from the 9:30 o’clock to the 5:30 o’clock position.

 

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Glaucoma Research Center Actively Recruiting Patients for Studies

 

The Wills Eye Hospital Glaucoma Service is actively involved in clinical trials that are attempting to improve treatment strategies for people with glaucoma. If you are interested in participating in one of the following studies, please call the Research Center at (215) 928-3123.

  • A study comparing medication therapy to laser therapy with the new selective laser as an early treatment for patients with glaucoma. Needed are patients diagnosed with primary open-angle glaucoma who have not been previously treated with glaucoma medications for more than 14 days.
    Sponsor: Lumenis
    Principle Investigator: Dr. Katz

  • A study to test how well the medication Cosopt lowers eye pressure in glaucoma or ocular hypertension patients. Patients who have an eye pressure of 30 mm Hg or higher and who have not been treated in the last 4 weeks are needed.
    Sponsor: Merck
    Principal Investigator: Dr. Wilson

  • A study to evaluate which of the two medication combinations, Cosopt (Trusopt + Timoptic) or Xalatan/Timoptic increases blood flow in the eye more.
    Sponsor: Merck
    Principal Investigator: Dr. Katz

  • A study investigating if the substance Healon 5, when used during glaucoma surgery, affects a patient’s long- and short-term eye pressure.
    Sponsor: Pfizer
    Principal Investigator: Dr. Moster

  • Patient-Generated Index — Determining by means of a questionnaire to patients the areas of their life that are most affected by their glaucoma and what tasks of daily living, if any, they feel having the disease affects the most. Needed: another 40 or so glaucoma patients to complete the questionnaire
    Unfunded
    Principal Investigator: Dr. Spaeth

  • A study comparing the IOP-lowering of either Xalatan or Lumigan alone with a combination of the two medications.
    Sponsor: Allergan
    Principal Investigator: Dr. Katz

  • Measuring the thickness of corneas of children with glaucoma to see how it compares with that of children without glaucoma.
    Unfunded
    Principal Investigator: Dr. Wilson

  • Determining if taking a photograph of the back of the eye provides doctors as much information as an in-person examination. If so, in the future patients could have a complete eye examination at a location close to their home, without having to see a doctor that specializes in glaucoma.
    Unfunded
    Principal Investigator: Dr. Henderer

  • Comparing CAT-152, an anti-scarring drug, not yet FDA approved, with another such drug, 5-fluorouracil, the standard drug used during glaucoma surgery to reduce the risk of failure.
    Sponsor: Cambridge Antibody Technology
    Principal Investigator: Dr. Katz

  • Evaluation of the safety and effectiveness of a new, investigational surgically implanted device for glaucoma: the GMP Bi-Directional Glaucoma Implant (the “GMP Shunt”) for use in advanced glaucoma cases.
    Sponsor: GMP
    Principal Investigator: Dr. Wilson

  • 100 patients with glaucoma who have never had glaucoma surgery are needed to complete a questionnaire that will enable them to be compared with patients who have undergone a primary patent laser peripheral iridotomy that resulted in a ghost image or blurring. The goal is to determine the risk factors for these complications following this kind of laser procedure.
    Unfunded
    Principal Investigators: Dr. Moster and Dr. Spaeth

 

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Hallmark of the Glaucoma Service: Focusing on Each Unique Glaucoma Patient

 

Speaking at the Preview Reception for the Celebration of 40 Years of Glaucoma Fellowship at Wills, Dr. Spaeth emphasized the importance of focusing on each unique glaucoma patient.

A Glaucoma Patient Who Became Dizzy When she Put in her Drops

He began with a story about a patient of his, Ms. M. When she put drops of pilocarpine in her right eye, she told him, there was no problem. But, she complained, as soon as she tried to put a drop in her left eye she immediately got dizzy. The fact that she used the word “immediately” struck Dr. Spaeth as peculiar. Even though it is not unusual for pilocarpine to cause dizziness, he knew that it takes time for the drop to be absorbed, enter the bloodstream, and to affect the nervous system. He concluded that something else must be causing her dizziness.

 

So, as a little experiment he asked her to make believe she was using her drops. When she held her head back, mimicking the way she put the drop in the right eye, everything was fine. However, as soon as she turned to the right to “put a drop” in the left eye she got dizzy. Probably, he conjectured, there is something about her anatomy that is compressing the large blood vessel that runs up the back of the neck when she turns her head to the right, causing a sudden lack of blood flow to her brain, making her dizzy. If that proved to be the case, and it did, the solution to Ms. M’s problem was clear. Change the way she uses her drops, not the drops.

Tension Between the Average and Unique

The moral of the story is the theme of the entire Symposium and Celebration of 40 Years of Training on the Glaucoma Service of Wills Eye Hospital — what Dr. Spaeth called the “tension between the average and the unique, the standard and the idiosyncratic, the likely and the unlikely.”

 

He went on to explain. On the one hand, it is crucial that aspiring glaucoma specialists and, indeed, all medical students, master a complex body of knowledge — for example, that it is not unusual for pilocarpine eye drops to cause dizziness, that compressing a large blood vessel to the brain can impede blood flow to the brain and cause dizziness, that the average person does not get dizzy when he or she turns his or her head one way but not the other.

The Myth of the “Average Person”

But these doctors-to-be also must be fully aware that the person before them is not some mythical “average person.” He or she is an individual with a unique anatomy, a unique genetic makeup. The “average person” does not get dizzy when he or she turns his or her head one way but not the other. But Ms. M did. A doctor who relied only on his knowledge about “average” individuals might be tempted to find a quick fix, jumping to the conclusion that the pilocarpine was causing her immediate dizziness. “It is,” said Dr. Spaeth, “easy and quick to base diagnosis and treatment on ‘the likely,’ ‘the average.’ Indeed that is what physicians have been taught to do ever since the statistical model of disease became dominant in the 19th Century.” But fixation on “the average” can easily result in inappropriate diagnosis and treatment.

 

On the other hand, a doctor who understood that Ms. M was in fact Ms. M and not an “average person” would have stopped to consider possible ways in which she was not average. He might have considered that perhaps her unique anatomy could be causing her to get dizzy when she turned her head to the right. As in this case, being open to such a possibility, can facilitate correct diagnosis and treatment.

Caring for Individuals

“I mention Mrs. M and the matter of the average versus the unique because this reception is about Wills Eye Hospital and the Glaucoma Service at Wills Eye Hospital. What the physicians and surgeons at Wills have done well since 1832 is take care of patients as individuals. That is what we continue to do well. Our coming Celebration focuses on the accomplishments of the Glaucoma Service in that regard, especially the training of glaucoma specialists who are today diagnosing and treating patients on every continent except Antarctica with a superb combination of medical knowledge and sensitivity to the individual.”

Goals of the Celebration

Scientific Symposium

The goals of the Celebration are threefold, he explained. The first is to bring together many of these ex-Fellows and other international glaucoma experts in a scientific symposium entitled “Enhancing the Quality of Life of Patients with Glaucoma: A World of Individuals.” The focus will be on how to apply the knowledge about the “averages” researchers have discovered about glaucoma to each unique individual in a way that will work best for each individual.

 

This, he explained, represents a powerful new way to meet the challenge of glaucoma, the leading cause of irreversible blindness in every country in the world, an approach shared by the 194 Glaucoma Service-trained fellows, over 100 in foreign countries, who are now caring for glaucoma patients, doing research on glaucoma, teaching about glaucoma, and acting as academic and administrative leaders.

 

How can we find those many, many individuals, over half of those who have glaucoma, who will go blind from glaucoma because they were never diagnosed? How can we assure that those who do make it into the health-care system do not go blind because there is no way to determine what is the best treatment for each of these unique individuals? The Glaucoma Service at Wills Eye Hospital is approaching these problems in many ways. One important way is by developing an inexpensive, user-friendly way of quantitating the actual amount of optic nerve damage present in an individual (see interview with Dr. Spaeth). Another is, under the leadership of Dr. Douglas Rhee, by working toward the goal of being able to describe each unique person in terms of his or her genetic makeup and his or her biologic and socioeconomic nature so accurately that the best, the most appropriate care, including gene therapy, can be given to each individual with glaucoma.

 

The International Society of Spaeth Fellows

The second goal of the Celebration is to strengthen the International Society of Spaeth Fellows, who hold leadership positions in nearly every major glaucoma society around the world. As an organized group, they have tremendous potential to bring the knowledge and skills they have acquired on the Glaucoma Service of Wills Eye Hospital to bear, in a powerful and focused way, on meeting the challenge of glaucoma world-wide.

 

Publicizing the Accomplishments of the Glaucoma Service of Wills Eye Hospital

The third goal, he explained, “Is to publicize the accomplishments of the Glaucoma Service of the Wills Eye Hospital, so that we might gather the support of community leaders such as yourselves in our bold new quest. This we hope to do in a way that is informative, inspirational, dignified, beautiful, and fun. Thus, the centerpiece of the Celebration will be the world premier of a ballet commissioned for the occasion, a ballet which will serve as a metaphor for what we are trying to accomplish, the healing of the unique individual.”

Caring Knowledgeably for Every Unique Glaucoma Patient

“We hope,” he concluded, “that all will leave the Celebration in some way transfigured, more aware of the tragedy of unnecessary blindness, more aware of what we can do to decrease the misery caused by glaucoma and other illness, and more committed to caring knowledgeably for every person, every unique person everywhere.”

 

 

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Glaucoma Service Symposium and Celebration October 3–4, 2003

Friday, October 3: Scientific Symposium Opens

Former fellows and leaders in the field of glaucoma are featured speakers. Their topics are expected to challenge traditional thinking about diagnosis and management of glaucoma and to propose new conceptions, terminologies, methodologies and goals. It is hoped that these presentations will also influence thought leaders and policymakers in business, finance, education, politics, industry, health care and the arts and that they will find the comments sufficiently stimulating to initiate or expand various scientific projects.

International Society of Spaeth Fellows Reception sponsored by Allergan

Friday evening there will be a reception for all of those attending the Symposium, leaders and organizers of the Celebration and Symposium, and major sponsors of the weekend’s events. The reception will be held in the auditorium of the new Wills Eye Hospital, with tours of this state-of-the-art facility, including the 11th floor where the Glaucoma Service Foundation, the fellowship training program, the Glaucoma Research Center, and physicians’ private practices are located, and the 14th floor, site of the Wills Eye Hospital Laboratory for Molecular Ophthalmology.

Saturday, October 4: Celebration of 40 Years of Fellowship Training

The Scientific Symposium concludes after lunch.

 

Saturday evening, the Celebration of 40 Years of Fellowship Training will be held at the Kimmel Center for the Performing Arts. The black tie event will begin with a cocktail reception and dinner for approximately 500 guests in the Center’s Commonwealth Plaza. The program in the Center’s Perelman Theatre following dinner will be the most exciting part of the entire weekend, including the premier of a new ballet developed specifically for the occasion.

 

Dr. and Mrs. George Spaeth, are working with Meredith Rainey, a choreographer and principal dancer with the Pennsylvania Ballet, in the development of this ballet which will deal with sickness and healing, areas almost totally absent from the ballet repertory. The performance will explore the idea that the practice of medicine is an art involving the same types of knowledge, technical excellence, dedication and attention to individuality that are essential in the other arts, including ballet. It is intended to be thrilling, with the hope that it will become a standard part of the ballet repertory, a magnificent but not unrealistic goal.

 

Following the program, guests will enjoy an International Dessert Reception and dancing in Commonwealth Plaza. It is hoped that all those in attendance will leave the event with a heightened awareness of the nobility, the excitement, and the beauty of celebrating life and healing.

 

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Congratulations!

 

 

vol12no1_1.jpg - 6631 BytesResearch Fellows Drs. Sushma Rai (left) and Tara Uhler received Glaucoma Fellow Awards from Pfizer for their research at the Annual Meeting of the Association for Research in Vision and Ophthalmology (ARVO) in Fort Lauderdale, Florida, in May. Dr. Uhler was honored for her research in community glaucoma screenings, Dr. Rai for her study of Bausch & Lomb’s new Proview™ home tonometer. Pfizer presents the awards to those they judge, on the advice of Dr. Marty Wax, glaucoma specialist at Washington University in St. Louis, to have had the best presentations at the ARVO or American Academy of Ophthalmology annual meetings.

 

Photo by Nancy Petrongolo

 

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