The Informed Patient

Chat Highlights
January 5, 2005

Norma Devine, Editor

The following discussion was requested by a glaucoma patient.  No doctor was
present.

Moderator:  If your glaucoma was diagnosed before you could use the Internet to find information, and you were trying to learn more about glaucoma, what did you do?

Sh:  I'm one of the fortunate few who had a glaucoma doctor strongly in favor of patient education.  When he first diagnosed me as a glaucoma suspect, I was taken to his "education room" to watch videos and read pamphlets.  A technician was available to answer questions. 

Aa:  Wow!  Lucky you.  My doc told me that I needed to start drops, but not much else.  Thank God for the Internet. 

Vi:  At first, I did nothing.   I had a pamphlet from the office, and all I knew was what my doctor told me.

Pg:   My general ophthalmologist lent me a medical book. Unfortunately, it was written in medical terms, so I didn't understand much.

Ma:  My husband and I just accepted that he needed eyedrops and didn't realize glaucoma could be such a problem.  We were so ignorant we thought glaucoma was just something like migraine.  Unfortunately, we didn't get any information from anywhere.  Later, we felt like idiots. 

Moderator:  Have many of you used a library to learn about glaucoma?

To:  I did for a few weeks, until I found this chat room. 

Vi:  No, I have not ventured into a library for information. 

Ju:  I went to the library.  What I read was Greek to me.  I had looked at a picture of the human eye when I worked for an ophthalmologist for seven years, but that didn't help much. 

Sh:  I went to a bookstore, not a library. 

St:  I did okay in a library, once I figured out how to spell ophthalmology. 

No:  "Venture" into a library?  When my glaucoma was diagnosed in early 1988, my husband, who was teaching in a university, and I practically lived in the medical school library.  We had access to journal articles and medical textbooks and kept the copy machine well fed.  Soon the names of top guns in the glaucoma field -- Anderson, Drance, Ritch, Spaeth, Krupin, Wong, Weinreb, Friedman, Kass, and many others -- became household words.  We made extensive use of the references provided in articles and books. 

To:  I just went to the library today and found the only book on glaucoma: "Coping with Glaucoma," by Edith Marks.  Seems pretty good. 

No:  Edith Marks, with Rita Montaredes, did all glaucoma patients a great service by writing "Coping with Glaucoma."

Sh:  The book is being updated.  I hope it will be on the market soon. 

Ja:  I'm a librarian so have done quite a bit of research on my type of glaucoma.  Since I have no control over the glaucoma, being knowledgeable helps make me feel somewhat more empowered.  If you don't have access to a good medical library and you find a citation on PubMed that you absolutely have to read, you can request it through interlibrary loan at your local library. 

Na:  Since there's a history of glaucoma in my family, I knew about the eyedrops and what glaucoma was.  I am also a nurse.  But I remember being taught that you had glaucoma if your intraocular pressure (IOP) was 25 mm Hg.  When I was diagnosed, my IOP was 24 mm Hg.  I never knew about cup-to-disc ratio, notching, or disc pallor. 

Mi:  Besides reading articles, I got lots of information from Dr. Alon Harris at the University of Indiana , and I consulted him. 

Moderator:  Has a lack of information about glaucoma caused you to have a bad experience?

Ma:   I am afraid my husband and I never realized the seriousness of glaucoma.  Our only experience was with a grandfather who used drops, but he was in his eighties and it seemed no big deal. 

No:  The baby boomers, who are more computer literate, are reaching their 60's.  They will be better informed about medical problems, which will force changes in the doctor-patient relationship. 

Vi:  I cannot say I have had a bad experience because I was not informed early on.  If I had to do it again, though, I would have researched glaucoma before allowing any laser surgery. 

An:  Yes, definitely.  I didn't know about the need for lifestyle changes until about a month ago, and that was unfortunate. 

Mi:  The one thing that would have helped me was knowing that there was such a thing as normal-tension glaucoma (NTG).  Because my intraocular pressures were "okay," no doctor worried about glaucoma. 

St:  Has being informed about glaucoma helped you make difficult decisions?

Ju:  Definitely.

Sh:  Knowledge is power.

Vi:  Without a doubt, it has helped.

No:  Some of us ask more questions, but that doesn't mean those other patients are not just as interested in getting information as we are. They are just too shy or intimidated to ask. Our doctors would do well to find out what we patients want and need to know.

Pr:  I am lucky to be working with a wonderful glaucoma specialist who has respected what I have managed to learn about the illness. We work together as a collaborative team. Quite extraordinary. He has also been entirely comfortable when I have sought an additional opinion. That is not because I doubted his own perspective, but simply because I felt additional input might contribute, as indeed it has.

The Wills chat has clearly been a key resource for many.

No:  If patients and their caregivers are well informed and understand why treatment is necessary and what it's like, they are more likely to follow the treatment regimens and their doctor's instructions. I suspect that if more doctors responded to their patients' emotional needs, they would alienate fewer patients, would suffer less burn-out, and fewer medical malpractice lawsuits would be filed.

Pr:  There are definitely docs with whom I could never have established anything like the sort of relationship I enjoy with my doc. Just not their "style" or perhaps not a good match for me personally. (There is a "match-making" dimension to medicine as well.) They may be superb in other ways -- as diagnosticians, surgeons, researchers, etc., rather than as communicators or listeners. For certain kinds of surgery, I can think of some I would hope to work with for that reason specifically.

Sh:  With hindsight, what question do you now wish you had asked your doctor at the time of diagnosis?

Na:  I wish we had gone to a glaucoma specialist years ago.  My mother and I thought our doctor was thorough.  He had us returning every three months. 

Ma:   I would have asked how long my 50-year-old husband had before he lost his sight.  It wouldn't have mattered though, as the answer would have been way off.  We were told that most people never go blind, or usually don't go blind until they are in their 80's, so we figured why worry. 

An:  I had the same experience.  Now, I have to rethink my exercise routine and how to cope with stress, which is next to impossible. 

No:  Some forms of glaucoma, unfortunately, are harder to treat and more aggressive than others.  I doubt if any doctor could have predicted how long your husband would retain his sight or how effective the treatments and operations would be in preserving it for a certain number of years. 

Ma:  Yes, but I do feel that doctors should be better at sharing information or advising where to get it.  My husband and I are taking information back to the specialist and he checks it out.  We live in Australia. 

Sh:  There's no reason doctors can't have a well-trained tech spend some time educating a patient or showing a video or providing informative pamphlets. 

Pe:  I've found the best method for research is scanning the medical literature in abstracts online, using PubMed or some similar database.  I use the abstracts as a guide, then actually go to a good medical library and photocopy the pertinent articles. 

Moderator:  Has being informed, understanding the terminology, etc., helped your relationship with your doctor? Does your doctor encourage you to become an informed patient?

Sa:  I learned more in this chat room than from my doctor.

Ma:  So did I.  I learned more here than anywhere else.

Ag:  Same here!

Ju:  Me, too!

Mi:  When I first went to my glaucoma specialist, I told him what a nuisance I am about being informed and participating in the treatment plan.  I told him that if that was not his style, we could part quickly. 

Na:  Docs today are so busy.  They don't have time to educate patients. 

No:  Most busy specialists are like that.  It's up to us to find reliable information, and that's not easy for everyone. 

Pg:   My doctor doesn't have the time for, or apparently the interest in, educating me.  That's why this chat is so informative for me.  On my last visit, my glaucoma specialist said, "You've been doing your homework."

Moderator:  Was he happy about that?

Pg:  It didn't seem that way.  His remark seemed more like a wisecrack. 

Sh:  Unfortunately, most patients don't even know where to begin.  I'm glad we're starting to speak up and not just take a diagnosis lying down!

Vi:  Being informed has helped me communicate better with my doctor. 

Mi:  The glaucoma specialist I chose interacts with me on the choice of drops and exam needs, based on my knowledge and his willingness to work with me. 

Sc:  I learned much more here than from my doctor. 

Vi:  I think it helps the doctor when he knows the patient understands and is taking part in his or her care. 

Na:  I was shocked when I learned that my mother's doctors never told her anything about what he was doing or why.  The technician told me my doctor is quiet, but because I'm a nurse he talks to me more than the other patients, because I can understand what he's talking about and vice versa.  Remember that most patients are elderly and from the old school where you don't ask questions. 

An:  My doc will answer most questions if I know what to ask, but he won't volunteer information. 

Sh:  Of course, there are some people who want as little information as possible.  Too much information scares them. 

St:  What would you recommend to someone just diagnosed with glaucoma or as a glaucoma suspect? For instance, what would you suggest to help overcome the fear that is common to anyone facing the potential loss of vision?

Na:  Make sure you write stuff down.  That saves time for both the doctor and you. 

Sh:  Read "Coping with Glaucoma."

Ma:   Take someone with you.  You only absorb half the information at a visit. 

Vi: Educate yourself.  Do not be afraid to ask questions.  Find a support group like this one. 

Moderator:  Does learning explicit information about glaucoma help or hinder you cope with the emotional effect of glaucoma?

Sh:  Having a thirst for knowledge helps me.  I want to learn as much as I can about any condition that affects me. 

Pg:  I would tell someone just diagnosed what Dr. Rick always says, which is that most damage occurs before the patient is diagnosed with glaucoma. 

To:  Early on, the most important information is learning that about 90% of glaucoma patients do not go blind. 

Ma:   Knowing what to expect and what may happen has got to be a help. 

Na:  That's all good advice.  I wish I had known what was going on.  I would have intervened before my Mom lost her sight. 

Mi:  I would tell new patients that the treatment of glaucoma is a series of trial-and-error tests with medications.  Also, tell them bluntly that there is no cure for glaucoma, only treatment.  Most people do avoid blindness with proper treatment, but you must be informed about the choices.  Read the literature, participate in this chat room, do research, etc. 

Na:  This site is a godsend.  You can ask general glaucoma questions and save the specific ones for your personal doc.  That saves time, too. 

Vi:  You can join a local support group.  People in the Philadelphia area can attend support group meetings at Wills Eye.  A schedule of the meetings is posted at the following web page.  http://www.willsglaucoma.org/support2004.html

An:  I want all the facts, with details, not the "you're fine" talk.

Pe:  Being informed is invaluable to a patient, but it doesn't necessarily work wonders for your relationship with your doctor.  Even those who encourage it don't necessarily have the time or patience to deal with a patient who's not informed, but who wants a substantive discussion.  I see my doctor's waiting room filled with people who are all much less challenging than I.  They're older, and make social small talk.  All they want is to walk out of the office with their prescription in hand and some encouraging words.  And then I come in and actually want to have a substantive conversation about, say the ramifications of acquired iris pigment from a prostaglandin analogue.  That means the doctor has to work harder. 

Mi:  I would also tell newly diagnosed glaucoma patients to leave their ophthalmologists and find a glaucoma specialist. 

To:  I know of no glaucoma support groups in my area.  This chat room is it for me. 

No:  Unfortunately, some glaucoma patients become cynical and bitter after adverse results from treatment.  Their attitude can affect other patients' perspectives and cause them to distrust their doctors. 

Sh:  If you go to the Glaucoma Foundation website, there's a list of glaucoma support groups around the world. 

Vi:  On the Wills web pages you can find links to those websites.  http://www.willsglaucoma.org/links.htm

Sh:  There are several glaucoma-related Yahoo mailing lists.  Go to groups.yahoo.com and sign up for a list.  You can either read the messages on the website or have the e-mails sent to you.  Some of the lists aren't very active. 

St:  Do you think being informed about the known risks and potential benefits of your treatment helps you cope with it better or does that frighten you?

Mi:  Yes, being informed helps.  Instead of being a passive participant in your care, you become an active participant in it. 

Pe:  Being informed both frightens you and helps you to cope.  They're not mutually exclusive.  Fear is a powerful motivator. 

Pg:  Being informed helps me to keep my questions specific to my glaucoma. 

Moderator:  What are the pros and cons of using the Internet to gather information about glaucoma?

No:  I hesitate to say this, but here goes:  Over the years, I've seen some patients misinterpret information they read.  They don't have the background or training to understand the technical language.  Or they become persuaded that some magic cure or vitamin supplements exist.  They can and do mislead other patients, and that misinformation can be risky. 

Sh:  It does take a medical mindset to be able to understand a lot of the abstracts and final determinations. 

Pe:  Well, you have to always consider the source.  A refereed journal is one thing; somebody's hobby-project Web site is another.  You can't just regard everything you access with the same uncritical eye.  You must be very critical of everything, and then you're okay. 

No:  I get concerned when someone who "talks the talk" establishes credibility with a glaucoma group and persuades a patient that he or she has the answer to that patient's glaucoma problems in the form of some vitamin, etc.

To:  Having the Internet available is like going to the library without leaving the house.

Sc:  We subscribe to a number of medical newsletters.  Most of them concern the heart.  I wonder if there are any newsletters specifically related to glaucoma.

Vi: There is no fee to subscribe to Searchlight on Glaucoma. http://www.willsglaucoma.org/searchlight/index.htm

Pe:  With the advent of Google, information retrieval is almost like magic.  PubMed allows a refined search of the medical literature.  But anybody can post anything on a Web site, regardless of its veracity or utility.  An informed reader, however, learns to distinguish between what's reliable and what's not.

Ja:  I feel very grateful that there are glaucoma specialists who participate in this chat and monitor some newsgroups.  They are to be commended.

Mi:  Has anyone had experience in telling your doc that you want a second opinion on surgery?

Vi:  Yes, I have twice.  The first time my local eye doc did not understand and asked me flat out, "Why?" I told him I was scared.  Years later I needed surgery again.  I told my local eye doc I was going to Wills to have my surgery.  I could tell he was kind of upset.  He said to go, but not to come back until I was completely cleared.

No:  Do any of you think people are still being treated for glaucoma who don't have it?

Moderator:  Yes, I'm sure.  There are still people who equate high IOP with glaucoma!

Ju:  Yes.

Ma:   People wouldn't be that stupid would they?

Vi:  I think maybe some people with slightly elevated pressures are being treated when maybe they do not have any signs of damage.  So, yes.

Pg:   I think that's a possibility.  There are general ophthalmologists who don't keep up with the results of glaucoma studies. 

Mi:  I think that what we call glaucoma is really many different conditions.  However, the frustration is that the only treatment is lowering IOP.  Kind of like using aspirin for a fever.  That helps but doesn't cure.

Moderator:  Anyone have tips on cool online tools for patient education beside the obvious glaucoma education sites? I love the handbook of ocular disease at http://www.revoptom.com/HANDBOOK/default.htm

No:  Everyone who participates in these chats is contributing to chat highlights that are read by patients all over the world.  I dream of them bound in a book and placed in every eye guy's office in the world in all languages.  A couple of patients told me they have printed out all of them.  Imagine that! I haven't counted lately.  Must be around 240 of them. 

Sh:  I love that idea! It should be a loose-leaf book so the new chats can be easily added. 

Pe:  When I first came across the Wills glaucoma chat archives during the course of a Web search, I thought it was one of the best patient resources I'd ever seen.  Still do. 

Ju:  I'm sitting here with a warm cloth on a sty.  I read the chat highlights about this pesky condition, and I would like to thank you moderators for the wonderful job you do. 

Sh:  I'm always referring patients to the chat transcripts. 

An:  It would be nice if more doctors came to this chat room to become informed about their patients' concerns, too!

Gu: Thanks to all who make this chat room work!  It's a great resource. 

[Editor's Note: Last year the Glaucoma Research Foundation (GRF) reported that one in ten of the patients surveyed felt "he did not receive adequate information from his doctor," and "60% of the survey respondents who switched ophthalmologists cited poor communication as their motivation."]

End of highlights for January 5, 2005.

On January 12, Dr. Spaeth discussed "Glaucoma Down Through the Ages" in the Chat room. Click here for highlights of that meeting.

Click here for the most recent glaucoma chat highlights and links to the chat archives.

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