The wealth of information--and misinformation--flooding the
World Wide Web is altering the way patients make decisions about
medical care and surgical options.
Walter Bethke Senior Editor
For good or ill, there's little doubt that the World Wide Web is changing the way patients pursue health care. As one 9 D myope writes in a LASIK forum, "...my failure to perform research on the Web [was] one of my greatest mistakes...Had I taken even a few minutes to read this information, I would never have undergone LASIK surgery."
Patients who surf the Web share one common quest: reliable information. What type of information are they looking for? Is there anything an ophthalmologist can do to provide them with the information they need before they become dissatisfied and turn to the Web? Here's what patients, surgeons and Website developers have to say.
In the Dark Ages
Before the Internet, a patient's road to finding information was
longer. Patients would make the rounds, visiting their doctor,
then possibly a specialist and then seeing what a library had
to offer. For some patients, that was very inconvenient.
"Before the Internet, I'd go to the library," says Janet Blanchfield, a 64-year-old financial consultant who was diagnosed with dry AMD eight years ago. "But the library is more difficult, because the text is often too small to read easily. The computer is much easier to use, especially with a big monitor." But just getting there was a challenge. "That's a huge problem for people with low-vision," she says.
For motivated, early-adapting patients considering refractive surgery in the days before the Web was ubiquitous, old-fashioned information gathering may not have been a deterrent. For the larger but less-determined bulk of early candidates, however, it may have been. "Before the Internet, patients looking for refractive surgery information just chose not to decide in many cases," says Glenn Hagele, director of the Council for Refractive Surgery Quality Assurance. CRSQA maintains a Web presence designed to drive candidates to refractive specialists.
Today, that's all changed.
The Web makes it not just easier to access information, but yields
a wider range of information than, say, a periodical search. That
disappointed 9 D myope didn't have Web access. Instead she read
40 hardcopy articles. "This appeared to me at the time to
have been a thorough search, and I felt well-informed. I did not
realize how underinformed I truly was," she writes. "Reporters,
operating under tight deadlines, eager to write happy stories,
and easily impressed by LASIK successes, are generally superficial
in their discussion of LASIK... If they even discuss any of the
potential side effects, these warnings are buried beneath mountains
of glowing reports from those who are thrilled with their surgical
outcomes."
The flood of information today means patients have different expectations and perceptions than in the past.
What Patients Are After
Predictably, patients with different conditions have different
goals. Patients contemplating elective procedures hit the Web
with far different goals than those who may be losing vision to
diseases such as AMD.
Kansas City surgeon Dan Durrie has noticed that his refractive surgery patients are usually concerned about one thing: complications. "If they feel dissatisfied with the information their doctors provided, they'll turn to the Web."
There, patients often get much of their information about the risks of the surgery from bulletin boards, in which other patients share their thoughts. Most of these dwell on negatives of the procedure, since the patients with good results usually won't feel the need to post anything. Though this can cause the information to become skewed toward the negative, that may not be all bad.
"These patients with complications serve to help prospective patients understand that not everyone gets a perfect result," says William Trattler, MD. Dr. Trattler developed a Website, (www.asklasikdocs.com) where patients can ask questions of refractive surgeons.
He also sees trends in complaints, which may help you understand what patients are seeing on the Web.
First, he says too many patients don't understand that their vision won't be instantly perfect post-op. "There's a five or six day gap after the procedure in which patients exclaim, 'Gosh! What's going on with my eyes? Everything's blurry!' This may be a sign that surgeons or pre-op physicians need to emphasize that it will take time for the vision to stabilize," says Dr. Trattler.
Patients with qualitative vision complaints following LASIK appear to dominate some forums. In many instances, patients feel they weren't adequately informed of the possibility for such things as glare and haloes before surgery. Now they perceive that surgeons are downplaying their qualitative complaints. The accuracy of tests of pupil size is often a hallmark of these discussions.
Once more, from the disappointed 9 D myope: "...my 8-mm dim-light pupils were never checked by my ophthalmologist. [That is] a category which should have either excluded me outright or at least ensured that I was well-warned about the low light vision problems I could expect."
A fellow patient from the same site had a similar complaint. "What I did not know--what I wasn't told--was that my pupils were on the edge of where most doctors probably would have mentioned the increase in the risk factor for glaring," he writes. Another pearl gleaned from Web complaints is that surgeons need to place greater emphasis on discussing presbyopia with myopic LASIK patients. "The loss of near vision is a common complaint," says Dr. Trattler. "And many will claim they don't remember the surgeon discussing it."
Of course, the accuracy of information shared at these sites can be suspect, too. "A lot of times the information they come in with can be quite dated," says Dr. Durrie. "For instance, one patient cited an overall LASIK complication rate of 2.1 percent, based on an article from Emory University from 1995 or 1996. Now we can quote the CRS LASIK study, which reported complications at a rate less than 1.0 percent." To counter faulty information, Dr. Durrie makes sure he can cite up-to-date data.
There is, of course, more to the Web than pages devoted to "horror stories," and patients know this. Many of them concentrate on the Web sites of practices or individual surgeons.
Diane Dow, Internet services manager for the American Society of Cataract and Refractive surgery, says the most popular LASIK question received each month at the ASCRS site is, "Am I using a good surgeon?" To find an answer, they often check out a practice's Web page. There, they expect to get an idea of a doctor's qualifications, as well as some information about the procedure itself.
Glen Lubbert, president of Mojo Interactive, which specializes in creating Web pages for doctors, says choosing the right surgeon is foremost in patients' minds when considering an elective procedure. "When patients visit our clients' Web pages, they usually visit the 'About the Doctors' section of the page, as well as 'About the Practice' and 'Patient testimonials,' " he says. "People are looking to compare doctors. They want to know what the doctor's done, and who he is."
Many of these private-practice sites, often directed at promoting LASIK, suffer the same weakness as early news media reports, according to Dr. Durrie. "Patients only find positives. The pages don't talk about risks or complications," he says.
However, there is a neutral ground. Dr. Durrie suggests patients visit the homepages of the International Society of Refractive Surgery and the Council for Refractive Surgery Quality Assurance (CRSQA). Dr. Durrie says these sites "help patients structure their questions before they come in to see the surgeon."
"We're neither cheerleaders nor naysayers," says Mr. Hagele. At his organization's site, they "try to put information that's straightforward and factual. We want to provide all the information someone would want, and let him or her make the decision."
Fighting for Sight
Patients with conditions such as glaucoma and AMD are more likely
to be searching the Web for hope.
Wills Eye retinal specialist Carl Regillo says that such patients are usually searching for new treatments. "They've heard that their condition is untreatable; that leads them to search for techniques they believe their doctor may not have been aware of," he says.
"It's like getting a second opinion," says Mrs Roder. "These patients realize that the doctor has limited time to spend with them reviewing what can be done. It's comforting to learn on the Web that there are all these studies around the country, because it makes you feel as if there eventually will be an answer."
Information on research is also important to these patients. If their doctor can't provide it, they turn to the Web.
These patients also perceive uncertainty from the ophthalmic community as to which way to turn for answers with AMD, and this drives their search, as well. "Doctors sometimes don't agree on what should be done," says Mrs. Roder, "so people keep searching."
That can be daunting for the lay person. For physicians interested in providing information on a Web page, basic information, with links to more specific areas, may be best.
"I often have to re-educate," says Dr. Regillo, "because they may find out information about an eye condition they don't have. For instance, they print out information on 'macular degeneration' when they actually have macular hole."
Patients are also looking for practical advice.
"It's the little things that drive people crazy." says Mrs. Roder. "For instance, you can use your peripheral vision to cut a grapefruit, but then you can't see the segments." She says half of all the calls she receives as head of a support group are for very specific questions. How do I put on my makeup? How do I shave?
"There are so many new skills you have to learn," she says.
Ultimately, the Web provides an digital "second opinion." And though some of the information there can be questionable, it can throw new light on their problem, light they may not have seen before.
"The right Websites deliver effective health information to patients," says Dr. Trattler, "enabling them to make more of their own decisions about their health. And I think that's a good thing."
Experts say when prospective LASIK patients take to the Web, and sites such as CRSQA's above, one of their primary goals is to check out their surgeons.
Tales from the Darkside
Patients who surf the Web will encounter all sorts of information.
Often it's up to the surgeon to sort out the good from the bad
when it's later dumped in his lap. Here are several sites that
are more likely to come up in patient discussions of the negative
aspects of procedures and treatments:
Sci.Med.Vision (http://www.remarq.com/threads.asp?g=sci%2Emed%2Evision)
This is an online forum dealing with eye care, though most of the questions posted often center on refractive surgery. The potential for problems arises, however, in that a patient's question isn't guaranteed to be answered by a physician. Rather, other patients may post misleading replies.
For instance, visiting the site recently turned up a posting in which the writer, a doctor himself, claims that Intacs suffer from a 50 percent explantation rate, a number much higher than that reported in the official FDA trial. A day later, a post-op Intacs patient replied to the first posting, in an attempt to set the record straight. He stated that, according to the surgeon who performed his surgery, out of the "couple hundred" Intacs procedures performed at St. Louis University during the trial, only two required explantation. However, if this patient hadn't logged on to provide a counterpoint, the original posting could have given potential patients an inaccurate idea about the procedure.
Surgical Eyes (http://www.surgicaleyes.com)
This Website, established by patients whose experience with refractive surgery has been less than ideal, bordering on outright bad, attempts to help patients with similar plights. It does this through advocating more thorough pre-op patient screenings, raising awareness of complaints such as glare and haloes, and sensitizing both doctors and prospective patients to refractive surgery's risks by way of a forum in which patients share their horror stories. (Several of the dissatisfied LASIK patients quoted in the accompanying article were found on Surgical Eyes.) Prospective patients who happen upon the site will be treated to a very different view of refractive surgery than that proffered at some other, more promotional sites. The introduction page reads: "Although we are not without hope, it is also impossible to ignore the depth of despair and compromised lives evident therein." It will be equally as hard to ignore the myriad of questions patients will no doubt have after a visit to Surgical Eyes.
I Know Why Refractive Surgeons Wear Glasses (http://members.aol.com/eyeknowwhy/)
This site covers refractive surgery in detail, even touching on issues as esoteric as the laser transition zones and the various layers of the cornea. However, as the title implies, the Website also provides a healthy dose of skepticism about refractive surgery's ability to treat everyone.
One of the first things visitors read is the following, "If you have already had refractive surgery, think now before you go further--Do I want to know more? This site is graphic and presents issues that may disturb postoperative patients."
One of the more eye-opening sections of the site is called "Refractive Surgery Hype and Euphemisms." Here, patients can learn that a "starbaby" is a refractive surgery patient who suffers from starbursts, and a "cattle call" is a refractive surgery marketing strategy that tries to recruit patients through seminars. Though these and other terms might shock some patients, the site is quick to note that "This list is not intended to 'indict' all refractive surgeons as greedy, unethical, incompetent and uncaring. In fact, many refractive surgeons are truthful with patients..." In the end, "I Know Why..." urges patients to be skeptical of everything the read or hear about refractive surgery, including that on the "I Know Why..." site itself.
Though each of these sites has a different layout, different content, and different ways of expressing itself, the message is the same: Caveat emptor.
Table 1: Web Pages for the Discriminating Browser
| American Academy of Ophthalmology | www.eyenet.org | Good site for reliable, though general, information on eyecare. |
| American Society of Cataract & Refractive Surgery | www.ascrs.org | Information focused on the concerns of patients about to undergo cataract or refractive surgery. |
| International Society of Refractive Surgery | www.isrs.org | In-depth information on refractive procedures, especially Lasik; includes an "Ask a doctor" room. |
| Ask LASIK Doctors | www.asklasikdocs.com | A Q & A Bulletin Board site where patients can have questions answered by surgeons. |
| The Council for Refractive Surgery Quality Assurance | www.usaeyes.com | The home page of one of the only organizations to certify the skill of refractive surgeons. |
| The LASIK Institute | www.lasikinstitute.org | Site developed by New England Eye Center and Summit Technology; devoted to education and news about Lasik, as well as its risks and benefits. |
| New York Online Access to Health (NOAH) | www.noah.cuny.edu/eye/eye.html | A comprehensive site with links to related eyecare sites, from refractive surgery to strabismus |
| The National Eye Institute | www.nei.nih.gov | Covers basic eyecare topics as Institute well as descriptions of the numerous studies funded by the NIH. |
| The Foundation for Fighting Blindness | www.blindness.org | Homepage of the national organization with information/support for patients with all retinal degenerative diseases. |
| Macular Degeneration Foundation | www.eyesight.org | Information for patients with all forms of macular degeneration, including updates on stud |
| Lighthouse International | www.lighthouse.org | Offers advocacy, news and education for people with low vision |
| American Printing House for the Blind | www.aph.org | Offers special products such as tools and media for the blind. |
| American Association for Pediatric Ophthalmology and Strabismus | med-aapos.bu.edu/ | News and related links, as well as a "public forum" where patients can ask questions. |
| The Glaucoma Foundation | www.glaucoma-foundation.org | A site devoted to education, research and practical support for people with glaucoma |