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EyeNet Article about Eye Forums

Aug 27, 2015 - 0 comments

Internet Advice:
When Patients Go Online
by miriam karmel, contributing writer
When it comes to the world of online medical forums, the doctor is always in, and the questions
keep on coming. These forums are important to patients
and increasingly popular with them. Ophthalmologists who participate
in online medical forums report that they’ve been able to provide advice and feedback on a wide range of conditions,
from the routine to the rare. In some cases, they’ve even been able to dispense life-saving information.
Such “ask the doctor” Web sites represent
a new twist in the way patients seek out medical information. Here is a look at who’s asking questions, who’s answering them and what Internet forums
might mean for your practice.
Who’s Worried Now?
To get a sense of the scope of questions submitted, consider the following:
What’s that spot? John C. Hagan III, MD, FACS, is in private practice in Kansas City, Mo., and also helps dispense eye care information through the Eye Care Forum (, a partnership between MedHelp International and the Academy. He recalled the time a parent came online and told him that every time he took a picture of his infant’s face, the pupil on one side was white. The father wanted to know what that meant. Dr. Hagan explained that the symptom could represent
a congenital cataract, a potential tumor or a severely malformed eye. He also told the father, “This is an emergency.
Call the pediatrician and find a pediatric ophthalmologist.” Later, the father came back online to report that the child had retinoblastoma.
What’s hyperopia? “My 5-year-old recently had his first eye test; we were told to come back for the eyedrops and another test. This is his prescription.”1
Thus began an exchange between a woman identifying herself as “WorriedMom”
and Ray T. Oyakawa, MD, MBA, who is in private practice in Torrance,
Calif., and fields eye care questions
online at MedHelp.
When WorriedMom asked, “Can you explain what this prescription means, can he grow out of it? Also is it possible to make mistakes when testing children?” Dr. Oyakawa replied, “You need to get the glasses. These are very hyperopic eyes.” The woman wrote again, “Can you explain hyperopic?” Dr. Oyakawa explained the term and urged WorriedMom to consult a pediatric
Expedient Method of Communication
The conversation at online medical forums reveals that eye care providers aren’t always communicating as well as patients would like. Many of the people who turn to online doctors are there because their concerns weren’t answered by their personal doctors, said Dr. Oyakawa. Michael J. Kutryb, MD, another MedHelp ophthalmologist,
agreed that online forums help address patients’ unmet needs. “So many patients on the forums seem to have little or no meaningful relationships
with their eye care provider. It is unclear what the cause of the poor communication is, but the problem exists
nonetheless,” said Dr. Kutryb, who is in private practice in Titusville, Fla.
Even though busy doctors have created
new ways to improve communication—
such as using allied personnel, physician extenders, videos and other media—these efforts aren’t enough in some cases, said William C. Lloyd III, MD, who, until recently, fielded questions
on “Many patients leave the clinic not sure what they’re supposed to do,” said Dr. Lloyd, an ophthalmologist and ophthalmic
pathologist based in Sacramento, Calif.
The Doctor Is In
While many questions posted online are relatively routine, ophthalmologists report fielding queries leading to diagnosis
of serious conditions such as retinoblastoma (shown here), multiple sclerosis and hypertensive crises.
tools and techniques
2 may 2009
The result: They turn to an online forum. At MedHelp, for example, there are more than 6.5 million visits per month. Of those, some 250,000 visits are to the eye care areas.2
MedHelp was created to give people facing life-threatening conditions the best medical information and support. “Since then, it’s expanded to giving people a place to get the best medical support, period,” said Cindy Thompson,
who cofounded MedHelp in 1994.
At MedHelp, people often seek the support of others who share a similar condition. Or they may correspond online with one of the 125 doctors—four of whom are ophthalmologists—who are available daily to answer questions.
“We think about people living in rural areas, or people with HMO restrictions who may never have the ability to see the ‘best’ doctor at the ‘best’ eye institution,” Ms. Thompson said. “Our doctors are tremendous at explaining what the disease is, what patients need to watch for and the questions they need to ask their doctors.”
Dr. Hagan, who was instrumental in fostering the partnership between the Academy and MedHelp, spends up to an hour every other day when he’s “on call.” (The four MedHelp ophthalmologists
rotate.) He equates this time commitment to the charitable work some peers provide at free clinics.
About the Patients
While some online patients are unhappy,
most are simply confused or are digging deeper. “Often people aren’t sure when they’re at the doctor the right question to ask, so they turn to the Internet for more information,” said Sandy T. Feldman, MD, MS, a MedHelp expert and refractive surgeon
in private practice in San Diego.
Dr. Oyakawa agreed, saying that, for example, five days after surgery, someone may ask: “Is this normal?” or “I don’t see my surgeon until next week and I forgot to ask this question.”
“Basically, people are looking for more information about their conditions,”
said Dr. Feldman, who has been with MedHelp for a year. “And many times, people are confused by what they’re told,” she said. For instance, Dr. Oyakawa said he has heard a number of concerns
from people who have received
conflicting medical opinions. “I think the most frequent overall topic has to do with lens implants—which one to choose,” he said.
Walking a Fine Line
Online doctors never make a diagnosis.
At least that’s the rule at MedHelp. “MedHelp is there for information,” Ms. Thompson said. “All of our doctors
answer in general terms only.”
“We use phrases such as, ‘sounds like,’ ‘usually it’s’ or ‘most likely it’s,’” said Dr. Hagan. In addition, he never criticizes another doctor, in part because
there’s a chance he doesn’t have all the pertinent information. Dr. Lloyd agreed, “Never, never, never beat up the other provider, no matter how wrong you think he or she is.” It’s unprofessional,
he said. “Also, you don’t know all the facts.”
There’s no question that dispensing information online means that these virtual physicians sometimes have to walk a fine line:
• You’re the doctor. On one hand, as Dr. Lloyd noted, “The consumer is in the mindset that they’re talking to a doctor, and often they’ll weigh the value of your statement.”
Moreover, for some people, the online doctor is the only source of medical help, said Dr. Feldman, who recalled a person with an obvious eye problem who consulted the MedHelp eye forum because he had no medical insurance.
• You’re not the doctor. On the other hand, these online ophthalmologists aren’t interested in replacing the real thing. “I’m a kiosk. I’m a sign in a bus station,” quipped Dr. Lloyd. “Hopefully,
the information I share will amplify that [physician-patient] relationship.” But it will never replace it, he said, noting
that he dispenses advice with the caveat: “Don’t change anything without
checking first with your doctor.”
The others also use this tactic. Dr. Feldman noted that she often urges online participants to report to a doctor.
“In almost every e-mail the person really does need to seek the care of a doctor.” Dr. Hagan added that he refers people to the Academy’s homepage for help in finding an ophthalmologist.
As for Dr. Kutryb, he regards his online presence as a way to provide good information to people in need and, at the same time, serve as an ambassador for the ophthalmology profession. He tries to be compassionate
and understanding while doing his best “to lead patients in the right direction,
which is usually to an ophthalmologist’s
Looking Ahead
Dr. Lloyd’s online experience has taught him that “there are enormous gaps in the exchange of important information between patients and doctors.”
He stressed that he’s not criticizing
doctors, but rather the system that doesn’t leave time for sitting and listening. “Online communities have served as a surrogate,” he said.
Dr. Lloyd envisions a time when doctors will incorporate some of the lessons learned in their experience with Internet forums into everyday practice. In one scenario, the doctor will seat a patient at a computer at the end of the office visit. The computer will be programmed to address the patient’s unique situation. If, for example,
the patient has just been told he has pseudophakic bullous keratopathy, the computer will explain everything the patient needs to know about that condition. At the same time, a printer will generate information tailored to the patient’s needs, including the medical
regimen he is to follow and any requirements for follow-up care.
“A lot of people are working on this paradigm right now,” said Dr. Lloyd. “They’re bringing the physician-patient
relationship to the 21st century.” In the meantime, he urged ophthalmologists
to consider offering their expertise via an online community.
1 This posting edited for clarity.

Original MedHelp Blog - Dec 13, 2009

Premium IOLs have a disproportionately high number of complaints:

Aug 27, 2015 - 0 comments

Patients voice concerns about cataract surgery/IOL implantation on Internet eye care forums

“Premium” IOLs have a disproportionately high number of patient complaints.
By John C. Hagan III, MD, Kansas City, Mo and Michael J. Kutryb, MD, Titusville, Fla and Michelle Stephenson.

The Internet is increasingly being used by patients to gather health information and to discuss surgical complications and outcomes. Studies suggest that Internet health forums provide a number of benefits.1-7 For example, they provide education and emotional support, and they may reduce medical costs.  They may also provide unique and important medical research data different from the usual office/hospital/ASC setting.  

One of the largest health care websites on the Internet is MedHelp (, which was founded in 1994. Its forums are viewed more than 5.5 million times each month. The site includes two eye care forums (“Ask a Doctor” and “Eye Care Medical Support Community”) that are controlled by the American Academy of Ophthalmology. The eye care forums receive approximately 260,000 viewings each month.  We are two of the four ophthalmologists who answer patient questions.

Multifocal IOL Study Results
To summarize internet patient concerns about cataract surgery/IOL implantation, we conducted a retrospective study8 of all postings between November 1, 2007 and May 1, 2008 on the two MedHelp eye care forums dealing with cataract surgery and IOL implantation, recovery, and satisfaction with results. We identified 750 postings and  reviewed the entire discussion threads. Of these, 341 could be analyzed for causes of dissatisfaction. The multifocal IOLs were almost all ReZoom, ReStor, and Crystalens presbyopia-correcting IOLs. We summarized unwanted visual aberrations (dysphotopsia), night vision problems, blurred vision, unexpected dependence on glasses, pain, retina and other problems and patients happy with their surgical result.

All 341 discussion threads began with a question about or statement of a problem, complaint, or dissatisfaction. Two patients reported being completely blind: one due to infection and one due to bleeding. Major postoperative complications included retinal detachment, swelling of the retina, epiretinal macular membranes/macular pucker, posterior capsular opacification, displaced IOLs, IOL power/residual refractive error problems, IOL exchanges or repositioning, YAG capsulotomy, retained cortex, vitrectomy and/or scleral buckle, optic neuropathy, glaucoma, and uveitis. Minor problems included foreign body sensation, watering, persistent redness, irritation, dryness, and the need for frequent lubricants. Patients also expressed dissatisfaction about the extra expense of multifocal IOLs and the failure to achieve expected outcomes.

We were startled at the number of complaints being posted from ReZoom, ReStor, and Crystalens presbyopia-correcting IOL patients, particularly with regard to dysphotopsia and blurred vision.  Although these three “premium” lenses are used in approximately 10% of patients, the volume of complaints was amazingly 6.87 times more common in presbyopia correcting IOLs (206 complaints) than all monofocal IOLs combined (30 complaints). Stated another way, each multifocal IOL was about 60 times more likely to cause an unhappy eye internet posting than a monofocal IOL.  This was a wake-up call to us that  many dissatisfied multifocal and accommodating IOL patients are using this Internet health site to search for information and support.
Follow-up Internet Survey Results

Recently, we conducted a second Internet survey which we now report.  This survey retrospectively looked specifically at comments from ReZoom, ReStor, and Crystalens presbyopia-correcting IOL patients  during the entire year of 2008. (Table 1).   Using key words, we found a total of 210 presbyopia-correction IOL patients posted comments. Seventy percent reported being unhappy, usually due to glare and halos (68%), difficulty seeing at night (59%), and dependence on glasses (58%).

Sixty of the 210 patients were implanted with the ReZoom lens. Of these, 3 (5%) were happy, while 54 (90%) were unhappy. Seventy-seven patients were implanted with the ReStor lens. Of these, 18 (23%) were happy, while 55 (71%) were unhappy. Seventy-three patients were implanted with the Crystalens. Of these, 21 (29%) were happy, and 38 (52%) were unhappy. The percentages do not add to 100 because some patients did not express their satisfaction or dissatisfaction or comment about a specific problem.

Of the 3 lenses, the ReZoom lens had the highest percentage of unhappy patients. Zelichowska et al recently stated9, “Few reports describe visual performance after implantation of the ReZoom IOLS, and, to our knowledge, none discusses the optical performance of the IOL in situ.” Our studies should be considered by all surgeons, especially those who are using or considering the ReZoom Lens. Our studies suggest that ReZoom’s older technology is more prone to produce clinical problems and unhappy patients. The Crystalens had the lowest number of unhappy patients.  

2009 MedHelp postings indicate the Crystalens HD and Acrysof IQ ReStor IOL are producing happier patients and fewer complaints. The ReZoom remains problematic.

It is important to note, however, that our study protocol has some limitations. It is retrospective and has no control group. Additionally, most people with favorable outcomes probably do not visit health care forums to share their good results as often as people with unfavorable outcomes. Older patients may not have the same access to and ability to use the internet as younger patients.

Are These Lenses “Premium”?

Many of the patients expressed extreme dissatisfaction with their surgical results; particularly because they were told they were receiving a "premium lens", paid thousands of dollars out of pocket and had higher unrealized expectations. They not infrequently reported pressure to upgrade to “premium” IOLs. One patient described her surgeon telling her, “You don’t want a government issue implant in your eye do you?”  Given the much higher complication rate, greater cost and dissatisfaction among presbyopia correction IOL patients perhaps “premium” is a misnomer.  

Internet health forums have been used infrequently in Medicine and not at all in Ophthalmology to study patient reported complications and satisfaction/dissatisfaction with surgical procedures. Our two studies are first literature reports and offer unique and valuable insights. We believe that patients for presbyopia correcting IOLs need to be more carefully selected and educated on possible operative and post operative complications. Realistic expectations must be instilled. All patients need to know about dysphotopsia and night visual problems.  The Crystalens HD and IQ ReStor IOLs offer the highest degree of patient satisfaction.  We discourage use of the ReZoom IOL.
Given that many patients complained their surgeon didn’t listen to or ignored their complaints it’s likely that there is unrecognized and/or not reported patient dissatisfaction. This may account for the flat market share and stagnant number of surgeons using presbyopia correcting IOLs.   Surgeons may also want to create a protocol to proactively seek out and handle unhappy patients. Perhaps all these patients should complete a survey looking for unrecognized dissatisfaction 3, 6, 9 and 12 months post operatively. The lens manufacturers, as well, might want to consider having a proactive program for assisting unhappy patients. In the survey, several Crystalens patients commented on how Bausch and Lomb representatives had participated in trying to solve postoperative problems, and we believe this made a very positive impression on the patients.
Dr. Hagan is in private practice in Kansas City, Mo., and Dr. Kutryb is in private practice in Titusville, Fla.
Financial Disclosures: None for Dr. Hagan or Dr. Kutryb

1. Schroder S, Zollner YF, Schaefer M. Drug related problems with antiparkinsonian agents: consumer internet reports versus published data. Pharmacoepidemiology & Drug Safety. 2007;16(10):1161-1166.
2. Guevara E, Lim HJ, Tsai HM. Issues in online forum administration among multi-ethnic cancer patients. Studies in Health Technology & Informatics. 2006;122:885.
3. Im EO, Chee W. An online forum as a qualitative research method: practical issues. Nursing Research. 2006;55(4):267-273.
4. Umefjord G, Hamberg K, Petersson G. The use of an internet-based Ask the Doctor service involving family physicians: evaluation by a web survey. Family Practice. 2006;23(2):159-166.
5. Umefjord G, Malker H, Hensjo LO, Petersson G. Primary care physicians’ experiences of carrying out consultation on the internet. Informatics in Primary Care. 2004;12(2)85-90.
6. Umefjord G, Petersson G, Hamberg K. Reasons for consulting a doctor on the internet: Web survey of users of an Ask the Doctor service. Journal of Medical Internet Research. 2003;5(4)e26.
7. Widman LE, Tong DA. Requests for medical advice from patients and families to health care providers who publish on the World Wide Web. Archives of Internal Medicine. 1997;157(2):209-212.
8. Hagan III JD, Kutryb MJ. Cataract and intraocular implant surgery concerns and comments posted at two internet Eye Care Forums.  Missouri Medicine. 2009;78-82
9. Zelichowska B, Rekas M, Stankiewicz A. et al. Apodized diffractive versus refractive multifocal intraocular lenses: Optical and visual evaluation. Journal of Cataract & Refractive Surgery. 2008;34:2036-2042


Original MedHelp Blog - Dec 13, 2009

Timing of Cataract Surgery and High Myopia

Aug 27, 2015 - 0 comments

There is no universal time to do cataract surgery. The cardinal rule is that when the person is unable to do the things they need to do (drive at night, read, see clearly for TV, movies, perform their work) and the things they very much enjoy doing (crafts, hunting, shooting, sports, taking trips, going to friends and church at night) and the cataract is the only problem or the main problem then surgery is indicated provided the person understands the risks and the alternative of not having surgery. (In some cases there are risks to understand of NOT having surgery such as the cataract getting to hard [increases the risk of surgery], too 'ripe' [rare in the US but a big problem in so called third world countries requires emergency surgery], not being able to pass a drivers license, pilot's license, commercial driving license, increase risk of falls and disorientation in the elderly.

If there are other problems in the eye such as macular degeneration, glaucoma, diabetic retinopathy or maculopathy, amblyopia, etc. the problems will still be present after the surgery and will affect the final result. When groups of people that have had cataract surgery get together and talk about their results the variation in the final results are usually not due to complications but that those with poor vision post operatively have other problems in their eye that the cataract surgery did not, as was not expected to help.

Having said the above a commercial pilot, over the road trucker, a person that works at night, taxi drivers, etc will need cataract surgery at a relatively early stage to do their work safely and meet their job requirements. A person in their late 80's to early 90's that doesn't drive, doesn't read, rarely goes out of their house, that has multiple other physical or mental problems will likely not be bothered by a relatively large cataract and the best course of action may be to leave that 'big' cataract alone.

With your high myopia your vision was likely never a crisp 20/20 and never will be even with successful cataract surgery due to the myopic macular degeneration---something that can worsen with time. You are also at an increased risk of retinal detachment. (please see previous postings on vitreous detachment, retinal detachment, flashes/floaters/curtain & veils) on the ophthalmology website, the eyecare patient forum, use the "search feature" on the site.

Cataract surgery, even successful small incision surgery increases the risk of retinal detachment by as much as 5-10 times normal. (rough estimates 1 in 3-4 thousand for people not having had cataract surgery and no major risk factors to 1 in 500 or even less after umcomplicated surgery). Your risk without cataract surgery can be as high as 1 in 200 to 1 in 500. After cataract surgery your risk may be as high as 2-3%.

Provided you understand these risks you would be a candidate for cataract surgery anytime your feel it is a major problem as outlined above and your eye surgeon agrees.

This is what I do in my highly myopic patients that are considering or have decided to have cataract surgery.

1. I give them detailed "informed consent"
2. I sent them to a retinal specialist for a second opinion abour cataract surgery and a special detailed examination of the retinal looking for holes, tears, thin areas, vitreous traction, existing small retinal detachments. If these are present the retinal specialist will often use laser or a freezing treatment to bolster or strengthen these areas.
3. The surgery is done using several special techniques that lower the risk of surgery in the highly myopic.
4. I see the person more often than my regular patients. The myopic patient knows the symptoms of a possible retinal detachment (flashes, sudden increase of floaters, loss of peripheral vision). I instruct the patient on "finger counting visual fields" and have them check their peripheral vision at home daily.
5. At one week and 6 weeks the patient sees the retinal specialist to repeat the special examinination of the retina looking for new problems--if present they are treated.

I believe that is the information your need. If your vision is a big problem (not a small or medium size problem) and the cataract is the main reason and you have confidence in your surgeon and the surgeon agrees that surgery would be beneficial (BUT NO SURGERY IS EVERY RISK FREE) then you may want to proceed with the surgery.. (the risks are much, much less now than say 10-15 years ago due to better techniques). Because of your age (young) your will in all likelihood need cataract surgery sometime.

Good luck.

Original Blog on MedHelp - Apr 07, 2010

Explanation of optic nerve "cupping" and Cup to Disk Ration

Aug 27, 2015 - 0 comments

optic nerve cupping


cup to di

"cupping" is a term applied to the optic nerve on the back of the eye. The optic nerve generally has a "dimple" or "cup".  Ophthalmologists use a ratio called the cup to disk ration "C/D ration".  An estimate is made of the width of the cup to the width of the whole optic serve. It is usually expressed as a decimal tenth. A flat optic nerve with no cup would be C/D = .0  an optic nerve ravaged by glaucoma that is 'cupped out" would be C/D = 1.0   So the possibilies are: 0, .1,.2,.3.,.4,.5,.6,.7,.8,.9,1.0      Some physicians express two numbers one being the verticle C/D and the other being the horizontal C/D. It has been shown that these are not exact numbers. There are large variations from observer to observer and even from the same observer from visit to visit.

90% of the population without glaucoma have C/D ratios of .4 or less. So a larger C/D might indicate glaucoma. However it's very complicated. You can have glaucoma with a small C/D and not have glaucoma with a large C/D. Other factors need to be taken into account like family history of glaucoma, age, corneal thinness, intra ocular pressure (remeber you IOP varies from hour to hour just like your blood pressure and your blood sugars. Many patients with glaucoma have normal IOPs for some or even most of a 24 hour period, conversely patients without glaucoma may top out over 21 for part of the day). Another factor is if the C/D are different in each eye, usually they're the same size.

When I see a patient with a C/D ratio or .5 or more I always tell them and explain what it means so that the next ophthalmologist that examines the patient will know it's been noted before.

I would never tell a person they had "moderate cupping" without explaining what it meant and giving them "the number" to add to their medical records.  Sometimes I'll take a photograph of the optic nerves as a baseline. A new and wonderful instrument the OCT (optical coherence tomography) instrument has taken a lot of the guessing out of these issues and if there's any question at all that's the test I go to.


Original Blog on MedHelp - Apr 07, 2010