In Search of Answers

You can find almost anything on the Internet these days. But while eBay might be able to provide you with the spare part that you need for your lawnmower, and snopes.com can settle that “is it a hoax?” debate once and for all, things begin to get a bit complicated when it comes to healthcare – eye care included. Peoples’ over-reliance on the Internet as a source of health information is perfectly understandable. Doctor Google doesn’t charge, and will return information aplenty on whatever is asked. Unfortunately, the quality and accuracy of that information can vary considerably, with a plethora of misleading (and sometimes downright inaccurate) advice available, especially when Internet forum posts start to turn up in the search results. We wanted to know what answers patients are looking for. We visited online forums and blogs designed to connect individuals with a progressive ophthalmic disease – keratoconus – to understand exactly what information patients seek, and to establish what their most common questions were. We then posed these questions to a leading keratoconus specialist and researcher, Frederik Raiskup, to compare the expert’s answers with some of the information that patients might find if they look elsewhere.

The Expert Frederik Raiskup

• Highly experienced corneal and refractive surgeon and academic researcher
• Medical doctor for over 20 years; qualified ophthalmologist since 1999
• Senior Consultant at the University Eye Center, Carl Gustav Carus Hospital, Dresden
• Graduated PhD in 2008
• A leading authority on keratoconus treatment and a top CXL researcher

(Some) Forum Members

• Have internet-enabled devices and post on forums and Facebook groups
• Mostly well-meaning with helpful intent
• Majority do not have medical training nor access to the biomedical literature
• A small proportion actively disagree with some parts of evidence-based medicine
• Advice is mainly derived from anecdote, rather than evidence

1. Am I going to go blind eventually?

The Expert: “Keratoconus is a diagnosis, it isn’t a cause of blindness. With thinning and scarring of the cornea and its high curvature, the condition could significantly affect your vision, and your visual acuity could become very low – but not to the point of blindness.” Forum Members: “I often read that keratoconus can’t cause blindness, but I am living proof that this is not the case. My keratoconus has gotten so bad I have been registered blind, and have had to stop driving and working.” “The majority of people with KC live near normal lives, and there are a number of options these days. A diagnosis of keratoconus isn’t the end of the world!”

2. Is CXL my only treatment option?

The Expert: “If your keratoconus is progressing, but you still have good, useful vision when using your glasses or contact lenses, then CXL is absolutely the best choice.” Forum Members: “CXL may not be suitable depending on the condition of your eye.” “Crosslinking didn’t work for me, the progression of my condition continued.”

3. Should I have a corneal transplant?

The Expert: “If your keratoconus is severe, with a very thin and scarred cornea, and you have low vision even with contact lenses – or it hasn’t been possible to fit contact lenses – then yes, a corneal transplant will be required.” Forum Members: “If there are no lenses available which offer you the required vision you need to live, then it’s graft time if you’re beyond CXL.” “Before my transplant, I was checking different forums, and it seemed as if every single graft was rejected or people had poor vision afterwards, or generally things somehow didn’t work out. The reality is that statistically less than five percent of the grafts fail. But people with successful outcomes are much more likely to want to move on with their life and forget the unpleasant experience as fast as possible, whereas people with problems are naturally inclined to share the problem and ask for advice/ warn other people. For this reason, the negative reports are significantly over-represented.”

4. What is the best way to clean and care for scleral lenses? 

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5. How do I choose the best lenses for me, and how long will they last before needing to be replaced?

The Expert: “The best person to speak to about contact lens care is your optometrist, who can guide you through choosing and caring for your contact lenses.” Forum Members: “It can take a few tries to find the right lenses for you and learn how to use and care for them – don’t be afraid to ask questions and experiment!”

6. Who should I go to for advice – an optometrist, or an ophthalmologist?

The Expert:  “An optometrist is the right person to see for regular check-ups on your status. If there are clear signs that your keratoconus is progressing, your optometrist can let you know that you need to see an ophthalmologist. Your ophthalmologist can confirm what your optometrist has found and also discuss treatments with you, such as CXL.” Forum Members:  “It is ophthalmologists (medical doctors) who can confirm a diagnosis of keratoconus, but optometrists can be just as good at recognizing keratoconus.”

7. How do I monitor my condition?

The Expert:  “The best way to monitor your condition is to attend every checkup and appointment your optometrist recommends. Depending on your age and the progression of your condition, this may be every three months at the beginning, or every six months if your condition has stabilized and you have been fitted with lenses. If your keratoconus has stabilized, this could even decrease in frequency to once a year. Also – don’t forget to stop using hard contact lenses two weeks before you’re scheduled to see your optometrist.” Forum Members: “Different doctors have different views on identifying keratoconus progression. Some doctors’ place little stake in topographies – identifying human error and faulty machines as producing inconsistent readings (the minority view in my experience). Other doctors only focus on corneal thickness (I had a doctor dismiss my question that my Kmax had increased by 2Ds as my corneal thickness was constant). Most doctors that I have met looked at the full package: are the Ks steeper? Is the cornea thinner? Do the patient’s contacts still provide good acuity? As a keratoconus patient, it is difficult to accept that there is not a single method to identify progression. With our opthos, we cannot simply accept that our KC is ‘unchanged’ or ‘worse.’ Is my Kmax higher? Is it possible that my KC has not progressed, but corneal abrasions or warpage due to contacts are the culprits? Is my cornea thinner or actually thicker (likely due to corneal swelling from contact overuse)? We are not doctors, but we need to be educated consumers when interfacing with our care providers.”

8. Can I still use makeup on/near my eyes?

The Expert:  “Yes, you can!” Forum Members: “Don’t use eyeliners on the inside of your eyelids, and choose the products you use carefully.”

9. Is rubbing your eyes linked to developing keratoconus (or making it worse?)

The Expert: “Yes, rubbing your eyes leads to subclinical inflammation of the ocular surface (this is caused by “up-regulation” of several inflammatory mediators of the ocular surface). This inflammation could lead to changes in collagen structure of corneal stroma and progression of your keratoconus.” Forum Members: “There is no actual evidence to show that eye rubbing increases the progression of keratoconus.”

10. How can I deal with keratoconus and dry eyes?

The Expert: “If you have keratoconus, there are preservative-free, lubricating eyedrops available that are suitable for use with contact lenses.” Forum Members: “If you self-prescribe with over-the-counter medications you could make the problem worse.” “It could be a food intolerance.” Frederik Raiskup is a senior consultant at the C.G. Carus University Hospital’s Department of Ophthalmology in Dresden, Germany. He is an Associate Professor of Ophthalmology at both the Technical University in Dresden and Charles University in Prague. His interests include corneal, ocular surface and refractive surgery, with an emphasis on the study of corneal collagen cross-linking (CXL) in ectatic pathologies.