Dr Athena Roufas on the subtleties optometrists can look out for in keratoconus, what makes for a strong referral and important communication techniques with patients.
Keratoconus remains an underdiagnosed and undertreated condition, despite increasing awareness and technological advancements in corneal imaging. Many patients still present with moderate to advanced disease before a diagnosis is made – often after years of visual symptoms that were either misattributed or overlooked. This delay can have significant consequences, including unnecessary vision loss, corneal scarring, and the need for corneal transplantation.
So why is keratoconus still being missed?
Several factors contribute to delayed diagnosis. In early stages, keratoconus can mimic common refractive changes like myopic shifts or increasing astigmatism. Young patients, in particular, may attribute visual distortion to needing to update their glasses. Standard autorefraction may not pick up subtle irregular astigmatism, especially without corroborating topography. In some practices, access to advanced imaging such as corneal tomography is limited, and clinical suspicion may not always be high, especially in the absence of classic signs like Vogt’s striae or Fleischer rings (which tend to occur in more advanced disease).
But perhaps the biggest challenge is that keratoconus can be insidious. Patients don’t always report dramatic changes. Instead, they may simply “feel like their vision is never quite right”.
The role of optometry
Optometrists are on the frontline of primary eyecare and play a critical role in identifying keratoconus early – often before symptoms become visually debilitating. Earlier detection allows for timely intervention, particularly with corneal collagen crosslinking (CXL), which can halt disease progression.
CXL is most effective when performed before significant thinning and scarring occur. The earlier it’s done, the better the visual and structural outcomes for the patient.
Red flags and strategies for earlier detection
– Watch for changes in refractive error, especially increasing astigmatism or asymmetric changes over time.
– Subjective complaints like ghosting, halos, or monocular diplopia may precede clinical signs.
– Refraction instability between visits in adolescents or young adults should raise suspicion.
– Family history of keratoconus or related disorders (e.g., atopy, eye rubbing, Down syndrome) increases risk.
– Use corneal topography or tomography whenever available. Even a basic topography can reveal asymmetric bowtie patterns or inferior steepening.
– High astigmatism (>1.5 D) in teenagers or young adults should prompt further evaluation.
What makes a good referral?
From an ophthalmologist’s perspective, a high-quality referral for suspected keratoconus includes the following:
– Detailed refractive history, including recent changes and best-corrected visual acuity.
– Topography or tomography images if available, along with keratometry readings.
– Family history and clinical symptoms (e.g., eye rubbing, allergy, contact lens intolerance).
– Any prior lens intolerance or difficulty achieving clear vision with spectacles.
We, as ophthalmologists, often confirm the diagnosis using corneal tomography (e.g., Pentacam), epithelial thickness mapping (via anterior segment OCT), and sometimes corneal biomechanics or Belin/Ambrósio Enhanced Ectasia Display. These tools help us detect even subclinical cases or forme fruste keratoconus.
Talking to patients about treatment options
When a patient begins asking, “What can I do about this?”, it’s important to be honest, reassuring, and informative – without overwhelming them.
You might say something like: “Keratoconus is a condition where the cornea becomes thinner and changes shape over time. The good news is that if we catch it early, we can often stop it from getting worse. One of the main treatments is called crosslinking. It’s a short procedure that helps strengthen the cornea and prevent further change.”
Be sensitive to the emotional impact of the diagnosis. Many patients are young and hearing they have a degenerative eye disease can be distressing.
Emphasise early treatment can be highly effective, and that many people with keratoconus go on to live full, visually functional lives – often without the need for surgery.
Optometrists play a vital role in the keratoconus journey, from suspicion and early detection to referral and patient education.
With increasing access to crosslinking and imaging, we now have the tools to halt disease progression in its tracks – if we act early enough. Let’s work together to raise awareness, reduce delays in diagnosis, and give our patients the best possible outcomes.
ABOUT THE AUTHOR: Dr Athena Roufas is an ophthalmologist at Central Sydney Eye Surgeons with a sub-specialised interest in anterior segment surgery. She is also a clinical lecturer at the University of Sydney.
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