Keratoconus in children: what a European expert panel recommends, and why monitoring starts with your optometrist

If your child or teenager has just been told they have keratoconus, the first questions are usually practical ones. How often should they be checked? When is cross-linking needed? Who should be looking after them? A new European consensus statement, published in Ophthalmology and Therapy in 2026, tries to answer those questions for children specifically. We have read the full text. Here is what the panel recommends, how they reached agreement, and where the document needs care.

What kind of paper this is

This is not a trial. No new patients were studied. It is a consensus statement: a structured way of recording what a group of experienced clinicians agree on after reviewing the published research. That makes it expert opinion informed by evidence: useful, but weaker than randomised trials.

The work was done through the European Reference Network for Rare Eye Diseases (ERN-EYE). The executive group was made up of 14 experts, described as including paediatric ophthalmologists and ophthalmological surgeons, each with at least 10 years of experience in paediatric keratoconus. They came from eight countries: Czech Republic, Estonia, France, Germany, Italy, Lithuania, Slovenia and Spain.

They used what the paper calls a modified Delphi process in three rounds: a structured literature search, collaborative drafting of statements, then anonymous online voting. Each expert scored every statement at 100 (complete agreement), 75, 50, 25 or 0 (complete disagreement). A statement was accepted if its average score was strictly greater than 75. In practice, every statement was accepted after the first round of voting. The score for each individual statement sits in a supplementary file we did not have, so we cannot say how strong agreement was on any single point.

What the panel recommends

Who should have a corneal scan

The panel recommends corneal tomography (a Scheimpflug camera scan) for children with specific risk factors: astigmatism of more than 2 dioptres, short-sightedness or astigmatism that keeps increasing, allergies, or a first-degree relative with keratoconus. Where there is a family history, they suggest early examinations at around 8 to 13 years of age. We have written more about this in our post on corneal maps for children with a family history.

How often to monitor

The suggested schedule after diagnosis depends on age:

• Between 3 and 12 years: every 3 months
• Between 12 and 20 years: every 4 months, which could be extended to 6 months or a year if there are no signs of progression
• Between 20 and 40 years: every 6 months, which could be extended to 1 year if there are no signs of progression
• Over 40 years: every year

Each visit should include vision testing, a slit lamp examination and corneal tomography or an anterior-segment OCT scan. Intervals can be lengthened for very mild or stable cases.

How progression is defined

Following the second Global Consensus on Keratoconus, the paper defines progression as a consistent change in at least two of these: the front curvature of the cornea, the back curvature, the thinnest corneal thickness, and worsening vision. This is why a single scan cannot answer the question: progression is shown by comparing repeated, good-quality maps over time.

Cross-linking

The panel recommends epithelium-off corneal cross-linking as the first treatment option in paediatric keratoconus, because the condition tends to move faster in children. The study they cite for this found progression in 88% of children within 1 year of diagnosis. They advise that epithelium-on cross-linking should be avoided in children if possible, citing one small series in which nearly 50% of paediatric eyes did not respond.

From the research they reviewed, the panel reports that the most common finding after cross-linking is mild temporary haze that typically resolves within 3 to 6 months, that lasting haze with scarring occurs in fewer than 3% of cases, and that the reported risk of further progression after cross-linking in children ranges between 4% and 35%. Our earlier post on cross-linking results in children, teenagers and adults covers that evidence in more detail.

Rubbing, allergy and seeing well

Avoiding eye rubbing and treating allergic eye disease promptly are described as key parts of care, although the panel is clear these steps should not replace cross-linking when the cornea is progressing. Our sibling post on eye rubbing, pressing and massaging looks at that question. For vision, the statement says contact lenses can improve sight in both children and adults and are usually the first option when glasses are not working well.

What the studies can't tell us

• Consensus is opinion. Agreement among experts is not the same as proof. The authors themselves note that randomised controlled trials of cross-linking are still lacking, and that much of the evidence on repeat treatment comes from case reports and small series.
• A small, surgical panel. Fourteen ophthalmology experts from eight European countries voted. No optometrists, patients or parents are described as taking part.
• Everything passed first time. With every statement accepted in the first vote, it is hard to see where views differed.
• The text is not fully consistent. The monitoring table gives age-based intervals out to 40 years and beyond, while the closing list says at least every 3 to 4 months for a couple of years, then once a year until age 18. On cross-linking, one passage recommends it at diagnosis even without progression, another says it does not seem necessary in every child with possible keratoconus, and a third says it should be discussed as soon as there is evidence of progression.
• A European setting. Health systems differ. The paper says nothing about New Zealand, and its intervals are suggestions to be tailored.
• Funding and interests. The work was funded by the EU Commission through ERN-EYE grants. One author reported consulting for pharmaceutical companies; the others declared nothing.

What this means for you in Hamilton

In New Zealand, cross-linking is performed by an ophthalmologist, but the front door is a keratoconus-focused optometrist. That is who diagnoses the condition, builds the record of sequential corneal maps that shows whether the cornea is actually changing, refers to the ophthalmologist at the right moment, and fits specialty lenses such as scleral lenses when glasses are no longer enough.

The messages for families are simple. Children are checked more often than adults, progression is judged from repeated scans, and rubbing and allergy matter. The timing of cross-linking is decided with your optometrist and ophthalmologist, based on your child's own maps.

The optometrist team at Rose Optometry in Hamilton provides keratoconus care, including corneal mapping, monitoring, referral and specialty lens fitting. You can book a keratoconus assessment. The optometrists at Rose Optometry are Anjali Hira, Emilie Lawson, Jacqueline Rowe, Jagrut Lallu, Jason Shen, Jessica Wood and Stella Wong, and keratoconus care is part of their clinical practice.

Reference

• Buzzonetti L, Mazzotta C, Iester M, Pauklin M, Boehringer D, Zemaitiene R, Vannucchi M, Cocho L, Studeny P, Gavard A, Monterosso C, Bremond-Gignac D, Tekavcic Pompe M, Bourges JL, Liskova P. Paediatric Keratoconus: An ERN-EYE Clinical Consensus Statement on Diagnosis, Treatment and Follow-Up Care. Ophthalmology and Therapy. 2026;15(9):2825-2861. PMID 42538519. https://doi.org/10.1007/s40123-026-01463-5