Feature, Soapbox

The role we all have to play in keratoconus

Keratoconus is common. In fact, it’s so prevalent that I see it most days I’m in the clinic.

The typically young patient will be struggling with their vision at a time when they are facing major life hurdles. COVID-19 has exacerbated these difficulties whilst they work towards finishing school or university or start their career. The move to spending more time online, face masks which fog glasses and obscure lip movements and facial expressions, have all had an impact.

“Will my keratoconus get worse? What will happen if I have cross-linking? And what will I be able to do?”. These are common questions for people with keratoconus or their carers. They are seeking answers that are relevant to them and want to understand the ongoing impact of keratoconus and the benefit of any treatments.

Searching through the literature we tried to find the answers.

Looking at 11,594 eyes – the largest systematic review and meta-analysis of keratoconus progression ever conducted, our results, published in the journal Ophthalmology, showed younger patients and those with a K-max steeper than 55 D have a significantly greater risk of progression.

We recommended closer follow-up and a lower threshold for cross-linking in patients younger than 17 years and steeper than 55 D K-max. But this data included studies prior to modern topography. Everyday people with keratoconus consult eyecare professionals.

The Save Sight Keratoconus Registry (SSKR) was established more than six years ago to use the information from everyday practice to understand and improve outcomes in keratoconus. Global data on over 6,000 eyes and close to 30,000 visits, with modern topography, are providing answers to inform practice.

The KORQ – Keratoconus Outcomes Research Questionnaire developed by Professor Konrad Pesudovs – is used by SSKR to collect patients’ views on their functioning and treatment. Improving the vision in the better seeing eye helps with their day-to-day activities. But clinicians should be aware vision in their worst eye is strongly related to emotional wellbeing; so they should consider what they can also do for that eye.

Our registry data has identified clinically significant haze after cross-linking is more common in patients who are younger and have steeper keratometry. They should be monitored more closely post-operatively.

Most patients though can be reassured as, in the long term, our data shows few late adverse events from cross-linking and for most there are small improvements in vision and a stable corneal shape. These improvements are similar in both conventional (long) or accelerated crosslinking techniques. Long-term follow up is still needed as some fail to stabilise.

Optometrists have a life-long role in managing patients with keratoconus; spectacles and contact lenses remain the mainstay of visual rehabilitation. Following procedures like cross-linking, many return to their optometrist for follow up.

The new optometry module of the registry led by Associate Professor Laura Downie now allows seamless outcomes data collection between optometry and ophthalmology.

Patient data can be shared and outcomes tracked, benchmarked and displayed to patients. A team of optometric experts will guide the registry via its steering committee. This will allow the profession to work together to use everyday practice data to benefit the care of patients.

As ophthalmologists and optometrists track outcomes they can benchmark their practice and this has been shown to improve outcomes. But patients want to know more and have concerns they wish to share. Now in its fifth year, the Keraclub, a support group for patients and their carers with keratoconus, provides the opportunity for patients to learn and share from ophthalmology and optometry. The event is supported by Keratoconus Australia, led by President Mr Larry Kornhauser.

This year at the Keraclub, Ms Michelle Pritchard, violist and violinist, moderated presentations from optometrist Ms Jessica Chi on COVID-19 and contact lenses, Mr Allan Ared on eye rubbing, with Dr Himal Kandel and myself providing updates on the SSKR. The session was a success. One attendee commented “I learnt more about keratoconus in that one hour than I have in almost 30 years with the condition.”

During COVID, it is more important than ever to work together to track outcomes. The SSKR has found fewer patients with keratoconus attending care. With quality of life impacted, we need to know who is receiving care and its outcomes; this will benefit patients and the profession.

ABOUT THE AUTHOR:
Name: Professor Stephanie Watson
Qualifications: Bsc(Med), MBBS, PhD, FRANZCO
Business: Corneal specialist and academic
Position: Professor, Head of Corneal Research Group, Head of Corneal Unit and Chair, ORIA
Location: The University of Sydney, Save Sight Institute, Discipline of Ophthalmology, Sydney Medical School and Sydney Eye Hospital, Prince of Wales Hospital, and Sydney Children’s Hospital
Years in the profession: 20