More than 160 keratoconus patients attended the 7th annual KeraClub meeting in Sydney on 4 August.
Almost half of the participants were aged between 40 and 60 years and slightly more women than men attended. Most of the participants were from Australia and came from all states and territories.
The event was jointly hosted by the Save Sight Institute, Sydney Nano at the University of Sydney and Keratoconus Australia.
Ms Michelle Pritchard who has a lived experience with keratoconus chaired the event.
“KeraClub brings us information furthering our knowledge. It helps us support each other,” she said.
Professor Stephanie Watson, head of the corneal unit at Sydney Eye Hospital, head of corneal research group at Save Sight Institute and chair of Australian Vision Research, presented research findings from the Save Sight Keratoconus Registry (SSKR).
The SSKR’s global real-world data is informing clinicians on when to decide to perform corneal cross-linking, which patients are likely to progress, what types of cross-linking should be performed, and, if cross-linking is safe. The SSKR is freely available to clinicians, and they can earn CPD points for using the registry.
The registry is a world-first for keratoconus patients and their clinicians as outcomes from everyday practice are tracked and clinicians are benchmarking their practice. Patients are also able to provide their perspectives on their keratoconus and its treatment via patient-reported questionnaires. The registry had been recognised internationally for informing clinicians globally.
Following Watson’s presentation, Dr Yogambha Ramaswami spoke about how bioengineering and nanotechnology is providing new hope for keratoconus treatment.
Ramaswamy, a senior lecturer in the School of Biomedical Engineering at the University of Sydney, discussed how these advanced technologies may help repair damaged corneal tissue, and increase the quantity and quality of the cells in keratoconic corneas.
Optometrist Mr Mark Koszek’s presentation on getting the most out of contact lenses provided practical information for keratoconus patients.
Koszek is a founding partner and the professional education officer of EyeQ Optometrists which has a network of 47 practices Australia-wide.
Koszek used case studies to discuss contact lens-related challenges and offered tips for a better contact lens wearing experience. He also highlighted the pros and cons of rigid gas permeable (RGP) versus scleral lenses.
Mr Larry Kornhauser, president of the support group Keratoconus Australia, who himself has keratoconus, spoke to attendees about why and how he founded Keratoconus Australia in 2000 and the services being provided by the organisation, all free of cost.
Kornhauser highlighted how patient and clinician perspectives may differ and how peer group support can be instrumental in keratoconus management.
“We may be able to distinguish letters well on a chart, but our vision is constantly compromised by ghosting halos, bright lights, and deteriorates significantly in poor light at night, especially when driving and facing oncoming headlights,” he said.
“Also, our lenses may be comfortable in the optometrist’s rooms, but they can become like razor blades in a dusty or air-conditioned environment, and short tolerable wearing times can make life a series of time management decisions.”
Following Kornhauser’ presentation, Ms Justin McLaughlin shared her patient perspectives and highlighted the importance of corneal tissue donation.
McLaughlin is a qualified solicitor and has spent the last decade in NSW local government as an elected councillor and deputy mayor. She described how, in her opinion, eye rubbing led to her loss of vision as a young teenager, and eventually led to her requiring three corneal grafts.
She urged KeraClub attendees to ask their friends and family to consider the donating corneal tissue, emphasising how corneal transplantation can restore sight and a more normal life to those who need it.
Patient perspectives
Patient perspectives are at the centre of the annual KeraClub meeting, something patients can relate to and clinicians and researchers in the field can learn from.
Dr Himal Kandel, Kornhauser Research Associate, presented the patient-reported quality-of-life research from the Save Sight Keratoconus Registry.
He highlighted why it is important to consider improving quality-of-life and visual functioning in keratoconus patients along with improving visual acuity and halting progression.
Kandel’s research focuses on understanding how patients with keratoconus live and what may limit their lives in order to find which treatments can overcome these limitations.
He discussed a number of advantages of incorporating patient-reported outcomes in routine clinical practice including reducing the disparity in patient and clinician perspectives.
He said that the scientific methods are being used to capture the quality-of-life data at the registry and evaluate them in real-time in routine clinical practice. The findings from the registry have been used globally by clinicians, researchers and policymakers to improve the quality-of-life of keratoconus patients.
Final speaker at the event, Ms Narina Janian from the University of Sydney, engages with alumni and the broader community through a wide range of communications, events and engagement programs.
She spotlighted how keratoconus research at the Save Sight Institute can be supported and why philanthropic funding is vital to continue doing their work.
She highlighted dwindling government support in research, brain drain of talented Australian researchers, a large amount of time being spent by researchers on grant applications and a low success rate due to limited funding available.
The presentations were followed by a panel discussion moderated by Watson.
Several participants said they would like future KeraClub meetings to inform them of the progress on the developments covered at this year’s event.
“Since 2020, we have organised the KeraClub as a webinar. We miss in-person interactions, but this format has allowed us to reach a wide audience of people with keratoconus and their carers and a video will be available for those who missed the event. The KeraClub 2021 YouTube video has had more than 500 watch-hours,” Watson said.
The KeraClub 2022 recordings are available at https://youtu.be/HFJ0V3sgT44
To discuss donating to keratoconus research, contact Narina Janian via email Narina.Janian@sydney.edu.au or phone 0437 533 725.
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