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HomemieventsKeraClub 2022 Latest Developments in Keratoconus

KeraClub 2022 Latest Developments in Keratoconus

Over 160 people came together from across Australia and beyond, to attend this year’s annual KeraClub, hosted by the Save Sight Institute and Sydney Nano, The University of Sydney and Keratoconus Australia. The virtual event, which was held on 4 August, was chaired by Michelle Pritchard who has a lived experience with keratoconus and said, “KeraClub brings us information furthering our knowledge. It helps us support each other”

Evidencing its strong value in the community, the seventh annual KeraClub meeting attracted participants of all ages, with around half in the 40 to 60-year-old age group (Figure 1). Slightly more women (52.8%) than men attended this year. Most of the participants were from Australia and came from all states and territories (Figure 2).

Professor Stephanie Watson OAM, a corneal specialist known for her ground-breaking research in corneal therapies, delivered the first talk to the diverse audience comprising people living with keratoconus, their family, and health care professionals. As head of the Corneal Unit at Sydney Eye Hospital, Head of Corneal Research Group at Save Sight Institute and Chair of Australian Vision Research, Prof Watson was well positioned to explain the ground-breaking research findings from the Save Sight Keratoconus Registry (SSKR) that are informing clinical care.1-4 She explained that the Registry is a world first for keratoconus patients and their clinicians, that is enabling outcomes from everyday practice to be tracked and clinicians to benchmark their practice. The Registry’s global real-world data helps clinicians to decide when 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. Patients are also able to provide their perspectives on their keratoconus and its treatment via patientreported questionnaires.

Available free of cost, the Registry provides incentives to clinicians, such as CPD points for contributing data. It has been recognised internationally as a valuable source of clinical information.

Prof Watson’s talk was followed by a presentation from Dr Yogambha Ramaswami on bioengineering and nanotechnology for keratoconus, which provide new hopes for treatment. Dr Ramaswamy is a senior lecturer in the School of Biomedical Engineering at The University of Sydney. She discussed how these advanced technologies may help repair damaged corneal tissue and increase the quantity and quality of the cells in keratoconic corneas. Her talk was well received with one participant commenting, “That bioengineering research was wonderful to hear about. The wonders of modern science. Bring it on… most uplifting”.

Optometrist Mark Koszek’s talk on getting the most out of contact lenses for keratoconus provided valuable practical information for patients in the audience. Mr Koszek is a founding partner and the Professional Education Officer of EyeQ Optometrists, which has a network of 47 practices Australia-wide. Using case studies, he discussed contact lens-related challenges and offered six tips for a better contact lens wearing experience. He also highlighted the pros and cons of rigid gas permeable (RGP) versus scleral lenses. Importantly, Mr Koszek urged keratoconus patients having difficulty with their contact lenses to see their optometrist for a solution.

ACKNOWLEDGING CONTRIBUTION

Larry Kornhauser OAM provided a highly informative overview of the support group, Keratoconus Australia. Mr Kornhauser, who is President of Keratoconus Australia, lives with keratoconus and has been a role model for keratoconus patients by not letting his condition dictate what is possible. His inspirational talk included why and how he founded Keratoconus Australia in 2000, and the services that have been provided by the organisation since then, all free of cost. He opined that with a good contact lens fitter and a corneal surgeon at their side, keratoconus patients can get through the most difficult times.

Figure 2. Distribution of the Australian participants in percentage.

Mr Kornhauser highlighted how patient and clinician perspectives may differ and how peer group support can be instrumental in keratoconus management. He said, “We may be able to distinguish letters well on a chart, but our vision is constantly compromised by ghosting halos and bright lights. It deteriorates significantly in poor light at night, especially when driving and facing oncoming headlights. Also, our lenses may be comfortable in the optometrist rooms, but they can become like razor blades in a dusty or air-conditioned environment – short tolerable wearing times can make life a series of time management decisions”.

Professor Watson thanked Mr Kornhauser for his dedication to supporting patients with keratoconus, many of whom have benefitted greatly from his work. She noted that as President of Keratoconus Australia, he has worked tirelessly, while also supporting KeraClub since its inception and the Save Sight Keratoconus Registry. Prof Watson presented Mr Kornhauser with a token of great appreciation.

PATIENT PERSPECTIVES

Justine McLaughlin shared her patient perspectives and highlighted the importance of corneal tissue donation. Ms McLaughlin qualified as a 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 to her requiring three corneal grafts. She urged everyone to ask their friends and family to consider the donation of corneal tissue, emphasising how corneal transplantation can restore sight and a more normal life to those who need it.

Patient perspectives have always been at the centre of KeraClub meetings – providing information that patients can relate to and clinicians and researchers in the field can learn from. One KeraClub 2022 attendee confirmed the value of this information in their feedback commenting, “I enjoyed listening to a broad spectrum of people about the impact (keratoconus) has on them, and the life experiences they have had with the condition”.

Dr Himal Kandel, Kornhauser Research Associate, presented findings from patientreported quality of life research at the Save Sight Keratoconus Registry.5-9 This research focuses on understanding how patients with keratoconus live and what may limit their lives, to find which treatments can overcome these limitations. Dr Kandel highlighted why it is important to consider improving quality of life and visual functioning in keratoconus patients, while also working to improve visual acuity and halting progression. He discussed several advantages of incorporating patient-reported outcomes in routine clinical practice, including reducing the disparity in patient- and clinician- perspectives. Dr Kandel described the scientific methods being used to capture quality-of-life data at the Registry and evaluate them in real-time, in routine clinical practice. Findings from the Registry have been used globally by clinicians, researchers, and policymakers to improve quality of life for keratoconus patients.

CHALLENGES IN RESEARCH

The final talk for KeraClub 2022 was delivered by Narina Janian. Ms Janian works in the Advancement Portfolio at The University of Sydney, where she engages with alumni and the broader community through a wide range of communications, events and 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, the brain drain of talented Australian researchers, and the large amount of time being spent by researchers on grant applications that have a low success rate due to limited available funding. To discuss donations to keratoconus research, Ms Janian can be contacted on (AUS) 0437 533 725 or at [email protected].

The talks were followed by a panel discussion moderated by Professor Watson, during which several attendees said they would like to be informed of developments covered during the meeting at future KeraClub events.

Acknowledging KeraClub’s long-standing success in supporting a growing audience, Prof Watson said, “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. A video will be available for those who missed the event. The KeraClub 2021 YouTube video had more than 500 watchhours,” said Professor Watson.”

The KeraClub 2022 recordings are available at https://youtu.be/HFJ0V3sgT44

Professor Stephanie Watson OAM is head of the Corneal Unit at Sydney Eye Hospital, Head of Corneal Research Group at Save Sight Institute, The University of Sydney, and Chair of Australian Vision Research. 

Dr Himal Kandel is a Kornhauser Research Associate at Save Sight Institute, The University of Sydney. 

Larry Kornhauser OAM is President of Keratoconus Australia. 

Hero image: Figure 1. Age distribution of the KeraClub 2022 participants.

References 

  1. Ferdi AC, Nguyen V, Gore DM, Allan BD, Rozema JJ, Watson SL. Keratoconus natural progression: a systematic review and meta-analysis of 11 529 eyes. Ophthalmology. 2019;126(7):935-945. 
  2. Kandel H, Nguyen V, Ferdi A, et al. Comparative efficacy and safety of standard versus accelerated corneal crosslinking for keratoconus: 1-year outcomes from the Save Sight Keratoconus Registry study. Cornea. 2021;40:1581-1589. 
  3. Ferdi A, Nguyen V, Kandel H, et al. Predictors of progression in untreated keratoconus: a Save Sight Keratoconus Registry study. Br J Ophthalmol. 2022; 106(9):1206-1211 
  4. Benito-Pascual B, Kandel H, Abbondanza M, Sullivan L, Watson S. Efficacy and safety of standard corneal cross-linking procedures performed with short vs standard riboflavin induction: a Save Sight Keratoconus Registry study. Cornea. 2022 [DOI: 10.1097/ ICO.0000000000003058] 
  5. Kandel H, Nguyen V, Piermarocchi S, et al. Quality of life impact of eye diseases: a Save Sight Registries study. Clin Exp Ophthalmol. 2022;50(4):386-397. 
  6. Kandel H, Pesudovs K, Ferdi A, et al. Psychometric properties of the Keratoconus Outcomes Research Questionnaire (KORQ): a Save Sight Keratoconus Registry study. Cornea. 2020;39:303-310. 
  7. Kandel H, Pesudovs K, Watson S. Measurement of quality-of-life in keratoconus. Cornea. 2020;39(3):386-393. 
  8. Kandel H, Pesudovs K, Nguyen V, et al. Patientreported outcomes in keratoconus: a Save Sight Keratoconus Registry study. Cornea. 2022:[ DOI: 10.1097/ ICO.0000000000003119]. 
  9. Kandel H, Chen JY, Sahebjada S, et al. Cross-linking improves the quality of life of people with keratoconus: A cross-sectional and longitudinal study from the Save Sight Keratoconus Registry. Cornea. 2022: [Accepted 20/09/2022]