The COVID-19 outbreak has impacted almost every aspect of our lives and KeraClub was no exception. This year, the fifth annual community event for people with keratoconus, ‘KeraClub 2020’, was organised solely as a webinar.
Co-hosted by Save Sight Institute and Keratoconus Australia, KeraClub 2020 attracted over 230 participants, including patients with keratoconus and their carers from inter-state as well as participants from New Zealand, the Netherlands, Nepal, India, Pakistan, Brazil and Mexico. There were 147 Australian participants, the majority from New South Wales and Victoria.
With every challenge comes an opportunity, and in the case of KeraClub 2020, its presentation as a webinar enabled KeraClub to reach a broader audience.
This year’s event included presentations on The Save Sight Keratoconus Registry, ‘COVID and contact lenses’, and ‘Eye rubbing in keratoconus’ by Professor Stephanie Watson and Dr Himal Kandel from the Save Sight Institute, The University of Sydney and optometrists Allan Ared and Jessica Chi. Musician Michelle (Urquhart) Pritchard, who has a lived experience of keratoconus, chaired the webinar and took the opportunity to highlight activities carried out by Keratoconus Australia to support keratoconus patients.
Save Sight Keratoconus Registry
Professor Watson, head of the corneal research group at Save Sight Institute, and head of the corneal unit at Sydney Eye Hospital, presented updates from the Save Sight Keratoconus Registry, which tracks outcomes in patients with keratoconus. She highlighted the importance of the registry in evaluating the effectiveness and safety of new keratoconus treatment methods, such as cross-linking variants and advised that the Registry now has a module for optometrists Since the launch of this module, optometrists and ophthalmologists have been able to share data for seamless patient care.
Professor Watson, acknowledged the support provided by Keratoconus Australia and its president Larry Kornhauser to the keratoconus registry.
Invited Talks: COVID-19, Eye-rubbing, and Keratoconus
Melbourne-based optometrist Jessica Chi, who practises fitting specialised contact lenses, presented on ‘COVID and contact lenses’. Ms Chi reminded the audience that there is no evidence to support that contact lenses increase the risk of COVID-19 infection. However, she said it is important not to wear contact lenses if a person is sick or in doubt, and good hygiene when handling contact lenses is crucial. Information on showering and swimming with contact lenses was of particular interest to many attendees. Ms Chi also discussed different contact lens types available for keratoconus patients.
Allan Ared spoke on eye-rubbing, the subject of his PhD research. Mr Ared discussed the potential causes of eye rubbing, trauma from eye rubbing, and treatment options to stop rubbing. He highlighted the many gaps in knowledge when it comes to eye rubbing and keratoconus. Many participants related Mr Ared’s discussion on eye rubbing behaviour to their own experiences.
“For me, I have always felt I do not rub my eyes overly much, however, I could relate to how I sleep and the pressure on the eyes – something I have really only noticed in more recent times,” said one participant from Tasmania.
Dr Himal Kandel, the Kornhauser Research Associate at Save Sight Institute, presented interesting data from the Save Sight Keratoconus Registry. Dr Kandel shared key messages from the registry team’s six recently published research papers. This included the implementation of the registry, the natural history of keratoconus, and the evaluation of the impact of keratoconus on quality of life. The research conducted at the Save Sight Keratoconus Registry aims to help clinical decision making and improve patient outcomes.
Presentations were followed by a Q&A session moderated by Professor Watson, and then panelists shared their perspectives on the future of keratoconus management. New contact lens types, cross-linking research at the registry, and quality-of-life research were thought to be some of the important impactful research and innovation areas. Professor Watson stressed that the patient and their needs must remain central to research efforts so that outcomes are meaningful to those affected.
Feedback from KeraClub 2020 was very positive, with most saying the webinar was helpful, insightful, and full of information. One participant from New South Wales proclaimed that “everything (about the event) was useful and informative. It was brilliant. Each year I learn so much from everyone. I’m no longer alone”.
Participants acknowledged the broad spread of topics and said that when presented as a webinar, KeraClub was easier to attend.
“I found it all interesting in different ways, I liked that there was a mix of practical information that users could apply combined with some interesting science and foundation information,” said a participant from New South Wales.
A participant from Western Australia said, “A webinar meant people in Western Australia like me could attend.”
“It was fabulous as I live in Brisbane and have never been able to ‘attend’ a meeting before. Please may this type of meeting be available in the future,” said a participant from Queensland.
Their suggestions for KeraClub 2021 included information on expected future developments, such as improvements in operations and lenses for patients with keratoconus.
As well as serving keratoconus patients and their carers, KeraClub has been a valuable platform for clinicians and researchers to learn from patients, whose perspectives may differ. For example, as clinicians we generally provide advice that swimming with contact lenses has a risk of infection. However, one Victorian participant said, “I feel the benefits of swimming (physical and mental health) may sometimes outweigh the risk from the incidence of problems. I have a severe back injury and swimming is one of the few activities I can engage in pain-free.”
Traditionally, participants and panelists gather for informal conversation at the end of KeraClub’s formal programme. The opportunity to do so was sadly missed this year however the success of the event has encouraged us to continue organising these types of community events for our patients, despite living in a strange and challenging COVID-19 environment.
To view the recorded webinar visit here