Dr Himal Kandel and Professor Stephanie Watson
Save Sight Institute, The University of Sydney
COVID-19 outbreak has impacted almost every aspect of our lives and KeraClub was no exception. This year, the 5th annual community event for people with keratoconus ‘KeraClub 2020’ was organised solely as a webinar. The Save Sight Institute and Keratoconus Australia co-hosted the webinar for patients with keratoconus and their carers. Over 230 people registered for the event which is now available as a recording (Click here for the video recording).
Every challenge comes with an opportunity; with the KeraClub now a webinar we were able to reach a broader audience. There were a great number of inter-state participants (see figure below) and as well as participants from New Zealand, the Netherlands, Nepal, India, Pakistan, Brazil and Mexico. 147 Australian participants provided information on their states, with most from New South Wales and Victoria.
The Save Sight Keratoconus Registry, ‘COVID and contact lenses’, and ‘Eye rubbing in keratoconus’ were presented at the KeraClub. The speakers included Professor Stephanie Watson and Dr Himal Kandel from the Save Sight Institute and optometrists – Allan Ared and Jessica Chi. Musician Michelle (Urquhart) Pritchard who has a lived experience of keratoconus chaired the webinar.
Professor Stephanie Watson, head of the corneal research group at Save Sight Institute, and head of the corneal unit at Sydney Eye Hospital acknowledged the support provided by the Keratoconus Australia and its president Larry Kornhauser to the keratoconus registry. Michelle highlighted the activities carried out by Keratoconus Australia to support keratoconus patients.
Professor Watson presented updates from the Save Sight Keratoconus Registry. The registry tracks outcomes in patients with keratoconus and now has a module for optometrists. The importance of the registry in evaluating the effectiveness and safety of new keratoconus treatment methods such as cross-linking variants was highlighted. Since the launch of Optometry module optometrists and ophthalmologists can share data for seamless patient care.
“New developments in the treatment of keratoconus: I had keratoconus but received grafts in 2005 and 2007 so it is interesting to see what is happening now.” A participant from NSW
Invited talks: COVID, Eye-rubbing, and Keratoconus
Jessica Chi, an optometrist practicing the fitting of specialized contact lenses in Melbourne presented on ‘COVID & contact lenses’. Jessica highlighted that there is no evidence that contact lenses increase the risk of COVID-19 infection, but it is important not to wear contact lenses if a person is sick or in doubt. Attention to hygiene when handling contact lenses was crucial. The information on showering and swimming with contact lenses was particularly of interest to many attendees. Jessica also discussed different contact lens types available for keratoconus patients.
Allan Ared spoke on eye-rubbing, the subject of his PhD research. Allan discussed the potential causes of eye rubbing, trauma from eye rubbing and treatment options to stop rubbing. He highlighted that there are many gaps in knowledge when it comes to eye rubbing and keratoconus. Many participants related eye rubbing behaviour described by Allan to their own experiences.
“For me, I have always felt I do not rub my eyes overly much however I could relate to the how I sleep and the pressure on the eyes – something I have really only noticed in more recent times!!” A 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. The research presented included the implementation of registry, the natural history of keratoconus, and the evaluation of the quality of life impact of keratoconus. The research conducted at the Save Sight Keratoconus Registry aimed to help clinical decision making and improve patient outcomes.
The talks were followed by a Q&A session moderated by Professor Watson. The webinar concluded with the panellists sharing 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 advances improve outcomes that are meaningful to those affected.
The feedback received was very positive. While asking what did you find the most useful, one participant said,
“All of it! Everything was useful and informative. It was brilliant. Each year, I learn so much from everyone. I’m no longer alone.” A participant from NSW
Some participants appreciated a good spread of the topics. Most of them said the webinar was helpful and insightful, full of information. For some, the KeraClub being a webinar made it 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.” A participant from NSW
“A webinar meant people in Western Australia like me could attend” A participant from WA
“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.” A participant from QLD
Suggestions for the next KeraClub in 2021 included featuring future expected developments such as improvements in operations and lenses for patients with keratoconus.
KeraClub has also been a platform where we clinicians and researchers learn from patients as our perspectives may differ. For example, we as clinicians generally provide advice that swimming with contact lenses has a risk of infection. However, one participant said:
“I feel the benefits of swimming (physical and mental health) may sometime 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.” A participant from Victoria
Traditionally at the end of the formal programme of the KeraClub participants and panellists gather socially for an informal conversation on the topics. It is hard to have this connection with during a webinar especially where each individual is unique and has their own concerns. The face-to-face meeting and understanding patients’ perspectives were sadly missed this year.
This year’s KeraClub webinar has encouraged us to continue organising these type of community events for our patients despite living in a strange and challenging situation due to COVID.