How useful are patient-reported outcomes in dry eye? What are the challenges of diagnosis and subtyping the disease? And what role has topical ciclosporin had since becoming commercially available in Australia? Answers to these questions, plus more, were canvassed at the recent DryEyeClub event.
More than 230 people registered from across Australia and other countries for this year’s annual virtual event on 18 July 2024 hosted by the Save Sight Dry Eye Registry at the Save Sight Institute in Sydney.
The DryEyeClub is opportunity for patients with dry eye and the community to learn about the latest developments in treatment and improving patient outcomes.
Much of the event hinges on the Save Sight Dry Eye Registry that was launched in 2021 and is now being used by 35 clinicians from 27 sites in seven countries globally. It enables them to monitor treatment effectiveness and patient outcomes and can be used collaboratively by both optometrists and ophthalmologists.
Professor Stephanie Watson OAM FARVO, chief investigator of the Save Sight Dry Eye Registry, head of Corneal Research Group at the Save Sight Institute and head of Sydney Eye Hospital’s Corneal Unit among other roles, highlighted the importance of clinical registries in ophthalmology.
She said benefits included being able to gather and analyse treatment and outcomes in everyday clinical practice in ‘real-world’ patients, and the relevance for treatment to be tailored to meet individual patient needs.
According to Prof Watson, this real-world data enables clinicians and researchers to gather longitudinal data on dry eye disease from real-world patients, whereas clinical trials only include very similar patients that are treated in a strict way.
“New research collaborations informed by patient experience such as the Save Sight Dry Eye Registry will provide best evidence and recommendations for dry eye disease diagnosis, management and outcomes monitoring,” she said.
“The registry can also be used for benchmarking, as users can compare their patient treatment and outcomes with their peers and gain CPD accreditation from RANZCO and Optometry Australia.”
Building on this, Dr Himal Kandel, the Kornhauser Research Fellow at the Save Sight Institute, highlighted how the Save Sight Dry Eye Registry could facilitate the real time use of patient reported outcome data in assessing the quality-of-life in affected patients.
He discussed the advantages of using patient-reported outcome data in routine clinical practice while managing dry eye patients. These data, he said, minimised the disparity between clinicians and patients’ perspective and enhanced shared decision making by raising patients’ voice.
“How this works is that patients complete questionnaires on their quality-of-life and these data are stored in the registry,” he said.
“Such patient reported outcome data engage patients in their care journey and enable clinicians and researchers to determine the benefits of treatments to patients and find ways to improve outcomes.”
Understanding the tear film
The University of Melbourne’s Professor Laura Downie is focusing her attention on one of the biggest challenges in dry eye management: diagnosing and subtyping disease.
As head of the Downie Laboratory: Anterior Eye, Clinical Trials and Research Translation Unit, and inaugural director of the Melbourne Cochrane Centre for Evidence-Based Vision Care, she delved into three key research areas:
- Deriving information from the eye as a window into human health using imaging techniques;
- Clinical trials testing new ophthalmic devices and drugs for dry eye management;
- and the translation of research into practice.
Prof Downie highlighted the importance of accurately identifying the subtype of dry eye disease to prescribe patients targeted treatment, to optimise their health and quality-of-life outcomes.
She also provided a summary of new technologies being developed in her research laboratory, to better understand changes that occur in the tear film, and the role of inflammation, in dry eye disease.
She also spoke of the value in improving the clinical diagnosis of dry eye to inform targeted treatment – and for monitoring the efficacy of treatments over the long term.
Obtaining ciclosporin scripts
Topical ciclosporin was the focus of Dr Ngozi Chidi-Egboka’s presentation.
The research associate and clinical trial coordinator for Corneal Research Group at the Save Sight Institute also covered the commercially available products including Ikervis, Cequa, and Restasis, the recommended practical indication for use, and how to access the drug in Australia.
She highlighted evidence based practical recommendation for topical ciclosporin prescription following the Pharmaceutical Benefits Scheme (PBS) subsidy or as a private script.
Then she tied it to the report and graphical tracking tool available in the Save Sight Dry Eye Registry that can improve understanding of the dry eye disease treatment outcomes and any related adverse event.
“Patients would benefit by having clinical visits data from their dry eye disease stored over time so that the course of their disease can be understood, and outcomes of treatment evaluated (Figure 2),” she said.
“Further, clinicians using the registry can benchmark their practice against other clinicians in the registry to enable improvements in care for the benefit of patients.”
Meanwhile, Ms Rachel Love, deputy director of development within the Faculty of Medicine and Health at the University of Sydney, highlighted the lack of funding available to eye researchers in Australia and the impact on their careers.
She discussed how research support from the patients and the community can have an important role in supporting dry eye disease research funding.
Attendee feedback
DryEyeClub also offers valuable insights into the dry eye patient experience.
Participants were asked at the beginning of the webinar to provide information on how dry eye impacts everyday life and wellbeing.
Sixty-nine per cent reported feeling worried and anxious, 65% reported interference with using a computer, and 29% reported interference with sleeping during the night as a result of dry eye.
Post webinar feedback of the event was positive. More than 90% of the attendees said the webinar was “extremely worthwhile, easy to follow and engaging”.
All attendees reported gaining new knowledge about dry eye disease from speaker content and were extremely likely to attend future webinars.
“The attendees felt clear answers were given to their questions and would like to hear more of future research focused on types of dry eye disease,” DryEyeClub organisers said.
“Specific questions were asked on how the attendees can know if their doctor is involved in clinical research using the Save Sight Dry Eye Registry and how to initiate conversation about filling out dry eye questionnaires during their visit to their doctor.”
A recording of the DryEyeClub: Seeing Outcomes webinar is available here.
Clinicians can use the registry without cost to monitor their practice outcomes. To join or know more about the registry, click here.
More reading
Australia dry eye disease update – 2023
Practical evidence for treating moderate- to-severe dry eye with ciclosporin
The Save Sight Institute Dry Eye Registry: Building the ‘big’ picture of dry eye
