Experts from 37 eye hospitals around the globe shared knowledge and expertise about eye care advances, research, and safety at the World Association of Eye Hospitals’ (WAEH) 17th annual meeting in Australia.
Innovation in eye hospitals, quality in eye care, workforce issues, sustainability, philanthropy, and the important topic of patient reported outcome measures (PROMs) were also discussed.
The meeting was hosted by The Royal Victorian Eye and Ear Hospital in Melbourne, Sydney Eye Hospital and Chatswood Private Hospital in Sydney.
One billion people worldwide live with vision loss and 90% is preventable, Victorian Minister for Health Mary-Anne Thomas reminded delegates when she opened the Melbourne conference, held in October. She emphasised the importance of regular checks, prevention, and research, and said the Victorian government had allocated $10 million to build a Centre for Eye Clinical Trials to focus on gene and cell therapies at the Centre for Eye Research Australia (CERA).
The Royal Victorian Eye and Ear Hospital (The Eye and Ear) CEO Brendon Gardner was announced as incoming chair of the WAEH executive board. Throughout the conference, delegates toured the facility, and viewed cuttingedge research at the CERA Vision Expo.
APP TRACES INSTRUMENTS TO PATIENTS
The Eye and Ear nurse unit manager of specialist clinics, Toby Pontifex, detailed a revolutionary new system that traces sterilised reusable instruments back to patients they were used on. The system is necessitated by an upcoming change in a Standards Australia compulsory requirement on reusing medical devices to prevent infection.
“All reusable medical devices used outside theatre must comply with minimum disinfection standards and be traceable to the procedure and patient,” he said.
“This is a massive shift in the way we have managed these instruments. The change covers disinfection of equipment which comes into contact with mucous membranes and includes lenses, prisms, and other instruments that don’t tolerate heating needed for sterilisation.”
He said single use items were expensive and not environmentally friendly so the hospital undertook a lengthy process of developing a smartphone app with the UK’s Tristel Solutions to track disinfection and trace items to the patient.
The hospital also developed special containers to enclose lenses as the current cases could not be disinfected. QR codes enable tracking of each device and container back to procedures and patients.
“We’re still developing and trialling the system and training staff, and plan to extend it to wards and the ED (emergency department), with a compliance date due of December 2024,” Mr Pontifex said.
GENE THERAPY
The Eye and Ear vitreoretinal surgeon and co-lead of CERA’s Retinal Gene Therapy Unit, Dr Tom Edwards, said four patients – two each from Victoria and Western Australia – had undergone Luxturna gene therapy at the hospital for inherited retinal disease (IRD) due to mutations in the RPE65 gene.
A working copy of the gene is delivered via injection under the retina during surgery to replace the faulty gene, granting new function to retinal cells. The hope is that a single treatment will stall vision loss and restore sight.
One young patient had early onset night blindness and severe vision impairment that dramatically improved after therapy, Dr Edwards said. Two other young patients also experienced improvement but another older patient with other conditions did not benefit. Already two more people are potential candidates for next year.
NEW OCULAR MELANOMA TREATMENT
Head of The Eye and Ear’s Ocular Oncology Unit, Dr John McKenzie, said the hospital was collaborating with radiation oncologists and melanoma oncologists at Melbourne’s Peter MacCallum Cancer Centre and Alfred Health on new systemic therapies for ocular melanoma management.
“We’ve only recently been able to treat it with brachytherapy by placing radioactive sources on the sclera over the tumour or specialised stereotactic external beam therapies,” he said. He said the first ocular melanoma patient had undergone gamma knife radiation therapy at the Peter MacCallum as an alternative to stereotactic therapy. This new treatment modality involved less immobilisation, so was easier to tolerate.
A collaboration with Alfred Health was testing the drug Darovasertib, given as neoadjuvant therapy before enucleation. A study in 10 high-risk Australian patients is measuring tumour response to treatment and correlating this with patient survival. Initial results looked promising, Dr McKenzie said.
A Melbourne man with a large tumour in an only eye was the world’s first patient for whom the medication was a gamechanger. The man was blind in one eye due to a stroke and ineligible for the trial. Treatment other than by enucleation was not possible due to the lesion size but the 70-year-old had a dramatic response to Darovasertib in an off-trial treatment.
“It converted intervention from enucleation to globe-conserving plaque brachytherapy by shrinking the tumour, enabling smaller radiation doses and preserving vision,” Dr McKenzie said. “This is a paradigm shift.”
He said The Eye and Ear was collaborating on a roadmap for ocular melanoma treatment, collecting data and outcomes. Western and Central Melbourne Integrated Cancer Service helped develop the pathway, which will be mapped by data points on a Save Sight Institute Fight Tumour Blindness! Registry. “We hope centres locally and internationally, such as Moorfields (Eye Hospital, in London), will use this to benchmark and compare real world outcomes,” he said.
ALZHEIMER’S CAMERA GOING GLOBAL CERA’s
Managing Director and University of Melbourne Head of Ophthalmology, Professor Keith Martin, said CERA and The Eye and Ear were regularly delivering gene therapies to patients (seven eyes in four people with IRD in the past year), while nine macular degeneration patients were in a Phase 2 gene therapy study. Another gene therapy, which protects vision in experimental models of glaucoma, was progressing towards human clinical trials.
Prof Martin said CERA-developed imaging to improve diagnosis of eye disease and brain disease such as Alzheimer’s was going global.
“It can detect Alzheimer’s disease markers in the eye earlier than cognitive decline in the brain,” he said. “(US philanthropist) Bill Gates has funded development of the camera prototype, and it has rolled out to multiple centres worldwide.”
The hyperspectral camera may also be able to identify which macular degeneration patients are more likely to progress and which glaucoma patients will benefit from different treatments.
BIONIC VISION ENHANCEMENT
Head of The Eye and Ear’s Vitreoretinal Unit and CERA’s Bionic Eye Project, Associate Professor Penny Allen, said new vision processing algorithms for bionic eye recipients now help with proximity to objects and reduce social isolation by aiding social interaction with face detection. Surveys of IRD registry patients found they wanted to navigate independently and solve day-to-day problems, while other priorities were face detection and assessing depth of objects.
“They can swap between the algorithms themselves to determine if a chair is empty or to one that recognises (that a shape is) a face,” she said. “We’re continuing to test and the next stage in facial recognition is to help them recognise who it is.”
In patients with retinitis pigmentosa, the implant uses electrical stimulation of residual neuronal components of the retina to generate artificial visual impulses or phosphenes. An initial three patients gained flashes of light from the device, and two could navigate. After 10 years it is still safe and stable.
A second-generation device to widen the field was implanted in four more patients, and included glasses, a camera, and pack for use at home. Five years later it is also safe and stable.
UPSKILLING AGED CARE NURSES
A Moorfields Eye Hospital program, which is the first of its kind, is upskilling community nurses and healthcare support workers from care and residential homes for older people on the importance of eye care. It is training them to perform basic eye assessment and procedures such as checking vision, leading, guiding and supporting people with sight impairment, and correct eye drop instillation technique.
Nurse educator Tendai Gwenhure said it highlighted the importance of assessing vision in a falls risk assessment and ongoing eye care for those with long term conditions or after eye surgery and resulted from glaucoma patients presenting to the eye clinic with raised intraocular pressure after hospital admission due to drops not being administered properly or at all.
“We realised home care staff weren’t trained to properly instil eye drops or assess vision as part of a falls risk assessment,” she said.
The course covered eye anatomy and physiology, common eye conditions and medications, and practical skills including identifying and using different cane and sight impairment simulation spectacles, plus how to do a bedside vision check and detect emergency eye issues early.
Post-course nurses were more confident in vision checks, eye drop instillation, and explaining to residents the importance of glaucoma medication. They were more likely to call an optometrist if needed.
KERATOCONUS CROSS-LINKING BY NURSES
Advanced Nurse Practitioner Diana Malata, from the Royal Victoria Eye and Ear Hospital in Dublin, spoke about nurses performing corneal collagen cross-linking (CXL) on keratoconus patients. She initiated the sole nurse-led CXL service in Ireland in 2016 after adapting protocols from a similar pioneering service at Moorfields Eye Hospital.
She reported success in using telemedicine for keratoconus monitoring post procedure, which reduced referral and waiting times during COVID.
“In November we will launch a booking app to streamline keratoconus screening, the first of its kind in Ireland/Europe,” she said. “Opticians (optometrists) can book suspected keratoconus patients for topography at the hospital using the app.”
Ms Malata said a review showed the nurseled Irish service was safe and acceptable to patients, frees time for ophthalmologists to perform other duties, and reduces waiting lists.
ED DIRECTION IS VIRTUAL
The future eye care pathway for emergency departments (EDs) is digital (virtual), said Moorfields Eye Hospital CEO Dr Martin Kuper. He said coming into hospital should not be the standard action, with only 20% of patients needing to physically attend the ED.
“Virtual consultations can cover 50% of urgent eye issues: Patients logon via our website and see a virtual receptionist first, then an experienced doctor or nurse within about 10 minutes,” he said. “Only 20% need to come in and be seen urgently that day. Another 30% come in for outpatient review in the next week or two. The other 50% can stay home or see their optometrist later.”
Dr Kuper said more than 26,000 patients had used Moorfields’ virtual ED; patients were happy, and outcomes comparable to in-person care.
For routine elective patients without red flag symptoms, Moorfields showed during COVID they could safely be seen first in a diagnostic monitoring hub where they have tests. These are later reviewed by doctors who decide on a face-to-face medical review, video consult, optometrist referral, or further monitoring later for stable patients. Each hub sees 15,000 patients a year and 40% can be brought back for monitoring without needing to see a doctor.
MEASURE PROMS NOT JUST VA
Rotterdam Eye Hospital’s Jarinne Woudstrade Jong spoke about the importance of measuring quality of life (QoL) using validated questionnaires called patient reported outcome measures (PROMs), saying patients are ‘more than two eyes on a stick’ and QoL, not just visual acuity, should be an outcome.
Under PROMs, patients rate how they feel, perform activities such as reading small print or driving, and experience daily life. She asked 65 people with retinal detachment how it influenced their life and found doctors’ questionnaires only asked one-third of what was important to patients.
“OCT (optical coherence tomography) might show no difference but a patient might notice a difference in daily living,” she said. “It’s important the patient experience is validated and questions are relevant, so involve patients when making the questionnaire.”
Ms Woudstra-de Jong and collaborators, including University of New South Wales optometry Professor Konrad Pesudovs, are developing new PROMs questionnaires for retinal detachment and other vitreoretinal conditions, and will test them in practice.
PROMS IMPROVE QUALITY OF CARE
Chairman/co-founder of the International Consortium for Health Outcomes (ICHOM), a nonprofit to create global standards for measuring health outcomes, Associate Professor Dr Stefan Larsson, said the World Health Organization and the Organisation for Economic Co-operation and Development estimated 20–40% of healthcare spend was wasted on activities that didn’t help the patient, and other research showed 50% of healthcare actions lacked evidence.
A fellow on the World Economic Forum Health and Healthcare team, he said the answer to this and the health workforce crisis, including staff burnout, was to put the patient and delivery of outcomes that matter to them at the forefront of healthcare management by measuring and sharing those outcomes.
Prof Larsson reviewed the global movement of those trying to put the patient at the centre, including several Australian centres, resulting in co-authoring The Patient Priority. Contrary to traditional approaches to health system reform that emphasise cost containment and process efficiency, this value-based healthcare shifts the focus to continuous improvement in outcomes that matter to patients and total costs for care provided, rather than prices for single activities.
“Instead of fee for service and getting paid more if you do more, a system that puts patients at the centre pays more if outcomes measured show it’s done right; incentives for value not volume,” he said. “Instead of hospitals being positioned as production units, they should be managed as units for delivering better health.”
ICHOM has developed metrics that caregivers can use for 46 diseases covering nearly 60% of the global disease burden. Comparison of German hospitals treating prostate cancer patients with prostatectomy found patients at hospitals who used PROMS suffered significantly reduced incontinence rates than those treated at hospitals that don’t (6% vs 43%) and lower severe erectile dysfunction rates (35% vs 75%).
Similarly, a 2012 study showed endophthalmitis risk was lower in Swedish cataract patients than Australia and the rest of the world due to continuous measurement of patient outcomes. “Clinicians are required to measure and report a lot today, but much is a waste of time and frustrating for doctors. I believe we can reduce what we measure while ensuring outcomes that matter to patients are reported by all to secure the right focus,” Prof Larsson said.
STANDARDISED OUTCOME SETS
The Eye and Ear corneal specialist Dr Elsie Chan said there was no standardised way to collect data in clinical practice; doctors and other eye health professionals document different parameters for the same eye condition, making it difficult to benchmark their work with others. Patient reported outcomes were also seldom collected.
“We’ve done cross-linking for keratoconus for years but not collected PROMs, yet, from a patient’s perspective, what may be more important is whether they can see the board/ screens at school, whether they play sports and can see the ball, and whether they can drive and socialise with their friends,” Dr Chan said.
In 2019 she began the first WAEH project to develop standardised outcome measures for treatment, clinical outcomes, and PROMs in keratoconus. A list, developed after a literature review, patient focus groups, and international expert panel review, includes outcomes about visual function, corneal measurements, treatments, treatment complications, patient-reported symptoms, wellbeing, and quality of life.
The keratoconus Medical Outcome Indicator Set, including what values to report for each outcome measure in electronic medical record systems, will be available to hospitals and clinics. Others will be developed for other eye disorders including retinal detachment and glaucoma.
Helen Carter is a journalist with extensive experience writing about healthcare.