The Australian Rheumatology Association is calling on clinicians, patients, and carers to help develop Australia's first national clinical care standards for giant cell arteritis.
Australian rheumatologists are being urged to help define the minimum standard of care for patients with giant cell arteritis as the Australian Rheumatology Association develops the nation’s first clinical care standards.
The ARA has launched a national survey to gather expert feedback on draft quality statements for diagnosis, management, and ongoing monitoring.
In addition to rheumatologists, the ARA’s working group wants to hear from other clinicians such as specialists and general practitioners, as well as patients and carers.
The project aims to reduce variation in care for GCA, a relatively rare but potentially devastating vasculitis that can lead to irreversible vision loss, stroke and other vascular complications if diagnosis and treatment are delayed.
Dr Charlotte Woollard, project coordinator for the ARA’s GCA Clinical Care Standards, said the initiative was a big step forward for patients with GCA, their carers, and clinicians.
“We’re looking at what good care should look like and what every patient should expect as a minimum standard of care if they’re suspected and/or diagnosed with giant cell arteritis,” Dr Woollard told Rheumatology Republic.
Unlike the ARA’s previously developed rheumatoid arthritis clinical care standards, the GCA project addresses a much rarer disease but one with significant consequences if care pathways were delayed or inconsistent.
“It’s a much rarer condition than rheumatoid arthritis, but it has potentially significant implications for patients in terms of morbidity, with threats to vision and strokes and other vascular issues,” Dr Woollard said.
The standards have been developed over the past 12 months by a multidisciplinary working group of 28 healthcare professionals and patients from Australia and New Zealand.
Drawing on existing evidence, clinical guidelines, and the realities of healthcare delivery across different jurisdictions, the group has produced 12 draft quality statements that are now being tested through a wider consultation process.
The survey invites feedback from clinicians, patients, and carers who have experience with GCA to ensure the proposed standards reflect the priorities of those delivering and receiving care.
The draft standards span the full patient journey, from recognition and diagnosis through investigation, treatment, monitoring, and ongoing support.
“The content within the statements is broad ranging,” said Dr Woollard.
“We look at the initial pathways to diagnosis, the investigations, the management, and the support between appointments, really looking at the process from start to finish for these patients and the areas where we can focus on improving care.”
Although GCA is uncommon, Dr Woollard said the priority was ensuring patients moved rapidly through diagnostic and treatment pathways.
“I don’t think it’s necessarily a condition that’s being missed,” she said.
“It’s more that without the right pathways in place and the right access to support and expert care, you can have delays to that initial diagnosis, which can lead to complications.
“We want it to be picked up, diagnosed and treated as quickly as possible to minimise the harms to patients.”
Once the standards are finalised, the project team will develop quality indicators that healthcare services can use to measure their performance against the agreed benchmarks.
Those indicators could also strengthen the case for additional workforce and service investment where gaps in care are identified.
“If we’re not meeting those standards, then it’s an opportunity to go back to the health system and say this should be the minimum level of care that we expect,” Dr Woollard said.
“Can we put more resources in to make sure these patients are supported to receive this level of care?”
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While rheumatologists lead the management of most patients with GCA, Dr Woollard emphasised that the disease requires multidisciplinary care and relies heavily on collaboration with primary care.
“There’s definitely a big component of shared care between the specialist clinics because it is largely rheumatology, but there are lots of other specialists involved in the care as well, like ophthalmology, immunology and general physicians,” she said.
“But the day-to-day management of both the condition and the side complications of treatments relies heavily on that relationship with GPs.”
The consultation survey is open until early August, and participants are asked to review and provide feedback on the 12 draft quality statements, with the survey taking approximately 15 to 30 minutes to complete.
Following the consultation, the working group will meet again to incorporate stakeholder feedback before finalising the standards and developing the accompanying quality indicators.
Dr Woollard said the team hoped to complete much of this work over the next six months and publish the final clinical care standards before the end of the year.
People interested in contributing can access the survey via the QR code below or the web link here.
The project has ethics approval from the Central Adelaide Local Health Network Human Research Ethics Committee, and enquiries can be directed to the GCA Clinical Care Standards Project Team.
