Experts warn juvenile arthritis is still being missed or dismissed, with months-long delays in diagnosis leading to preventable disability and chronic pain.
Australian children with juvenile idiopathic arthritis are waiting an average of 10 months for diagnosis, exposing them to preventable joint damage, vision loss and lifelong disability, say as peak bodies.
A coalition led by the Juvenile Arthritis Foundation Australia (JAFA), the Australian Paediatric Rheumatology Group and more than 20 national health organisations has launched a renewed push during Juvenile Arthritis Week (16-22 March 2026) to improve early recognition of the condition, warning that delays in diagnosis remain widespread despite advances in treatment.
JAFA founder, Associate Professor Ruth Colagiuri, said earlier recognition of juvenile arthritis had the potential to change the course of a child’s life, preventing avoidable complications and long-term disability.
She said that improving awareness among healthcare professionals remained one of the most effective strategies to reduce diagnostic delay.
The campaign’s message to clinicians is clear – persistent musculoskeletal symptoms in children warrant careful assessment and early referral, as timely intervention remains the most effective way to preserve joint function, protect vision and improve long-term outcomes.
Professor Colagiuri told Rheumatology Republic that one of the main challenges for the diagnosis of JA was there was no definitive blood test for the disease.
“Children who do not have rheumatoid factor, who are not rheumatoid factor positive, can still have juvenile arthritis,” she said.
“In fact, the majority of them are not rheumatoid factor positive. That’s one thing, but it is confusing.
“Lots of kids have an accident or something, they can get stiff, sore, swollen joints for all sorts of reasons, but I think the difference is that this is consistent and it’s persistent.
“It’s not a pain that comes and goes, and it’s almost always stiffer and sorer in the morning after they have been lying still. Then after they get up and move around, it eases off a bit.”
She said early diagnosis played a massive part in outcomes for children and teenagers with JA.
“If we can get children quickly, it saves them having arthroscopies and sometimes surgery, hanging around for months and months or years and years,” she said.
Juvenile idiopathic arthritis is one of the most common chronic diseases of childhood, affecting an estimated 6000 to 10,000 Australian children aged under 16 years, yet early symptoms continue to be overlooked or misattributed, experts say.
Persistent joint swelling, pain, morning stiffness, limping and fatigue are frequently dismissed as minor injuries or “growing pains”, allowing inflammatory disease to progress unchecked.
Clinicians are being urged to reconsider how they assess children presenting with musculoskeletal complaints, particularly when symptoms persist or are accompanied by systemic features.
Failure to identify the condition early can result in irreversible joint damage, the need for joint replacement surgery in adolescence or early adulthood, and vision complications associated with undetected uveitis.
Data from JAFA’s IMPACT Study underscore the burden of delayed diagnosis, with four in five children experiencing daily pain and high rates of permanent disability.
More than half of affected children report mental health conditions such as anxiety and depression, while nearly half require assistance with activities of daily living.
School attendance is also significantly affected, with children missing an average of 12% of the school year, and overall quality of life reported to be poorer than that of peers with comparable chronic conditions.
The economic impact is substantial, with government healthcare costs exceeding $24,000 per child annually.
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Dr Jeff Chaitow, paediatric rheumatologist and chair of JAFA’s Medical and Scientific Panel, said earlier clinical awareness of the signs and symptoms of JIA was critical.
“I regularly see the impact of untreated inflammation, including joint and eye damage, as well as varying degrees of disability,” he said.
“The earlier we make the diagnosis and start treatment, the better the chance we have of controlling the disease and protecting a child’s future.”
Frontline clinicians, including general practitioners, paediatricians, emergency physicians, physiotherapists and other allied health professionals, are often the first point of contact for children with early symptoms.
Their ability to identify red flags, take a thorough history and initiate timely referral to paediatric rheumatology services is critical to altering disease trajectory.
Workforce gaps are compounding delays in some jurisdictions. Tasmania and the Northern Territory currently have no resident paediatric rheumatologists (although the former has a rheumatologist), requiring families to travel interstate for care, often to tertiary centres such as the Royal Children’s Hospital in Melbourne or the Women’s and Children’s Hospital in Adelaide.
Limited outreach services and lack of funding for expanded models of care continue to create inequities in access, particularly for families unable to travel.
To support earlier diagnosis, JAFA has developed a national Early Diagnosis HCP Hub, providing evidence-based guidance tailored to primary care, paediatric and allied health settings.
The platform includes clinical prompts, red flag indicators, screening considerations including uveitis risk, and clear referral pathways designed to streamline access to specialist care.
Professor Colagiuri said providing frontline health professionals with the information resources to help them reduce the delays in diagnosis was key to ensuring young patients didn’t fall through the cracks.
The online hub houses a wealth of information, including flow charts, case studies, articles and journal articles.
“We try to keep it fairly simple, because I think giving people too much information, maybe the less they read, and they are busy people,” she told RR.
“So, the idea is just to provide them a hub that they can log on to and look up very quickly.
“Probably most importantly, the hub includes a map of Australia with a paediatric rheumatologist map, which shows where the paediatric rheumatologists are throughout Australia in both private and public sector health services.
“I think that’s very useful. Also, the information that is on the hub and all the clinical guidance that we use has been developed and approved by the Australian Paediatric Rheumatology Group.”
The hub also facilitates access to a paediatric rheumatologist. For example, a GP can speak to a paediatric rheumatologist for advice on whether a patient is a likely candidate for JA and how to use the national referral pathways.
“I think accessibility is an issue,” she said.
“Paediatric rheumatologists are wonderful insofar as they will always find room and make time to see a newly diagnosed child, but it is difficult, and one of the things the Juvenile Arthritis Foundation does very rigorously is to advocate the state and territory governments to increase the paediatric rheumatology workforce, not just the doctors, but nurses, physios and psychologists, occupational therapists and so forth,” she told RR.
“Our mantra is stiff, swollen and sore joints, suspect juvenile idiopathic arthritis.”
JAFA’s healthcare professionals’ hub is located here.
