Juvenile arthritis program aims to reduce delayed diagnoses

David Lam

22/03/2024 5:15:30 PM

Advocates have welcomed the $800,000 initiative, but warned a lack of specialist access means GPs have a major role to play.

Child with juvenile arthritis
An estimated 18,500–30,100 Australians aged under 24 are impacted by juvenile arthritis.

A landmark $800,000 program will aim to dramatically reduce delays in the diagnosis of juvenile arthritis that are currently placing many children at risk of permanent disability.
Launched on Wednesday by Federal Health and Aged Care Minister Mark Butler, the ‘Juvenile Arthritis: Early diagnosis – Early intervention Changing Children’s Lives’ program will be implemented by Juvenile Arthritis Foundation Australia (JAFA) and is set to change the lives of thousands of Australian children and their families.
It aims to allow earlier recognition and treatment of the chronic condition in order to avoid permanent disability carried forward into the rest of their adult lives.
The Canberra launch, co-convened by Dr Mike Freelander and JAFA, was attended by MPs, health workers, the RACGP and more than 20 families affected by juvenile arthritis, signifying a united front in tackling a significant health issue.
According to the Australian Institute of Health and Welfare (AIHW), an estimated 18,500–30,100 Australians aged under 24 are impacted by juvenile arthritis, while $696.5 million is spent annually on musculoskeletal conditions in these young Australians.
JAFA founder Professor Ruth Colagiuri describes the program as vital and stressed the need for more awareness about what has traditionally been an underrated health issue in Australia.
‘This is a very serious problem and we’re delighted that the Government has listened to our advocacy and responded with action,’ she told newsGP.
‘The average time for diagnosis of arthritis in children in Australia is 10–11 months and that has remained unchanged in 25 years.
‘For some children this is much, much longer. Some of these children turn up for diagnosis already having permanent disability such as joint damage or loss of vision from the associated inflammatory eye disease.
‘A lot of these kids require invasive treatments such as joint injections or surgeries and develop mental health problems.’
Professor Colagiuri shared her own family’s story to demonstrate the huge impact of juvenile arthritis.
‘My granddaughter was lucky she was diagnosed early. Children with arthritis experience enormous struggles,’ she said.
‘They have to struggle with lots of everyday things that healthy kids can do easily. They suffer from pain, being different, getting left out of things at school and some days even having to miss school altogether.’
A recent IMPACT Study commissioned by JAFA indicated that on average, children with juvenile arthritis miss up to 12–15% of school, which Professor Colagiuri says inevitably impacts on a child’s future prospects of university places and good jobs.
The economic burden is often felt by the entire family, with parents losing income in order to take time off to accompany children to their appointments.
Dr Ben Whitehead, Chair of the Australian Paediatric Rheumatology Group concurs that juvenile idiopathic arthritis is a relatively common illness in children that can have significant impacts if not recognised in time and treated appropriately.
‘We have medication that works ... getting to the treatment is the important bit,’ he told newsGP.
‘Back in the old days in the 1980s, a very large proportion of these children grew up unable to care for themselves by the age of 18. Now nobody comes to my clinic in a wheelchair.
‘At some point in the disease process, untreated juvenile arthritis can cause permanent damage to joints. Unfortunately, we don’t know [because of variable time course] when that might be, so we don’t want to miss out on diagnosing early.’
However, he also admits that arthritis, a condition traditionally associated with adults, can be easily missed or confused with benign growing pains.
‘Juvenile arthritis can be hard to diagnose because there is no specific laboratory or blood test for it. Diagnosis requires a combination of history, examination and laboratory tests,’ Dr Whitehead said.
‘The idea of the program is to provide clinical tools and really targeted messaging to GPs and other health professionals.
‘The point is to make it much easier for GPs to be aware that juvenile arthritis is a thing and have more confidence in thinking, “oh yeah, I think that could be the potential diagnosis, that’s something I should send to a rheumatologist”.’
While Dr Whitehead feels that the new program is a positive step, he also believes the severe lack of paediatric rheumatologists should be addressed as well, with AIHW data showing that there were only 14 full-time equivalent rheumatologists in Australia in 2021.
According to Dr Whitehead, there are none at all in Tasmania and Northern Territory, and children in these regions are forced to travel interstate for specialist care. He feels that children from rural and Indigenous communities are the most vulnerable to the lack of access to rheumatologists.
‘In the NT you’re on your own,’ he said.
‘In regional areas there’s basically no service in lots of Australia. Even to see me in metropolitan Brisbane, there is a waitlist of at least four months for category one [most urgent] and over 700 days for a category two referral.
‘It’s a really good thing that the Federal Government is taking an interest in helping children with arthritis get a diagnosis earlier … the bit that’s missing is, you get a diagnosis, great, but there is still difficulty then accessing a specialist.
‘We only have one third of the workforce we need to cope with demand.’
With so few paediatric rheumatologists in Australia, Professor Colagiuri emphasises the vital role played by GPs and is encouraging them to take part in the consultation process to inform the development of the new juvenile arthritis program.
‘GPs have an important role to play, especially in areas where there are no specialists,’ she said.
‘GPs assist with diagnosis, support patients in between their visits to rheumatologists and will often have to determine whether or not a child is sick with an arthritis flair or the common cold.’
‘We very much encourage all GPs to engage with us in the consultation. Things we’ve done in the past might not work now so we are looking for innovative ways to address the issue.’
GPs can register their interest in the program by emailing Mira Mijahlovic at
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