About juvenile arthritis
Juvenile arthritis is a serious, painful, incurable and debilitating autoimmune disease with the potential to result in joint deformities and loss of vision if not diagnosed early and treated effectively. It is one of the commonest chronic childhood diseases affecting more than 6,000 children in Australia.
There are many thousands of people in Australia whose arthritis started as juvenile arthritis and extended into adulthood. About one third of these people has a severe disability.
The prevalence of juvenile arthritis is similar to other serious childhood diseases such as juvenile diabetes and around six times more common than cystic fibrosis, yet there is little political or community awareness of juvenile arthritis and low awareness among health professionals.
Services for juvenile arthritis in Australia lag well behind other serious childhood diseases with similarly complex treatment and care requirements. There are only 22 paediatric rheumatologists in the whole of Australia. The total number of paediatric rheumatologists employed in the public hospital system in Australia totals less than 8.0 FTE.
Government investment in juvenile arthritis services and research is sadly lacking. Consequently, on average it takes 10 months from the onset of symptoms to diagnosis, and some children already have irreversible joint damage and loss of vision at diagnosis.
Once diagnosed, access to specialist medical, nursing, physio and occupational therapy, pain management and self-care education services is very limited.
Facts and figures
Despite being one of the most common of the serious chronic childhood diseases, juvenile arthritis is arguably one of the most under-recognised, misunderstood and neglected childhood diseases in Australia.
JAFA believes this may be due, at least in part, to the lack of accurate statistics on its prevalence, severity and associated impacts of the disease. These can include permanent damage to joints and vision, psychological impacts, lost educational, employment and social opportunities, and negative economic impacts.
What we found
The available statistics on juvenile arthritis are incomplete, confusing and difficult to interpret.
The Australian Institute of Health and Welfare (Australia’s official data source for the nation’s health and illness status) states that around 1 in 1,000 children aged 0-15 years have juvenile arthritis. However, this omits 12 months as it defines Juvenile Arthritis as “a general term used to describe inflammatory arthritis in children that begins before the 16th birthday and lasts at least 6 weeks”.
In their 2010 article on juvenile idiopathic arthritis, Dr Christina Boros and Dr Ben Whitehead, both respected Australian paediatric rheumatologists, propose that this form of arthritis occurs in between 1 and 4 cases per 1,000 children.
While there seems to be general agreement that there are around 6,000 children in Australia with juvenile arthritis, it is difficult to determine if this figure refers to all the (approximately) 100 types of juvenile arthritis or if it refers mainly to juvenile idiopathic arthritis. However, evidence cited in the NSW Model of care for the NSW Paediatric Rheumatology Workforce (2013) suggests that 3 in 1,000 children have juvenile idiopathic arthritis and that there may be as many as 6.000 children and young people in NSW alone with childhood rheumatic diseases/juvenile arthritis.
Why is the lack of accurate data problematic?
The lack of accurate, coherent and comprehensive statistics on juvenile arthritis is an impediment to advocacy and to mounting a vigorous research effort.
Without definitive data it is difficult to put a convincing case to governments to invest in better services and more research into juvenile arthritis.
Without reliable baseline data it is also virtually impossible for medical and scientific paediatric rheumatology researchers to accurately assess changes in incidence and prevalence over time or to evaluate the outcomes of new treatments.
What does JAFA aim to do about this?
JAFA plans to:
- Review the available statistics on what is known about the incidence and prevalence of juvenile arthritis and its complications in Australia. When this is done we’ll post it here for you see.
- Raise funds to establish a juvenile arthritis register. There is an Australian Childhood Cancer Registry and diseases like cystic fibrosis and childhood diabetes have registers that enable accurate estimates of disease incidence and prevalence. Why not for juvenile arthritis?