COMMENT: Training and funding minefield leaves aspiring paediatric rheumotologists out in the cold – and everyone loses.
Paediatric rheumatology has long been the ‘forgotten cousin’ among a burgeoning sea of adult rheumatologists and trainees.
Even within paediatric circles, many still consider our specialty to be a niche area of interest. Some of our colleagues aren’t aware that our specialty exists within the wider landscape of subspecialty medicine. Our patients and their families deserve better.
Juvenile idiopathic arthritis (JIA) is the most common inflammatory paediatric condition, affecting 1-2 per 1000 children under 16 years of age(1). When considering all paediatric patients with chronic rheumatic disease, the number of patients in Australia exceeds 10,000(2).
There is a significant shortage of specialist paediatric rheumatologists, as evidenced by the complete lack of services available to children in the ACT, Northern Territory or Tasmania. In addition to this, there are no established paediatric rheumatology services outside of any capital city in the country, with regional and rural patients reliant on visiting outreach services, telehealth services or long-distance travel to access specialist care.
Based on internationally accepted standards of care in paediatric rheumatology, there should be at least 31 paediatric rheumatologists in Australia to adequately meet the needs of our patient population(3). Despite this, there are currently the equivalent of only 10 full-time paediatric rheumatologists caring for these complex patients.
The common misconception that childhood rheumatic conditions are rare is highlighted by the fact that JIA alone is as common as other well-known childhood conditions, such as type 1 diabetes and cerebral palsy. The morbidity associated with undertreated JIA is significant and the impact of this condition has been established by the Australian Institute of Health and Welfare (AIHW (2).
- >80% of patients have pain daily
- 85% have a reduced ability to participate in school and sports
- 50% of children continue to have arthritis into adulthood
- 20% of children enter adulthood with disability
- Underemployment exceeds 40% of adults living with the after effects of childhood arthritis
We also care for many children with rarer but potentially life-threatening conditions, such as childhood systemic lupus erythematosus (SLE).
SLE is more severe when it presents in childhood, with high rates of renal and central nervous system disease. Between 10 and 20% of patients die within 10 years, a death rate comparable to childhood leukaemia. Potentially curable childhood leukaemia has an incidence of around 5/100,000, which is equivalent to the prevalence of childhood SLE, which is incurable and lifelong. The disparity between paediatric oncology and paediatric rheumatology funding and resources is almost unquantifiable(4,5).
There are two glaring deficits when it comes to our ability to provide adequate patient care. One is a lack of funding and resources required at a health service and governmental level and the other is the fact that specialty training in paediatric rheumatology is incredibly difficult and restrictive to navigate.
There are only three accredited training positions in Australia. Only one of these has consistent public funding, whilst the other two are reliant on charitable or mixed funding that is insecure from year to year. Subsequently, despite their Royal Australasian College of Physicians (RACP) training accreditation, there have been many years where these positions have not existed as options for trainee physicians.
Many have waited years to enter the training program owing to the limitations in training opportunities, despite our desire to contribute to the paediatric rheumatology workforce. Those who have entered the training program have had to facilitate their training over several interstate and international relocations to meet training requirements. Many trainees have had to arrange their own funding through scholarships and self-funded options to complete their training.
This contrasts with adult rheumatology trainees, who are largely able to complete their entire specialty rheumatology training within their home state or territory, as there are adequate, funded training positions to meet RACP training requirements.
For those of us who have completed our training, the issue then becomes trying to find funded paediatric rheumatology specialist positions with which to use our skills and knowledge.
Many of us have commenced our consultant careers in general paediatric roles because the desperate requirement for more paediatric rheumatologists is not met with funding or resources to facilitate this.
We are capable of and immensely motivated to provide high level care to our patients and their families but are met with challenges every step of the way. The Parliamentary Inquiry into Childhood Rheumatic Diseases, currently underway in Canberra, is a hugely positive step in having our concerns heard in a forum with the power for true change.
We collectively, as a specialist, trainee and patient group, hold our breath that the outcome of this inquiry will enable us to deliver the care our patients deserve.
References
- Manners PJ, Diepeveen DA. Prevalence of juvenile chronic arthritis in a population of 12-year-old children in urban Australia. Pediatrics. 1996;98(1):84-90.
- Welfare AIoHa. Juvenile arthritis in Australia 2008 [Available from: https://www.aihw.gov.au/getmedia/f0c629bd-990c-4639-b2e1-3ec6f64e9f46/jaia.pdf.aspx.
- Service NH. NHS Standard Contract: Paediatric Medicine: Rheumatology 2013 [Available from:
https://www.england.nhs.uk/wp-content/uploads/2013/06/e03-paedi-medi-rheum.pdf. - Kamphuis S, Silverman ED. Prevalence and burden of pediatric-onset systemic lupus erythematosus. Nat Rev Rheumatol. 2010;6(9):538-46.
- Pulte D, Gondos A, Brenner H. Trends in 5- and 10-year survival after diagnosis with childhood hematologic malignancies in the United States, 1990-2004. J Natl Cancer Inst. 2008;100(18):1301-9.
Dr Courtney Samuel is a Paediatric Rheumatologist and General Paediatrician at Townsville University Hospital, Queensland and a member of the ARA Early Career Group steering committee.
This article was written with content credit to the Australian Paediatric Rheumatology Group (APRG) and their current paediatric rheumatology trainees, who have given their tireless effort and time to improving care for children with rheumatic diseases through their recent submissions to the Parliamentary Inquiry on Childhood Rheumatic Diseases.
We acknowledge the traditional owners and custodians of the land on which we practice and pay our deepest respects to their Elders past, present and emerging. Importantly, we acknowledge that Aboriginal and Torres Strait Islander children carry a disproportionate burden of some paediatric rheumatic diseases and have worse disease outcomes.
