Providing an effective pathway from paediatric to adult healthcare for young people with rheumatic diseases is the aim of a new study from Professor Catherine Hill.
As many as 10,000 children in Australia are affected by childhood rheumatic diseases like lupus, fibromyalgia and arthritis, and most will be managing these illnesses for life.
But sadly, the transition into adult care can often prove difficult, leading many to drop out.
That’s why Prof Hill, affiliated with The Queen Elizabeth Hospital and University of Adelaide, is teaming up with Dr Grainne Murray from Women’s and Children’s Hospital to establish a transition program for young patients with rheumatic diseases.
Prof Hill said improving the pathways would help patients thrive.
“Following transfer to adult care, adolescents and young adults with juvenile rheumatic conditions have worse health outcomes such as more visits to hospital or not using medicines correctly,” she said.
“We expect a plan that supports adolescents and young adults will improve their care and reduce poor outcomes.”
Currently in South Australia, paediatric rheumatology care is delivered almost solely at the Women’s and Children’s Hospital.
However, adult care is delivered primarily through private practice, meaning young adults transition into an entirely new healthcare team in an unfamiliar setting.
To ensure a smoother transition, Prof Hill and the research team will conduct interviews with recently transitioned patients, their caregivers, and health professionals to identify any shortfalls in the current system.
Those findings will inform an online transition program that will be co-developed with THRF Group – Arthritis.
An education plan for adult healthcare professionals will also be developed, providing information on the needs of patients when transitioning into adult services, which is expected to be beneficial for AYA with other chronic diseases, like diabetes and bowel disease.
Long term, the project hopes to train a dedicated nurse as a ‘health navigator’, providing guidance during the initial transition stages and additional education for young people when needed.
Prof Hill said the team are keen to hear from young people and their families about their experiences transitioning into adult rheumatic disease care.
If you want to get involved, contact Prof Hill by emailing [email protected].
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