Room for improvement in transitioning kids to adult care

Young adult clinics staffed by both paediatric and adult rheumatologists could be one way to improve the transition of young people with juvenile-onset rheumatic diseases into the adult health care system.

Commenting on EULAR/PReS guidelines for transitional care, Dr Jane Munro said the Australian Paediatric Rheumatology Group shared international concerns about gaps in the delivery of care at a vulnerable time for young patients.

Evidence suggests about half of patients do not experience a successful transition by not making contact with adult rheumatologists, quickly becoming lost to follow-up or experiencing poorer physical and psychosocial health.

“Anecdotal experience and some auditing in Australia reflect the EULAR guidelines – that we need to improve how we deliver care, how we provide information to families and how we work with adult rheumatologists,” Dr Munro said.

Dr Munro, head of rheumatology at the Royal Children’s Hospital Melbourne, said centralised care in stand-alone clinics for 16-25 year olds had a lot of potential.

“Many of them have outgrown the children’s clinic by 16 to 18 years but we often see delayed maturity and milestones in young people with chronic diseases.”

“They need that extra time to learn to self manage their disease and also for parents who have been very involved in their children’s care,” she said.

For example, young adults had to develop a different mindset in the transition to the adult care setting – that they might be seeing several doctors rather than one, or that no-one would be chasing them up if they missed appointments.

She said Australian health professionals had a high level of expertise working with adolescents, which supported the EULAR recommendation for transition services to be youth focused and developmentally appropriate.

Another recommendation in the guidelines on the need for direct communication between key participants during the process of transition was also critical, she said.

“Face to face or at least verbal conversations are much more effective than just a referral letter.”

Dr Munro said consultation with the profession was underway and a decision to endorse the EULAR guidelines was likely in 2017.

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