Outgrowing Paediatric Care
After two decades as the Deputy Director of General Paediatrics at the Royal Children’s Melbourne, there isn't much in paediatrics that Associate Professor Lionel Lubitz hasn’t seen.
One thing that has concerned him over the years has been the issue of transition from paediatric care to adult care, particularly for vulnerable young people with Intellectual Disability and/or Autism and mental health issues.
Families with a child with long term health or development problems often develop a strong relationship with their paediatrician.
It can be daunting when the child is grows up and moves to care in the adult system.
Dr Lubitz spends his time between Leading Steps Paediatric Clinic and The Royal Children’s Hospital in Melbourne where he is supervising a major transition study for adolescents with autism, intellectual disabilities and mental health problems.
Dr Lubitz says this transition has been on the agenda for a while, and concerns were highlighted recently in a survey at Royal Children’s Hospital involving paediatricians and patients with ASD/ID who had transferred to adult care previously.
“It was overwhelmingly clear that most practitioners, patients and carers felt transition was inadequate at best and terrifying at worst,” says Dr Lubitz.
“It confirms what most doctors know about the risk of young people falling through the cracks without appropriate support once they graduate from paediatric care.
“We’ve embarked on this project to create a better, smoother transition from the cocoon of paediatric care to the adult system,” says Dr Lubitz.
According to Dr Lubitz a lot comes down to the natural difference in the way paediatricians and adult physicians manage their patients.
“Paediatricians tend to be family focused, developmentally attuned, involve parents in decision-making and utilize multidisciplinary teams. Adult care tends to be more patient focused, with expectations of independent consumer skills and fewer interdisciplinary resources,” says Dr Lubitz.
To improve the transition the team developed a program of shared care between the patient’s paediatrician and general practitioner starting from the age of 15 in a process of gradual transition to adult care.
“The GP will have direct access to the project paediatrician to enable support with practical issues that may arise in the consulting room,” says Dr Lubitz.
Other resources are being developed such as better paper and electronic communication and a GP tool kit to assist the GP in understanding the needs of patients with ASD/ID including coexisting medical and mental health conditions.
Dr Lubitz says the toolkit includes the use of and potential problems with medication, particularly in the management of challenging issues such as anxiety disorders and ADHD, as well as suggestions on behavioral management difficulties and other comorbidities that are commonly found in this group of patients.
“The plan is that by the time the patient reaches 18 it will be a seamless move from the paediatrician to adult based care,” says Dr Lubitz.
We hope that information gained from the transition study will improve the experience of all our patients who inevitably must transition to adult care.