Transition Compass
Chronic health conditions affect approximately forty percent of Australian children. Thanks to advancements in care, a majority of children with chronic health conditions will survive into adulthood and will need support transitioning from paediatric to adult care. An estimated 2.5 million Australian children will have to navigate this transition over the next 20 years. Despite this, there are no overarching national guidelines for the transition of children across chronic health conditions, and limited evidence to support existing practice.
For many adolescent and young adult (AYA) survivors, it can be challenging to navigate the fragmented healthcare system, which siloes paediatric and adult care. This transition period is associated with increases in disease-related morbidity and mortality. A smooth and successful transition is critical for ensuring that AYAs do not disengage from the specialist care that they require, as this can lead to both negative health outcomes for the individual, as well as an unnecessary burden on family/caregivers and acute health services.
This study ("Transition Compass") aims to improve the transition experience for future generations of children and families who are affected by a chronic health condition.
Interested in participating in research? get involved!
We are currently inviting AYAs, parents, and paediatric and adult healthcare professionals (HCPs) to participate in a number of co-design workshops to understand consumer perspectives and preferences on the transition from paediatric to adult care for young people living with a chronic health condition.
This study will be the first phase of the Transition Compass study and will go towards informing the development and design of the Transition Compass intervention. Please see below for details on eligibility, and how to get in contact with the research team.
Read more about co-design on the Agency for Clinical Innovation (ACI) website here.
What will participation involve?
Participation in this study will involve attending two online workshops, approximately six weeks apart. These workshops will be held with up to 10 participants. It will be a safe space to share your experiences and relate with others who have gone the transition from paediatric to adult care.
Please read "who can participate" to know if you are eligible to enroll in this study.
Who can participate?
For adolescents and young adults:
- You are aged between 18-25 (inclusive).
- You have a chronic health condition.
- You have transitioned from paediatric to adult care.
For parents:
- Your child has a chronic health condition.
- Your child has completed the transfer from paediatric to adult care.
For Healthcare Professionals
- Paediatric: You are a physician delivering specialist care for chronic health conditions at a paediatric hospital.
- Adult: You are an adult specialist delivering specialist care for chronic health conditions.
Please note that the study is only open to those living in Australia.
If you are interested in enrolling, please fill out the form with a short comment regarding your eligibility, and a member of the research team will be in contact with you.
If you are unsure about any aspects of the study, or would like to know more, you can contact the research team directly at transition@unsw.edu.au
What's next?
The next phase in the Transition Compass study will be the development and adaptation of a digital intervention to support the transition of young people with a wide range of chronic health conditions as they integrate into adult care.
Results from the above co-design workshops will inform the design of this intervention, which will be evaluated in a future randomised controlled trial (RCT).
Transition Compass will be the largest transition intervention to date, and the only transition intervention tested beyond the single chronic medical condition setting.
The Transition Compass study includes investigators and collaborators from a wide variety of Australian institutions, including:
- The University of New South Wales (UNSW)
- The University of Sydney (USYD)
- The University of Adelaide
- The University of Melbourne
- The Sydney Children's Hospital Network (SCHN)
- Royal Children’s Hospital Melbourne (RCH)
- The Women's and Children's Hospital Adelaide (WCH)
- The Murdoch Children's Research Institute (MCRI)
- The Agency for Clinical Innovation (ACI)
- The Epilepsy Foundation Australia
- Trapeze
- Kids2Adult Alliance
- Child UnLimited
