The review of the key principles was undertaken by the ACI’s Transition Care Network. The Network updated the principles to be applicable to all health services. It also ensured the updated version:
- included the lived experience of young people, their families and carers
- recognised specific groups of young people who find transition difficult
- was based on the literature and evidence available.
Transition is defined as: the purposeful planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented healthcare systems.
While it is acknowledged that ‘transfer of care’ is the most prominent feature of many transition models, transition is a process that should begin in the early teenage years. This allows for a considered and planned journey for young people, their family and carers and clinicians.
If clinicians and healthcare services followed the key principles, the journey of the young person, their family and carers may look like this.
- Between age 14 and 16 years prepare for transition.
- Assess transition readiness, identify goals and psychosocial needs to allow for the development of self-management and health literacy skills.
- Identify and engage with a general practitioner (GP) and Aboriginal Medical Services.
- Identify and engage specialised support services.
- Identify additional requirements, e.g. medications and equipment.
- Identify pathways for adult healthcare, get referrals, consider waiting times.
- As early as possible, identify and escalate uncertain adult care pathways.
- Arrange a joint clinic or handover or meeting of new clinicians.
- Transfer medical history and final clinic letters.
- First appointments with new clinicians.
- Follow up with new clinicians with support of GP.
Healthcare transition is a time when young people can be encouraged to learn more about healthcare processes and how to make informed decisions about their health.
Consent changes
When the young person turns 18, they have the right to make decisions about their healthcare, such as who they:
- want to be involved in decision making
- share information with.
The role of carers to support decision making for their young person ongoing will depend on the capacity of the young person and their individual circumstances.
Young people over the age of consent should be encouraged to include carers when planning goals of care if appropriate. Carers may be involved or spoken with separately with the young person’s permission.
Young people under the age of consent, or who lack capacity, need to be given the opportunity to receive information while they have a trusted adult, present with them. For more information, see Consent to Medical and Healthcare Treatment Manual.
Key differences between paediatric and adult care
Paediatric services
Paediatrician often has a coordination role
Families and carers are encouraged to attend consultations
Free or reduced cost of medications, equipment and treatments
Provide multidisciplinary team and ‘one-stop shop’ that often includes specialist knowledge about rare conditions
Adult services
The GP is expected to coordinate care and may take over the prescribing of medications
The young person is encouraged to see their clinician independently
Consumer may need to pay for medications, treatments and resources
There is greater choice of medical specialities around adult health issues, e.g. drug and alcohol, sexual health, fertility and mental health services
Consumer may have to attend services in different locations, depending on care requirements
Kelly A, Niddrie F, Tunnicliffe DJ, et al. Patients’ attitudes and experiences of transition from paediatric to adult healthcare in rheumatology: a qualitative systematic review. Rheumatology. 2020 Dec;59(12):3737-50.
The Transition Care Network conducted the Transition Consumer Experiences Survey in 2022 to learn from young people, their family and carers. Here is a sample their comments.
It is a huge adjustment. It can make the young person’s depression and anxiety worse. Potentially there are greater ramifications for a bad or non-existent transition. That feeling of abandonment and loss of trust is very real.
It helped having the one coordinator that my son or I could touch base with if we had problems.
It has been extremely hard to find adult services to cater to our needs as some of the services only have visiting specialists.
We just want a bit more information about what we can do, or what we should be doing, to make transition a little more seamless for my daughter. There’s a huge gap.
There’s a lot of information collected over time. It would help if it was summarised for us and we could just hand it over.
It’s hard to find a team that will take on my complex issues.
Young people, their family and carers worry about:
- leaving the paediatric team who know them so well
- privacy and confidentiality
- finding someone they can trust and have confidence in
- leaving before they feel are ready
- feeling dumped, cut off and abandoned
- the cost of doctors’ visits and prescriptions
- family members not being able to stay while in hospital and different hospital rules
- lack of coordination of care and having to seek services in multiple places.
Some young people need extra support
It is important to consider the additional supports and local services that may be required by young people to assist them to engage with new adult healthcare.
- Aboriginal young people – engage Aboriginal health staff where possible and link to local Aboriginal Health Services.
- Young people from culturally and linguistically diverse (CALD) backgrounds – use translators and provide resources in appropriate languages. Ensure languages spoken are documented in health information systems.
- Refugees and asylum seekers.
- Those in out of home care.
- Those with mental health conditions – ensure appropriate links are made with Child and Adolescent Mental Health Services or others as needed.
- Those with physical and/or intellectual disability
- Those with an unclear pathway of care – seek advice from specialised transition coordinators who may be aware of clinics and services to refer to.
- Those living in rural areas.
- Those with lived experience of trauma. Having a chronic condition from an early age could be considered an adverse childhood event. Ensuring trauma-informed approaches are followed could help build rapport with the young person.
In 2020, there were 3.2 million young people aged 15–24 in Australia representing 12% of the total population. Of those:
- 31%, approximately 992,000 people aged 15-24 years, live in NSW.
Across Australia, 5.1% of young people are Aboriginal or Torres Strait Islander. Of those:
- 1 in 11 or 9.3% have a disability.
Within Australia and globally, there is an increasing number of young people with chronic conditions that arise during childhood. Examples of these conditions include congenital cardiac disease, spina bifida and muscular dystrophy.
- More than 90% of young people with a chronic condition are now estimated to survive into adulthood.
This increase in survival means adolescents are transitioning at an increasing rate from paediatric services into mainstream adult services that are often ill equipped to meet their needs.
Overview of top chronic conditions in NSW
In 2020, the ACI’s Transition Care Network undertook a rapid evidence check to explore organisational models of transition. The evidence check found a combination of strategies were used to support transition. These included:
- building specialist teams that work across paediatric and adult services, for example joint clinics and case conferences
- integrating young people and family into transition care
- dedicated facilitators
- educational opportunities
- analysis of pathways of care.
This evidence check noted a lack of high-quality studies, such as randomised trials. Most studies were descriptive and not outcome focused. One challenge noted for successful transition was a lack of the voice of young people. Their views will differ from the quantitative data found in the studies reviewed.
The Crowley et al systematic review in 2011 identified three broad categories of interventions for transition:
- patient-focused, for example education and skills
- staffing, such as coordinators and joint clinics
- service delivery, involving adolescent and young adult clinics and enhanced follow up.
The most used strategies in successful transition programs were patient education and specific transition clinics.
Facilitators of a successful transition
The ACI rapid evidence check found these were the facilitators of a successful transition.
- Coordinated and tailored transitional care that is delivered in partnership with healthcare professionals, young people and their families.
- Direct communication between key participants, e.g. the young person, their family or carers, paediatric team and adult team.
- Careful documentation in the medical record.
- Regularly updated transition policies.
- Clear description of multidisciplinary team members.
- Appropriate training for healthcare workers in adolescent care.
- Involving young people in person-centred planning and preparing them for transition, including vulnerable young people such as those with an intellectual disability.
- Supporting and preparing families of young people for transition.
- Having a known, clear transition process.
- Involving adolescent and adult clinics in transition.
These facilitators are explored further under the relevant key principle.
These principles were first developed in 2014 by the ACI's Transition Care Network Executive Committee and Trapeze from the Sydney Children’s Hospital Network for use in the NSW Health system. The principles were based on evidence evaluated in systematic reviews by Crowley et al and Kime et al. They have been used to guide the development of transition models.
The Transition Care Network Executive decided to review and update these principles in 2020 and sought feedback from Transition Care Network members. Network members agreed that the following information needed to be included.
- The update needs to make the principles applicable to all health services, not just transition specific services.
- Mental health and wellbeing aspects of young people with chronic conditions need to be acknowledged.
- Trauma-informed approaches need to be included.
- Examples and case studies of how transition is performed across NSW are valuable.
- There needs to be clearer recognition of groups where transition may be difficult.
- More detail on transfer of records and notes handover is required.
- More examples of transition models and more consumer quotes and input needs to be included.
The ACI acknowledges and thanks the following people for their significant contributions to this document:
- Transition Care Executive Committee
- Transition Care Network members
- the people who completed the Transition Consumer Experiences Survey
- the young people, family members and carers who allowed their experiences to inform this resource.