Published: September 2022
The seven key principles have been developed to support clinicians and healthcare services to improve the transition process for young people with chronic conditions.
Why principles are needed
As young people with chronic conditions get older, they will need to transition from paediatric healthcare into adult healthcare services. In recent years, a rise in the number of young people transitioning has increased the expectation of a seamless transfer.
During transition, the young person and their loved ones can feel vulnerable. The seven key principles support a smoother transition because they place the young person at the centre of care, ensuring a developmentally appropriate, trauma-informed approach. An improved process will ensure more young people successfully transfer from paediatric to adult healthcare services and are comfortable with their new clinicians.
The number one thing is for clinicians to realise that transition is a really traumatic part of our children’s lives. I know clinicians are sympathetic, but I think they underestimate it.
The key principles
Every patient journey is unique
Transition may be simple, perhaps only involving one speciality. Or it can be complex, involving multiple clinicians across different sites. The transition can occur in different settings such as tertiary health services, community health services, non-government organisations, primary care or in private specialist services.
Assessing psychosocial needs may require additional time to plan a successful transition. Additional supports may also be needed for young people who are:
- from Aboriginal and culturally and linguistically diverse (CALD) backgrounds or rural areas
- refugee and asylum seekers or in out of home care
- living with physical and intellectual disability, lived experience of trauma or have mental health conditions.
Roles in transition
A general practitioner (GP) has an important role in the transition of the young person and preparing their family and carers. The GP should cover these areas.
- Be involved as part of the care team from the time of diagnosis.
- Ask young people about their transition plans, especially from the age of 14.
- Request and receive specialist documentation before the transition period, to avoid a lump sum of correspondence.
- Request appropriate documentation from specialists if it is not already received.
- Be invited to participate in case conferences and transition planning.
- Offer a GP management plan to enable longer appointments and care coordination.
- Consider recommending more regular appointments around the time of transition and follow up after appointments, especially with new specialist teams.
- Encourage young people to begin attending their appointments independently when appropriate to do so.
- Ask young people who they would like to have involved in their healthcare decision making, depending on the young person’s capacity.
- Explore other health and social needs and goals, for example relationships, sexuality, study and work needs.
The paediatric clinician's role is to provide support in the following ways.
Connect the young person to the right services
- Identify young people who will transition and begin discussing transition between the ages of 14 to 16.
- Identify a local transition coordinator or facilitator for each young person. Include the coordinator or facilitator in correspondence and invite them to clinic appointments when possible.
- Encourage the young person to strengthen their relationship with their GP in the period leading up to transition.
- Consider care close to home or if services will be outside of their local health district.
- Identify Aboriginal health staff who can support and provide clinical care to Aboriginal young people and families.
- Identify if other support services are required, for example CALD, out-of-home care etc.
Support the young person to be involved in their healthcare
- Use assessments like HEADDSS to understand the psychosocial needs of the young person.
- Where appropriate, encourage young people to be more proactive in decision making and care.
- Encourage the use of apps such as MyTransition to help young people organise their own healthcare information.
- Ensure young people (and carers) know who to contact when they are unwell.
- Help them to understand their changing roles and responsibilities as their young person moves to adult services.
- Encourage them to discuss with their young person who they would like to involve in healthcare decisions and how they would like them to be involved.
- If appropriate, support them to assist their young person to take on more responsibility for their health as they mature. For example, young people can become more familiar with their own medical history, medication lists, specialists’ names and appointment details.
In the years before transition, they can do the following.
- Include GPs as part of the care team from the first stages of seeing the patient. For rarer conditions, provide the GP with additional information to build their awareness.
- Be sure to include GPs in transition planning.
- Provide information to the GP on where to seek support and advice for appliances, such as tubes and a continuous positive airway pressure (CPAP) machine.
- Make referrals to adult clinicians well before the last planned appointment with the young person. Depending on the speciality, this may mean one to two years before the first appointment with new adult clinicians. This will allow time for the referral to be received, triaged and entered and for the young person to have an initial appointment with the adult clinician before leaving your care.
As the transition dates gets closer the paediatric clinician should undertake the following.
- Consider holding a case conference or joint initial appointment to facilitate the transition to the adult clinician. Reach out to the adult clinician to offer this opportunity. Invite the GP to case conferences.
- Consider more frequent or longer appointments in the period leading up to transition.
- Identify medications or equipment that might need approvals from new suppliers or specialists, or for which funding may change in adult health services.
- Remember that adult clinicians and GPs may not have access to test results and documents outside of local health districts, specialty health networks, and private practices. Send all relevant documentation with the referral and remember to include the adult clinicians in any correspondence and results after the initial referral.
The adult clinician's role is to provide support in the following ways.
- Confirm receipt and acceptance of referrals from paediatric clinicians.
- Reach out to paediatric colleagues to discuss joint clinics or case conferences to inform good handover.
- Considering setting clinic time aside specifically for adolescent and young adult patients and consider longer appointments initially.
- Empower young people to be a part of the conversation and encourage questions. Allow for opportunities to include family members, carers and other support people.
- Encourage and respect emerging independence and identity. Adolescence is a time when young people are figuring out who they are.
- Build rapport so the young person is comfortable to ask questions around lifestyle, i.e. sex, drugs and alcohol and impacts of their condition and treatment.
- Considering their needs for education and vocational support.
- Learn about the young person's other support networks.
- For Aboriginal young people and families, identify local Aboriginal health staff who may be able to provide support and clinical care.
- If the young person is or has been in out-of-home care, seek advice through the Out of Home Care pathway team in local health districts.
- Strengthen linkages with their GP or Aboriginal Medical Service. Ensure documentation is provided to GPs. Ensure GPs are given information about rarer conditions and treatments, including appliances and unique medications.
- Work with the local transition coordinator or facilitator.
- Work with other providers, such as community therapists, psychologists, other medical specialists, and include them in your correspondence with the young person's consent.
* Name has been changed to protect privacy