A new model for transitioning young adults with chronic illness
Moving from paediatric to adult healthcare is a major life change for young people living with chronic illness. The shift involves far more than changing doctors. It can affect medication management, communication, education, employment, mental health, family roles, and confidence in making healthcare decisions.
A coordinated transition model treats this period as a planned process rather than a single referral or appointment. It brings young adults, families, carers, paediatric teams, adult clinicians, primary care providers, and community services into the same conversation. The aim is continuity: the young person should understand their condition, know where to seek help, and feel prepared to manage care in an adult health system.
This approach also creates an opportunity for health services to use research, patient experience, and service data to improve outcomes. Collaborative networks such as the Brisbane Diamantina network can help connect clinical teams, researchers, universities, and health services around practical models of care.
Why the transition period needs a dedicated approach
Young people with cystic fibrosis, diabetes, congenital heart disease, epilepsy, inflammatory bowel disease, physical disability, and other long-term conditions often have complex treatment needs. Paediatric services may have provided highly coordinated, family-centred support for many years. Adult services generally expect greater independence and may operate across several separate departments.
If the transition is poorly timed, young adults can miss appointments, misunderstand changes to treatment, or disengage from care. Gaps are especially risky when a person is moving away for study, entering the workforce, becoming financially independent, or managing new mental health pressures.
A dedicated transition pathway recognises that readiness develops gradually. It allows services to identify barriers early, tailor support to individual abilities, and maintain clinical safety while responsibility shifts from parents and clinicians toward the young adult.
A staged pathway built around readiness
The process should begin early in adolescence, with a clear transition policy shared by paediatric and adult services. Initial conversations can focus on explaining the future pathway, building health literacy, and helping the young person participate in consultations. Later stages can introduce appointment booking, prescription management, symptom monitoring, and communication with clinicians.
Readiness assessments should be practical rather than punitive. A young person may understand their diagnosis but still need help with transport, costs, executive functioning, or communicating during a medical review. Assessments can cover knowledge of treatment, confidence with self-management, decision-making capacity, emotional wellbeing, and access to social support.
A transition coordinator can keep the pathway moving across organisational boundaries. This role may be held by a nurse, allied health professional, social worker, or suitably trained administrator, depending on local resources. The coordinator can maintain an individual plan, arrange joint appointments, track referrals, and contact the young adult after the transfer.
Shared care and reliable information exchange
Effective handover requires more than sending a discharge summary. The adult team needs an accurate picture of diagnosis, treatment history, allergies, previous complications, communication preferences, psychosocial needs, and warning signs that require urgent attention. Information should be concise, current, and written in language that the young person can understand.
A shared transition record can support this process. It might include an individual care plan, medication list, emergency instructions, consent preferences, goals for the next year, and details for primary care and community services. Young adults should be able to view and contribute to the record wherever privacy and health information rules permit.
Joint clinics can strengthen relationships before the transfer is complete. A paediatric clinician, adult specialist, general practitioner, and young person may review the care plan together, clarify responsibilities, and agree on how follow-up will work. This collaborative model reduces the risk that the young adult feels passed from one service to another without support.
| Transition element | Paediatric focus | Adult-care focus | What continuity requires |
|---|---|---|---|
| Clinical responsibility | Family-supported care | Young adult-led care | A gradual transfer of decision-making |
| Communication | Parent and clinician participation | Direct communication with the patient | Plain language and documented preferences |
| Appointments | Coordinated specialist visits | Self-booked and multi-service care | Reminders, flexible access, and navigation support |
| Treatment management | Shared medication routines | Independent prescriptions and monitoring | Skills training and review of capability |
| Psychosocial support | School and family systems | Study, work, housing, and relationships | Referral pathways beyond specialist clinics |
| Safety planning | Paediatric emergency guidance | Adult urgent-care pathways | Clear instructions and accessible records |
Supporting autonomy without removing safeguards
The goal of transition is increasing independence, not withdrawing support. Some young adults will manage their condition independently, while others may need ongoing assistance from family, carers, disability services, or supported decision-making arrangements. The model should respect autonomy while recognising different cognitive, physical, cultural, and social needs.
Clinicians can use private consultation time to discuss sensitive topics such as sexual health, substance use, mood, relationships, financial stress, and safety at home. These conversations help identify concerns that may remain hidden when parents are present. Young people should receive clear information about confidentiality and the circumstances in which information may need to be shared.
Digital tools can make care easier to access, particularly for people living outside metropolitan areas. Secure messaging, telehealth, online education, medication reminders, and electronic referrals may reduce travel and missed appointments. Digital access should complement, rather than replace, personal contact and should be designed for people with limited connectivity, disability, low health literacy, or language barriers.
Measuring whether the model works
A transition pathway needs measurable outcomes. Services can track whether young people attend their first adult appointment, maintain medication access, receive recommended monitoring, and experience avoidable hospital admissions. These indicators should be interpreted alongside patient-reported measures of confidence, trust, quality of life, and satisfaction with care.
Equity measures are essential. Young adults in rural and remote communities, Aboriginal and Torres Strait Islander communities, culturally diverse families, and those living with disability may encounter different barriers. Data should be reviewed by relevant population groups so that a pathway that works for one cohort does not conceal poor access for another.
Evaluation should include feedback from families, carers, clinicians, and community organisations. Research partnerships can help services compare models, test digital interventions, and identify which elements produce lasting improvements. The same translation principles used in other areas of health innovation can apply here, including the careful movement of evidence into everyday practice. For example, work on trauma care innovations demonstrates how coordinated systems and practice-based learning can improve care across professional boundaries.
Making implementation practical for health services
A new transition model should be introduced with clear governance, defined responsibilities, and realistic workforce planning. Leaders need to identify which service owns the pathway, how referrals are accepted, who follows up missed appointments, and how urgent concerns are escalated. Without these details, even a well-designed policy may remain inconsistent across clinics.
Education should be provided to paediatric and adult teams, primary care clinicians, reception staff, and allied health professionals. Training can cover adolescent communication, supported decision-making, cultural safety, disability inclusion, privacy, and the effects of chronic illness on education and employment.
Useful actions for implementation include:
- Appoint a transition coordinator for each major chronic disease pathway.
- Introduce a readiness assessment and individual transition plan by mid-adolescence.
- Offer at least one joint review with paediatric and adult clinicians before transfer.
- Create a shared handover template with medication, risk, psychosocial, and emergency information.
- Review outcomes at six and twelve months after the first adult-care appointment.
A successful handover should feel like a supported progression, not a loss of familiar care. Health services can begin by mapping the current patient journey, identifying points where young people disengage, and testing small changes with patients and families. Use the findings to build a safer, more flexible pathway that carries young adults confidently into adult healthcare.
