Transition of Adolescents with Rheumatic Disease

Transition of care from paediatric to adult rheumatology is a critical phase for adolescents and young adults (AYA) living with chronic rheumatic diseases including juvenile idiopathic arthritis (JIA), juvenile-onset systemic lupus erythematosus (JSLE), juvenile dermatomyositis (JDM), juvenile-onset ankylosing spondylitis, and autoinflammatory conditions. Poorly managed transition is associated with disease flares, medication non-adherence, loss to follow-up, and significant functional deterioration.

Australian Context

In Australia, approximately 5,000 young people are diagnosed with JIA each year. The transition from paediatric to adult rheumatology services typically occurs between ages 16–18 years, depending on the state/territory. Australia lacks a nationally standardised transition protocol, with approaches varying between tertiary paediatric hospitals and adult services. The Australian Rheumatology Association (ARA) and the Australian Paediatric Rheumatology Group (APRAG) have advocated for structured transition frameworks.

Why Transition Matters

Up to 50% of JIA patients continue to have active disease into adulthood. Young adults face unique challenges: educational demands, employment, sexual health, fertility concerns, psychosocial adjustment, and independence in self-management. Adult rheumatology services differ significantly from paediatric models — less family-centred, less psychosocial support — requiring active preparation.

Disease Trajectory and Developmental Context

Rheumatic Diseases Requiring Transition

Juvenile Idiopathic Arthritis (JIA): Most common — includes oligoarticular, polyarticular RF+/RF-, systemic, enthesitis-related, psoriatic, and undifferentiated subtypes. Remission rates vary by subtype; systemic and RF+ polyarticular carry worst prognosis.
Juvenile SLE: More severe phenotype than adult SLE; higher rates of nephritis, neuropsychiatric involvement, and organ damage accrual. Requires vigilant transition given complexity of ongoing management.
Juvenile Dermatomyositis: Risk of calcinosis and long-term muscle weakness into adulthood. Ongoing immunosuppression management during transition critical.
Autoinflammatory Diseases: Periodic fever syndromes (CAPS, TRAPS, FMF) require ongoing IL-1 or IL-6 inhibitor therapy; biologics must continue seamlessly across transition.
Juvenile-Onset Spondyloarthritis: Enthesitis-related arthritis evolving to axial SpA requires transition to adult axial SpA management pathways including biologic therapy.

Adolescent Development

Adolescence involves significant neurobiological, psychosocial, and identity development. Risk-taking behaviour, peer conformity, and ambivalence about chronic illness are developmentally normal but increase medication non-adherence. Transition planning must address: developing self-advocacy, health literacy, sexual and reproductive health, mental health, and independence in managing appointments and medications.

Clinical Presentation and Transition Readiness Assessment

Assessing Transition Readiness

Transition readiness should be formally assessed from age 12–14 years using validated tools. The Transition Readiness Assessment Questionnaire (TRAQ) and the JIA-specific Readiness Assessment Tool (JIA-TAQ) evaluate domains including medication management, appointment attendance, communication with providers, and self-advocacy.

Common Clinical Issues at Transition

WELL-CONTROLLED

Ready for Transition

Stable disease on maintenance therapy. Self-manages medications. Attends appointments independently. Good health literacy.

Standard transition pathway at 17–18 years

Transition Challenges

AT RISK

Active disease, recent flare. Partial medication adherence. Mental health comorbidity. Poor health literacy or self-advocacy skills.

Enhanced transition support; delay if disease active

COMPLEX

Intensive Support Needed

Unstable disease, frequent hospitalisations. Significant psychosocial barriers (homelessness, mental illness, substance use). Limited family support.

Individualized transition plan; social work involvement

Psychosocial Screening

Screen all transitioning youth for depression and anxiety (PHQ-A, GAD-7), substance use, sexual health concerns, and educational/vocational status. Mental health comorbidity is common in JIA and JSLE and significantly impacts adherence and outcomes. Refer to adolescent psychology services early.

Investigations and Pre-Transition Assessment

Essential
Disease Activity Assessment
Disease-specific activity scores: JADAS-71 or cJADAS for JIA; SLEDAI-2K for JSLE; MMT8 and CMAS for JDM. Document current activity and damage (JADI, SLICC-SDI).
Essential
Current Medication Review
Document all immunosuppressive agents, doses, last monitoring bloods, and PBS authority details. Ensure PBS authority for biologics is transferred to adult prescriber.
Essential
Vaccination Status
Review and complete immunisation schedule before transition. Catch-up vaccines if on immunosuppression. HPV vaccination (Gardasil 9) highly important — offered free to all adolescents. Annual influenza vaccine. Live vaccines before biologics if possible.
Essential
Reproductive Health Assessment
Discuss contraception and teratogenic medications (methotrexate, mycophenolate require strict contraception). Fertility counselling if cyclophosphamide used. Menstrual irregularity in JSLE.
Available
Transition Readiness Tool
TRAQ or JIA-TAQ administered 1–2 years before transition. Identifies knowledge gaps and self-management deficits to address in transition clinic.
Available
Mental Health Screening
PHQ-A (depression), SCARED or GAD-7 (anxiety), CRAFFT (substance use). Refer to adolescent mental health services if significant screen positive.
Referral
Allied Health Assessment
Physiotherapy assessment of function and exercise capacity. Occupational therapy for school/vocational participation. Social work for psychosocial risk factors. Dietitian if growth or nutrition concerns.

Transition Models and Timing

Transition Timing Principles

Transition should be planned, not abrupt. The process begins 2–4 years before transfer (ages 14–16) with preparation, and transfer to adult services at 17–18 years. Transfer should be deferred if disease is significantly active or if major psychosocial crises are present. Flexibility is essential — chronological age alone should not dictate transfer timing.

Age 12–14: Preparation Phase

Introduce concept of transition. Begin self-management skill building. Complete TRAQ. Ensure vaccinations up-to-date. Begin attending part of appointment alone.

Age 14–16: Active Transition

Provide written transition summary. Discuss reproductive health. Address mental health, substance use. Patient attends entire appointment independently. Explore adult rheumatology service.

Age 16–17: Pre-Transfer

Identify adult rheumatologist. Joint paediatric-adult handover clinic if possible. Transfer comprehensive clinical summary. Confirm PBS authority transfer. Introduce adult model of care.

Age 17–18: Transfer

First adult rheumatology appointment within 3 months of last paediatric visit. Paediatric team available by phone for 6 months post-transfer. No gap in biologics or immunosuppression.

Transition Interventions and Support

Structured Transition Programmes

Structured transition programmes with a dedicated transition coordinator (nurse or social worker) significantly improve outcomes including appointment attendance, medication adherence, and disease control post-transfer. The "Got Transition" framework and the ACT NOW transition programme provide evidence-based structured approaches applicable in the Australian context.

Self-Management Skills Development

Medication management: Young person orders their own prescriptions, attends pharmacy, and manages dose schedules independently by age 16.
Appointment management: Books and attends appointments without parental assistance by age 16–17.
Communication skills: Can describe their diagnosis, medications, and disease history to a new provider. Practice with clinician before transfer.
Emergency planning: Knows when to seek urgent care, carries emergency medication card, understands sick-day rules for immunosuppressed patients.
Insurance and entitlements: Understands Medicare, PBS concession entitlements, NDIS eligibility (if applicable), and DVA if relevant.

Medication Continuity

Ensure no interruption to biologic therapy during transition. Biologics (adalimumab, etanercept, abatacept, tocilizumab) require PBS authority — paediatric authority must be converted to adult PBS indications. This requires the adult rheumatologist to apply for new PBS authority at first visit. Plan ahead to avoid the 6–8 week processing gap. Methotrexate, hydroxychloroquine, and prednisolone can be continued on standard PBS prescriptions by any registered prescriber.

Disease-Specific Transition Considerations

JIA Subtypes

JIA Subtype	Adult Diagnosis Equivalent	Key Transition Issues
Oligoarticular JIA	Seronegative RA / undifferentiated arthritis	Uveitis screening (ophthalmology handover essential); highest remission rates
RF+ Polyarticular JIA	Seropositive RA	Progressive erosive disease; early DMARD escalation; methotrexate + biologic often required
Systemic JIA	Adult-onset Still disease	IL-1i or IL-6i often required; macrophage activation syndrome risk; complex transition
Enthesitis-Related Arthritis	Axial spondyloarthritis / PsA	Transition to axSpA pathway; NSAIDs + TNF-i; HLA-B27 status documented
Psoriatic JIA	Psoriatic arthritis	Dermatology co-management; IL-17i or TNF-i; skin and joint targets

JSLE Transition

Juvenile SLE requires highly structured transition due to disease complexity. Ensure full documentation of organ involvement, damage score (SLICC-SDI), and lifetime immunosuppression. Hydroxychloroquine must continue indefinitely. Nephritis maintenance requires mycophenolate (teratogenic — contraception counselling mandatory). Belimumab authority requires adult rheumatology/nephrology re-application. Neuropsychiatric SLE history must be clearly communicated.

Uveitis Handover

Anterior uveitis affects up to 30% of JIA patients and is often asymptomatic. Transfer of ophthalmology care must be coordinated simultaneously with rheumatology transition. Provide ophthalmology summary including frequency of surveillance, current topical and systemic therapy, and history of visual complications. Never assume adult rheumatology team will initiate ophthalmology referral without explicit handover.

Managing Flares During Transition

Disease Flare Post-Transfer

Disease flare in the post-transfer period (0–12 months) is common and associated with non-adherence, delayed appointments, and disruptions to biologic authority prescriptions. The adult rheumatology team should see transitioning patients urgently if flare occurs and should have access to the comprehensive paediatric transition summary.

⚠️

Biologic Gap Risk: PBS authority reapplication in adult services can take 6–8 weeks. Plan ahead at the last paediatric visit: arrange adult PBS application, provide a supply bridge, and document a flare management plan. Ensure the young person has an adequate medication supply at transfer.

Acute Flare Management

JIA flare: NSAIDs (short-term), intra-articular corticosteroid injection, increase DMARD or biologic dose, short prednisolone course. Contact adult rheumatologist urgently.
JSLE flare: Assess severity (nephritis/CNS/haematological). Oral prednisolone increase or IV methylprednisolone. Nephrology involvement for renal flare. Do not reduce hydroxychloroquine.
JDM flare: IV methylprednisolone pulse therapy. IVIG if refractory. Review muscle enzymes (CK, LDH, aldolase). Physiotherapy to prevent contractures.

Mental Health Crisis

Transition-associated distress, depression, and anxiety are common triggers for non-adherence and disease flare. All adult rheumatology teams managing transitioned patients should have a pathway to adolescent/young adult mental health services. Normalise psychological support as part of comprehensive rheumatological care.

Monitoring During and After Transition

Post-Transfer Monitoring Schedule

First Adult Visit (≤3 months)

Review all medications, PBS authority status, laboratory results. Repeat TRAQ or equivalent. Establish rapport. Confirm all subspecialty referrals transferred (ophthalmology, nephrology, cardiology). Mental health screen.

3–6 Months Post-Transfer

Assess disease activity with validated tool (JADAS, SLEDAI-2K as appropriate). Review medication adherence. Address any new psychosocial concerns. Ensure biologic PBS authority renewed.

6–12 Months Post-Transfer

Full disease review. Imaging if clinically indicated. Assess educational and vocational goals. Review reproductive health and contraception (especially if on teratogenic agents). Update treatment plan.

Ongoing Annual Review

Disease damage assessment. Long-term medication toxicity monitoring. Bone density (DXA) if prolonged corticosteroids. Ophthalmology if JIA-associated uveitis. Cardiovascular risk assessment in JSLE.

Laboratory Monitoring

Maintain disease-specific monitoring consistent with paediatric practice. Methotrexate: FBC, LFTs every 3 months. Hydroxychloroquine: annual ophthalmology assessment (retinopathy risk with long-term use). TNF-i/IL biologics: FBC, LFTs, renal function 3-monthly; annual TB screening; lipid profile. Mycophenolate (JSLE): FBC, UEC, LFTs monthly initially then 3-monthly once stable.

Special Populations in Transition

🤰 Reproductive Health and Pregnancy

Teratogenic MedicationsMethotrexate and mycophenolate are teratogenic — mandatory contraception counselling at transition. Document counselling and patient understanding. Switch to safer alternatives (azathioprine, hydroxychloroquine) if planning pregnancy.

ContraceptionLong-acting reversible contraception (LARC) preferred. Combined OCP may increase thrombosis risk in JSLE with antiphospholipid antibodies — progesterone-only preferred. Refer to gynaecology if complex.

Fertility PreservationCyclophosphamide-exposed patients should be referred to reproductive medicine for fertility assessment and preservation options (oocyte/sperm banking) before further gonadotoxic therapy.

👶 Early Adolescent Transition (Under 16)

Premature TransferTransfer should not occur before age 16 without exceptional circumstances. Premature transfer associated with worse outcomes. If adult service required for capacity reasons, ensure intensified support.

Parental RoleGradually shift from parent-led to patient-led appointments. By age 14 patient should spend at least part of each appointment alone with clinician. Parental disengagement must be gradual and supported.

🛡️ Highly Immunosuppressed Young Adults

Infection RiskYoung adults on biologics + methotrexate have significant infection risk. Ensure understanding of fever response plan. Educate on sick-day rules: hold methotrexate if vomiting/diarrhoea/fever; seek urgent medical review for fever >38.5°C on biologics.

Travel HealthAdvise on travel vaccinations prior to biologic initiation. Live vaccines contraindicated on biologics. Carry biologic therapy documentation card when travelling.

🌏 Cultural and Linguistic Diversity

CALD PopulationsUse accredited interpreters for all transition consultations. Provide translated written materials. Health literacy may vary. Engage family as culturally appropriate while ensuring patient autonomy.

Rural and RemoteTelehealth transition clinics for rural youth. Coordinate with local GP for monitoring. Ensure rural PBS access for biologics through specialist S100 arrangements.

Aboriginal and Torres Strait Islander Health Considerations

Aboriginal and Torres Strait Islander young people with rheumatic disease face compounded barriers to successful transition. Geographic isolation, cultural factors, socioeconomic disadvantage, and distrust of healthcare systems all affect transition outcomes. Rheumatic heart disease (RHD) due to Group A Streptococcal infection remains a major burden in Indigenous communities, and young people with RHD transitioning from paediatric cardiology require analogous structured transition support. Inflammatory arthritis in Indigenous youth may be underdiagnosed or delayed due to limited specialist access.

Geographic Access

Paediatric and adult rheumatology services are concentrated in major cities. Remote Indigenous youth may have travelled significant distances for paediatric care. Transition must account for telehealth-capable adult services, shared care with ACCHOs and regional hospitals. Travel and accommodation funding must be arranged proactively at transition. NDIS and AIHW transport assistance should be explored.

Cultural Safety

Adult rheumatology services may lack cultural safety training relevant to Indigenous patients. Engage Aboriginal Liaison Officers during transition. Incorporate traditional healing practices where consistent with medical management. Family and community involvement is culturally appropriate and should be facilitated, not discouraged. Use Aboriginal Health Practitioners where available for ongoing support.

Medication Continuity

PBS S100 prescribing for biologics must be re-established with adult prescriber before transfer. Remote pharmacies may not stock specialty medications — arrange dispensing plans in advance. Consider depot or monthly biologic injections for adherence support in remote settings. ACCHO nurses can support medication administration and monitoring.

Mental Health and Psychosocial

Indigenous youth have higher rates of psychological distress, trauma, and substance use. Mental health screening using culturally appropriate tools (e.g., Kessler-10 with Indigenous normative data). Refer to social and emotional wellbeing services within ACCHOs. Connect with youth-specific Indigenous mental health programmes where available.

Stewardship and Key Transition Principles

Quality Use of Medicines in Transition

Medication continuity and adherence are the most critical stewardship issues during transition. Non-adherence to disease-modifying therapy during adolescence can result in disease flares, structural damage, and long-term disability. Adult prescribers must ensure PBS authority is maintained without gaps, and that young adults understand the rationale for ongoing therapy.

ℹ️

PBS Authority Handover: PBS authority applications for biologics in adult indications (e.g., RA, axSpA, PsA) must be submitted by the adult rheumatologist at or before the first adult visit. The paediatric team should provide copies of all relevant clinical documentation (JADAS scores, imaging, prior PBS approvals) to facilitate the adult application.

ACSQHC NSQHS Standard 4 — Medication Safety

Medication reconciliation: Complete reconciliation at every transition-related contact, including first adult visit. Identify and resolve discrepancies between paediatric and adult prescription records.
High-risk medicines: Methotrexate, mycophenolate, cyclophosphamide, biologics — ensure patient has written medication information and knows who to contact if issues arise.
Shared decision-making: Involve young adults in treatment decisions from age 14. Document informed consent and patient understanding of risks and benefits in medical records.
Education: Provide patient-held record or summary document (paper or digital) for young adult to bring to every appointment.

Comprehensive Transition Summary Document

A structured transition summary must be prepared by the paediatric team and provided to both the patient and adult rheumatologist. This must include: diagnoses (ICD-10 codes), disease history chronology, all medications and monitoring requirements, PBS authority details, subspecialty providers, vaccination record, psychosocial summary, transition readiness score, and emergency contact/flare plan.

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