Transition program requirements for rheumatology management
All adolescents should have access to a high-quality multidisciplinary transitional team with experience in childhood-onset rheumatological diseases and general adolescent care, ideally supported by a dedicated transition coordinator and informed by a formal transition policy.
Careful communication is paramount to ensure effective continuity of care with direct communication between the paediatric and adult service providers before, during and after the transition. General practitioners are best involved early in the transition process because they are likely to have greater involvement in a person’s care as they transition into adulthood.
Review the transition process and progress regularly and document the details in the patient’s medical record. Reviews in the paediatric and adult services should overlap to avoid inadvertent dropout and ensure confirmation of successful transition. Minimum standards of transfer documentation in a formal transition policy should include:
- a medical summary with the person’s diagnosis, any comorbidities, vaccinations, and complications of disease
- current and previous treatments (with reasons for changing treatments and any adverse effects)
- details of the healthcare professionals involved in care
- psychosocial considerations
- educational and vocational status of the person at the time of transfer
- a report on the person’s self-management skills.
Copies of the written transfer document should be made available to the person transitioning and their family, and the healthcare practitioners involved in their care.
During the transition, general practitioners are well placed to manage areas of care such as vaccinations, and, if relevant, to provide advice on how to stop tobacco smoking and starting contraception. Input from allied health professionals (eg physiotherapists, occupational therapists, orthotists, dietitians) when required is also important. Support from social workers and nurse educators can help families come to terms with the diagnosis and its treatment requirements, obtain disability entitlements, and liaise with schools.
The timing of transition from paediatric to adult services is dependent on patient factors (eg maturity, level of education, family situation) and the policies of local healthcare systems (paediatric and adult).The transition process should start as early as possible in adolescence, or directly after diagnosis in adolescent-onset disease, to facilitate development of necessary self-care skills.
A transition program should be purposeful and planned, addressing the medical, psychosocial, vocational and educational needs of the person. Generally, the transition process to adult services is completed around the time the person finishes secondary school.