Background:
The transfer from the supportive and guided environment of paediatric to adult care with its increased emphasis on autonomy and self reliance poses challenges for patients and clinicians. Challenges, which if not recognised, and adequately met, can lead to poor health outcomes.
We sought to develop an integrated programme incorporating patient and carer perception of important issues and information from published models of transition.
Aims:
1. To develop a disease relevant, location and community appropriate value transition pathway and package
2. To set up a dedicated clinic for adolescents and young adults with rheumatic disease (AYARD)
Methods:
Programme Development
Stage 1
Review of existing programmes
- literature search and personal contact with other institutions and local transition services
Stage 2
Determination of patient and carer perspectives
- Systematic qualitative study of patient attitudes and experiences (Kelly A, Niddrie F, Tunnicliffe D, Hanson C, Major G, Singh-Grewal D, Tong A. Patients’ attitudes and experiences of transitional care in paediatric rheumatology: A systematic review of qualitative studies, Arthritis Rheumatol. 2017; 69(S10):1-4481)
- Survey by anonymous questionnaire of local >13 year old clinic patients and parents/carers, inviting feedback on the need for an AYARD clinic
Stage 3
Pathway development
- Focus meetings of key personnel (paediatric, adult and adolescent medical, nursing specialists and administrative staff)
- Utilise findings from stage 1 and 2
Results:
- Identified key components for effective transition
- Literature review
- Written transition protocol
- Dedicated coordinator
- Age and skill appropriate progression
- Flexibility in timing
- Shared care between paediatric and adult team
- Programme evaluation
- Systematic qualitative study of patient/carer perspectives
- Building trust in familiarity
- Creating a sense of belonging
- Facilitating the quest for autonomy
- Patient and Parent/carer attitude to transition.
- Questionnaire response with 92% strongly supportive of AYARD clinic
- Programme development
- Dedicated local coordinator appointed
- Orientation visit and guided tour for new patients
- 3 stage transition based on individual needs and skill development
- Package of documents, including transition pathway, information booklet, skills assessments, clinician checklists, transition plans, transfer document
- Annual combined paediatric and adult consultations
- Effectiveness assessment
- An evaluation tool focused on key programme objectives and incorporating patient reported outcomes is being developed.
Conclusions:
Paediatric and adult rheumatology services at one location allows a collaborative and coordinated approach to transition. A dedicated clinic, designated coordinator, formal transition pathway, and service specific resources, is anticipated to improve outcomes for patients transitioning from paediatric to adult rheumatology services. Evaluation is required to demonstrate effectiveness.