Table 1

Recommendations, standards and proposed quality indicators on transitional care for young persons with RMD

1. YP with RMD should have access to high-quality, co-ordinated transitional care, delivered through partnership with healthcare professionals, YP and their families, to address needs on an individual basis5D9.6
2. The transition process should start as early as possible; in early adolescence or directly after the diagnosis in adolescent-onset disease2bB8.3
3. There must be ‘direct’ communication between the key participants (and as a minimum, to include the YP, parent/carer, and a member each of the paediatric and adult rheumatologist teams) during the process of transition. Before and after the actual transfer, there should be ‘direct’ contacts between paediatric and adult rheumatologist teams5D9.3
4. Individual transition processes and progress should be carefully documented in the medical records and planned with YP and their families5D9.2
5. Every rheumatology service and clinical network—paediatric and adult—must have a written, agreed and regularly updated transition policy5D8.9
6. There should be clear written description of the MDT involved in transitional care, locally and in the clinical network. The MDT should include a designated transition co-ordinator5D8.7
7. Transition services must be YP focused, be developmentally appropriate and address the complexity of YP development5D9.4
8. There must be a transfer document5D9.4
9. Healthcare teams involved in transition and adolescent-young adult care must have appropriate training in generic adolescent care and childhood-onset RMD5D9.5
10. There must be secure funding for dedicated resources to provide uninterrupted clinical care and transition services for YP entering adult care5D9.4
11. There must be a freely accessible electronic-based platform to host the recommendations, standards and resources for transitional care5D9.4
12. Increased evidence-based knowledge and practice is needed to improve outcomes for YP with childhood-onset RMD5D8.5
  • GR, grade of recommendation; LOE, level of evidence; MA, mean agreement (0–10); MDT, multidisciplinary team; YP, young people.