EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

Introduction Rheumatic and musculoskeletal diseases (RMD) that start in childhood can continue into adulthood, and young people (YP) with continuing disease are at risk of ill health. Adolescence and young adulthood is an important time in life. Moving from paediatric to adult care can be difficult for YP; support and education are needed throughout this time. Transition encompasses the process by which YP acquire skills and access resources to ensure that their physical, psychological, educational and vocational needs are met during transition to adulthood. Transfer is the administrative event in which YP move from paediatric to adult care. 17/02/2019

Objectives Identify processes, strategies and tools for a successful transition in RMD. Increase the profile of transition, optimise delivery of transitional care and improve patient experience within rheumatology to ensure youth friendly and developmentally appropriate care. to improve physical, psychological, social, vocational and illness-related outcomes of YP with juvenile-onset diseases (jRMD). to facilitate continuity of care within adult rheumatology. to promote evidence based practice in transitional care. to facilitate clinical networks of health care professionals (paediatric and adult) who are engaged, interested and trained in the care of YP. 17/02/2019

Scope and users Adult and paediatric rheumatologists. Other health care professionals: nurses, physiotherapists, occupational therapists, social workers, psychologists, youth workers, primary care and other specialists (e.g., ophthalmology, dermatology, nephrology, orthopaedics) involved in share care and clinical networks. General practitioners and health care professionals working in primary care. YP with RMD and other multisystem diseases, their families and peers. Professional groups or societies working with YP with RMDs. Academics involved in Adolescent and Young Adult health research. In addition, these standards and recommendations are intended to be useful to: educational and vocational services, employer and careers advisory services, charities and support organisations, funders of clinical services, health policy makers, research funding bodies, and organisers of disease/drug registers or cohort studies. 17/02/2019

Overarching principles Importance of YP focus. Multidisciplinary approach with equity of access, quality of care and flexibility. Acknowledging both the heterogeneity of YP development and potential impact of chronic illness. YP with jRMD require more resources and services than YP who do not have chronic illnesses. 17/02/2019

Methods* FINAL Recommendations, standards and quality indicators International expert panel of representatives of patients and multidisciplinary teams in adult and paediatric rheumatology Systematic review of transitional care programmes in rheumatology Setting the framework, developing the process map of transitional care and generating a draft proposal of recommendations and standards Consensual approach with Delphi methodology FINAL Recommendations, standards and quality indicators * According to the EULAR Standardized Operating Procedures (van der Heijde et al Ann Rheum Dis 2016,75:3-15) 17/02/2019

Recommendation 1. YP with jRMDs should have access to high quality, coordinated transitional care, delivered through partnership with health care professionals, YP and their families, to address their needs on an individual basis. Care should be holistic, not just medical treatment. Care should be tailored to each individual’s present and future needs. 17/02/2019

Recommendation 2. The transition process should start as early as possible; in early adolescence or directly after the diagnosis in adolescent-onset disease. Ideally, transition should start by the age of 11 years, and no later than 14 years. When diagnosis is made after the age of 14, transition should start as soon as possible. 17/02/2019

Recommendation 3. There must be ‘direct’ communication between the key participants (and as a minimum, to include the YP, parent/carer, and a member of 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 teams. A network of paediatric and adult rheumatologist ensure early and proactive transition. If meeting in person is not possible, at least two phone calls, before and after transition, are necessary. 17/02/2019

Recommendation 4. Individual transition processes and progress should be carefully documented in the medical records and planned with YP and their families. Ideally, there should be a written transition plan for each YP with jRMDs. Transition should be recorded in medical records. 17/02/2019

Recommendation 5. Every rheumatology service and clinical network—paediatric and adult—must have a written, agreed, and regularly updated transition policy. Transition policy details how YP will be transitioned from paediatric to adult care. Policy documents on transition services within a hospital or clinic must be updated every five years. 17/02/2019

Recommendation 6. There should be clear written description of the multidisciplinary team (MDT) involved in transitional care, locally and in the clinical network. The MDT should include a designated transition coordinator. The transition team may include doctors, nurses, physical therapists, occupational therapists, and youth or social workers. It is essential that there is a nominated person on the team who takes responsibility as transition co-ordinator. 17/02/2019

Recommendation 7. Transition services must be YP focused, be developmentally appropriate and address the complexity of YP development. Staff attitude and communication should be tailored to ensure care is age-appropriate. Impact on daily life of YP must be kept to minimum. YP must take control of the management of their diseases, instead on relying on parent or carer. 17/02/2019

Recommendation 8. There must be a transfer document. As a minimum, it should include diagnosis and a summary of past and current treatment and ability to manage pain. Details of any complications or other diseases are also necessary. An overview of educational or work status is recommended. 17/02/2019

Recommendation 9. Health care teams involved in transition and adolescent-young adult care must have appropriate training in generic adolescent health and childhood onset RMD. People working on transition must have knowledge about RMD in childhood and understand general health issues for adolescents. Team members should be trained to address emotional, mental or social issues of YP with jRMD, and should be able to help them to achieve a healthy lifestyle. 17/02/2019

Recommendation 10. There must be secure funding for dedicated resources to provide uninterrupted clinical care and transition services for YP entering adult care. Health professionals and researchers should work with health service planners to ensure that there is funding to support YP moving from paediatric to adult care. 17/02/2019

Recommendation 11. There must be a freely accessible electronic-based platform to host the recommendations, standards, and resources for transitional care. Useful resources and trustworthy information about transition should be readily accessible (e.g. EULAR and PReS websites). These resources are freely available and endorsed by professionals groups and charities. 17/02/2019

Recommendation 12. Increased evidence-based knowledge and practice is needed to improve outcomes for YP with childhood onset RMD. Research is still needed to help improve the care of YP with jRMD, including transition, and on how to measure the success of the process. 17/02/2019

Summary Table Oxford Level of Evidence Recommendations LOE GR MA Young people (YP) with RMD should have access to high quality, coordinated transitional care, delivered through partnership with health care professionals, YP and their families, to address needs on an individual basis. 5 D 9.6 The transition process should start as early as possible; in early adolescence or directly after the diagnosis in adolescent-onset disease 2b B 8.3 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 teams. 9.3 Individual transition processes and progress should be carefully documented in the medical records and planned with YP and their families. 9.2 LOE: level of evidence; GR: grade of recommendation; MA: mean agreement 17/02/2019

Summary Table Oxford Level of Evidence Recommendations LOE GR MA Every rheumatology service and clinical network—paediatric and adult— must have a written, agreed, and regularly updated transition policy. 5 D 8.9 There should be clear written description of the multidisciplinary team (MDT) involved in transitional care, locally and in the clinical network. The MDT should include a designated transition coordinator. 8.7 Transition services must be YP focused, be developmentally appropriate and address the complexity of YP development. 9.4 There must be a transfer document. LOE: level of evidence; GR: grade of recommendation; MA: mean agreement 17/02/2019

Summary Table Oxford Level of Evidence Recommendations LOE GR MA Health care teams involved in transition and adolescent-young adult care must have appropriate training in generic adolescent care and childhood onset RMD. 5 D 9.5 There must be secure funding for dedicated resources to provide uninterrupted clinical care and transition services for YP entering adult care. 9.4 There must be a freely accessible electronic-based platform to host the recommendations, standards, and resources for transitional care. Increased evidence-based knowledge and practice is needed to improve outcomes for YP with childhood onset RMD. 8.5 LOE: level of evidence; GR: grade of recommendation; MA: mean agreement 17/02/2019

Summary of Recommendations Provide high-quality individualized transitional care for YP with RMDs. Begin transition as early as possible. It is necessary: A written transition policy, with clear description of the multidisciplinary team involved in transitional care, including a transition co-ordinator. Establish direct communication between healthcare professionals, YP and their families. Documentation of the transition process and development of a transfer document. Transition services must be YP focused and healthcare teams should be appropriate trained in adolescent care and childhood-onset RMD. Funding for transition services is important to provide uninterrupted care. Increased evidence-based knowledge and practice is needed to improve outcomes. 17/02/2019

Lay summary Overall, the recommendations say that it is important for young people and their families to work with their doctor and their wider healthcare team to minimise the impact of transition, and to get the best possible support and care. If you or someone in your family has a rheumatic disease from childhood, these recommendations will give you tips about what to expect through adolescence and early adulthood. 17/02/2019

Acknowledgements EULAR/PReS working group on recommendations for transitional care management for adolescents and young people with rheumatic diseases Helen E Foster Kirsten Minden Loreto Carmona Daniel Clemente Leticia Leon Janet E McDonagh Sylvia Kamphuis Karin Berggren Philomine van Pelt Carine Wouters Jennifer Waite-Jones Rachel Tattersall Ruth Wyllie Simon R Stones Alberto Martini Tamas Constantin Susanne Schalm Berna Fidanci Burak Erer Erkan Dermikaya Seza Ozen 17/02/2019