The coming of age of adolescent rheumatology

Abstract

The goal of planned adolescent health-care transition procedures is to optimize functioning and well-being for all young people, including those who have special health-care needs. In this regard, the transitioning of young people with childhood-onset rheumatic diseases to adult health care is increasingly important, particularly as many of these patients might continue to have active disease or considerable sequelae well into their adult lives. Key components of a successful plan for health-care transition include encouragement of patient self-advocacy, tailoring of the process to each individuals' needs, family adaptation, and readiness and training of relevant health-care providers. Improving outcomes in patients with serious rheumatic diseases presenting in adolescence will be achieved by increasing our understanding of the aetiopathogenesis of these disorders, identifying accurate predictors of the development and/or course of disease and better defining long-term outcomes. In this article, we discuss transitional health-care models, as well as the benefits and challenges of providing transitional care to adolescents with rheumatic diseases. We also highlight the need to ensure that research is integral to transitional care pathways.

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

“…The importance of transitional care in YP with jRMD has been increasingly acknowledged 19 20. There is evidence regarding ‘best practice’ for transitional care, with emphasis on a holistic ‘life course’ approach to care 21–23.…”

Transitional care in clinical networks for young people with juvenile idiopathic arthritis: current situation and challenges

“…Although ‘developmentally appropriate health care’ is ill defined [ 30 ], provision of consistent, coordinated healthcare throughout adolescence and young adulthood is a key issue which impacts on a young person’s engagement with healthcare services and their biomedical outcomes [ 15 , 16 ]. Appropriate care for adolescents and young adults is potentially different from paediatric as well as adult care [ 18 – 20 , 31 ], and there is an expectation that the healthcare setting is adapted to their needs [ 32 ]. A network which is ‘unconstrained by existing and professional and organisational boundaries’ [ 4 ] may facilitate this developmentally appropriate approach.…”

“…The provision of consistent, coordinated healthcare may impact on young people’s engagement with healthcare services and biomedical outcomes [ 15 – 17 ]. There is no single gold standard model for transitional care [ 10 , 18 – 20 ]. However, there is an emerging evidence-base of important core principles, such as key issues that are central to young people’s positive experience of care [ 21 ].…”

Person-focused care for young people with rheumatic and musculoskeletal diseases: young rheumatologists' and EULAR Young PARE perspectives

“… 20 We observe with delight that this process of transition is becoming increasingly recognised as an important area for clinicians, researchers and policy makers to address. 21 …”