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

Abstract

Clinical networks for paediatric and adolescent rheumatology are evolving, and their effect and role in the transition process between paediatric and adult services are unknown. We therefore explored the experiences of those involved to try and understand this further. Health professionals, young people with juvenile idiopathic arthritis and their families were recruited via five national health service paediatric and adolescent rheumatology specialist centres and networks across the UK. Seventy participants took part in focus groups and one-to-one interviews. Data was analysed using coding, memoing and mapping techniques to identify features of transitional services across the sector. Variation and inequities in transitional care exist. Although transition services in networks are evolving, development has lagged behind other areas with network establishment focusing more on access to paediatric rheumatology multidisciplinary teams. Challenges include workforce shortfalls, differences in service priorities, standards and healthcare infrastructures, and managing the legacy of historic encounters. Providing equitable high-quality clinically effective services for transition across the UK has a long way to go. There is a call from within the sector for more protected time, staff and resources to develop transition roles and services, as well as streamlining of local referral pathways between paediatric and adult healthcare services. In addition, there is a need to support professionals in developing their understanding of transitional care in clinical networks, particularly around service design, organisational change and the interpersonal skills required for collaborative working.Key messages• Transitional care in clinical networks requires collaborative working and an effective interface with paediatric and adult rheumatology.• Professional centrism and historic encounters may affect collaborative relationships within clinical networks.• Education programmes need to support the development of interpersonal skills and change management, to facilitate professionals in networks delivering transitional care.

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

“…All six essential elements are included in the recommendations given here, which highlight the need for teams to work effectively together and engagement of different care providers within clinical networks. Addressing the challenges of ‘joined up’ working across paediatric and adult rheumatology and within clinical networks has also been highlighted by others 85. Our recommendations, in agreement with other recent taskforces,80 84 emphasise the importance of identifying key individuals, the integral role of YP and families, written communication, agreed policy, training and clarity of roles within teams.…”

Aporte del uso de herramientas básicas de Telemedicina en la atención de niños y adolescentes con Artritis idiopática juvenil, en el Hospital de Puerto Montt. Chile

“…The reasons for the predominance of the polyarticular form RF (-) are not clear, and although there was German colonization in this region, there is no history of patients with German ancestors in our cohort. On the other hand, it is possible that there may exist sub notification of the oligoarticular form, later diagnoses, preferably consulting the forms with higher joint involvement, a probable hypothesis considering the time between the beginning of symptoms and diagnosis (figure 1B) [18][19][20][21][22][23][24][25][26] . Also noteworthy is the distance from home to the HPM, expressed in kilometers and transport times.…”

Unge revmatikere får hjelp til å takle voksenlivet

“…Studien til Aasland og Østlie (5) viste at 70,6 prosent av pasientene ikke var forberedt på overføringen fra pediatrisk-til voksen avdeling. En annen studie (10) har avdekket at en stor andel av de unge pasientene følte at de ble plassert i voksenavdelingen uten spesiell forberedelse.…”