Are we there yet? An update on transitional care in rheumatology

Abstract

Significant progress has been made in the understanding of transitional care in rheumatology over the last few decades, yet universal implementation has not been realised and unmet needs continue to be reported. Possible explanations for this include lack of evidence as to which model is most effective; lack of attention to the multiple dimensions, stakeholders and systems involved in health transitions; and lack of consideration of the developmental appropriateness of transition interventions and the services/organisations/systems where such interventions are delivered.Successful transition has major implications to both the young people with juvenile-onset rheumatic disease and their families. Future research in this area will need to reflect both the multidimensional (biopsychosocial) and the multisystemic (multiple systems and stakeholders across personal/social/family support networks and health/social care/education systems). Only then will we be able to determine which aspects of transition readiness and service components influence which dimension. It is therefore imperative we continue to research and develop this area, involving both paediatric and adult rheumatology clinicians and researchers, remembering to look beyond both the condition and our discipline. Neither should we forget to tap into the exciting potential associated with digital technology to ensure further advances in transitional care are brought about in and beyond rheumatology.

Transition Readiness in Adolescents With Juvenile Idiopathic Arthritis and Childhood‐Onset Systemic Lupus Erythematosus

“…Demographic data, disease duration, and comorbid nonrheumatic conditions were collected from patients’ charts. An active joint count and a physician global assessment, a reliable, validated outcome used to describe disease activity in these patients (11), were also collected on each patient.…”

“…Factors key to optimizing transition in patients with chronic health conditions include starting transition programs in early adolescence, co‐managing/coordinating care between pediatric and adult teams, sharing medical records, and providing education on self‐management and advocacy (11,12). Previous literature indicates that more than 50% of adolescents aged 12‐18 years with a variety of chronic health conditions lack basic skills to manage their own health (13).…”

Stuck in transit: A qualitative study of the transitional care needs of young people with epilepsy and juvenile idiopathic arthritis

“…A strength of this study was its support of the need for multi-systemic and multi-perspective research (McDonagh and Farre, 2018), by bringing together a range of perspectives across different organizational systems: YP and parents before and following transition, child and adult services, and commissioning organisations. Our patient sample age range was broad in recognition of transition as an extended process encompassing different developmental stages (Rapley et al, 2019).…”

Transitional care of adolescents with Multiple Osteochondromas: a convergent mixed-method study ‘Patients’, parents’ and healthcare providers’ perspectives on the transfer process’

“…In the transitional literature, an extensive amount of studies reported on specific patient groups such as ADs with rheumatic musculoskeletal disease (RMD) or childhood cancer survivors. [19][20][21] Although patients with MO might have certain disease-related problems in common with these group of patients, there are also specific MO-related problems and complications that could affect the study outcome. Important factors in this are the lifelong risk of malignant degeneration in MO, the multiple surgical procedures that are often necessary throughout life and the fact that in most cases, one parent has the same disease.…”