Transition and transfer of the patient with paediatric-onset lupus: a practical approach for paediatric and adult rheumatology practices

Abstract

The prevalence of paediatric-onset SLE (pSLE) is estimated at 1million people worldwide and accounts for a significant proportion of SLE morbidity, mortality and cost. Patients with pSLE are especially vulnerable during and immediately following transfer from paediatric to adult rheumatology care, when substantial delays in care and increased disease activity are common. Transition is the process through which adolescents and young adults (AYA) develop the skills needed to succeed in the adult healthcare environment, a process that typically takes several years and may span a patient’s time in paediatric and adult clinics. Recommendations for improving transition and transfer for AYA with pSLE include setting expectations of the AYA patient and family concerning transition and transfer, developing AYA’s self-management skills, preparing an individualised transition plan that identifies a date for transfer, transferring at a time of medical and social stability, coordinating communication between the paediatric and adult rheumatologists (inclusive of both a medical summary and key social factors), and identifying a transition coordinator as a point person for care transfer and to monitor the AYA’s arrival and retention in adult rheumatology care. Of paramount importance is empowering the adult rheumatologist with skills that enhance rapport with AYA patients, engage AYA patients and families in adult care models, promote adherence and encourage ongoing development of self-management skills.

Patient experiences and strategies for coping with SLE: A qualitative study

“…11 Accordingly, guidelines for the transition of patients with cSLE call for a focus on clear communication to help adult rheumatologists engage effectively with their new patients, as well as regular bi-directional communication between the adult and pediatric rheumatologists. 13 Our study suggests that patients recognize the centrality of the patient–provider relationship in their care, and that this could be a key component of interventions to improve transition between providers and medication adherence.…”

Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study

“…Training clinicians involved in the care of patients transitioning to adult rheumatology services is needed to ensure that their priorities and needs are met. 3 This reflects findings from a Delphi study, conducted to develop a set of minimum training requirements for adult rheumatologists, which identified high priority areas for rapport building: training in issues unique to transition and adolescence, and relevant referral services that can be readily accessed by patients. 44 45 Suggestions for caring for patients with rheumatological conditions undergoing transition are outlined in box 1 , and are organised sequentially by stages of transfer as to reflect the continuum of phases in the Bridges Transitions Framework.…”

Disease activity and health-care utilization among young adults with childhood-onset lupus transitioning to adult care: data from the Pediatric Lupus Outcomes Study

“…We know that there are many challenges inherent in the transition process—feeling unprepared, finding new providers, establishing health insurance independently from parents, and becoming more self-reliant in care. 19–21 Our post-transfer cohort did report increased difficulties with obtaining insurance, were less likely to have seen a rheumatologist in the past year, and took significantly fewer medications than our pre-transfer group. Difficulties with transfer were reported in nine (23%) post-transfer participants; four of these participants felt these difficulties directly contributed to SLE flare.…”