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

Lupus Science & Medicine
Rebecca E Sadun, Laura E Schanberg

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 ...Continue Reading

Citations

Nov 7, 2019·Clinical Rheumatology·Sandra V NavarraMa Theresa M Collante
Nov 24, 2019·Rheumatic Diseases Clinics of North America·Rebecca E Sadun
Mar 7, 2021·Journal of Clinical Medicine·Kai Liang TehThaschawee Arkachaisri
May 9, 2021·Lupus Science & Medicine·Rachel L RandellUNKNOWN with the CARRA Registry investigators

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Methods Mentioned

BETA
contraception

Software Mentioned

WELCOME
TRAQ
Got Transition
Mango
TRANSFERS

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