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• W2953013313 abstract "Childhood-onset SLE (cSLE) accounts for approximately 20% of all SLE cases and is often regarded as one of the most complex rheumatic diseases. With the increase of five-year survival rate of cSLE patients to over 95%, there is a growing number of adolescents and young adults (AYA) transferring from pediatric to adult care. Even in the best-case scenario, there is often considerable challenges regarding this transition. Hence, it is not surprising that morbidity, mortality and disease activity in cSLE, as well as in many other chronic illnesses and conditions, worsen during or just after the transition. The reasons for these deteriorations are numerous, with most prominent arising from the nature of the disease and changes during the tumultuous period of adolescence, but also the differences between pediatric and adult clinical and healthcare settings. Besides, the AYA patients with chronic conditions often feel they are not well prepared for the transition to adult care, while the adult rheumatologists commonly report concerns about assuming the responsibility of patients with the pediatric-onset disease. Some of these concerns are probably motivated by increased vulnerability of AYA patients with cSLE, who are more likely than their adult counterparts to develop lupus nephritis and neuropsychiatric manifestations, as well as other organs involvement and atherosclerosis. Moreover, due to the severity of the disease, patients with cSLE are treated more aggressively, accumulating more drug-related toxicity than patients with adult-onset SLE, which results in significant SLE-related damage and complications such as osteoporosis during the childhood. On the other hand, there is decreased medication adherence in AYA, further complicated by the neurocognitive and memory impact of the disease, as well as high rates of comorbid depression and anxiety. Some additional problems in cSLE patients at transition age are sexuality, fertility, and pregnancy. All this makes patients with cSLE require specialized and multidisciplinary care at the transition, that is capable of addressing medical, psychosocial, educational and vocational needs. This presentation will be part of the comprehensive session discussing distinct features of the SLE during the different phases of life. It will emphasize specific challenges of the transition from pediatric to adult care, with the use of a compelling clinical case as an example. References: [1] Sadun RE,Schanberg LE. Transition and transfer of the patient with paediatric-onset lupus: a practical approach for paediatric and adult rheumatology practices. Lupus Science & Medicine 2018;5:e000282. [2] Foster HE, Minden K, Clemente D, et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis 2017;76:639–46. [3] Falcini F, Nacci F. Systemic lupus erythematosus in the young: the importance of a transition clinic. Lupus 2007;16:613–7. Disclosure of Interests: None declared" @default.
• W2953013313 created "2019-06-27" @default.
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• W2953013313 date "2019-06-01" @default.
• W2953013313 modified "2023-09-23" @default.
• W2953013313 title "SP0076 CASE PRESENTER: TRANSITION OF NEUROLUPUS PHASE INTO ADULTHOOD" @default.
• W2953013313 doi "https://doi.org/10.1136/annrheumdis-2019-eular.8524" @default.
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