Ref Number = ASPR0051
Defining Health Care in Childhood Lupus
Dr. Wistiani, SpA(K), MSi Med
Department of Child Health, Dr. Kariadi Hospital, University of Diponegoro, 
Semarang, Indonesia
E-mail: wistiani@yahoo.com
Systemic Lupus Erythematosus (SLE) is an autoimmune disease characterized by episodes of flares and remissions with heterogeneous clinical manifestations from mucocutaneous to severe, life-threatening illness. The incidence of females are higher compare to male, with ratio ranging from 4,5-5:1 in children; and the average onset is around 12 years old (childhood-onset; cSLE) which mostly occurs at the beginning of puberty.1  Childhood-onset lupus tends to give poorer prognosis compares to adult-onset, involving renal, central nervous system or heart.2,3  Renal involvement will progress to lupus nephritis in the next 2 years after diagnosis. Many approaches had been done but morbidity and mortality remain a big concern which lead the requirement of comprehensive specialized medical care.  The five-year survival rate is now increasing to almost 95% resulting in an exciting transition from childhood to adulthood care; the process itself is challenging based on studies which shows that delays in care and risk of increased disease activity are common.4,5
The objective of childhood lupus care is to control and prevent events of ?flare-up?, prevent irreversible organs damage and side effects of immune suppressive medications while maintaining the best suitable care of growth and development of the patients.6  Childhood-onset lupus pose a serious negative impact on psychosocial and physical development such as depression following physical changes due to the disease itself or impact of medication, pose the professionals of big challenges.  To support optimum growth, nutrition support and healthy life style also need to be addressed to the patients and family.
The other issue need to take into consideration is the coverage of national health insurance (namely BPJS) in terms of the specialized medications that can only be accessed from central of referral hospital, and medication safety on the impact of chronic drugs exposure (immune suppressive, disease-modifying anti rheumatic drugs, drugs for secondary measures such as anti-hypertensive, or antipyretic and others) to organ system.  
The importance of comprehensive care is needed in a multidisciplinary setting hospital, featuring pediatric rheumatologists, nephrologists, endocrinologists or others sub-specialistic division  and ?non-medical? division such as psychosocial to promotes the optimum lupus care.  This approach not only directed to the patient but also involving the parents or family as a whole.  As for Working Group Coordination (UKK) involvement need to have an agreement on health coverage with national health insurance to provide preventive care of cSLE such as vaccination, supportive laboratory measurement on plasma level of steroid and others.  As for closure, peer group of patients and families with lupus is a good idea to support the optimum care of childhood lupus. 
1. Klein-Gitelman M, Lane JC.  Systemic Lupus Erythematosus.  In:  Petty RE, Laxer RM, Lindsley CB, Wedderburn LR, editors.  Textbook of Pediatric Rheumatology.  7th ed.  China:  Elsevier, Inc;2016. p. 285-6.
2. Hersh AO, von Scheven E, Yazdany J, Panopalis P, Trupin L, Julian L, et al.  Differences in Long-Term Disease Activity and Treatment of Adult Patients with Childhood-and Adult-Onset Systemic Lupus Erythematosus.  Arthritis Rheum. 2009?15;61(1):13-20
3. Papadimitraki ED, Isenberg DA.  Childhood- and adult-onset lupus:  an update of similarities and differences.  Expert Clin Immunol. 2009;5(4): 391-403
4. Felsenstein S, O Reiff A, Ramanathan A.  Transition of Care and Health-Related Outcomes in Pediatric-Onset Systemic Lupus Erythematosus.  Arthritis Care & Research 2015;67(11):1521-8
5. Costagliola G, Mosca M, Migliorini P, Consolini R.  Pediatric Systemic Lupus Erythematosus:  Learning from Longer Follow Up to Adulthood.  Available at:  https://doi.org/10.3389/fped.2018.00144
6. Bertsias G, Cervera R, Boumpas DT.  Systemic Lupus Erythematosus:  Pathogenesis and Clinical Features.  Available at:  https://www.eular.org/myuploaddata/files/sample%20chapter20_mod%2017.pdf 
Disclaimer: The Views and opinions expressed in the articles are of the authors and not of the journal.
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