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Long\u2010term outcome data are limited. This study was undertaken to identify clinical characteristics and health\u2010related quality of life (\n HRQ<\/jats:styled-content>\n oL) of adults with childhood\u2010onset\n SLE<\/jats:styled-content>\n .\n <\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n \n Patients participated in a single study visit comprising a structured history and physical examination. Disease activity (scored using the\n SLE<\/jats:styled-content>\n Disease Activity Index 2000 [\n SLEDAI<\/jats:styled-content>\n \u20102K]), damage (scored using the Systemic Lupus International Collaborating Clinics\/American College of Rheumatology Damage Index [\n SDI<\/jats:styled-content>\n ]), and\n HRQ<\/jats:styled-content>\n oL (scored using the Short Form 36 Health Survey) were assessed. Medical records were reviewed.\n <\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n \n In total, 111 childhood\u2010onset\n SLE<\/jats:styled-content>\n patients were included; the median disease duration was 20 years, 91% of patients were female, and 72% were white. Disease activity was low (median\n SLEDAI<\/jats:styled-content>\n \u20102K score 4), and 71% of patients received prednisone, hydroxychloroquine (\n HCQ<\/jats:styled-content>\n ), and\/or other disease\u2010modifying antirheumatic drugs. The vast majority of new childhood\u2010onset\n SLE<\/jats:styled-content>\n \u2013related manifestations developed within 2 years of diagnosis. Damage such as myocardial infarctions began occurring after 5 years. Most patients (62%) experienced damage, predominantly in the musculoskeletal, neuropsychiatric, and renal systems. Cerebrovascular accidents, renal transplants, replacement arthroplasties, and myocardial infarctions typically occurred at a young age (median age 20 years, 24 years, 34 years, and 39 years, respectively). Multivariate logistic regression analysis showed that damage accrual was associated with disease duration (odds ratio [\n OR<\/jats:styled-content>\n ] 1.15,\n P<\/jats:italic>\n < 0.001), antiphospholipid antibody positivity (\n OR<\/jats:styled-content>\n 3.56,\n P<\/jats:italic>\n = 0.026), and hypertension (\n OR<\/jats:styled-content>\n 3.21,\n P<\/jats:italic>\n = 0.043). Current\n HCQ<\/jats:styled-content>\n monotherapy was associated with an\n SDI<\/jats:styled-content>\n score of 0 (\n OR<\/jats:styled-content>\n 0.16,\n P<\/jats:italic>\n = 0.009). In this cohort,\n HRQ<\/jats:styled-content>\n oL was impaired compared to the overall Dutch population. The presence of damage reduced\n HRQ<\/jats:styled-content>\n oL scores in 1 domain. High disease activity (\n SLEDAI<\/jats:styled-content>\n \u20102K score \u22658) and changes in physical appearance strongly reduced\n HRQ<\/jats:styled-content>\n oL scores (in 4 of 8 domains and 7 of 8 domains, respectively).\n <\/jats:p>\n <\/jats:sec>\n \n Conclusion<\/jats:title>\n \n The majority of adults with childhood\u2010onset\n SLE<\/jats:styled-content>\n in this large cohort developed significant damage at a young age and had impaired\n HRQ<\/jats:styled-content>\n oL without achieving drug\u2010free remission, illustrating the substantial impact of childhood\u2010onset\n SLE<\/jats:styled-content>\n on future life.\n <\/jats:p>\n <\/jats:sec>","DOI":"10.1002\/art.40697","type":"journal-article","created":{"date-parts":[[2018,8,28]],"date-time":"2018-08-28T07:45:47Z","timestamp":1535442347000},"page":"290-301","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":116,"title":["Long\u2010Term Clinical Outcomes in a Cohort of Adults With Childhood\u2010Onset Systemic Lupus Erythematosus"],"prefix":"10.1002","volume":"71","author":[{"given":"N.","family":"Groot","sequence":"first","affiliation":[{"name":"Sophia Children\u2019s Hospital Erasmus University Medical Center, Rotterdam, The Netherlands, and Wilhelmina Children\u2019s Hospital University Medical Center Utrecht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"D.","family":"Shaikhani","sequence":"additional","affiliation":[{"name":"Sophia Children\u2019s Hospital Erasmus University Medical Center Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Y. K. O.","family":"Teng","sequence":"additional","affiliation":[{"name":"Leiden University Medical Center Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"K.","family":"de Leeuw","sequence":"additional","affiliation":[{"name":"University Medical Center Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Bijl","sequence":"additional","affiliation":[{"name":"Martini Hospital Groningen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"R. J. E. M.","family":"Dolhain","sequence":"additional","affiliation":[{"name":"Erasmus University Medical Center Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"E.","family":"Zirkzee","sequence":"additional","affiliation":[{"name":"Maasstad Hospital Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"R.","family":"Fritsch\u2010Stork","sequence":"additional","affiliation":[{"name":"University Medical Center, Utrecht, The Netherlands, Hanusch Hospital of WGKK and AUVA Trauma Center, Vienna, Austria, and Sigmund Freud University Vienna Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5441-3420","authenticated-orcid":false,"given":"I. E. 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