TY - JOUR T1 - Effects of childhood-onset SLE on academic achievements and employment in adult life JF - The Journal of Rheumatology JO - J Rheumatol DO - 10.3899/jrheum.191004 SP - jrheum.191004 AU - Noortje Groot AU - Anne Kardolus AU - Marc Bijl AU - Radboud Dolhain AU - Onno Teng AU - Els Zirkzee AU - Karina de Leeuw AU - Ruth Fritsch-Stork AU - Lex Burdorf AU - Irene Bultink AU - Sylvia Kamphuis Y1 - 2020/08/01 UR - http://www.jrheum.org/content/early/2020/07/27/jrheum.191004.abstract N2 - Objective Long-term outcome data in adults with childhood-onset SLE are limited. Here, we report the effects of cSLE on education, vocation and employment in a large cohort of adults with cSLE. Methods Patients were seen for a single study visit containing a structured history and physical examination. Medical records were retrieved to supplement information obtained during the study visit. Education and employment status were assessed by questionnaires. Health-related quality of life (HRQOL) was measured with the SF36. Results 106 cSLE patients (93% female, 73% white), with a median disease duration of 20 years, completed the visit and questionnaires. Almost all patients stated that cSLE had influenced their education, but level of completed education was similar to the general Dutch population. Half of the patients had adjusted their vocational choice due to the disease. Still, 44% of patients who had finished education did not have a paid job. Of the employed patients, 61% worked part-time. Disease damage was equally prevalent in patients with and without paid employment. A high percentage of patients (51%) were declared work disabled, which was related to damage. Patients who did not have paid employment were often work disabled. Both had a negative influence on HRQOL. Conclusion The effect of cSLE on academic achievements and employment is substantial, despite adjusting educational and vocational choices to the disease. Ongoing support, not only to help patients find suitable education and vocation, but also to offer guidance regarding potential adjustments during their career, is necessary to optimise participation in the community. ER -