Effects of Childhood-Onset SLE on Academic Achievements and Employment in Adult Life

Noortje Groot¹, Marc Bijl², Radboud J. E. M. Dolhain³, Els J. Zirkzee⁴, Ruth D.E. Fritsch-Stork⁵, Y.K. Onno Teng⁶, Karina de Leeuw⁷, Irene E.M. Bultink⁸ and Sylvia S.M. Kamphuis⁹, ¹Paediatric Rheumatology, Erasmus Medical Centre - Sophia Children's Hospital, Rotterdam, Netherlands, ²Internal Medicine and Rheumatology, Martini Hospital, Groningen, Netherlands, ³Rheumatology, Erasmus University Medical Center, Rotterdam, Netherlands, ⁴Department of Rheumatology, Maasstad Hospital, Rotterdam, Netherlands, ⁵Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht, Netherlands, ⁶Department of Nephrology, Leiden University Medical Center, Leiden, the Netherlands, Leiden, Netherlands, ⁷Rheumatology and Clinical Immunology, University Medical Center Groningen, Groningen, Netherlands, ⁸Rheumatology, Amsterdam Rheumatology and immunology Center | VU University Medical Center, Amsterdam, Netherlands, Amsterdam, Netherlands, ⁹Pediatric Rheumatology, Sophia Children's Hospital – Erasmus University Medical Center, Rotterdam, Netherlands

Meeting: 2018 ACR/ARHP Annual Meeting

Keywords: Clinical research, Education, patient, patient outcomes and work, SLE

Session Information

Date: Monday, October 22, 2018

Title: Patient Outcomes, Preferences, and Attitudes Poster I: Patient-Reported Outcomes

Session Type: ACR Poster Session B

Session Time: 9:00AM-11:00AM

Background/Purpose: To investigate the effects of cSLE on education, vocation and employment in a large cohort of adults with cSLE.

Methods: Patients were seen by the CHILL-NL (CHILdhood Lupus in the NetherLands) study team for a single study visit containing a structured history and physical examination. Medical records were retrieved to supplement the information obtained during the study visit. Education and employment status were assessed by structured and/or validated questionnaires. Health-related quality of life (HRQOL) was measured with the SF36.

Results: 106 cSLE patients (93% female, 73% white) were included with median disease duration of 20 years. Almost all patents stated that the disease had influenced their education but level of completed education was higher than the general Dutch population. Half of patients had adjusted their vocational choice due to the disease but still 44% of patients who had finished education did not have a paid job. Of the employed patients, the majority (61%) worked part-time. Disease damage was more prevalent in the patients without paid employment. A high percentage of patients (51%) were declared work disabled and this was related to damage, specifically neuropsychiatric damage. Not having paid employment and work disability were closely related and both had a clear 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.

Disclosure: N. Groot, None; M. Bijl, None; R. J. E. M. Dolhain, None; E. J. Zirkzee, None; R. D. E. Fritsch-Stork, None; Y. K. O. Teng, None; K. de Leeuw, None; I. E. M. Bultink, None; S. S. M. Kamphuis, None.

To cite this abstract in AMA style:

Groot N, Bijl M, Dolhain RJEM, Zirkzee EJ, Fritsch-Stork RDE, Teng YKO, de Leeuw K, Bultink IEM, Kamphuis SSM. Effects of Childhood-Onset SLE on Academic Achievements and Employment in Adult Life [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 9). https://acrabstracts.org/abstract/effects-of-childhood-onset-sle-on-academic-achievements-and-employment-in-adult-life/. Accessed .

« Back to 2018 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/effects-of-childhood-onset-sle-on-academic-achievements-and-employment-in-adult-life/