Effects of childhood-onset systemic lupus erythematosus on academic achievements and employment in adult life

Noortje Groot, Anne Kardolus, Marc Bijl, Radboud J.E.M. Dolhain, Y. K.Onno Teng, Els Zirkzee, Karina De Leeuw, Ruth Fritsch-Stork, Alex Burdorf, Irene E. Bultink, Sylvia Kamphuis*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

5 Citations (Scopus)

Abstract

Objective. Long-term outcome data in adults with childhood-onset systemic lupus erythematosus (cSLE) 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 comprising 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 36-Item Short Form Health Survey (SF-36). Results. One hundred six patients with cSLE (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 the 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, due to disease damage. Patients who did not have paid employment were often work disabled. Both had a negative effect on HRQOL. Conclusion. The effect of cSLE on academic achievements and employment is substantial, despite patients adjusting their educational and vocational choices. To optimize participation in the community, ongoing support is necessary, not only to help patients find suitable education and vocations but also to offer guidance regarding potential adjustments during their career.

Original languageEnglish
Pages (from-to)915-923
Number of pages9
JournalJournal of Rheumatology
Volume48
Issue number6
DOIs
Publication statusPublished - 1 Jun 2021

Bibliographical note

Funding Information:
This study was supported by the Dutch Arthritis Foundation and the National Association for LUPUS, APS, Scleroderma and MCTD (NVLE). No financial support or other benefits from commercial sources were received for the work reported on in the manuscript. 1N. Groot, MD, PhD, Sophia Children’s Hospital, Erasmus University Medical Center Rotterdam, Rotterdam, and Department of Pediatric Immunology, Wilhemina Children’s Hospital, University Medical Center Utrecht, Utrecht, the Netherlands; 2A. Kardolus, MD, MSc, S. Kamphuis, MD, PhD, Sophia Children’s Hospital, Erasmus University Medical Center Rotterdam, Rotterdam, the Netherlands; 3M. Bijl, MD, PhD, Department of Internal Medicine and Rheumatology, Martini Hospital, Groningen, the Netherlands; 4R.J.E.M. Dolhain, MD, PhD, Department of Rheumatology, Erasmus University Medical Center, Rotterdam, the Netherlands; 5Y.K.O. Teng, MD, PhD, Department of Nephrology, Leiden University Medical Center, Leiden, the Netherlands; 6E. Zirkzee, MD, PhD, Department of Rheumatology, Maasstad Hospital, Rotterdam, the Netherlands; 7K. de Leeuw, MD, PhD, Department of Rheumatology and Clinical Immunology, University Medical Center Groningen, Groningen, the Netherlands; 8R. Fritsch-Stork, MD, PhD, Professor, Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht, the Netherlands, and 1st Medical Department & Ludwig Boltzmann Institute of Osteology at the Hanusch Hospital of WGKK and AUVA Trauma Center, Meidling, Hanusch Hospital, and Sigmund Freud University, Vienna, Austria; 9A. Burdorf, PhD, Professor, Department of Public Health, Erasmus University Medical Center Rotterdam, Rotterdam, the Netherlands; 10I.E. Bultink, MD, PhD, Amsterdam Rheumatology and Immunology Center, Location VUmc, Amsterdam, the Netherlands. None of the authors report any conflicts of interest regarding this study. Address correspondence to Dr. S. Kamphuis, Erasmus University Medical Center, Sophia Children’s Hospital, SP-2460, PO Box 2060, 3000 CB Rotterdam, the Netherlands. Email: s.kamphuis@erasmusmc.nl. Accepted for publication July 13, 2020.

Publisher Copyright:
Copyright © 2021. All rights reserved.

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