Effects of Childhood-onset Systemic Lupus Erythematosus on Academic Achievements and Employment in Adult Life

Noortje Groot, Anne Kardolus, Marc Bijl, Radboud Dolhain, Onno Teng, Els Zirkzee, Karina de Leeuw, Ruth Fritsch-Stork, Lex Burdorf, Irene Bultink, Sylvia Kamphuis*

*Bijbehorende auteur voor dit werk

    OnderzoeksoutputAcademicpeer review

    Samenvatting

    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. I Iealth-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.

    Originele taal-2English
    Pagina's (van-tot)915-923
    Aantal pagina's9
    TijdschriftThe Journal of Rheumatology
    Volume48
    Nummer van het tijdschrift4
    Vroegere onlinedatum1-aug-2020
    DOI's
    StatusPublished - 1-jun-2021

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