N. 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.
A. Kardolus, MD, MSc, S. Kamphuis, MD, PhD, Sophia Children's Hospital, Erasmus University Medical Center Rotterdam, Rotterdam, the Netherlands.
J Rheumatol. 2021 Jun;48(6):915-923. doi: 10.3899/jrheum.191004. Epub 2020 Aug 1.
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.
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).
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.
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.
儿童期起病的系统性红斑狼疮（cSLE）成人患者的长期预后数据有限。在此，我们报告了 cSLE 对一大群 cSLE 成年患者的教育、职业和就业的影响。
患者接受了一次单访研究，包括结构化病史和体格检查。检索病历以补充研究就诊期间获得的信息。通过问卷调查评估教育和就业状况。使用 36 项简短健康调查问卷（SF-36）测量健康相关生活质量（HRQOL）。
106 例 cSLE 患者（93%女性，73%白人）完成了就诊和问卷调查，中位病程 20 年。几乎所有患者都表示 cSLE 影响了他们的教育，但完成的教育水平与荷兰普通人群相似。一半的患者因疾病调整了职业选择。尽管如此，仍有 44%完成学业的患者没有从事有薪工作。就业患者中有 61%的人从事兼职工作。有薪就业患者和无薪就业患者的疾病损害发生率相当。由于疾病损害，有 51%的患者被宣布丧失工作能力。无薪就业的患者通常也丧失了工作能力。两者都对 HRQOL 产生负面影响。
尽管患者调整了他们的教育和职业选择，但 cSLE 对学术成就和就业的影响还是很大的。为了优化他们在社区中的参与，需要持续提供支持，不仅要帮助患者找到合适的教育和职业，还要在他们的职业生涯中提供潜在调整的指导。
