Nowrouzi-Kia Behdin, Howe Aaron S, Li Anson, Tan Jeremy, Saade-Cleves Natalia, Jules Kevon, Sadek Malak, Bani-Fatemi Ali, Avina-Zubieta Antonio, Fox Mary T, Shaw William, Haaland Derek, Pope Janet, Fortin Paul R, Bingham Kathleen S, Peschken Christine, Reynolds Jennifer, Ivory Catherine, Gladman Dafna D, Urowitz Murray B, Sanchez-Guerrero Jorge, Lim Lily S H, Keeling Stephanie, Katz Patti, Kavkan Mahta, Bonilla Dennisse, Nielsen Wils, Touma Zahi
ReSTORE Lab, Department of Occupational Science and Occupational Therapy, Temerty Faculty of Medicine, University of Toronto, 500 University Avenue, Toronto, ON, M5G 1V7, Canada.
Krembil Research Institute-University Health Network, 60 Leonard Avenue, Toronto, ON, M5T 0S8, Canada.
Arthritis Res Ther. 2025 May 26;27(1):114. doi: 10.1186/s13075-025-03572-1.
Systemic lupus erythematosus (SLE) disease symptoms that can significantly restrict work ability and work participation resulting in reduced mental well-being. This study investigates the significant impact of work participation and disability on the mental wellbeing, health-related quality of life, and disease-related outcomes in individuals with SLE.
With the objective of creating an SLE-related functional profile rooted in work disability (WD) prevention, 46 SLE patients were purposively recruited from Canadian medical centres. Through semi-structured interviews guided by a WD prevention framework, factors associated with WD and lived experiences of SLE-related WD were qualitatively explored. Braun and Clarke's six-stage inductive thematic analysis was used to organize the data.
Most participants experienced some form of work disability across their employment history related to their clinical manifestations of SLE, including hospitalizations, physical limitations, fatigue, and neurocognitive symptoms (e.g. brain fog). Thematic analysis revealed three key themes: (a) the influence of illness experience on work, (b) the stigmatization of illness disclosure, and (c) the availability of workplace resources/accommodations. Participants emphasized the desirability of work with reduced physical and mental demands, increased personal control, and workplace flexibility to prevent WD.
The study underscores the need for a collaborative, multi-component, and multidisciplinary intervention targeting psychosocial and workplace factors to establish a goal-oriented preventative framework, potentially improving WD outcomes in SLE individuals.
系统性红斑狼疮(SLE)的疾病症状会严重限制工作能力和工作参与度,进而导致心理健康状况下降。本研究调查了工作参与度和残疾对SLE患者心理健康、健康相关生活质量以及疾病相关结局的重大影响。
为了创建一个基于工作残疾(WD)预防的SLE相关功能概况,从加拿大医疗中心有目的地招募了46名SLE患者。通过以WD预防框架为指导的半结构化访谈,定性探索了与WD相关的因素以及SLE相关WD的生活经历。采用布劳恩和克拉克的六阶段归纳主题分析法对数据进行整理。
大多数参与者在其就业历史中经历过某种形式的与SLE临床表现相关的工作残疾,包括住院、身体限制、疲劳和神经认知症状(如脑雾)。主题分析揭示了三个关键主题:(a)疾病经历对工作的影响,(b)疾病披露的污名化,以及(c)工作场所资源/便利设施的可用性。参与者强调了从事身心需求较低、个人控制权增加以及工作场所灵活性较高的工作以预防WD的可取性。
该研究强调需要针对心理社会和工作场所因素进行协作、多组成部分和多学科的干预,以建立一个以目标为导向的预防框架,可能改善SLE患者的WD结局。