Poole Janet L, Anwar Sahar, Mendelson Cindy, Allaire Saralynn
Occupational Therapy Graduate Program, University of New Mexico, Albuquerque, NM, USA.
University of New Mexico Hospital, Albuquerque, NM, USA.
Work. 2016;55(4):923-929. doi: 10.3233/WOR-162448.
Systemic sclerosis (SSc) is an auto-immune connective tissue disease characterized by fibrosis of skin, blood vessels, and internal organs that results in significant disability.
To identify the work barriers faced by people with systemic sclerosis (SSc) in maintaining employment.
Thirty-six people with SSc who were working more than 8 hours per week completed the Work Experience Survey, which contains lists of potential work barriers, including the ability to travel to and from work; get around at work; perform essential job functions, including physical, cognitive, and task-related activities; work with others; and manage work conditions.
Thirty-three participants completed and returned the questionnaires, most of whom were female, and working full time and in professional careers. Principal disease symptoms included fatigue, Raynaud's phenomenon, esophageal involvement, and leg or hand/wrist pain. All participants reported some barriers with a mean of 18 barriers per participant. At least three quarters of participants cited outside temperature (82%), cold temperatures inside the workplace (76%), and household work (76%), as barriers. The next most common barriers were using both hands (64%), arranging and taking part in social activities (64%), being able to provide self-care (61%) and working 8 hours (58%).
Participants reported a wide range of barriers, from cold temperatures, to physical job, fatigue related, and non-workplace demands, in maintaining the worker role. The barriers reflect the disease symptoms they reported. Identifying workplace barriers facilitates the creation of job accommodations or adaptations that will allow people with SSc to continue working.
系统性硬化症（SSc）是一种自身免疫性结缔组织疾病，其特征是皮肤、血管和内脏器官纤维化，可导致严重残疾。
确定系统性硬化症（SSc）患者在维持就业方面面临的工作障碍。
36名每周工作超过8小时的系统性硬化症患者完成了工作经历调查，该调查包含一系列潜在的工作障碍，包括上下班通勤能力、在工作场所走动能力、履行基本工作职责（包括体力、认知和与任务相关的活动）、与他人合作以及管理工作条件。
33名参与者完成并返还了问卷，其中大多数为女性，全职工作且从事专业职业。主要疾病症状包括疲劳、雷诺现象、食管受累以及腿部或手部/腕部疼痛。所有参与者均报告了一些障碍，平均每位参与者有18个障碍。至少四分之三的参与者将外界温度（82%）、工作场所内的低温（76%）和家务劳动（76%）列为障碍。接下来最常见的障碍是双手并用（64%）、安排和参加社交活动（64%）、能够进行自我护理（61%）以及工作8小时（58%）。
参与者报告了在维持工作角色方面存在广泛的障碍，从低温到体力工作、与疲劳相关的以及非工作场所的需求等。这些障碍反映了他们所报告的疾病症状。识别工作场所障碍有助于创建工作调整或适应措施，使系统性硬化症患者能够继续工作。
