Ellenberger David, Parciak Tina, Brola Waldemar, Hillert Jan, Middleton Rod, Stahmann Alexander, Thalheim Christoph, Flachenecker Peter
University Medical Center, Georg-August-Universität Göttingen, Germany.
Collegium Medicum, Jan Kochanowski University, Kielce, Poland Kielce, Poland.
Mult Scler J Exp Transl Clin. 2022 Apr 27;8(2):20552173221090653. doi: 10.1177/20552173221090653. eCollection 2022 Apr-Jun.
People with Multiple Sclerosis (PwMS) suffer from an increased risk of unemployment during the course of the disease. In recent years progress has been made in increasing the time until patients have to leave the workforce permanently. Such a retirement is often associated with MS but the driving factors including disability progression, support measures at the workplace, and societal aspects are not yet fully understood.
We consolidated data from four European MS databases from Germany, Poland, Sweden, and the United Kingdom, which were able to provide data on working status, disability progression and quality of life in accordance with the data harmonization framework of the EUReMS (European Registry in Multiple Sclerosis) project.
Factors strongly associated with unemployment are disability progression, low quality of life and being close to the statutory retirement age. Overall, highest employment rate (77%) and lowest effects of gender and disease duration were found in Sweden.
We found remarkable differences between the European registers and the countries studied, which may indicate inequalities at European level. Furthermore, our findings suggest that it is feasible and useful to combine data from different MS registers in Europe, albeit the data structures are heterogeneous.
多发性硬化症患者（PwMS）在疾病过程中面临更高的失业风险。近年来，在延长患者不得不永久离开劳动力队伍的时间方面取得了进展。这种退休通常与多发性硬化症有关，但包括残疾进展、工作场所的支持措施和社会因素在内的驱动因素尚未完全明了。
我们整合了来自德国、波兰、瑞典和英国四个欧洲多发性硬化症数据库的数据，这些数据库能够根据欧盟多发性硬化症登记处（EUReMS）项目的数据协调框架提供有关工作状态、残疾进展和生活质量的数据。
与失业密切相关的因素是残疾进展、生活质量低下以及接近法定退休年龄。总体而言，瑞典的就业率最高（77%），性别和病程的影响最小。
我们发现欧洲登记处和所研究国家之间存在显著差异，这可能表明欧洲层面存在不平等现象。此外，我们的研究结果表明，尽管数据结构各异，但将欧洲不同多发性硬化症登记处的数据结合起来是可行且有用的。
