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使用世界卫生组织残疾评定量表2.0对重症肌无力相关残疾患者的功能进行评估:一项全国性随访研究。

Assessment of functioning using the WHODAS 2.0 among people with myasthenia gravis-associated disability: a nationwide follow-up study.

作者信息

Hong Jia-Pei, Lee Chih-Hong, Hong Chien Tai, Chan Lung, Chung Chen-Chih, Charoenpong Prangthip, Chiu Hou-Chang, Liou Tsan-Hon

机构信息

Department of Physical Medicine and Rehabilitation, Taipei Medical University Shuang Ho Hospital, Taipei, Taiwan.

Department of Physical Medicine and Rehabilitation, School of Medicine, College of Medicine, Taipei Medical University, Taipei, Taiwan.

出版信息

BMC Public Health. 2025 Jul 2;25(1):2210. doi: 10.1186/s12889-025-23328-5.

Abstract

BACKGROUND

Advancements in treatment have increased the life expectancy of patients with Myasthenia Gravis (MG), yet the understanding of functional changes in these individuals remains limited. In our study, we explored the functional abilities of individuals with MG using the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0).

METHODS

This observational study analyzed data from 286 patients with MG, acquired from the Data Bank of Persons with Disabilities (TDPD) in Taiwan between July 11, 2012, and December 31, 2021. Participants were diagnosed with MG after the acute phase. The functional disability outcome was assessed using the WHODAS 2.0. Due to non-normal distribution of variables, we used the Wilcoxon rank sum and chi-square tests for group comparisons by age. Longitudinal associations between functional changes and demographic characteristics were assessed using generalized estimating equations (GEE), adjusting for age, sex, educational level, and respiratory dysfunction.

RESULTS

The average follow-up period was three years. At the initial evaluation, younger individuals (< 65 years) generally demonstrated less severe disability across most functional domains, with the exception of social participation. Patients with a single disability in a specific function performed better than those with multiple disabilities. The provision of technical aids or other environmental interventions resulted in significant functional improvements across all domains. During follow-up, significant functional improvements were observed, especially among patients residing in institutions, those without respiratory disabilities, and those with reduced mobility at the time of initial assessment. The GEE analysis indicated that younger patients with MG experienced functional changes comparable to older patients. Notably, respiratory disability was identified as a key factor contributing to cognitive decline. Additionally, only 10.5% of patients aged 18-64 were employed at the time of the study.

CONCLUSIONS

Our findings highlight the complexity of disabilities associated with MG, with social participation emerging as a particularly vulnerable domain. Although younger patients initially exhibited better functional performance, their long-term functional changes were comparable to those observed in older patients. Given the impact of functional limitations on employment, future research may focus on return-to-work interventions, as labor market participation plays a crucial role in fostering social engagement for individuals with MG.

摘要

背景

治疗方法的进步提高了重症肌无力(MG)患者的预期寿命,但对这些患者功能变化的了解仍然有限。在我们的研究中,我们使用世界卫生组织残疾评估量表2.0(WHODAS 2.0)探索了MG患者的功能能力。

方法

这项观察性研究分析了2012年7月11日至2021年12月31日期间从台湾残疾人数据库(TDPD)获取的286例MG患者的数据。参与者在急性期后被诊断为MG。使用WHODAS 2.0评估功能残疾结果。由于变量分布不呈正态,我们使用Wilcoxon秩和检验和卡方检验按年龄进行组间比较。使用广义估计方程(GEE)评估功能变化与人口统计学特征之间的纵向关联,并对年龄、性别、教育水平和呼吸功能障碍进行调整。

结果

平均随访期为三年。在初始评估时,较年轻的个体(<65岁)在大多数功能领域的残疾程度通常较轻,但社会参与领域除外。特定功能单一残疾的患者比多重残疾的患者表现更好。提供技术辅助工具或其他环境干预措施导致所有领域的功能有显著改善。在随访期间,观察到功能有显著改善,尤其是在居住在机构中的患者、没有呼吸残疾的患者以及初始评估时行动能力下降的患者中。GEE分析表明,年轻的MG患者经历的功能变化与老年患者相当。值得注意的是,呼吸残疾被确定为导致认知下降 的关键因素。此外,在研究时,18 - 64岁的患者中只有10.5%受雇。

结论

我们的研究结果突出了与MG相关的残疾的复杂性,社会参与是一个特别脆弱的领域。尽管年轻患者最初表现出更好的功能表现,但他们的长期功能变化与老年患者相当。鉴于功能限制对就业的影响,未来的研究可能集中在重返工作岗位的干预措施上,因为劳动力市场参与对促进MG患者的社会参与起着至关重要的作用。

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