患有成人发病型肌性营养不良症1型:一个范围审查
Kristin Allergodt1,2, Pia Dreyer2,3, Ulla Werlauff1
1National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark.
Disability and rehabilitation
|August 30, 2024
概括
患有成人发病的1型肌性缩症 (DM1) 给患者和护理人员带来了重大的生物心理社会挑战. 本综述综合了经验,以提高对受DM1影响的人的理解和支持.
科学领域:
- 神经学 神经学
- 遗传学 是一个遗传学.
- 康复科学 康复科学 康复科学
背景情况:
- 肌性缩症1型 (DM1) 是一种渐进的多系统性疾病.
- 成人发病的DM1严重影响日常生活,生活质量和心理社会福祉.
- 有限的文献综合了成人发病的DM1个体及其支持网络的经历.
研究的目的:
- 系统地审查和综合现有的关于成人发病的DM1.0生活经验的文献.
- 为了捕捉患有DM1的个体,他们的照顾者和医疗保健专业人员的观点.
- 确定与管理成人开始的DM1相关的关键主题和挑战.
主要方法:
- 通过使用Arksey和O'Malley框架,在五个数据库中进行了全面的文献搜索 (2022年10月至11月,更新至2023年12月).
- 纳入标准包括定性,定量和混合方法研究,报告生活在成人开始的DM1的经验.
- 使用国际功能,残疾和健康分类 (ICF) 组件对发现进行了分类.
主要成果:
- 包括1842年中的11项研究,包括5项定量研究,5项定性研究和1项混合方法研究.
- 审查的研究详细介绍了从患者和护理人员的角度生活在成人发病的DM1的各种经验.
- 所有ICF组件均有代表性,其中活动,参与和个人因素是最常见的.
结论:
- 成人发病的DM1是一种复杂的疾病,具有深刻的生物心理社会影响.
- 这种疾病对被诊断为DM1的个人及其照顾者构成重大挑战.
- 需要进一步的研究和综合护理方法来解决成人发病DM1.1的多方面的影响.
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