病性炎症性肌肉病的护理人员负担
Parker Brady1, Roberto Sergio Hernandez2, Amber Salter2
1Department of Neurology, University of Texas Southwestern Medical Center, Dallas, TX, USA. parkerdavidbrady@gmail.com.
概括
照顾者负担 (CB) 影响了75%以上的照顾患有异常性炎症性肌肉病 (IIM) 患者的人. 自诊断以来的时间和患者残疾等因素增加了CB,而护理人员的年龄可能会降低CB.
科学领域:
- 类风湿病学 类风湿病学
- 患者护理 患者护理
- 心理社会健康 心理健康
背景情况:
- 异形性炎症性肌肉病变 (IIM) 是一种罕见的自身免疫性疾病,需要大量的患者护理.
- 护理人员负担 (CB) 是慢性疾病管理中一个公认的挑战.
- 了解IIM中的CB对于开发有针对性的支持策略至关重要.
研究的目的:
- 确定护理人员负担 (CB) 在照顾具有异常性炎症性肌肉病症 (IIM) 患者的个体中的患病率.
主要方法:
- 在2022年5月份,向肌肉炎患者的护理人员分发了一项匿名的全球在线调查.
- 扎里特负担采访被用来衡量护理人员的负担.
- 收集了护理人员和患者的人口,财务和保险数据.
主要成果:
- 观察到护理人员负担的高患病率,75.8%的护理人员报告至少轻度至中度CB.
- 护理人员负担与诊断后的较长时间,较高的患者残疾水平和经济困难积极相关.
- 护理人员的年龄与CB有负面关联,IIM亚型和CB之间没有发现关联.
结论:
- 护理人员负担是一个广泛的问题,影响那些照顾所有类型IIM患者的人.
- 研究结果表明,未来研究该群体中对CB的特定贡献者的领域.
- 临床医生应该意识到和解决护理人员的需求,特别是那些长期患者,更高残疾,老年护理人员,以及那些面临财务挑战的人.
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