日本的杜琴和贝克尔肌肉发育不良症护理人员负担:一项临床观察研究
Masatoshi Ishizaki1, Michio Kobayashi2, Hiroya Hashimoto3
1Department of Neurology, National Hospital Organization Kumamoto Saishun Medical Center, Japan.
Internal medicine (Tokyo, Japan)
|June 21, 2023
概括
照顾杜恩/贝克尔肌肉衰竭患者影响照顾者,其中许多人是肌肉或心脏问题的携带者. 定期的健康检查对于这些携带者来说至关重要,以有效地管理他们的健康.
科学领域:
- 医学遗传学 医学遗传学
- 心脏病学 心脏病学
- 神经学 神经学
背景情况:
- 发育不良症携带者可能会表现出骨肌肉衰弱和心肌病.
- 对于杜琴/贝克尔肌肉缩症 (DMD/BMD) 患者的护理人员的健康管理至关重要,他们也是携带者,但研究不足.
研究的目的:
- 调查DMD/BMD患者的护理人员的健康状况,护理负担和生活质量,特别关注携带者.
主要方法:
- 一项横截面研究调查了五家医院的36名主要护理人员.
- 收集的数据包括日常生活,医疗状况,遗传检测,身体评估,护理负担 (扎里特护理人员负担采访) 和生活质量 (简单表格36).
主要成果:
- 超过一半 (52.8%) 的护理人员被诊断为携带者,54.3%报告了肌肉或心脏症状,75%的肌酸激酶水平升高.
- 护理人员的平均Zarit护理人员负担面试得分为20.9±13.1,护理人员的负担明显更高.
- 与健康相关的生活质量得分在身体功能,角色限制,身体疼痛和社会功能方面低于日本标准.
结论:
- 很大一部分DMD/BMD患者的护理人员,特别是携带者,经历肌肉/心脏症状和相当大的护理负担.
- 定期的健康检查和量身定制的健康管理对于载体护理人员,特别是女性来说,对于满足他们特定的健康需求至关重要.
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