患有腺髓神经病的男性的疾病和死亡负担:一项回顾性队列研究
Joshua L Bonkowsky1,2, Bridget Healey3,4, Naomi C Sacks3,5
1Primary Children's Hospital, Intermountain Healthcare, Salt Lake City, UT, USA.
Orphanet journal of rare diseases
|July 17, 2024
概括
腺髓神经病 (AMN) 显著增加了男性的医疗保健使用和并发症. 这种神经退行性疾病导致较高的死亡率和较年轻的死亡年龄.
科学领域:
- 神经学 神经学
- 遗传学 遗传学 是一个
- 公共卫生 公共卫生
背景情况:
- 腺髓神经病 (AMN) 是一种神经退行性疾病,与X相关的腺核缩症 (ALD) 有关.
- AMN会导致渐进的肌肉神经病变,导致性帕帕雷西斯,感觉性无氧,以及肠/膀功能障碍.
- 这项研究重点关注在美国被诊断患有AMN的成年男性.
研究的目的:
- 描述AMN的成年男性的死亡模式.
- 评估该人口中疾病和医疗保健资源利用的总体负担.
- 使用管理医疗保健数据库,将AMN患者与匹配的对照进行比较.
主要方法:
- 使用两个大型美国行政数据库 (商业保险索赔和医疗保险有限数据集) 的回顾性队列研究.
- 纳入标准:患有AMN的成年男性 (18-64岁),不包括大脑ALD或其他过氧体疾病.
- 匹配分析比较了AMN患者和对照者的医疗保健利用率,并发症,死亡率和死亡年龄.
主要成果:
- 在住院,门诊,家庭医疗保健,耐用医疗设备和处方填充中,AMN患者的医疗保健利用率显著提高.
- 在AMN患者中,观察到外周血管疾病,慢性肺病和肝病等并发症的患病率增加.
- 与对照人群相比,AMN男性的死亡率明显高 (年龄为65岁以下的5.3倍,年龄为65岁以上的2.2倍),死亡年龄明显较小.
结论:
- 亚米尼对受影响的男性造成了显著且往往被低估的健康负担.
- 这些发现突出了与AMN相关的医疗保健利用率增加,并发病率增加和死亡率上升.
- 由于AMN对患者的结果和寿命有重大影响,早期识别和管理AMN至关重要.
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