生活在中意味着什么? 从患者的角度看疾病的负担
Joanne M Wagner1, Bhagyashree Oak2, Brittany Smith2
1Xenon Pharmaceuticals Inc., Vancouver, British Columbia, Canada.
尽管服用抗发作药物 (ASM) 治疗,但许多患者 (PwE) 经历频繁的,非症状和严重的心理健康负担. 这些发现凸显了改善治疗方法的迫切需要,以提高患者的生活质量.
科学领域:
- 神经学 神经学
- 临床研究 临床研究
- 患者报告的结果
背景情况:
- 治疗的目标是控制发作,减少副作用,改善生活质量.
- 关于当前抗发作药物 (ASM) 治疗患者经验的真实数据至关重要.
研究的目的:
- 评估接受ASM治疗的患者的现实体验,并发症和心理健康.
- 从患者的角度确定病护理的未满足需求.
主要方法:
- 通过网络对170名18岁以上的美国患者 (PwE) 进行了调查.
- 经过验证的仪器 (QOLIE-10,PHQ-9,GAD-7,WPAI) 评估了生活质量,抑郁,焦虑和工作生产力.
- 收集了关于发作频率,严重程度,非发作症状,并发症和护理人员负担的数据.
主要成果:
- 尽管接受ASM治疗,66.5%的PwE报告每月>1次发作,72.9%有≥3次非发作症状 (情绪,疲劳,睡眠问题).
- 报告的抑郁症 (63.5%) 和焦虑症 (46.5%) 的高率,以及像偏头痛这样的常见并发症.
- 观察到对生活质量 (QOLIE-10平均得分为44.5) 和工作生产率 (60.6%的损失) 有显著影响.
结论:
- 目前的ASM治疗为患者留下了大量未满足的需求.
- 普华永道经历了严重的疾病负担,包括持续的发作,非发作症状,心理健康问题和生产力下降.
- 需要新的治疗策略来改善管理中的整体患者体验.
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