通过以患者为中心的体验,评估葡萄牙的亚托皮炎负担
Michelle Tu1, Freya Moxham1, Alan Schwartz2
1Global Parents for Eczema Research. California. United States of America.
Acta medica portuguesa
|October 4, 2024
概括
葡萄牙的阿托皮性皮肤炎患者面临着严重的财务压力和更低的生活质量. 改善以患者为中心的护理对于管理这种慢性皮肤疾病的更好的健康结果至关重要.
科学领域:
- 皮肤病学 皮肤病学
- 公共卫生 公共卫生
- 卫生经济学 卫生经济学
背景情况:
- 亚托皮炎 (AD) 对葡萄牙的成年患者和护理人员造成了相当大的身体,精神和财务负担.
- 当前的医疗保健模式可能无法充分解决与AD管理相关的以患者为中心的担忧.
研究的目的:
- 概述葡萄牙对亚托皮性皮肤炎管理的经验.
- 评估当前医疗保健模式对以患者为中心的问题的影响,包括财务负担,生活质量,疾病负担和治疗满意度.
主要方法:
- 对419名葡萄牙成年人和照顾患有亚托皮性皮肤炎的儿童进行了调查.
- 收集的数据包括治疗满意度,症状控制,关于优先事项的患者-提供者沟通,患者培训可用性,与健康有关的生活质量 (EQ-5D) 和财务影响.
主要成果:
- 报告了平均治疗满意度 (3.15/5.00),成年人 (56.6) 的症状控制略好于儿科患者 (55.9).
- 不到40%的参与者报告说,他们的优先事项得到了讨论,只有32-40%的参与者得到了患者培训.
- 近80%的人经历了财务困难,利用储蓄或减少由于附加成本而导致的支出. 看到皮肤科医生的患者报告了更高的满意度 (p=0.01).
结论:
- 葡萄牙的阿托皮性皮肤炎患者和护理人员经历了巨大的财务负担,生活质量下降和治疗不满.
- 这些挑战往往会随着疾病严重程度的增加而恶化.
- 医疗服务提供者,研究人员和政策制定者需要优先考虑以患者为中心的关注,以改善阿托皮性皮肤炎患者的护理和治疗结果.
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