儿科罕见病的护理人员报告的经济影响 - 一个范围审查
Niamh Buckle1, Orla Doyle2, Naonori Kodate3,4
1School of Nursing, Midwifery and Health Systems, University College Dublin, D04 V1W8 Dublin, Leinster, Ireland.
Healthcare (Basel, Switzerland)
|January 8, 2025
概括
照顾患有罕见疾病的孩子给家庭带来了巨大的经济负担,不仅仅是医疗费用. 这项研究强调了对家庭的重大经济影响,强调了需要更多的理解和支持.
科学领域:
- 卫生经济学 卫生经济学
- 儿科罕见病 儿科罕见病
- 家庭财务影响家庭财务影响
背景情况:
- 罕见疾病虽然个别不常见,但总体影响着大量人口.
- 患有罕见病儿童的家庭面临着巨大的直接和间接经济成本.
- 目前对这些家庭经济负担的研究是有限的.
研究的目的:
- 进行范围审查,记录罕见疾病对儿童及其家庭经济影响的证据.
- 识别和综合有关儿童罕见病直接医疗,直接非医疗和间接成本的数据.
主要方法:
- 在六个电子数据库中进行了对同行评审文献的全面搜索.
- 包括1983年1月至2023年4月期间发表的研究,没有地理或语言限制.
- 数据提取遵循了PAGER框架,用于报告范围审查结果.
主要成果:
- 对28项研究的分析揭示了与医疗保健专业人员的访问,药物,存在主义和非正式护理相关的重大成本.
- 确定的主要成本驱动因素包括频繁使用医疗保健和持续非正式护理的需求.
- 研究发现了研究缺陷,特别是代谢和肌肉骨罕见疾病的过度代表以及罕见和超罕见疾病之间的区别的缺乏.
结论:
- 抚养患有罕见疾病的孩子给家庭带来了相当大的经济压力,包括除了直接医疗保健之外的费用.
- 全面了解罕见疾病影响家庭所面临的经济挑战至关重要.
- 这种知识对于准确定义和解决罕见疾病的整体经济影响至关重要.
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