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短肠综合征相关肠衰竭患者经验:一种混合方法研究,利用在线患者社区
Brian Po-Han Chen1, Josh Feldman1, Megan Gower2
1Inspire, Arlington, Virginia, USA.
概括
短肠综合征相关肠衰竭 (SBS-IF) 患者面临着专业护理的重大障碍,导致未满足的需求和患者和护理人员的沉重治疗负担.
科学领域:
- 胃肠病学 胃肠病学
- 医疗保健服务研究 医疗服务研究
- 患者报告的结果
背景情况:
- 短肠综合征相关肠衰竭 (SBS-IF) 需要复杂,个性化和多学科的护理.
- 在SBS-IF患者获得专业护理方面存在显著的差异.
- 这项研究调查了未满足需求和治疗负担对患者及其护理人员的影响.
研究的目的:
- 评估SBS-IF患者及其护理人员未得到满足的需求和治疗负担.
- 识别进入专业SBS-IF护理的障碍.
- 了解SBS-IF对患者生活质量和护理人员幸福感的影响.
主要方法:
- 一项横截面的混合方法研究,涉及美国成年SBS-IF患者,至少六个月接受家庭肠胃营养,以及他们的护理人员.
- 进行了一小时的采访,以提供30分钟调查的发展信息.
- 参与者从一个在线健康社区中招募.
主要成果:
- 在68名患者中,47%接受了SBS专家的护理,58%在诊断后六个多月后转诊.
- 65%的患者报告患有抑郁症,54%没有接受心理健康护理.
- 财务问题占主导地位,65%的人无法工作,59%的人报告家庭收入低于5万美元. 照顾者的责任影响了他们的工作和前景.
结论:
- 患有SBS-IF的患者在获得专业医疗保健方面遇到重大挑战,增加了不良结果的风险.
- 经济困难,心理健康问题和健康的社会决定因素显著影响SBS-IF患者.
- 护理人员也面临相当大的负担,影响他们的工作和未来前景,强调需要全面的支持系统.
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