关于癌症患者生命末期的问卷 - 响应负担是否可以接受?
Liv Betker1, Carola Seifart2, Pia von Blanckenburg1
1Department of Clinical Psychology and Psychotherapy (L.B., P.B.), Philipps-University Marburg, Marburg, Germany.
Journal of pain and symptom management
|November 28, 2023
概括
癌症患者终身护理的患者报告结果显示,应答负担最小. 较高的死亡焦虑,较低的生命结束讨论的准备能力,以及年龄较大的预测负担,表明对弱势群体的设计考虑.
科学领域:
- 在瘤学瘤学.
- 抚慰性护理是一种缓解性护理.
- 心理社会瘤学
背景情况:
- 患者报告结果 (PROs) 对于癌症患者生命终端 (EoL) 研究至关重要.
- 评估EOL经验对弱势群体来说可能是负担,这引发了对参与的担忧.
- 了解响应负担是设计道德和有效的EOL研究的关键.
研究的目的:
- 评估与癌症患者的EoL问卷相关的响应负担.
- 为了确定与感知反应负担相关的个体患者变量.
- 为了比较与EOL主题相关的负担与一般问卷填写.
主要方法:
- 横截面研究设计使用六项工具来评估响应负担.
- 探索负担和变量之间的关联,包括年龄,性别,护理类型,诊断持续时间,痛苦,焦虑,以及为EOL对话/计划做好准备.
- 使用了相关性分析和多重回归.
主要成果:
- 共有269名癌症患者参与了这项研究,其中29.7%的人报告了一些反应负担.
- 负担的关键预测因素包括更高的死亡焦虑 (ß = 0.4),对EOL对话的准备程度较低 (ß = -0.34) 和年龄较大 (ß = 0.23).
- 没有报告特别由于EOL主题而造成的显著额外负担.
结论:
- 在这项EoL癌症患者研究中,整体应答负担通常低且可接受.
- 特定的患者因素 (死亡焦虑,EOL对话准备,年龄) 影响感知负担.
- 未来的研究设计应优先考虑尽量减少负担,同时最大限度地提高参与者利益和研究质量.
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