对那些接受了遗传性癌症遗传检测的个体的患者报告措施的系统审查
Kelsie Raspin1, Daisy Nowakowski2, Joanne L Dickinson2
1Menzies Institute for Medical Research, University of Tasmania, GPO Box 341, Hobart, TAS, 7001, Australia. kelsie.raspin@utas.edu.au.
The patient
|November 10, 2025
概括
这次审查确定了83项患者报告的措施 (PRM),用于遗传性癌症遗传检测,其中30项是基因特异性的. 需要进一步开发PRM,特别是对于乳腺癌以外的癌症.
科学领域:
- 基因组医学是基因组医学.
- 在瘤学瘤学.
- 患者报告的结果
背景情况:
- 基因组技术正在改变癌症护理,使得早期查和有针对性的干预措施成为可能.
- 了解患者的经验和结果对于有效的精准药物交付至关重要.
- 在评估这些结果时,患者报告的措施 (PRM) 优先于行政数据.
研究的目的:
- 系统地审查和质量总结用于遗传性癌症遗传检测的PRM.
- 识别和描述现有的PRM及其重点领域.
主要方法:
- 系统的文献综述,包括针对基因测试和癌症患者报告结果的特定搜索术语.
- 审查,元分析和协议的排除.
- 包括报告结果测量直接来自接受生殖系遗传检测遗传性癌症的患者的研究.
主要成果:
- 从39项涉及16523名参与者的研究中确定了83个PRM.
- 鉴定出的30项措施是基因特异性的,重点是知识,感知,关注,兴趣和可接受性.
- 大多数研究来自美国,专注于乳腺癌,包括白人,大学受过教育和就业的参与者.
结论:
- 大多数研究都是在法律保护对遗传歧视的国家进行的.
- 需要对乳腺癌以外的其他癌症进行更多的研究,以标准化结果收集.
- 研究的显著过度代表性包括白人,受过良好教育和就业的参与者,强调需要更广泛的代表性和开发额外的PRM.
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