在上肢淋巴研究中确保以患者为中心:确定患者优先考虑的议程和偏好
Manraj N Kaur1, Sylvie D Cornacchi2, Anne F Klassen2
1Department of Surgery, Brigham and Women's Hospital, Harvard Medical School, Boston, MA 02115, United States.
概括
患上肢淋巴 edem (LE) 的女性优先研究心理福利,并更喜欢电子数据收集. 他们对治疗研究中的随机化犹不决,影响临床试验设计.
科学领域:
- 在瘤学瘤学.
- 康复医学 康复医学 康复医学
- 患者报告的结果
背景情况:
- 与乳腺癌相关的淋巴 (BCRL) 显著影响患者的与健康相关的生活质量 (HRQL).
- 患者的观点对于指导淋巴管理的研究优先事项至关重要.
- 了解患者对研究方法的偏好对于有效的临床试验设计至关重要.
研究的目的:
- 确定患者优先考虑的上肢淋巴 (LE) 的研究议程.
- 了解患者对LE的研究设计和数据收集方法的偏好.
主要方法:
- 焦点小组会议与被诊断患有BCRL的成年女性进行.
- 采访指南探讨了HRQL结果,研究设计偏好和患者报告结果测量 (PROM) 数据收集.
- 诱导性内容分析用于分析定性数据.
主要成果:
- 淋巴严重影响外观,身体,心理社会和性健康.
- 患者强调在临床环境中缺乏关于心理社会福祉的讨论,以及关于LE风险和护理的信息不足.
- 大多数人表示不愿意在手术与保守的LE管理研究中随机化.
- 对PROMs的电子数据收集是首选的,重点是包括开放文本选项.
结论:
- 以患者为中心的研究对于生成相关数据和确保参与LE研究至关重要.
- 建议对LE研究进行全面的PROM,评估广泛的HRQL问题,特别是心理社会福祉.
- 患者不愿随机选择需要在试验设计,样本大小和BCRL研究的招聘策略方面仔细考虑.
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