Cancer Prevention and Control, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612, USA.
Thoracic Oncology Program, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL 33612, USA.
Soc Sci Med. 2013 Dec;99:35-41. doi: 10.1016/j.socscimed.2013.08.035. Epub 2013 Sep 6.
Rapid autopsy or rapid tissue donation (RTD) is a novel method of tissue procurement in which 'fresh' tissue is collected within 2-6 h following the death of a patient. While the use of RTD offers many opportunities to develop new therapies for lung cancer patients, it raises ethical concerns. The purpose of this study was to examine knowledge, perceptions and ethical concerns about recruiting patients for an RTD program. To achieve research goals, we conducted six focus groups, each containing 5-10 participants (N = 38). Participants were cancer patients (n = 17) their caregivers (n = 6), physicians (n = 6) and clinic staff (n = 9) from the Thoracic Oncology Program at Moffitt Cancer Center, in Tampa, Florida, USA. All focus groups were audio-recorded and conducted using a semi-structured focus group guide. The transcripts were analyzed using hand-coding methods. Data were coded independently by at least two researchers, and an inter-rater reliability rate of ≥90% was achieved. Knowledge about RTD was low among all groups, with physicians having slightly higher knowledge; all groups agreed that RTD offered major benefits to cancer research; physicians and clinic staff were mainly concerned about making a patient feel uncomfortable and reducing hope, while, patients and family members were more concerned about logistics and how the family would be affected during tissue retrieval. All groups agreed the physician was the appropriate person to begin a discussion about RTD and that recruitment should be individualized. All groups reported that physician training is necessary, as well as an awareness campaign for patients and families to be more receptive about RTD. The results of this study suggested more education is needed for all stakeholders to learn about RTD prior to the initiation of a research program. Our approach of querying all stakeholders provides a firm foundation for future training modules regarding RTD programs in lung cancer.
快速尸检或快速组织捐献（RTD）是一种新型的组织采集方法，在患者死亡后 2-6 小时内采集“新鲜”组织。虽然 RTD 的使用为开发肺癌患者的新疗法提供了许多机会，但它也引发了伦理问题。本研究旨在探讨招募患者参与 RTD 计划的知识、看法和伦理问题。为了实现研究目标，我们进行了六次焦点小组讨论，每次讨论包含 5-10 名参与者（N=38）。参与者包括佛罗里达州坦帕市莫菲特癌症中心胸肿瘤计划的癌症患者（n=17）及其护理人员（n=6）、医生（n=6）和诊所工作人员（n=9）。所有焦点小组都进行了录音，并使用半结构化焦点小组指南进行了讨论。使用手工编码方法对转录本进行分析。数据由至少两名研究人员独立编码，并且达到了 90%以上的组内可靠性。所有组对 RTD 的了解都很低，医生的了解略高；所有组都认为 RTD 为癌症研究带来了重大好处；医生和诊所工作人员主要担心让患者感到不适并降低希望，而患者和家属则更关心后勤问题以及在组织采集过程中家庭会受到什么影响。所有组都同意医生是开始讨论 RTD 的合适人选，并且招募应该是个体化的。所有组都报告说，需要对医生进行培训，并且需要开展患者和家属的宣传活动，使他们对 RTD 更能接受。这项研究的结果表明，在启动研究计划之前，所有利益相关者都需要更多的教育来了解 RTD。我们向所有利益相关者询问的方法为未来有关肺癌 RTD 计划的培训模块提供了坚实的基础。
