Tu Shin-Ping, Chen Hueifang, Chen Anthony, Lim Jeanette, May Suepattra, Drescher Charles
Department of Medicine, University of Washington, Seattle, WA 98104, USA.
Cancer. 2005 Dec 15;104(12 Suppl):2999-3005. doi: 10.1002/cncr.21524.
Under-representation of minority and female participants prompted the U.S. legislature to mandate the inclusion of women and minorities in federally funded research. Recruitment of minorities to participate in clinical trials continues to be challenging. Although Asian Americans constitute one of the major minority groups in the U.S., published literature contains sparse data concerning the participation of Asian Americans in cancer clinical trials. The authors completed qualitative, semistructured interviews with 34 participants: Chinese-American female cancer patients ages 20-85 years or their family members. Interviews were conducted in Cantonese, Mandarin, or English and were audiotaped. Chinese interviews were translated into English, and all interviews were transcribed subsequently into English. A team of five coders individually reviewed then met to discuss the English transcripts. The authors used the constant comparative technique throughout the entire coding process as part of the analysis. Among participants, 62% lacked any knowledge of clinical trials, and many expressed negative attitudes toward clinical trials. Barriers to participation included inadequate resources, language issues, and a lack of financial and social support. Facilitating factors included recommendations by a trusted oncologist or another trusted individual and information in the appropriate language. It is noteworthy that family members played an important role in the cancer experience of these participants. To promote participation, there is a need to increase knowledge of clinical trials among Chinese cancer patients. It also is necessary to examine the applicability of current patient-physician communication and interaction models. In addition, decision-making based on Asian philosophies within the context of Euro-American bioethics requires further study.
少数族裔和女性参与者人数不足促使美国立法机构强制要求在联邦资助的研究中纳入女性和少数族裔。招募少数族裔参与临床试验仍然具有挑战性。尽管亚裔美国人是美国主要的少数族裔群体之一,但已发表的文献中关于亚裔美国人参与癌症临床试验的数据却很少。作者对34名参与者进行了定性的半结构化访谈:年龄在20至85岁之间的华裔美国女性癌症患者或其家庭成员。访谈以粤语、普通话或英语进行,并进行了录音。中文访谈被翻译成英语,随后所有访谈都被转录成英语。由五名编码员组成的团队分别对英文转录本进行审查,然后开会讨论。作者在整个编码过程中使用持续比较技术作为分析的一部分。在参与者中,62%对临床试验一无所知,许多人对临床试验表达了负面态度。参与的障碍包括资源不足、语言问题以及缺乏经济和社会支持。促进因素包括值得信赖的肿瘤学家或其他值得信赖的个人的推荐以及用合适语言提供的信息。值得注意的是,家庭成员在这些参与者的癌症经历中发挥了重要作用。为了促进参与,有必要增加中国癌症患者对临床试验的了解。还需要研究当前医患沟通和互动模式的适用性。此外,在欧美生物伦理背景下基于亚洲理念的决策需要进一步研究。