Hussain-Gambles Mah
Clinical Trials Research Unit, University of Leeds, 17 Springfield Mount, Leeds LS2 9NG, UK.
Fam Pract. 2004 Dec;21(6):636-42. doi: 10.1093/fampra/cmh611. Epub 2004 Nov 4.
This paper explores South Asian patients' views and experiences of clinical trial participation, as part of a larger study which sought to assess British South Asian under-representation in clinical trials.
The study was based on semi-structured interviews with South Asian trial participants in primary care and specialist treatment centres in the north of England. Fifteen South Asian patients who had participated in one of six different clinical trials to test pharmaceutical products comprised the study cohort.
South Asian motivations to participate in clinical trials are similar to those of the majority 'White' population. Clear and concise trial information (provided by caring and understanding trial staff) was considered an important aspect of the respondents' experiences. Appealing to South Asian peoples' altruistic nature by making them aware of South Asian under-representation (especially in clinical trials that investigate illnesses prevalent in their community) was also identified as a strong motivational factor. Potential barriers to their participation included: trial burden (which bears heavily on the poor), language, and discriminatory practices in the NHS, which can lead to mistrust of health professionals. In addition, female modesty and preference for female trial staff was recognized as a 'cultural' barrier to participation.
There are more similarities than differences between the experiences of British South Asians and 'White' trial participants. Present findings suggest that ethnicity operates at different levels. In addition to South Asian trial participants' culture, social class and gender are also as likely to affect their participation in clinical trials. To improve South Asian accrual rates, strategies should be designed to take into consideration linguistic differences and improving overall trust in the clinical trial team.
本文探讨了南亚患者参与临床试验的观点和经历，这是一项更大规模研究的一部分，该研究旨在评估英国南亚人群在临床试验中代表性不足的情况。
该研究基于对英格兰北部初级保健和专科治疗中心的南亚试验参与者进行的半结构式访谈。15名参与了六种不同药品测试临床试验之一的南亚患者组成了研究队列。
南亚人参与临床试验的动机与大多数“白人”人群相似。清晰简洁的试验信息（由关心且善解人意的试验工作人员提供）被认为是受访者经历的一个重要方面。通过让南亚人意识到他们在临床试验中代表性不足（尤其是在调查其社区中普遍存在疾病的临床试验中）来激发他们的利他本性，也被确定为一个强大的动机因素。他们参与的潜在障碍包括：试验负担（对穷人影响很大）、语言以及英国国民医疗服务体系中的歧视性做法，这些可能导致对医疗专业人员的不信任。此外，女性的谦逊以及对女性试验工作人员的偏好被认为是参与的“文化”障碍。
英国南亚人和“白人”试验参与者的经历之间相似之处多于不同之处。目前的研究结果表明，种族在不同层面发挥作用。除了南亚试验参与者的文化外，社会阶层和性别也同样可能影响他们参与临床试验。为了提高南亚人的入选率，应设计相应策略，考虑语言差异并增强对临床试验团队的整体信任。
