Haynes-Maslow Lindsey, Godley Paul, Dimartino Lisa, White Brandolyn, Odom Janice, Richmond Alan, Carpenter William
Health Policy and Management, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
Cancer Med. 2014 Oct;3(5):1430-9. doi: 10.1002/cam4.284. Epub 2014 Jun 6.
Cancer clinical trials are important for resolving cancer health disparities for several reasons; however, clinical trial participation among African Americans is significantly lower than Caucasians. This study engaged focus groups of 82 female African American cancer survivors or cancer caregivers, including those in better resourced, more urban areas and less resourced, more rural areas. Informed by an integrated conceptual model, the focus groups examined perceptions of cancer clinical trials and identified leverage points that future interventions may use to improve enrollment rates. Study findings highlight variation in community knowledge regarding cancer clinical trials, and the importance of community education regarding clinical trials and overcoming historical stigma associated with clinical research specifically and the health care system more generally. Study participants commented on the centrality of churches in their communities, and thus the promise of the church as loci of such education. Findings also suggested the value of informed community leaders as community information sources, including community members who have a previous diagnosis of cancer and clinical trial experience. The sample size and location of the focus groups may limit the generalizability of the results. Since the women in the focus groups were either cancer survivors or caregivers, they may have different experiences than nonparticipants who lack the close connection with cancer. Trust in the health system and in one's physician was seen as important factors associated with patient willingness to enroll in clinical trials, and participants suggested that physicians who were compassionate and who engaged and educated their patients would build important trust requisite for patient participation in clinical trials.
癌症临床试验对于消除癌症健康差异具有重要意义,原因如下;然而,非裔美国人参与临床试验的比例明显低于白种人。本研究对82名非裔美国女性癌症幸存者或癌症护理者进行了焦点小组访谈,这些人来自资源较丰富、城市化程度较高的地区以及资源较匮乏、农村化程度较高的地区。在一个综合概念模型的指导下,焦点小组研究了对癌症临床试验的看法,并确定了未来干预措施可用于提高参与率的杠杆点。研究结果突出了社区对癌症临床试验的了解存在差异,以及社区教育在临床试验方面的重要性,以及克服与临床研究特别是更广泛的医疗保健系统相关的历史耻辱感。研究参与者谈到了教会在他们社区中的核心地位,因此教会有望成为此类教育的场所。研究结果还表明,有见识的社区领袖作为社区信息来源的价值,包括曾被诊断患有癌症并有临床试验经验的社区成员。焦点小组的样本量和地点可能会限制结果的普遍性。由于焦点小组中的女性要么是癌症幸存者要么是护理者,她们的经历可能与那些与癌症没有密切联系的非参与者不同。对医疗系统和医生的信任被视为与患者参与临床试验意愿相关的重要因素,参与者建议富有同情心、与患者互动并对患者进行教育的医生将建立患者参与临床试验所需的重要信任。