University of California, San Francisco, CA, USA.
Philip R. Lee Institute for Health Policy Studies, 3333 California Street, San Francisco, CA, 94118, USA.
Support Care Cancer. 2017 Oct;25(10):3235-3242. doi: 10.1007/s00520-017-3734-4. Epub 2017 May 9.
Discussions between oncologists and advanced cancer patients (ACPs) may touch on the complex issue of clinical trial participation. Numerous initiatives have sought to improve the quality of these potentially difficult conversations. However, we have limited data about what ACPs know about clinical research as they enter such discussions as, to date, such research has focused on the period following informed consent. This study examines ACPs' understanding of clinical research in the treatment period before consent.
We conducted in-depth interviews with adult ACPs with limited treatment options at four clinics in an academic medical center. So as not to influence patients' perspectives, interviewers probed patients' knowledge of clinical research only if the patient first brought up the topic. Interviews (40-60 min) were audio-recorded, transcribed, and analyzed thematically and via quantitative content analysis by an interdisciplinary team.
Of 78 patients recruited, 56 (72%) spontaneously brought up the topic of clinical research during interview and are included in this analysis. Qualitative thematic analysis and quantitative content analysis revealed that patients' knowledge varied in terms of (1) accuracy and (2) specificity (level of detail). ACPs who spoke with high specificity were not always accurate, and ACPs with accurate knowledge included both high- and low-specificity speakers.
ACPs' knowledge of clinical research is variable. Patients who can discuss the technical details of their care may or may not understand the broader purpose and procedures of clinical trials. Understanding this variability is important for improving patient-provider communication about clinical research and supporting efforts to provide individualized care for ACPs.
肿瘤学家与晚期癌症患者（ACP）之间的讨论可能会涉及临床试验参与这一复杂问题。许多举措都试图提高这些潜在困难对话的质量。然而，我们对 ACP 在进入这些讨论时对临床研究的了解程度知之甚少，因为到目前为止，此类研究主要集中在知情同意之后的阶段。本研究考察了 ACP 在同意之前的治疗期间对临床研究的理解。
我们在一家学术医疗中心的四个诊所对治疗选择有限的成年 ACP 进行了深入访谈。为了不影响患者的观点，如果患者首先提出了临床研究的话题，访谈者才会探究患者对临床研究的了解。访谈（40-60 分钟）进行了录音、转录，并由跨学科团队进行了主题分析和定量内容分析。
在招募的 78 名患者中，56 名（72%）在访谈中自发地提到了临床研究的话题，这些患者被纳入了本次分析。定性主题分析和定量内容分析表明，患者的知识在准确性和特异性（详细程度）方面存在差异。具有高度特异性的 ACP 并不总是准确的，具有准确知识的 ACP 包括高特异性和低特异性的发言者。
ACP 对临床研究的了解程度存在差异。能够讨论其护理技术细节的患者可能了解或不了解临床试验的更广泛目的和程序。了解这种变异性对于改善患者与提供者之间关于临床研究的沟通以及支持为 ACP 提供个性化护理的努力很重要。
