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Communicating about Clinical Trials:Bringing the CIS to the Underserved

临床试验交流：将 CIS 带给服务不足的地区

基本信息

批准号：
8284431
负责人：
NANCY J. BURKE
金额：
$ 13.12万
依托单位：
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
依托单位国家：
美国
项目类别：
财政年份：
2008
资助国家：
美国
起止时间：
2008-07-01 至 2014-06-30
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8284431
关键词：
Address Adverse effects African American California Cancer Burden Cancer Information Service Cancer Patient Caring Clinical Research Clinical Trials Clinical Trials Information for Patients Communication Complex Computers Data Decision Making Detection Development Diagnosis Education Educational Background Elements Emotions Ethnic Origin Ethnography Face Family Federal Government Focus Groups Foundations Funding General Population Goals Hand Health Health Communication Health education Incidence Information Resources Institute of Medicine (U.S.)Intervention Interview Language Latino Lead Link Malignant Neoplasms Medical Minority Mission Modification National Cancer Institute Not Hispanic or Latino Patients Phase Population Process Protocols documentation Provider Public Health Public Hospitals Qualitative Methods Qualitative Research Race Recommendation Research Research Design Research Methodology Research Personnel Research Project Grants Research Training Resources Services Source Specialist Staging Telephone Testing Training Work base cancer health disparity cancer prevention cancer therapy design experience health literacy improved insight literacy low socioeconomic status medically underserved novel outreach programs response skills social cognitive theory survivorship

项目摘要

DESCRIPTION (provided by applicant): Background: Public hospital patients, often of low socioeconomic status and diverse race/ethnicity (the "underserved"), have few options for understanding and managing their illness, and they are also underrepresented in clinical trials. The National Cancer Institute's Cancer Information Service (CIS), a source of high quality cancer information for the public has gone largely unused by those most in need. Specific Aims: To provide appropriate clinical trials information to support public hospital patients making informed decisions about their treatment, this study has three specific aims: 1. to assess and document clinical trial information needs of African American, Latino, and White public hospital cancer patients; 2. to assess and adapt the CIS standard of service regarding clinical trial information through modification of current CIS telephone response for low literacy and diverse cultures and development of a proactive telephone protocol to improve caller question asking skills, increase information efficacy, and encourage participation in clinical trials; and 3. To pilot test the new adapted protocol for feasibility and efficacy. Study Design: This study consists of two phases. In Phase 1 multiple qualitative methods will be used to understand clinical trial information needs and to develop and pretest enhanced CIS protocols. We will gain insight into meanings patients attribute to clinical trials and 'research', document language patients use to discuss clinical trials and experimental treatments, and observe effective communications and miscommunications around provider/patient clinical trial information sharing through direct observations and ethnographic interviews. We will adapt/develop culturally appropriate protocols through: i) review of standard CIS clinical trials training; ii) prompted calls by patients to the CIS followed by patient and phone specialist debriefing interviews; and iii) patient focus groups. In Phase II we will pilot test the adapted protocols for feasibility and efficacy using pre- and post-call interviews. The conceptual framework is drawn from Subjective Culture, Informed Decision-making, and Social Learning Theories. Relevance to Public Health: Increasing participation of minorities in clinical trials research has been identified as a means to address cancer disparities. Recent research suggests that minorities are as willing as non-Hispanic whites to participate in clinical research if given appropriate information and opportunity. Building upon a pre-existing, federally funded cancer information resource (CIS), this study aims to bring appropriate cancer clinical trials information to underserved cancer patients and their families who need it the most.

描述（由申请人提供）：背景：公立医院的患者通常社会经济地位较低且种族/族裔（“服务不足”），他们很少有选择来了解和管理自己的疾病，而且他们在临床试验中的代表性也不足。美国国家癌症研究所的癌症信息服务 (CIS) 是为公众提供高质量癌症信息的来源，但大部分最需要的人却没有使用它。具体目标：为了提供适当的临床试验信息，支持公立医院患者就其治疗做出明智的决定，本研究有三个具体目标： 1. 评估和记录非裔美国人、拉丁裔和白人公立医院癌症患者的临床试验信息需求； 2. 通过修改当前 CIS 电话应答以适应低文化水平和多元化文化，并制定主动电话协议以提高呼叫者提问技巧、提高信息效率并鼓励参与临床试验，评估和调整有关临床试验信息的 CIS 服务标准； 3. 试点测试新的改编方案的可行性和有效性。研究设计：本研究分为两个阶段。在第一阶段，将使用多种定性方法来了解临床试验信息需求并开发和预测试增强的 CIS 方案。我们将深入了解患者对临床试验和“研究”的理解，记录患者用于讨论临床试验和实验性治疗的语言，并通过直接观察和人种学访谈观察围绕提供者/患者临床试验信息共享的有效沟通和误解。我们将通过以下方式调整/制定适合文化的方案： i) 审查标准 CIS 临床试验培训； ii) 患者及时致电 CIS，然后进行患者和电话专家情况汇报访谈； iii) 患者焦点小组。在第二阶段，我们将通过通话前和通话后访谈来试点测试改编后的协议的可行性和有效性。概念框架源自主观文化、知情决策和社会学习理论。与公共卫生的相关性：增加少数群体对临床试验研究的参与已被确定为解决癌症差异的一种手段。最近的研究表明，如果给予适当的信息和机会，少数族裔与非西班牙裔白人一样愿意参与临床研究。这项研究以现有的联邦政府资助的癌症信息资源 (CIS) 为基础，旨在为服务不足的癌症患者及其最需要的家人提供适当的癌症临床试验信息。