Introduction: Many challenges to clinical trial accrual exist,
In response to the need for linguistically and culturally appropriate cancer survivorship materials for Latinos, the Office of Education and Special Initiatives and the Office of Cancer Survivorship at the National Cancer Institute (NCI) set out to test, adapt, and refine a Spanish translation of an English-language booklet for adult cancer survivors titled Facing Forward: Life After Cancer Treatment (Siga adelante: la vida después del tratamiento del cáncer). The authors used a process called "transcreation," which involves translating existing English-language materials into Spanish and then adapting them for Latino audiences. The Spanish version of the booklet was reviewed by nine Spanish-speaking reviewers who were cancer survivors. The multistage transcreation process reinforced the importance of conducting formative research as well as adjusting the methodology to address the needs of changing demographics.
Only 3% of cancer patients participate in cancer clinical trials (CCTs). A number of barriers to participation, particularly for minority groups, can be addressed through community-focused education and advocacy efforts. Working with community partnerships, a pilot program sought to change knowledge, attitudes, and role behaviors among community leaders, primary care providers (PCPs), and clinical researchers about CCTs, to increase patient awareness of and participation in CCTs. A mixed method evaluation utilized quantitative analysis of surveys administered to participants during the program period (2006-2008) and qualitative data from interviews with key participants. Programmatic efforts were effective in increasing knowledge and training community leaders and PCPs to disseminate messages about clinical trials, and ultimately increasing patient inquiries about local trials. Training improved cultural competency skills among clinical researchers to recruit and retain CCT participants. Partnerships fostered new processes and structures to facilitate CCT participation in their communities. Clinical trials education and advocacy efforts through community partnerships have an important role in enhancing clinical trial access and in increasing clinical trial participation. Oncologists' involvement in and leadership of such partnerships are critical to promoting CCT accrual, particularly for minority groups.
Background Research has demonstrated that communication and care coordination improve cancer patient outcomes. To improve communication and care coordination, it is important to understand Primary Care Providers’ (PCPs’) perceptions of communication with oncologists as well as PCPs’ communication needs. Methods A mixed methods approach was utilized in the present study. In the qualitative phase of the study, 18 PCPs practicing in underserved, minority communities were interviewed about their experiences communicating with oncologists. In the quantitative phase of the study, 128 PCPs completed an online survey about their preferences, experiences, and satisfaction with communication with oncologists. Results Results indicated a PCP-oncologist gap in communication occurred between diagnosis and treatment. PCPs wanted more communication with oncologists, updates on their patients’ prognosis throughout treatment, to be contacted via telephone or email, and saw their role as crucial in providing supportive care for their patients. Conclusions Although PCPs recognize that they play a critical, pro-active role in supporting patients throughout the continuum of their cancer care experience, existing norms regarding post-referral engagement and oncologist-PCP communication often hinder activation of this role among PCPs. Expected standards regarding the method, frequency, and quality of post-referral communication should be jointly articulated and made accountable between PCPs and oncologists to help improve cancer patients’ quality of care, particularly in minority communities.
Background Clinical trials are a critical resource for the discovery of new prevention, diagnostic and treatment methods for cancer. The most effective prevention and treatment modalities are based on previous clinical trial results. However, participation in clinical trials is underrepresented by racial/ethnic minority populations, Asian Americans in particular. Asian Americans are the least represented of any ethnic groups in clinical trials. Objective The purpose of this study is to develop and evaluate a culturally and linguistically appropriate community-based educational intervention to increase knowledge of and intent to participate in cancer clinical trials among underrepresented Chinese Americans. Methods Community-Based Participatory Research (CBPR) approach was used to guide the development, cultural tailoring, implementation and evaluation of clinical trial intervention. First, 22 Asian community representatives were recruited as community health educators (CHEs) who received 12-hour training on clinical trial education. Second, 262 members were recruited from 11 Chinese community organizations (CBOs). Of those recruited, a total of 247 eligible Chinese enrolled and participated in the clinical trial education delivered by trained CHEs. Participants completed pre-test before and post-test after the intervention. Results Fifteen out of 21 measures of clinical trial knowledge showed significant changes post the intervention (p<.05). Education remained the sole demographic factor increasing clinical trial knowledge in multivariate analysis. Conclusion Clinical trial education should emphasize both benefits to science and the larger Asian community. This community-based clinical trial intervention demonstrated promising results and has potential to enhance recruitment and participation in clinical trial research among the underrepresented Asian Americans.
Referring physicians play a vital role in facilitating patient access to clinical trials. Introducing the concept of clinical trials to their patients before referral to the treating oncologist, as well as referring only to oncologists who participate in clinical trials are two simple approaches that can help increase the number of patients willing to participate in clinical research. Educating referring physicians about clinical trials is thus an important and yet overlooked mechanism for increasing accrual to cancer clinical trials. 1 A survey conducted by investigators at Michigan State University found that primary care provider (PCP) attitudes and attendance at education sessions about cancer clinical trials consistently predicted referrals. 2 Although referring physicians can play an important role, they often have little knowledge about cancer clinical trials and do not discuss this treatment option with patients. The National Cancer Institute (NCI) conducted a survey of 706 PCPs and found that 98% of respondents referred their patients to cancer specialists without discussing the topic of clinical trials. 3 Of these respondents, 37% stated that they were unaware that clinical trial participation might be an option for their patients. 3 These data highlight an important missed opportunity to improve clinical trial participation.This article, part of the series on exemplary attributes of clinical trial sites, 4 provides practical advice on how oncologists can engage referring physicians in the clinical trial process. The article is accompanied by a Data Supplement consisting of a slide presentation that parallels this article and is designed to be used by oncologists when talking with referring physicians about clinical trials. Build RelationshipsRelationships with referring physicians can be initiated through formal or informal presentations; conversations at conferences, grand rounds, or meetings; or even during casual conversations with colleagues. In discussing the services offered by the oncologist or available in his or her practice, we suggest mentioning the added value to patients of being offered opportunities to participate in cutting-edge research. This also gives the oncologist the chance to allay common fears, address common misconceptions, and recast trial participation as a high-quality treatment option. A way to begin the conversation might be by saying something like, "I provide a full range of treatment options to patients with cancer, including clinical trials" or "I provide quality care that includes clinical trials." The oncologist should then offer to answer any questions the referring physician has about clinical trials and welcome continued contact.There are a number of ways to build relationships, and another effective option is to offer to travel to the office of the referring physician and provide an interactive talk over breakfast or lunch, if the oncology practice has sufficient resources to do so. These discussions provide the occasion to answer questions and educate PCPs and ...
This paper describes the use of a unique ”Learning and Feedback” approach to tailor cancer clinical trials education programs for Community Bridges, a peer training intervention designed for African American communities in North Carolina. Generic community education modules were demonstrated with key community leaders who were designated as trainers. Quantitative and qualitative assessments were provided on understanding of content, comfort with material and cultural relevance. The generic materials were adapted into three revised modules, all featuring key messages about cancer clinical trials, discussion regarding distrust of medical research, common misconceptions about trials, patient protections, and a call to action to prompt increased inquiry about locally available trials. The revised modules were then used as part of a train-the-trainer program with 12 African American community leaders. ENACCT’s use of the Learning and Feedback process is an innovative method for culturally adapting clinical trials education.
Background Racial and ethnic minorities are often underrepresented in clinical trials, threatening the generalizability of trial results. Several factors may contribute to underrepresentation of minorities in clinical trials, including lack of training for researchers and staff on the importance of diversity in clinical trials and effective strategies for recruiting and retaining minority populations. Methods Applying community engaged research principles, we developed a massive open online course (MOOC) to help research team members develop knowledge and skills to enhance the recruitment of minorities in clinical trials. A transdisciplinary working group, consisting of clinical researchers, community engagement specialists, minority clinical trial recruitment and retention educators and specialists, and knowledge management information scientists, was formed to develop an evidence-based curriculum. Feedback from the Recruitment Innovation Center Community Advisory Board was incorporated to help finalize the curriculum. The course was implemented in Coursera, an online learning platform offering MOOCs. A bootstrap paired sample t-test was used to compare pre- and post-assessments of knowledge, attitudes, and intentions as it relates to minority recruitment. Results The final course, entitled Faster Together, was divided into eight 1-h modules. Each module included video presentations, reading assignments, and quizzes. After 10 months, 382 individuals enrolled in the course, 105 participants completed the pre-test, and 14 participants completed the post-test. Participants’ knowledge scores were higher with an increase in the mean number of correct answers from 15.4 (95% CI:12.1–18.7) on the pre-test to 18.7 (95% CI:17.42–20.2) on the post-test. All post-test respondents (n = 14) indicated that the course improved their professional knowledge, and 71.4% of respondents indicated that they were very likely to make changes to their recruitment practices. Conclusions Faster Together, a massive open online course, is an acceptable, accessible approach to educating research teams on minority recruitment in clinical trials. Preliminary evidence indicates the course increased knowledge on how to recruit minorities into clinical trials and could promote change in their recruitment practices.
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