scholarly journals Novel Participatory Methodologies for Identifying Motivations of Minority Women to Participate in a Breast Cancer Clinical Trial

2020 ◽  
Vol 3 ◽  
Author(s):  
Madeline Evans ◽  
Katherine Ridley-Merriweather
Keyword(s):  
Breast Cancer ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Focus Groups ◽  
Asian Americans ◽  
Breast Tissue ◽  
Minority Groups ◽  
Common Factors ◽  
Minority Women ◽  
Tissue Donation

Background: The Komen Tissue Bank (KTB), a biorepository that stores healthy breast tissue for use as controls in breast cancer (BC) research, has a notable deficiency in tissue donations from racial and ethnic minority women. Though studies have documented similar disparities in many clinical trials, the reasons why minority women agree or decline to participate in clinical trials remain largely unknown. This study used two novel participatory communication methodologies with minimal researcher intervention to explore potential motivations for minority women (Latinas, Asian Americans, and Black women) to donate breast tissue to the KTB.  Methods: Two novel methodologies rooted in Grounded Practical Theory and Grounded Theory were used to study the attitudes of non-donors toward tissue donation and the reasons donors chose to donate tissue to the KTB, respectively. The non-donors (Latinas, n=14; Asian Americans, n=17) participated in interactive focus groups, and donors (Black, n=20) participated in open-ended interviews, all of which were then transcribed and coded to identify common motivations for donating breast tissue.  Results: The interactive methodology of both the focus groups and interviews yielded rich data that may not have arisen in a traditional question-driven format. Though the manifestation differed between minority groups, three common factors influencing the decision to donate breast tissue were present in all groups: altruistic tendencies, cultural norms, and personal connection to BC. Non-donors also expressed their need for more information before making the decision to donate.  Conclusion and Potential Impact: Common factors that influence the decision to donate tissue were identified using these two novel interactive methodologies, though the expression differed between minority groups. The information gleaned from this study will inform future communication efforts by the KTB and other clinical trial researchers, with the ultimate goal of distributing targeted recruitment materials to increase the representation of minority women in clinical trials. 

scholarly journals This Story Needs to Be Told: Formative Research on Using Animated Storytelling to Address Prospective Minority Clinical Trials Participants’ Need for Comprehensive Knowledge

2018 ◽  
Vol 1 (1) ◽  
Author(s):  
Stephanie M. Younker ◽  
Katherine E. Ridley-Merriweather
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Breast Tissue ◽  
Minority Groups ◽  
Formative Research ◽  
Tissue Donation ◽  
Trial Participation ◽  
Cancer Clinical Trials ◽  
Communication Tool ◽  
Comprehensive Knowledge

Background: The Komen Tissue Bank (KTB), a clinical trial that collects women’s healthy breast tissue for use as research study controls, currently stores samples demonstrating a noted paucity of minority specimens. Studies have shown minority groups’ participation in clinical trials is dependent upon the groups’ knowledge about the associated research. This study’s purpose is to conduct formative research on animated storytelling’s effectiveness as a communication tool to address minority groups’ expressed need for knowledge and encourage participation in cancer clinical trials.   Methods: I re-coded data previously gathered from a KTB study to evaluate the perceptions of Latinas (n=14) and Asian Americans (n=17) toward breast tissue donation. Extensive review of the current literature yielded data concerning African Americans’ outlooks toward clinical trial participation, and also illustrated the efficacy of using narratives and animation as communication and education tools.  Results: The literature review clearly illuminated the importance of storytelling in minority cultures and suggested the success of using narratives as communication tools. We anticipate our findings could be influenced by a) minorities’ lack of, and need for, comprehensive knowledge, b) previously obscured participation barriers, and c) animated storytelling as an effective delivery method.  Projected Conclusion and Potential Impact: Using an animated storytelling communication tool may successfully increase knowledge about, and comfort with, participation in a cancer clinical trial. The next phase, an animated video production, will tell the comprehensive story of healthy breast tissue donation. The use of this tool could help increase minority participation in cancer prevention and cancer clinical trials.

Clinical trials and American Indians/Alaska Natives with substance use disorders: identifying potential strategies for a new cultural-based intervention

2014 ◽  
Vol 13 (4) ◽  
pp. 175-178 ◽  
Author(s):  
Daniel L. Dickerson ◽  
Kamilla L. Venner ◽  
Bonnie Duran
Keyword(s):  
Clinical Trial ◽  
Substance Abuse ◽  
Clinical Trials ◽  
Substance Use ◽  
Focus Groups ◽  
Substance Use Disorders ◽  
American Indians ◽  
Alaska Natives ◽  
Treatment Setting ◽  
Content Type

Purpose – The purpose of this paper is to address a significant public mental health disparity affecting American Indians/Alaska Natives (AI/ANs): the shortage of clinical trials research analyzing the benefits of AI/AN traditional-based treatments, e.g. drumming. Design/methodology/approach – A total of four focus groups were conducted among outpatient and inpatient AI/AN substance abuse patients and providers serving AI/ANs. The purpose of these focus groups was to obtain insights relating to the recent challenges of conducting a clinical trial within the outpatient treatment setting seeking to analyze the benefits of a new substance abuse treatment intervention utilizing drumming for AI/ANs [Drum-assisted Recovery Therapy for Native Americans (DARTNA)] and to obtain recommendations to successfully conduct a similar study within an inpatient treatment setting. Findings – The most prevalent barriers to conducting a clinical trial within an outpatient setting were transportation and child care issues. Recommendations were obtained with regard to optimizing recruitment and retention for a future study within an inpatient setting. Originality/value – This research offers the field rare information that helps toward identifying strategies to successfully conduct clinical trials investigating the benefits of culturally-appropriate treatments for AI/ANs with substance use disorders.

Increasing underrepresented minority cancer patient enrollment into cancer clinical trials: A systematic review.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e18574-e18574
Author(s):  
Rosa Nouvini ◽  
Patricia A. Parker ◽  
Charlotte Malling ◽  
Kendra Godwin ◽  
Rosario Costas-Muñiz
Keyword(s):  
Systematic Review ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Minority Groups ◽  
Relationship Building ◽  
Institutional Research ◽  
Underrepresented Minority ◽  
Randomized Controlled ◽  
Clinical Trial Enrollment ◽  
Recruitment Model

e18574 Background: Minorities continue to be underrepresented in clinical trials despite the National Institute of Health’s Revitalization Act, passed in 1993, mandating the representation of women and underrepresented minority groups in clinical trials. Studies have shown that although Blacks represent 15% and Hispanics 13% of the cancer population, their clinical trial enrollment rates in are disproportionately low at 4-6% and 3-6% respectively. We conducted a systematic review exploring interventions aimed at improving clinical trial enrollment for racial and ethnic minorities. Methods: A systematic search of PubMed, Cochrane CENTRAL, and Ovid PsycINFO was conducted for English-language studies of humans since 1993. Inclusion criteria included peer-reviewed, U.S.-based studies with interventions aimed to recruit underrepresented minority adult cancer patients into cancer clinical trials. We defined underrepresented minority groups as Black, Hispanic/Latino, Asian, American Indian/Alaska Native and Native Hawaiian/other Pacific Islander. Results: A total of 2471 titles and abstracts were identified and 2324 were excluded based on the eligibility criteria. A full text review was conducted of the remaining 147 articles, of which only 9 met criteria for our review. The interventions included patient navigation/coaching (n = 4), a clinical trial educational video (n = 2), institutional research infrastructure changes (n = 1), a relationship building and social marketing recruitment model (n = 1) and cultural competency training for providers (n = 1). Studies were conducted in a variety of practice settings including national cancer institutes and community practices. The quality of evidence was limited by the heterogeneity of study methods, patient representation and bias. Several studies had a homogeneous population of Black patients. Most studies (n = 7) were single arm trials that compared results to either historical controls or those cited in the existing literature; two studies were randomized controlled trials. A statistically significant improvement in accrual was shown in three of the patient navigation interventions, one of the clinical trial educational videos, the institutional research infrastructure change and the relationship building and social marketing recruitment model. The common threads to many of these successful interventions were support through the cancer care continuum, cultural congruency of research staff and culturally catered clinical trial educational materials. Conclusions: This systematic review illustrates several mechanisms by which to increase cancer clinical trial recruitment for cancer patients of underrepresented minority backgrounds in a variety of clinical settings. Randomized controlled trials with representation of multiple races/ethnicities are needed to further explore the benefits of these interventions.

scholarly journals Lupus patient decisions about clinical trial participation: a qualitative evaluation of perceptions, facilitators and barriers

2020 ◽  
Vol 7 (1) ◽  
pp. e000360
Author(s):  
Cristina Arriens ◽  
Teresa Aberle ◽  
Fredonna Carthen ◽  
Stan Kamp ◽  
Aikaterini Thanou ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Focus Groups ◽  
Minority Groups ◽  
Research Participation ◽  
Qualitative Evaluation ◽  
Control Beliefs ◽  
Trial Participation ◽  
Clinical Trial Participation ◽  
Personal Benefit ◽  
Advantages And Disadvantages

ObjectiveAlthough SLE disproportionately affects minority racial groups, they are significantly under-represented in clinical trials in the USA. This may lead to misleading conclusions in race-based subgroup analyses. We conducted focus groups to evaluate the perceptions of diverse patients with lupus about clinical trial participation.MethodsA qualitative research design employed three 90 min focus groups led by a trained moderator and guided by the Theory of Planned Behaviour. Open-ended questions about trial participation included advantages and disadvantages (behavioural beliefs), approving and disapproving significant others (normative beliefs), and participation enhancers and barriers (control beliefs). Discussions were recorded, transcribed and analysed to identify emerging themes.ResultsPatients with SLE (n=23) aged 21–72, with increased proportion of minority groups (65%), participated. Reported advantages of trial participation included altruism and personal benefit. Disadvantages included uncertainties, disappointment, information burden, and life–health balance. Although some patients had discussed research participation with approving or disapproving family or friends, self-approval superseded external approval. Barriers included logistics and time, and facilitators included flexibility in scheduling, advance notice of studies, streamlined forms, and hope for SLE improvement.ConclusionsKnowledge about potential benefits of clinical trial participation was high. Minority patients demonstrated confidence in making their own informed decisions, but major barriers for all participants included burdensome forms, travel, childcare, and work. These suggest a major impact on minority and all recruitment from behavioural and control aspects, which should be considered in the logistics of trial design. This does not minimise the potential importance of improved access and education about clinical research.

Artificial Intelligence Tool for Optimizing Eligibility Screening for Clinical Trials in a Large Community Cancer Center

2020 ◽  
pp. 50-59 ◽  
Author(s):  
J. Thaddeus Beck ◽  
Melissa Rammage ◽  
Gretchen P. Jackson ◽  
Anita M. Preininger ◽  
Irene Dankwa-Mullan ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Language Processing ◽  
Medical Records ◽  
Cancer Center ◽  
Patients With Cancer ◽  
Attribute Extraction ◽  
Time Required ◽  
Manual Review

PURPOSE Less than 5% of patients with cancer enroll in clinical trials, and 1 in 5 trials are stopped for poor accrual. We evaluated an automated clinical trial matching system that uses natural language processing to extract patient and trial characteristics from unstructured sources and machine learning to match patients to clinical trials. PATIENTS AND METHODS Medical records from 997 patients with breast cancer were assessed for trial eligibility at Highlands Oncology Group between May and August 2016. System and manual attribute extraction and eligibility determinations were compared using the percentage of agreement for 239 patients and 4 trials. Sensitivity and specificity of system-generated eligibility determinations were measured, and the time required for manual review and system-assisted eligibility determinations were compared. RESULTS Agreement between system and manual attribute extraction ranged from 64.3% to 94.0%. Agreement between system and manual eligibility determinations was 81%-96%. System eligibility determinations demonstrated specificities between 76% and 99%, with sensitivities between 91% and 95% for 3 trials and 46.7% for the 4th. Manual eligibility screening of 90 patients for 3 trials took 110 minutes; system-assisted eligibility determinations of the same patients for the same trials required 24 minutes. CONCLUSION In this study, the clinical trial matching system displayed a promising performance in screening patients with breast cancer for trial eligibility. System-assisted trial eligibility determinations were substantially faster than manual review, and the system reliably excluded ineligible patients for all trials and identified eligible patients for most trials.

Identification of Cancer Care and Protocol Characteristics Associated With Recruitment in Breast Cancer Clinical Trials

2008 ◽  
Vol 26 (27) ◽  
pp. 4458-4465 ◽  
Author(s):  
Julie Lemieux ◽  
Pamela J. Goodwin ◽  
Kathleen I. Pritchard ◽  
Karen A. Gelmon ◽  
Louise J. Bordeleau ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Cancer Care ◽  
Primary Objective ◽  
Cancer Clinical Trials ◽  
Cooperative Groups ◽  
Number Of Patients ◽  
Trial Protocols ◽  
Few Data

Purpose It is estimated that only 5% of patients with cancer participate in a clinical trial. Barriers to participation may relate to available protocols, physicians, and patients, but few data exist on barriers related to cancer care environments and protocol characteristics. Methods The primary objective was to identify characteristics of cancer care environments and clinical trial protocols associated with a low recruitment into breast cancer clinical trials. Secondary objectives were to determine yearly recruitment fraction onto clinical trials from 1997 to 2002 in Ontario, Canada, and to compare recruitment fraction among years. Questionnaires were sent to hospitals requesting characteristics of cancer care environments and to cooperative groups/pharmaceutical companies for information on protocols and the number of patients recruited per hospital/year. Poisson regression was used to estimate the recruitment fraction. Results Questionnaire completion rate varied between 69% and 100%. Recruitment fraction varied between 5.4% and 8.5% according to year. More than 30% of patients were diagnosed in hospitals with no available trials. In multivariate analysis, the following characteristics were associated with recruitment: use of placebo versus not (relative risk [RR] = 0.80; P = .05), nonmetastatic versus metastatic trial (RR = 2.80; P < .01), and for nonmetastatic trials, protocol allowing an interval of 12 weeks or longer versus less than 12 weeks (from diagnosis, surgery, or end of therapy) before enrollment (RR = 1.36; P < .01). Conclusion Allowable interval of 12 weeks or longer to randomly assign patients in clinical trials could help recruitment. In our study, absence of an available clinical trial represented the largest barrier to recruitment.

Barriers to participation in breast cancer trials

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 6593-6593
Author(s):  
O. Herasme ◽  
J. Goldberg ◽  
R. Sandoval ◽  
C. Harris ◽  
Y. Ortiz-Pride ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Clinical Trial ◽  
Clinical Trials ◽  
Child Care ◽  
Cancer Patients ◽  
Controlled Trial ◽  
Demographic Factors ◽  
Trial Participation ◽  
Barriers To Participation ◽  
Cancer Trials

6593 Background: Clinical cancer trials allow investigators to test the effectiveness and safety of new cancer drugs and treatments. Historically, fewer that 5% of cancer patients have participated in clinical trials. The purpose of this study was to assess attitudes, beliefs, and practical barriers to clinical trial recruitment. Methods: Women were recruited in the Herbert Irving Comprehensive Cancer Center while waiting for routine breast screening or for oncology care in connection with a diagnosis of breast cancer. The 29-item survey questionnaire covered demographic factors, prior cancer diagnosis or risk factors, past experience with clinical trials if any, willingness to participate in different types of trials, and attitudinal and practical barriers to participation. Results: Of 329 respondents, 48.9% were non- Hispanic white, 10.9% non-Hispanic black, 34.9% Hispanic, and 5.30% other/unknown. The mean age of participants was 52.5 (SD=12.1). Of 131 (39.8%) participants reporting that they had been asked to participate in clinical trial, 82 were white, 17 black and 32 Hispanic. Of those who enrolled, 64 were white, 14 were black, and 19 Hispanic. Of those asked to participate 56/63 breast cancer patients (88.9%) and 44/68 others (64.7%) enrolled (P=0.002). Of 48 who reported that they had child care responsibilities, 33 enrolled (68.8) compared to 67/83 (80.7%) of those without such responsibilities (P=0.07). Of the total sample, 88/220 (40.0%) of those without childcare responsibilities but only 32/109 (29.4) said they would be willing to participate in a placebo-controlled trial. Respondents were twice as likely to say they would participate in a trial comparing two active agents as a placebo-controlled trial. Conclusion: Our findings suggest that being asked to participate in a clinical trial may be associated with demographic factors, and that specific circumstances, such as child care responsibilities, may also affect trial participation. Awareness of these barriers may help investigators to develop effective strategies for overcoming them and for improving trial participation overall. No significant financial relationships to disclose.

Accrual of underrepresented minority women to breast cancer clinical trials in the Inland Empire, California.

2011 ◽  
Vol 29 (15_suppl) ◽  
pp. 9058-9058
Author(s):  
Y. Yuan ◽  
P. Uppala ◽  
S. S. Lum ◽  
C. Garberoglio ◽  
H. R. Mirshahidi ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Clinical Trials ◽  
Minority Women ◽  
Cancer Clinical Trials ◽  
Underrepresented Minority ◽  
Inland Empire
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