Clinical research increasingly relies upon the availability of appropriate genetic materials; however, the proportion of biospecimens from racial/ethnic minority patients and healthy controls are underrepresented, which preclude equitable research across all patient groups for cancer treatment. National Cancer Institute-funded Community Network Program Centers in California, Florida, and New York collaborated with local community partners to conduct three independent formative research studies with diverse (African American, Asian American, Hispanic, and White) participants to explore their knowledge, attitudes, and beliefs about biobanking, and their experiences with the donation of biospecimens. Our findings demonstrated similarities in overall low knowledge and understanding about the use of biospecimens for research. This was exacerbated for nonEnglish speakers. Racial and ethnic groups differed with regard to a number of factors that are obstacles for participation, e.g., continuing medical mistrust (African Americans), lack of benefit (Hispanics), apprehension about the physical toll of donating (Vietnamese), usage of biospecimen for research (Hmong and Chinese), and suspicion of exploitation by corporate entities (Whites). However, participants uniformly reported general interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations. This interest was framed with a strong admonition that donations should be accompanied by transparency about study sponsorship and ownership, distribution and use of biospecimens, and study information that fit participants' backgrounds and experiences. This cross-cultural regional analysis offers significant insights into the similarities and variations in opinions and perceptions about biobanking and the collection of biospecimens for use in cancer research.
Background Biospecimen collection from diverse populations can advance cancer disparities research, but is currently underrepresented. Methods We partnered with a community-based clinic serving Cantonese-speaking Chinese Americans to develop and revise an educational seminar on biospecimen collection. Through a randomized controlled trial (n = 395), the intervention seminar was compared with a control seminar (cancer prevention) on change in willingness to donate biospecimens. Results At baseline, many were willing to donate a biospecimen (saliva, urine, hair, toenails, blood, unused cancerous tissue) whether healthy or hypothetically had cancer. Also, many would donate because future generations would benefit, and few had concerns about donation. In logistic regression analyses, there was an intervention effect for willingness to donate: urine if had cancer [OR, 2.2; 95% confidence interval (CI), 1.3–3.7], toenails if healthy (OR, 2.1; 95% CI, 1.4–3.2) or had cancer (OR, 2.3; 95% CI, 2.0–2.7), hair if healthy (OR, 1.8; 95% CI, 1.3–2.5) or had cancer (OR, 2.8; 95% CI, 1.9–4.0), and unused cancerous tissue (OR, 1.8; 95% CI, 1.2–2.9). There was also an intervention effect for donating because future generations would benefit (OR, 2.0; 95% CI, 1.4–3.0), and this attitude was a strong independent predictor for willingness to donate all biospecimens, whether healthy or had cancer (OR, 2.9–4.2). Conclusion Cantonese-speaking Chinese American participants of an educational seminar on biospecimen collection showed greater increases in willingness to donate biospecimens and donating for the benefit of future generations, than participants who attended a control seminar. Impact Donating for the benefit of future generations is a theme that should be incorporated in messages that encourage biospecimen donation for Chinese Americans.
Objective To estimate the prevalence of diabetes and pre-diabetes and the risk associated with BMI above the Asian cut-point of 23 in 4 Asian American communities. Research Design and Methods In a convenience sample of 981 Chinese, Hmong, Korean, and Vietnamese Americans in Sacramento County, California we measured hemoglobin A1c (HbAlc), height, weight, and waist circumference. Diabetes was defined as self-reported diabetes diagnosis or HbA1c ≥ 6.5%, and pre-diabetes as HbAlc 5.7%-6.4% with no diabetes diagnosis. We computed age-standardized prevalence of diabetes, pre-diabetes, and BMI and waist circumference above standard and Asian cut-points, and developed multivariable models of the association of diabetes and pre-diabetes with BMI and waist circumference. Results The 4 ethnic groups differed substantially with respect to diabetes prevalence, BMI, and waist circumference. Hmong had the highest prevalence of diabetes (15.0%, 95% confidence interval [CI] 10.7%-19.4%). Diabetes and pre-diabetes were associated with BMI ≥ 25 (diabetes: odds ratio [OR] =3.4, 95% CI 2.1-5.7; pre-diabetes: OR=4.0, 95% CI 2.7-5.8) or between 23 and 25 (diabetes: OR=1.8, 95% CI 1.0-3.1; pre-diabetes: OR=1.6, 95% CI 1.0-2.4). When waist circumference was added to the model, BMI effects were attenuated, and waist circumference ≥ 40 inches (men) or ≥ 35 inches (women) was associated with increased risk of diabetes (OR=3.2, 95% CI 1.6-6.2) and pre-diabetes (OR=1.7, 95% CI 1.0-2.9). Conclusions Our findings support the use of a BMI cut-point of 23 and the importance of central adiposity as a risk factor for diabetes in Asians. Diabetes risk reduction interventions for Asians are essential.
BACKGROUND Biospecimens from racially diverse groups are needed to advance cancer research. The Asian American Cancer Education Study was developed to increase the number and proportion of blood biospecimen donations from Asian Americans for cancer research. METHODS The authors' targeted approach included 2 types of community engagement, in‐reach (within institution to Asian American patients with cancer) and outreach (external to institution to the general Asian American community). Participants received in‐language biospecimen education followed by the opportunity to donate blood biospecimens. Outreach participants donated through our community biospecimen blood drives, and in‐reach participants consented to donating an extra tube of blood during their routine blood draws as a patient. Donated blood biospecimens were spun down to serum and plasma to be stored in a biorepository or were sent to the laboratory to test for cancer‐related risk factors. RESULTS Three hundred eighty‐eight Asian Americans donated 1127 blood biospecimens for cancer research. Four hundred twenty tubes of plasma and serum are currently being stored at the cancer center's biorepository, 39 tubes have been used for cancer genomic research, and 668 tubes were used to characterize cancer‐related risk factors. CONCLUSIONS Building upon the past decade of the National Cancer Institute‐funded Asian American Network for Cancer Awareness, Research, and Training's foundation of trust and service among Asian Americans, researchers were able to leverage relationships not only to introduce the idea of biospecimen contribution to the community but to also exceed expectations with regard to the quantity of blood biospecimens collected from Asian Americans. Cancer 2018;124:1614‐21. © 2018 American Cancer Society.
225 Background: Existing data on patient satisfaction after radiotherapy (RT) is scarce. The specific aim of this analysis is to describe the clinical experience for cancer patients (pts) completing a course of RT at OHSU’s Knight Cancer Institute. Methods: The records of 200 OHSU pts that completed a 5-item “Was It Worth It (WIWI)?” questionnaire highlighting pt satisfaction were reviewed. These data were collected upon the completion of treatment and, if available, first follow-up (f/u). Univariate analysis & logistic regression modeling were performed on pt demographic and treatment characteristics to ascertain predictors of satisfaction. Results: 200 pts (M = 174; F = 26) completed the questionnaire on their last day of treatment and 60 upon their first f/u. The median elapsed days of treatment was 34. The median days from end of RT to f/u were 46 (range: 17-302). More pts were treated for curative intent (73%) than palliative (27%). 71% and 90% stated RT was ‘worth it’ at end of treatment and at first f/u, respectively. Upon therapy completion, 52% were ‘uncertain’ if quality of life (QOL) improved. However, at first f/u, 58% reported improved QOL. Temporal differences in treatment time favored morning treatment time over evening being ‘worthwhile’ (77% vs 61%; p = 0.015). This difference remained significant on multivariate analysis (p = 0.02). Longer elapsed days conferred higher likelihood of treatment being ‘worthwhile’ compared to ‘uncertain’ (30 days vs 24 days; p = 0.023), also significant on multivariate analysis (p = 0.029). Treatment time and elapsed days were not predictive of improved QOL. Age, gender, race, marital status, employment, treatment intent or modalities, treatment delays, distance travelled, insurance type, anatomic site of treatment, and cancer stage, did not predict pt satisfaction. Conclusions: RT as being ‘worthwhile’ was associated with morning treatment times and total duration of treatment as measured by total elapsed days. Among variables analyzed, there were no significant predictors of improved QOL. The majority of patients are satisfied with RT but there is room for improvement with those treated in afternoon or in shorter durations.
Introduction: Anal cancer is more frequent among people living with HIV/AIDS (PLWHA), with incidence rates increasing among PLWHA despite effective HIV treatments. This highlights the need for effective anal cancer screening guidelines. As part of the development of such guidelines for anal cancer prevention, participation and retention in clinical trials (CT) is pivotal. Previous studies showed lower participation of Hispanics in cancer-related CT among PLWHA. We are conducting a randomized controlled trial (RCT) aimed to test the effectiveness of an educational intervention in recruiting PLWHA in one of the anal cancer-related CT of the AIDS Malignancy Consortium (AMC) being conducted in Puerto Rico (PR), the Anal Cancer Prevention Study (ANCHOR). This work describes the methodology of this study and baseline characteristics of study participants. Methods: A collaboration in the development of an educational linear video for anal cancer was conducted in 2015 between UC Davis Comprehensive Cancer Center and the University of Puerto Rico (UPR) Comprehensive Cancer Center. As a result, a RCT is being conducted at the 9 immunology/STI clinics of the PR Department of Health, to test the effectiveness of this audiovisual intervention in increasing: (1) HIV/AIDS patients' knowledge of anal cancer and CT; (2) favorable attitudes towards CT; and (3) willingness to participate in ANCHOR, a CT aimed to developing anal cancer screening and treatment guidelines for PLWHA. Our RCT is expected to recruit 308 PLWHA aged ≤ 35 years, that receive HIV care at these clinics, and that have not participated in any cancer CT or have been diagnosed with any cancer type in their lifetime. The randomization of this study is at the clinic level, in which we randomly allocated each clinic to either: the intervention group (receiving the audiovisual educational intervention focused on CT and anal cancer screening) or the control group (receiving a standard CT recruitment education). Participants who agree to participate complete an informed consent, a baseline survey, and an initial contact survey through a face-to-face computer-based interview. Participants are followed-up at 2-weeks (by phone) and 3-months (at the clinic) in order to assess changes in willingness to participate in anal cancer CT and to determine if the participant has called, been screened, or been enrolled into an AMC CT. Results: As of Mid-June 2016, 134 patients had been screened, 125 (93%) PLWHA were eligible, and 124 of them (99%) agreed to participate in the study. Of the recruited participants, the mean age was 55±10 years, 60% were men, 56% had ≤12 years of education, and 96% had an annual family income ≤ $35,000. Close to half (44%) of the participants reported never having heard about CT, while most (84%) could not correctly identify the definition of a CT. Although 98% of participants thought that participating in an anal cancer CT could be beneficial for their health, 91% had never heard of a high-resolution anoscopy (HRA) and 26% were not interested in participating in a CT that used HRA. Among those not interested in participating in a CT that used HRA, the most common reasons reported were: lack of information provided about the study (87%), and fear to the procedure (6%). Conclusions: Preliminary data at the baseline interview showed a high willingness of PLWHA to participate in anal cancer CT; however, there is a lack of knowledge about anal cancer CT and CT in general. The methodology developed as well as the information obtained will be necessary to develop specific strategies to increase knowledge and awareness about anal cancer and anal cancer CT among PLWHA and promote the advance of RCT for cancer prevention among PLWHA. Citation Format: Vivian Colon-Lopez, Omar Valentin-Rivera, Marievelisse Soto-Salgado, Darilyn Rivera, Julie H. Dang, DA Letran, Moon Jr Chen, Ana Patricia Ortiz. Randomized controlled trial to increase anal cancer clinical trial recruitment among persons living with HIV/AIDS in Puerto Rico: Methodology and baseline assessment. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr C03.
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