The planned number of programs was delivered, but the proportion of study-eligible attendees was lower than predicted. This community-based participatory research approach was largely successful in involving the community served in the development and implementation of the intervention and study.
Background In the United States, there are lower rates of breastfeeding among African American mothers, particularly those who are younger women. Recent epidemiological studies have shown a strong association of more aggressive types of breast cancer (estrogen receptor negative) among African American women, with a higher risk in African American women who did not breastfeed their children. Objective This study aims to describe the process evaluation of recruitment and educational strategies to engage pregnant African American participants for a pilot study designed to determine whether social media messaging about breast cancer risk reduction through breastfeeding may positively influence breastfeeding rates. Methods This pilot study is conducted in collaboration with a local Women, Infants, and Children (WIC) organization and hospital and prenatal clinics of a local health care network. To engage African American women to enroll in the study, several methods and monitoring processes were explored, including WIC electronic text-based messages sent out to all phones of current WIC recipients (referred to as e-blasts); keyword responses to texts from flyers and posters in local community-based organizations, hospitals, and prenatal clinics; keyword responses using electronic links posted in established Facebook groups; and snowball recruitment of other pregnant women by current participants through Facebook. Once enrolled, participants were randomized to 2 study conditions: (1) an intervention group receiving messages about breast cancer risk reduction and breastfeeding or (2) a control group receiving breastfeeding-only messages. Data were obtained through electronic monitoring, SurveyMonkey, qualitative responses on Facebook, focus groups, and interviews. Results More than 3000 text messages were sent and received through WIC e-blasts and keyword responses from flyers. A total of 472 women were recruited through WIC e-blast, and 161 responded to flyers and contacts through the local health care network, community-based organizations, Facebook, and friend referrals. A total of 633 women were assessed for eligibility to participate in the study. A total of 288 pregnant African American women were enrolled, consented, and completed presurvey assessments (102.8% of the goal), and 22 participants attended focus groups or interviews reporting on their experiences with Facebook and the educational messages. Conclusions This process evaluation suggests that using electronic, smartphone apps with social media holds promise for both recruitment and conduct of health education intervention studies for pregnant African American women. Providing messaging and resources through social media to reinforce and educate women about breastfeeding and potentially provide lactation support is intriguing. Convenience (for researchers and participants) is an attribute of social media for this demographic of women and worthy of further research as an educational tool. Trial Registration ClinicalTrials.gov NCT03680235; https://clinicaltrials.gov/ct2/show/NCT03680235
Background Bladder cancer is one of the top 10 most common cancers in the United States. Most bladder cancers (70%-80%) are diagnosed at early stages as non–muscle-invasive bladder cancer (NMIBC), which can be removed surgically. However, 50% to 80% of NMIBC cases recur within 5 years, and 15% to 30% progress with poor survival. Current treatments are limited and expensive. A wealth of preclinical and epidemiological evidence suggests that dietary isothiocyanates in cruciferous vegetables (Cruciferae) could be a novel, noninvasive, and cost-effective strategy to control NMIBC recurrence and progression. Objective The aim of this study is to develop a scalable dietary intervention that increases isothiocyanate exposure through Cruciferae intake in NMIBC survivors. Methods We worked with a community advisory board (N=8) to identify relevant factors, evidence-based behavior change techniques, and behavioral theory constructs used to increase Cruciferae intake in NMIBC survivors; use the PEN-3 Model focused on incorporating cultural factors salient to the group’s shared experiences to review the intervention components (eg, the saliency of behavioral messages); administer the revised intervention to community partners for their feedback; and refine the intervention. Results We developed a multicomponent intervention for NMIBC survivors consisting of a magazine, tracking book, live telephone call script, and interactive voice messages. Entitled POW-R Health: Power to Redefine Your Health, the intervention incorporated findings from our adaptation process to ensure saliency to NMIBC survivors. Conclusions This is the first evidence-based, theoretically grounded dietary intervention developed to reduce bladder cancer recurrence in NMIBC survivors using a systematic process for community adaptation. This study provides a model for others who aim to develop behavioral, community-relevant interventions for cancer prevention and control with the overall goal of wide-scale implementation and dissemination.
BACKGROUND Bladder cancer is one of the top 10 most common cancers in the US. Most bladder cancer (70-80%) is diagnosed at early stages as non-muscle invasive bladder cancer (NMIBC), which can be removed surgically. However, 50-80% of NMIBC recurs within 5 years, and 15-30% progresses with poor survival. Current treatment is limited and expensive. A wealth of preclinical and epidemiologic evidence suggests that dietary isothiocyanates (ITCs) in cruciferous vegetables (Cruciferae) could be a novel, non-invasive, and cost-effective strategy to control NMIBC recurrence and progression. Yet a scalable dietary intervention that increases ITC exposure through Cruciferae intake in NMIBC survivors has not been developed. OBJECTIVE This paper will describe a systematic process through which a dietary intervention for bladder cancer survivors was developed that can serve as a model for others who aim to develop evidence-based behavioral interventions for cancer prevention. METHODS We used a systematic process to adapt evidence-based dietary interventions into a Cruciferae intervention for NMIBC survivors. We 1) identified relevant factors, evidence-based behavioral techniques, and behavioral theory constructs used to increase cruciferae intake in NMIBC survivors; 2) used the PEN-3 model to review the intervention’s components (e.g. saliency of behavioral messages); 3) administered the revised intervention to community partners for their feedback; and 4) refined the intervention based on Step 3. RESULTS We developed a multi-component intervention for NMIBC survivors consisting of a magazine, tracking book, a live phone-call script, and interactive voice messages (IVR). Entitled “POW-R Health: Power to Redefine Your Health”, the intervention incorporated findings from our adaptation process to ensure saliency to NMIBC survivors. CONCLUSIONS This is the first evidence-based, theoretically grounded dietary intervention developed to reduce bladder recurrence in NMIBC survivors using a systematic process for community adaptation. This study provides a model for others who aim to develop behavioral, community-relevant interventions for cancer prevention/control, with the overall goal of wide-scale implementation and dissemination.
Few eligible patients receive lung cancer screening. We developed the Lung AIR (awareness, information, and resources) intervention to increase community education regarding lung cancer screening. The intervention was designed as an inperson group intervention; however, the COVID-19 pandemic necessitated adapting the mode of delivery. In this study we examined intervention feasibility and efficacy overall and by mode of delivery (in-person group vs. one-on-one phone) to understand the impact of adapting community outreach and engagement strategies. Feasibility was examined through participant demographics. Efficacy was measured through pre/post knowledge, attitudes, and beliefs about lung cancer screening, and intention to complete screening. We reached N = 292 participants. Forty percent had a household income below $35,000, 58% had a high school degree or less, 40% were Hispanic, 57% were Black, and 84% reported current or past smoking. One-on-one phone sessions reached participants who were older, had lower incomes, more current smoking, smoked for more years, more cigarettes per day, lower pre-intervention lung cancer screening knowledge, and higher pre-intervention fear and worry. Overall pre/post test scores show significant increases in knowledge, salience, and coherence, and reduced fear and worry. Participants in the one-on-one phone sessions had significantly higher increases in salience and coherence and intention to complete screening compared to participants in the in-person group sessions. The Lung AIR intervention is a feasible and effective community-based educational intervention for lung cancer screening. Findings point to differences in reach and efficacy of the community-based intervention by mode of delivery.
Purpose of Study: Incidence rates for aggressive ER- breast cancer in African Americans have continued to increase, and epidemiologic studies (AMBER Consortium) suggest breastfeeding can reduce risks for this deadly disease. Notably, breastfeeding rates are lowest among poor, younger, and African American mothers, offering an opportunity to intervene. Health behavior theories show that perceived risk for health problems can be a motivating factor for behavior change. The purpose of this NCI R21 study was to examine the behavioral impact of a tailored intervention to disseminate new scientific findings about reducing cancer risk for African American women by breastfeeding. Methods: A multimodal approach was used to reach pregnant African American women accessing services through Women, Infant and Children (WIC), community-based organizations and OB/GYNs to invite them to participate in a tailored social media educational intervention. Recruitment was delivered using Telerivet (computer-based mobile messaging platform) and participants were connected to an automated invitation to Survey Monkey to complete eligibility, consent, and pre and post-partum surveys from smart phones. Eligible participants were randomized into a control Facebook (FB) group receiving only breastfeeding messages or an intervention FB group that received both breastfeeding and breast cancer risk reduction messages. All messaging was tailored for African American mothers. Multiple polls and FB actions were used to increase participant engagement. Results: To date, a total of 612 women were recruited, 356 were eligible, 287 women consented, 261 completed pre-surveys, and 134 have currently completed post-surveys. Participants ranged from 18-54 years of age. Preliminary results show significant differences in breast cancer risk perception with an average presurvey mean of 3.07 to a post-survey mean of 1.31 (p <.001). Perceived behavioral control pre- to post-birth indicates significant increases in breastfeeding self-efficacy in knowledge (p < .001), confidence (p =.03), support (p=.002), skills (p=.01), and ease (p=.01). Qualitative interactions were captured through participation in the FB group and intragroup analysis is ongoing. Conclusions: Results will provide crucial information to determine if risk perceptions can be transformative in creating a shift from formula-as-an-equivalent-feeding-practice to “Breast is Best” among African American women within their social context—basically creating a culture-change model. Process data on intervention methods and the potential role to effectively disseminate this new message to increase breastfeeding will be presented. Citation Format: Cassy Dauphin, Frances G. Saad-Harfouche, Maria Keller, Nikia Clark, Elisa M. Rodriguez, D'zare Triplette, Marc Kiviniemi, Deborah O. Erwin. Using social media to communicate breast cancer risk and promote breastfeeding among pregnant African American women [abstract]. In: Proceedings of the Eleventh AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2018 Nov 2-5; New Orleans, LA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl):Abstract nr A017.
Background: It is documented that inequities in research participation by minority and underrepresented populations limits the progression of personalized medicine for cancer treatment for these groups. A lack of understanding essential information during the consent process and poor physician-patient communication have been noted as two overarching barriers to patients participating in translational, clinical and biospecimen research. To address these major patient barriers, we developed a plain language research literacy support (RLS) tool to improve the consent process and facilitate dialogue between physicians/research staff and patients. We describe the tool's iterative development process and testing of the developed culturally appropriate RLS tool. Methods: We tested the tool among: 1) patient participants ≥18 years of age, who were able to read and speak English from communities associated with five academic centers in the Midwest and Northeast United States; and 2) eligible recruiters who were employed at an academic center and actively recruiting patients into research. The development process for the RLS tool consisted of two phases: cognitive and beta testing. During cognitive testing, we solicited feedback from patient and recruiter participants about the content and format of the tool including low literacy language, pictures and recommendations for additional content. The tool consisted of concept cards to provide information to assist patients in making an informed decision about participating in research. During beta testing, a condensed version of the tool was tested to assess acceptability and change in knowledge about research participation. Results: Participants included 155 patients (52: cognitive testing phase; 103: beta testing phase) and 20 recruiter participants. Patient participants were mostly females (71%). Self-identified race of patients included: Whites (43%), African Americans (32%), Native Americans (20%), and other (6%). In addition, 23% of patient participants self-identified as Hispanic. During the cognitive testing phase, patient participants reported that the information was clearly laid out and the tool explained the different steps in the recruitment and enrollment process. Patient participants indicated they had learned new information related to randomization, standard of care, coded-information, and biobanking. Although some patient participants acknowledged the cards contained a great deal of information, most reported that the information was essential. Several participants suggested cards be tailored for the Native American population. Recruiters indicated that the cards provided useful information and would assist patients and research staff. During beta testing phase, 98% of participants agreed the information on the cards helped them understand clinical research. After reviewing the cards, 49% of patient participants reported that they would be very likely to participate in research and 32% reported being somewhat likely to participate in research. The majority (61%) of participants indicated that if invited to participate in a research study, they would prefer that the cards would be mailed to them in advance while 34% wanted to review the cards at their medical appointment. Half of the participants preferred accessing the cards on a computer if administered in a video format. Conclusion: The RLS tool was well received among patient and recruiter participants, making it a potentially valuable resource for enrollment of minority and underrepresented patients into health research. The next step will be to test the RLS tool for effectiveness in a randomized controlled trial. Citation Format: Erika E. de la Riva, Rodney Haring, Elisa M. Rodriguez, Evelyn Gonzalez, Mira Katz, Nikia Clark, Whitney Ann E. Henry, Rosa O. Ortiz, Barret J. Zimmermann, Marla L. Clayman, Deborah O. Erwin, Judith S. Kaur, Melissa A. Simon. Development and beta testing of a culturally appropriate research literacy support tool to increase research participation among minority and underrepresented populations. [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 A11.
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