Spatial N-glycomics of the normal breast microenvironment reveals fucosylated and high-mannose N-glycan signatures related to BI-RADS density and ancestry.

Higher breast cancer mortality rates continue to disproportionally affect black women (BW) compared to white women (WW). This disparity is largely due to differences in tumor aggressiveness that can be related to distinct ancestry-associated breast tumor microenvironments (TMEs). Yet, characterization of the normal microenvironment (NME) in breast tissue and how they associate with breast cancer risk factors remains unknown. N-glycans, a glucose metabolism-linked post-translational modification, has not been characterized in normal breast tissue. We hypothesized that normal female breast tissue with distinct Breast Imaging and Reporting Data Systems (BI-RADS) categories have unique microenvironments based on N-glycan signatures that varies with genetic ancestries. Profiles of N-glycans were characterized in normal breast tissue from BW (n = 20) and WW (n = 20) at risk for breast cancer using matrix assisted laser desorption/ionization (MALDI) mass spectrometry imaging (MSI). A total of 176 N-glycans (32 core-fucosylated and 144 noncore-fucosylated) were identified in the NME. We found that certain core-fucosylated, outer-arm fucosylated and high-mannose N-glycan structures had specific intensity patterns and histological distributions in the breast NME dependent on BI-RADS densities and ancestry. Normal breast tissue from BW, and not WW, with heterogeneously dense breast densities followed high-mannose patterns as seen in invasive ductal and lobular carcinomas. Lastly, lifestyles factors (e.g. age, menopausal status, Gail score, BMI, BI-RADS) differentially associated with fucosylated and high-mannose N-glycans based on ancestry. This study aims to decipher the molecular signatures in the breast NME from distinct ancestries towards improving the overall disparities in breast cancer burden.

Results from the Delivery of a Community Health Worker Training to Advance Competencies in Cancer Genomics.

INTRODUCTION: Less than half of eligible Black women are assessed for genetic risk and only 28% engage in recommended hereditary breast and ovarian cancer (HBOC) risk-reducing interventions. CHWs are trusted individuals that work as a liaison between health systems and the community to improve access to services and support cancer prevention efforts, though they are an overlooked resource to support genetic risk assessment. To address the need and training gaps for CHWs, we developed and assessed an online training program to build CHW's competencies in cancer genomics and use of health information technologies to navigate high-risk individuals to appropriate genetic services. METHODS: The curriculum and 10 training modules were developed through engaging a panel of experts in a three-round Delphi process. Recruitment focused on CHWs who worked in clinical settings or groups providing outreach or health services to Black women. We assessed: changes in knowledge and attitudes about HBOC and genomics, as well as the perceptions about the quality and implementation of the training. RESULTS: Forty-six individuals expressed interest in the training after recruitment. Thirty eight individuals were eligible for the training and 26 completed the course. We found improvements in knowledge and genomics competencies immediately post-course, but the majority of these improvements were not sustained at 3-month follow-up. The training was highly rated for its relevance to CHW work and overall delivery. Top rated sessions included HBOC overview and family history collection. On average, participants reported discussing HBOC with 17 individuals at 3-month follow-up. CONCLUSION: Championing a diverse cancer and genomics workforce can help address the goals of the National Cancer Plan to improve early detection and health equity. Through this training, CHWs gained critical cancer and genomics knowledge that was then applied to their primary roles.

Barriers and facilitators to involvement in cancer education opportunities among South Carolina cancer care professionals: A cancer training and diversity, equity, and inclusion training needs assessment.

INTRODUCTION: It is estimated that 1.9 million new cases of cancer will be diagnosed in 2023, with 33,890 occurring in South Carolina. Assessing the needs, barriers, and facilitators of healthcare professionals' (HCP) education in South Carolina is a step towards creating meaningful, equity-promoting cancer-based education/training. METHODS: We developed a mixed-methods REDCap survey instrument to assess HCP needs, which we disseminated via email to HCPs from divisions involved in cancer care in a South Carolina academic medical center health system. We analyzed quantitative data with univariate frequency analysis and employed an inductive content analysis approach for qualitative data. RESULTS: The response rate for the survey was 33.0% (95/284) and 44.2% (42/95) of respondents reported a perceived barrier to attending educational programming, with majority citing time. Most respondents (71.8%) self-identified as non-Hispanic White. HCPs reported having clear interests in trainings, particularly ones focused on additional training in diversity, equity, and inclusion (DEI). Other identified educational needs included cancer treatment updates, nutrition, mental health, and social risk factors. Receiving credits for the trainings was a motivator for both general topics and DEI topics (94.7% and 74.7%, respectively). CONCLUSIONS: There is a need to better align cancer education delivery for HCPs with their training needs and busy schedules as has been a demonstrated want by HCPs in topics that would increase knowledge and practice of DEI. As majority of respondents identified as non-Latine White, it is imperative to diversify the knowledge of the workforce to ensure that HCPs provide optimal care to patients from diverse backgrounds.

Factors associated with parental human papillomavirus vaccination intentions among adolescents from socioeconomically advantaged versus deprived households: a nationwide, cross-sectional survey.

Background: In the USA, HPV vaccine coverage is substantially lower among adolescents from high-income households compared to their low-income counterparts. We examined and compared the factors associated with parental HPV vaccination intentions between socioeconomically divergent groups. Methods: Data from unvaccinated and not fully HPV-vaccinated adolescents from the 2017-2021 National Immunization Survey (NIS)-Teen were analyzed. Socioeconomically advantaged vs. deprived groups were identified based on dichotomized income (material capital) and education (social capital). Parental intent to initiate and complete the HPV vaccine series was compared using bivariable analysis and the factors associated with lacking intent were identified. Findings: The 2017-2021 NIS-Teen included a total of 212,643 participants; the final analytical sample consisted of 105,958 adolescents (an estimated 10.3 million adolescents) who were unvaccinated or not fully vaccinated. In the advantaged group, 64.7% of parents of unvaccinated adolescents (equating to 2.4 million US adolescents) had no intention to initiate the HPV vaccine compared to 40.9% of parents in the deprived group (equating to 0.2 million adolescents) (P < 0.0001; S > 13.29). The most frequent reason for lacking intent in the advantaged group was 'safety concerns' (25.5%). In the deprived group, 'lack of knowledge', 'not recommended', and 'not needed' were common reasons (nearly 15% each). Lack of intent to complete the HPV vaccine series was higher in the advantaged group (43.9%; 1.1 million adolescents) compared to the deprived group (25.2%; 0.08 million adolescents) (P < 0.0001; S > 13.29). More than half in the advantaged group (58.4%) and over a third (37.1%) in the deprived group cited 'already up to date' as the main reason for not completing the HPV vaccine series. Interpretation: Lack of intent to initiate and complete the HPV vaccination series, particularly among socioeconomically advantaged parents is a significant barrier to achieving the national goal in the USA. Funding: The US National Institute on Minority Health and Health Disparities, the National Center for Advancing Translational Sciences, MUSC Hollings Cancer Center Seed funding, and the US National Cancer Institutes.

Community Trust, Attitudes and Preferences Related to Participation in Cancer Research in South Carolina.

African American adults have the highest mortality rate for most cancers in the United States, and meaningful, community-driven research is needed to inform optimal strategies for addressing these disparities. Unfortunately, research mistrust, often driven by historical inequities, is well-documented among African Americans.This study explored trust, attitudes, and preferences regarding participation in cancer research activities among primarily African American and other medically underserved communities in South Carolina from August 2020 to December 2021. Trust was measured using the Trust in Medical Researchers Scale (TMRS).The mean TMRS score for all study participants (N = 179) was 26.54 (SD 7.57) out of 48 (maximum possible score). Significant differences in mean values of the TMRS scores were only observed for gender (p = 0.0056) and race (p < 0.0001), with White participants and males reporting higher levels of trust in medical researchers. Overall, 52.5% of participants were somewhat likely or likely to volunteer to participate in a cancer research opportunity, with White participants (73.81%) being more likely to participate in cancer research compared to African American participants (45.74%) (p = 0.0054). Furthermore, participants were most willing to provide saliva (80.85%) and urine samples (80.85%), new blood samples (60.64%), stool samples (54.26%), medical records or laboratory results (52.13%) and least willing to allow left-over blood, tissue, or other fluids from medical procedures to be used for research (50%).These results provide evidence of the need for concerted programmatic efforts to build trust in cancer researchers, particularly among females and African American adults.

Development of a Hereditary Breast and Ovarian Cancer and Genetics Curriculum for Community Health Workers: KEEP IT (Keeping Each other Engaged Program via IT) Community Health Worker Training.

We developed a curriculum for community health workers (CHWs) using an innovative, community-engaged focus group and Delphi process approach. Equipping CHWs with knowledge of hereditary breast and ovarian cancer syndrome (HBOC) and genetics could help enhance identification of women at risk for HBOC, referral, and navigation through genetic services. We conducted focus groups with five CHWs and a three-round Delphi process with eight experts. In the first round of the Delphi process, participants rated and commented on draft curriculum modules. The second round involved live video discussion to highlight points of confusion and concern in the modules. The curriculum was revised and refined based on quantitative and qualitative data and reassessed by the experts in Round 3. Ultimately, agreement was achieved on eight of 10 modules when assessing for clarity of learning objectives, seven out of 10 when assessing for adult learning theory, and nine out of 10 when assessing for participants' ability to learn desired knowledge. We plan to virtually deliver this curriculum to CHWs to enhance their HBOC and genomic competencies. By equipping CHWs to understand and participate in genomics education, we can enable more equitable participation in genomics-informed clinical care and research. Beyond this curriculum, the Delphi methodology can further be used to design content for new CHW curriculums.

Identifying barriers to obstructive sleep-disordered breathing care: Parental perspectives.

OBJECTIVE: Despite established clinical practice guidelines for pediatric obstructive sleep-disordered breathing (SDB), disparities persist for this common condition. Few studies have investigated parental experiences about challenges faced in obtaining SDB evaluation and tonsillectomy for their children. To better understand parent-perceived barriers to treatment of childhood SDB, we administered a survey to assess parental knowledge of this condition. MATERIALS & METHODS: A cross-sectional survey was designed to be completed by parents of children diagnosed with SDB. Two validated surveys were administered: 1) Barriers to Care Questionnaire and 2) Obstructive Sleep-Disordered Breathing and Adenotonsillectomy Knowledge Scale for Parents. Logistic regression modeling was performed to assess for predictors of parental barriers to SDB care and knowledge. RESULTS: Eighty parents completed the survey. Mean patient age was 7.4 ± 4.6 years, and 48 (60%) patients were male. The survey response rate was 51%. Patient racial/ethnic categories included 48 (60.0%) non-Hispanic White, 18 (22.5%) non-Hispanic Black, and 14 (17.5%) Other. Parents reported challenges in the 'Pragmatic' domain, including appointment availability and cost of healthcare, as the most frequently described barrier to care. Adjusting for age, sex, race, and education, parents in the middle-income bracket ($26,500 - $79,500) had higher odds of reporting greater barriers to care than parents in the highest (>$79,500) income tier (OR 5.536, 95% CI 1.312-23.359, P = 0.020) and lowest income tier (<$26,500) (OR 3.920, 95% CI 1.096-14.020). Parents whose children had tonsillectomy (n = 40) answered only a mean 55.7% ± 13.3% of questions correctly on the knowledge scale. CONCLUSION: Pragmatic challenges were the most encountered barrier that parents reported in accessing SDB care. Families in the middle-income tier experienced the greatest barriers to SDB care compared to lower and higher income families. In general, parental knowledge of SDB and tonsillectomy was relatively low. These findings represent potential areas of improvement to target interventions to promote equitable care for SDB.

Parental Experiences With Access to Care for Obstructive Sleep-Disordered Breathing: A Qualitative Study.

OBJECTIVE: Despite evidence-based guidelines for obstructive sleep-disordered breathing (SDB), recent studies continue to highlight treatment inequities. We used qualitative research methods to examine parental facilitators and barriers to SDB treatment. STUDY DESIGN: Qualitative interviews. SETTING: Tertiary care center. METHODS: Semistructured interviews were conducted (January-April 2022) with parents of children with SDB who underwent tonsillectomies to understand the processes of SDB detection and accessing specialty care. Interviews were conducted until thematic saturation was reached and coded using NVivo software. RESULTS: Of the 17 parents who completed the key informant interviews, 6 (35%) were of non-Hispanic black race, and 3 (17.6%) interviews were conducted in Spanish. Parents noted that the more knowledge their primary care provider (PCP) had about SDB, the easier it was to obtain a diagnostic workup (41%). The most common barrier included difficulty obtaining a specialist (otolaryngology or sleep medicine) referral from their PCP and encountering providers who were dismissive of parent-reported symptoms related to SDB, leading them to seek a second opinion or self-refer (53%). Medicaid coverage was a strong facilitator to receipt of care (59%). Three (17.6%) parents noted alienation in the process due to racial bias or language barriers. CONCLUSION: Parental interviews revealed that facilitators of SDB treatment included high clinician knowledge and perceived importance of SDB as well as Medicaid insurance which decreased financial strain. Parents also cited the attainment of referrals as a significant barrier to obtaining specialty evaluation. These findings identify potential modifiable areas to tailor future interventions for timely and equitable SDB care.

Highlighting the value of Alzheimer's disease-focused registries: lessons learned from cancer surveillance.

Like cancer, Alzheimer's disease and related dementias (ADRD) comprise a global health burden that can benefit tremendously from the power of disease registry data. With an aging population, the incidence, treatment, and mortality from ADRD is increasing and changing rapidly. In the same way that current cancer registries work toward prevention and control, so do ADRD registries. ADRD registries maintain a comprehensive and accurate registry of ADRD within their state, provide disease prevalence estimates to enable better planning for social and medical services, identify differences in disease prevalence among demographic groups, help those who care for individuals with ADRD, and foster research into risk factors for ADRD. ADRD registries offer a unique opportunity to conduct high-impact, scientifically rigorous research efficiently. As research on and development of ADRD treatments continue to be a priority, such registries can be powerful tools for conducting observational studies of the disease. This perspectives piece examines how established cancer registries can inform ADRD registries' impact on public health surveillance, research, and intervention, and inform and engage policymakers.

Anticipating adaptation: tracking the impact of planned and unplanned adaptations during the implementation of a complex population-based genomic screening program.

In 2021, the Medical University of South Carolina (MUSC) launched In Our DNA SC. This large-scale initiative will screen 100,000 individuals in South Carolina for three preventable hereditary conditions that impact approximately two million people in the USA but often go undetected. In anticipation of inevitable changes to the delivery of this complex initiative, we developed an approach to track and assess the impact of evaluate adaptations made during the pilot phase of program implementation. We used a modified version of the Framework for Reporting Adaptations and Modification-Enhanced (FRAME) and Adaptations to code adaptations made during the 3-month pilot phase of In Our DNA SC. Adaptations were documented in real-time using a REDCap database. We used segmented linear regression models to independently test three hypotheses about the impact of adaptations on program reach (rate of enrollment in the program, rate of messages viewed) and implementation (rate of samples collected) 7 days pre- and post-adaptation. Effectiveness was assessed using qualitative observations. Ten adaptations occurred during the pilot phase of program implementation. Most adaptations (60%) were designed to increase the number and type of patient contacted (reach). Adaptations were primarily made based on knowledge and experience (40%) or from quality improvement data (30%). Of the three adaptations designed to increase reach, shortening the recruitment message potential patients received significantly increased the average rate of invitations viewed by 7.3% (p = 0.0106). There was no effect of adaptations on implementation (number of DNA samples collected). Qualitative findings support improvement in effectiveness of the intervention after shortening the consent form and short-term positive impact on uptake of the intervention as measured by team member's participation. Our approach to tracking adaptations of In Our DNA SC allowed our team to quantify the utility of modifications, make decisions about pursuing the adaptation, and understand consequences of the change. Streamlining tools for tracking and responding to adaptations can help monitor the incremental impact of interventions to support continued learning and problem solving for complex interventions being delivered in health systems based on real-time data.

We tracked adaptations to a large-scale population genetic screening program at the Medical University of South Carolina (MUSC) using the Framework for Reporting Adaptations and Modifications-Enhanced (FRAME). We found adaptations during program roll-out that impacted implementation outcomes. Our approach to tracking adaptations for the program allowed us to quantify the utility of modifications, make decision about pursuing changes, and understand consequences of adaptations.

Evaluation of the First-Year Data from an HPV Vaccination Van Program in South Carolina, U.S.

Human papillomavirus (HPV) infections are linked to at least six different types of cancer. The Medical University of South Carolina (MUSC) Hollings Cancer Center (HCC) and Department of Pediatrics leaders identified suboptimal rates of HPV vaccinations in rural and medically underserved communities in South Carolina (SC). To address this major public health problem in SC, they received funding from the HealthyMe/HealthySC (HMHSC) program and HCC to create a statewide community engagement-focused HPV Vaccination Van Program in October 2021. The Program provides HPV vaccinations and other childhood immunizations in school districts and HMHSC health clinics throughout SC, focusing on children aged 9-18 who are eligible for the U.S. Centers for Disease Control and Prevention's Vaccines for Children Program. As of 14 December 2022, the Program administered vaccinations in 16 counties of SC to 552 participants, 243 of whom received HPV vaccinations and were predominantly female (57.2%), aged 4-18 (95.9%), and self-identified as White (44.0%), Black (33.2%), or Hispanic/Latino (15.1%). Most had Medicaid (53.1%)/no insurance coverage (25.1%). The Program is expected to expand as the Program's relationship with SC's school districts grows. The Program provides a model for delivering mobile HPV vaccinations to rural children, thus reducing their cancer risk.

The National Conference on Health Disparities Student Research Forum.

The annual National Conference on Health Disparities (NCHD) was launched in 2000. It unites health professionals, researchers, community leaders, and government officials, and is a catalyzing force in developing policies, research interventions, and programs that address prevention, social determinants, health disparities, and health equity. The NCHD Student Research Forum (SRF) was established in 2011 at the Medical University of South Carolina to build high-quality biomedical research presentation capacity in primarily underrepresented undergraduate and graduate/professional students. This paper describes the unique research training and professional development aspects of the NCHD SRF. These include guidance in abstract development, a webinar on presentation techniques and methods, a vibrant student-centric conference, and professional development workshops on finding a mentor and locating scholarship/fellowship funding, networking, and strategies for handling ethical issues in research with mentors. Between 2011 and 2018, 400 undergraduate and graduate/professional students participated in the NCHD SRF. Most students were women (80.5%). Approximately half were African American or black (52.3%), 18.0% were white, and 21.3% were of Hispanic/Latinx ethnicity. The NCHD SRF is unique in several ways. First, it provides detailed instructions on developing a scientific abstract, including content area examples. Second, it establishes a mandatory pre-conference training webinar demonstrating how to prepare a scientific poster. Third, it works with the research mentors, faculty advisors, department chairs, and deans to help identify potential sources of travel funding for students with accepted abstracts. These features make the NCHD SRF different from many other conferences focused on students' scientific presentations.

Racial and Ethnic Disparities in Primary Cleft Lip and Cleft Palate Repair.

OBJECTIVE: To examine the impact of race/ethnicity on timing and postoperative outcomes of primary cleft lip (CL) and cleft palate (CP) repair. DESIGN: Cross-sectional analysis of the National Surgical Quality Improvement Program Pediatric (NSQIP-P) database from 2013 to 2018. PATIENTS AND MAIN OUTCOME MEASURES: Patients under 2 years of age who underwent primary CL or CP repair were identified in the NSQIP-P. Outcomes were the timing of surgery and 30-day readmission and reoperation rates stratified by race and ethnicity. RESULTS: In total, 6021 children underwent CL and 6938 underwent CP repair. Adjusted rates of CL repair over time were 10% lower in Hispanic children (95%CI: 0.84-0.96) and 38% lower for Asian children (95%CI: 0.55-0.70) compared with White infants. CP repair rates over time were 13% lower in Black (95%CI: 0.79-0.95), 17% lower in Hispanic (95%CI: 0.77-0.89), and 53% lower in Asian children (95%CI: 0.43-0.53) than in White infants. Asian patients had the highest rates of delayed surgical repair, with 19.3% not meeting American Cleft Palate-Craniofacial Association (ACPA) guidelines for CL (P < .001) and 28.2% for CP repair (P< .001). Black and Hispanic children had 80% higher odds of readmission following primary CL repair (95%CI: 1.16-2.83 and 95%CI: 1.27-2.61, respectively). CONCLUSIONS: This study of a national database identified several racial/ethnic disparities in primary CL and CP, with reduced receipt of cleft repair over time for non-White children. Asian patients were significantly more likely to have delayed cleft repair per ACPA guidelines. These findings underscore the need to better understand disparities in cleft repair timing and postoperative outcomes.

Lessons Learned from the Pilot Phase of a Population-Wide Genomic Screening Program: Building the Base to Reach a Diverse Cohort of 100,000 Participants.

Background and Objectives: Genomic information is increasingly relevant for disease prevention and risk management at the individual and population levels. Screening healthy adults for Tier 1 conditions of hereditary breast and ovarian cancer, Lynch syndrome, and familial hypercholesterolemia using a population-based approach can help identify the 1−2% of the US population at increased risk of developing diseases associated with these conditions and tailor prevention strategies. Our objective is to report findings from an implementation science study that evaluates multi-level facilitators and barriers to implementation of the In Our DNA SC population-wide genomic screening initiative. Methods: We established an IMPACTeam (IMPlementAtion sCience for In Our DNA SC Team) to evaluate the pilot phase using principles of implementation science. We used a parallel convergent mixed methods approach to assess the Reach, Implementation, and Effectiveness outcomes from the RE-AIM implementation science framework during the pilot phase of In Our DNA SC. Quantitative assessment included the examination of frequencies and response rates across demographic categories using chi-square tests. Qualitative data were audio-recorded and transcribed, with codes developed by the study team based on the semi-structured interview guide. Results: The pilot phase (8 November 2021, to 7 March 2022) included recruitment from ten clinics throughout South Carolina. Reach indicators included enrollment rate and representativeness. A total of 23,269 potential participants were contacted via Epic's MyChart patient portal with 1976 (8.49%) enrolled. Black individuals were the least likely to view the program invitation (28.9%) and take study-related action. As a result, there were significantly higher enrollment rates among White (10.5%) participants than Asian (8.71%) and Black (3.46%) individuals (p < 0.0001). Common concerns limiting reach and participation included privacy and security of results and the impact participation would have on health or life insurance. Facilitators included family or personal history of a Tier 1 condition, prior involvement in genetic testing, self-interest, and altruism. Assessment of implementation (i.e., adherence to protocols/fidelity to protocols) included sample collection rate (n = 1104, 55.9%) and proportion of samples needing recollection (n = 19, 1.7%). There were no significant differences in sample collection based on demographic characteristics. Implementation facilitators included efficient collection processes and enthusiastic clinical staff. Finally, we assessed the effectiveness of the program, finding low dropout rates (n = 7, 0.35%), the identification of eight individuals with Tier 1 conditions (0.72% positive), and high rates of follow-up genetic counseling (87.5% completion). Conclusion: Overall, Asian and Black individuals were less engaged, with few taking any study-related actions. Strategies to identify barriers and promoters for the engagement of diverse populations are needed to support participation. Once enrolled, individuals had high rates of completing the study and follow-up engagement with genetic counselors. Findings from the pilot phase of In Our DNA SC offer opportunities for improvement as we expand the program and can provide guidance to organizations seeking to begin efforts to integrate population-wide genomic screening.

Reflections on Mentorship From Scientists and Mentors in an Alzheimer's Disease Focused Research Training Program.

This paper presents reflections on mentorship from scientists and mentors of the National Institute on Aging (NIA)-funded Carolina Center on Alzheimer's Disease and Minority Research (CCADMR). Using a network approach to mentoring, this program aims to increase the pipeline of underrepresented minority (URM) scientists studying Alzheimer's disease (AD) disparities. Six mentors and five scientists participated in interviews. Thematic analysis identified recurring themes; transcripts of mentors and scientists were compared. Most common thematic categories identified by mentors included experience interacting with scientists, goals as a mentor, recruitment of underrepresented minorities, scientists' challenges, and programmatic qualities. The most mentioned categories by scientists were challenges, seminars, working with mentors, career development, and project experience. The CCADMR will use findings to enhance the experience and training methods for future grant years. Results can benefit other training programs focused on aging and AD.

A pragmatic implementation research study for In Our DNA SC: a protocol to identify multi-level factors that support the implementation of a population-wide genomic screening initiative in diverse populations.

BACKGROUND: In 2021, the Medical University of South Carolina (MUSC) partnered with Helix, a population genetic testing company, to offer population-wide genomic screening for Centers for Disease Control and Preventions' Tier 1 conditions of hereditary breast and ovarian cancer, Lynch syndrome, and familial hypercholesterolemia to 100,000 individuals in South Carolina. We developed an implementation science protocol to study the multi-level factors that influence the successful implementation of the In Our DNA SC initiative. METHODS: We will use a convergent parallel mixed-methods study design to evaluate the implementation of planned strategies and associated outcomes for In Our DNA SC. Aims focus on monitoring participation to ensure engagement of diverse populations, assessing contextual factors that influence implementation in community and clinical settings, describing the implementation team's facilitators and barriers, and tracking program adaptations. We report details about each data collection tool and analyses planned, including surveys, interview guides, and tracking logs to capture and code work group meetings, adaptations, and technical assistance needs. DISCUSSION: The goal of In Our DNA SC is to provide population-level screening for actionable genetic conditions and to foster ongoing translational research. The use of implementation science can help better understand how to support the success of In Our DNA SC, identify barriers and facilitators to program implementation, and can ensure the sustainability of population-level genetic testing. The model-based components of our implementation science protocol can support the identification of best practices to streamline the expansion of similar population genomics programs at other institutions.

Examining Associations Between Neighborhood-Level Social Vulnerability and Care for Children With Sleep-Disordered Breathing.

OBJECTIVE: We aim to investigate the impact of neighborhood-level social vulnerability on otolaryngology care for children with obstructive sleep-disordered breathing (SDB). STUDY DESIGN: Retrospective cohort study. SETTING: A tertiary children's hospital. METHODS: Children aged 2 to 17 years with SDB were included. Residential addresses were geocoded with geographic information systems, and spatial overlays were used to assign census tract-level social vulnerability index (SVI) scores to each participant. Multivariable logistic regression models were used to estimate associations of neighborhood SVI scores and individual factors with attendance of otolaryngology referral appointment and interventions. RESULTS: The study included 397 patients (mean ± SD age, 5.9 ± 3.7 years; 51% male, n = 203). After adjustment for age and sex, children with higher overall SVI scores (odds ratio [OR], 0.40; 95% CI, 0.16-0.92) and higher socioeconomic vulnerability scores (OR, 0.34; 95% CI, 0.14-0.86) were less likely to attend their referral appointments. The odds of attending referrals were 83% lower (OR, 0.17; 95% CI, 0.09-0.34) for Black children and 73% lower (OR, 0.27; 95% CI, 0.11-0.65) for Hispanic children than for non-Hispanic White children. Medicaid beneficiaries had lower odds of attending their referrals (OR, 0.20; 95% CI, 0.08-0.48) than privately insured children. Overall SVI score was not associated with receiving recommended polysomnography or tonsillectomy. CONCLUSION: In our study, children living in areas of greater social vulnerability were less likely to attend their otolaryngology referral appointments for SDB evaluation, as were children of Black race, Hispanic ethnicity, and Medicaid beneficiaries. These results suggest that neighborhood conditions, as well as patient-level factors, influence patient access to SDB care.

Rural Barriers to Surgical Care for Children With Sleep-Disordered Breathing.

OBJECTIVE: To assess the impact of rural-urban residence on children with obstructive sleep-disordered breathing (SDB) who were candidates for tonsillectomy with or without adenoidectomy (TA). STUDY DESIGN: Retrospective cohort study. SETTING: Tertiary children's hospital. METHODS: A cohort of otherwise healthy children aged 2 to 18 years with a diagnosis of obstructive SDB between April 2016 and December 2018 who were recommended TA were included. Rural-urban designation was defined by ZIP code approximation of rural-urban commuting area codes. The main outcome was association of rurality with time to TA and loss to follow-up using Cox and logistic regression analyses. RESULTS: In total, 213 patients were included (mean age 6 ± 2.9 years, 117 [55%] male, 69 [32%] rural dwelling). Rural-dwelling children were more often insured by Medicaid than private insurance (P < .001) and had a median driving distance of 74.8 vs 16.8 miles (P < .001) compared to urban-dwelling patients. The majority (94.9%) eventually underwent recommended TA once evaluated by an otolaryngologist. Multivariable logistic regression analysis did not reveal any significant predictors for loss to follow-up in receiving TA. Cox regression analysis that adjusted for age, sex, insurance, and race showed that rural-dwelling patients had a 30% reduction in receipt of TA over time as compared to urban-dwelling patients (hazard ratio, 0.7; 95% CI, 0.50-0.99). CONCLUSION: Rural-dwelling patients experienced longer wait times and driving distance to TA. This study suggests that rurality should be considered a potential barrier to surgical intervention and highlights the need to further investigate geographic access as an important determinant of care in pediatric SDB.

HPV Vaccination Champions: Evaluating a Technology-Mediated Intervention for Parents.

Human papillomavirus (HPV) vaccination prevents 6 HPV-related cancers in men and women. Yet, rates of HPV vaccination among adolescents in the United States lag behind other developed nations, revealing a significant public health issue. This feasibility study tested a collaborative online learning environment to cultivate HPV vaccination champions. A 3-month training program recruited parents to serve as proponents and social media influencers to identify solutions to overcome barriers to HPV vaccination. A mixed methods study design included a pretest survey, three online asynchronous focus groups, a posttest survey, as well as a longitudinal follow-up survey at 6 months. Participants included 22 parents who self-identified as female (95.4%) and white (90.9%). Overall, there was a statistically significant difference in knowledge of HPV and HPV vaccination between pretest and posttest (p = 0.0042). This technology-mediated intervention increased parents' confidence and motivated them to speak more freely about HPV vaccination in-person and online with others in their social networks. Participants identified prevalent misinformation about HPV vaccination and learned how to effectively craft messages to address concerns related to safety and side effects, gender, understanding of risk, and sexual activity. Objective measures and qualitative open-ended assessment showed high intervention engagement and treatment satisfaction. All participants (100%) indicated that they enjoyed participating in the intervention. The effectiveness of this feasibility study suggests that social media is an appropriate platform to empower parents to counter vaccine hesitancy and misinformation through HPV vaccination information that is simple and shareable in-person and online.

Using increased trust in medical researchers to increase minority recruitment: The RECRUIT cluster randomized clinical trial.

While extensive literature exists on barriers and strategies to increase minority participation in clinical trials, progress is limited. Few strategies were evaluated in randomized trials. We studied the impact of RECRUIT, a trust-based, cluster randomized minority recruitment trial layered on top of four traditional NIH-funded parent trials (BMT CTN, CABANA, PACES, STEADY-PD III; fifty specialty sites). RECRUIT was conducted from July 2013 through April 2017. Intervention sites implemented trust-based approaches customized to individual sites, promoting relationships between physician-investigators and minority-serving physicians and their minority patients. Control sites implemented only parent trials' recruitment procedures. Adjusting for within-site clustering, we detected no overall intervention effect, odds ratio 1.3 (95% confidence limits 0.7,2.4). Heterogeneity among parent trials may have obscured the effect. Of the four parent trials, three enrolled more minorities in intervention versus control sites. CABANA odds ratio = 4.2 (adjusted 95%CL 1.5,11.3). PACES intervention sites enrolled 63% (10/16) minorities; control sites enrolled one participant in total, a minority, yielding an incalculable odds ratio. STEADY-PD III odds ratio = 2.2 (adjusted 95%CL 0.6,8.5). BMT CTN odds ratio < 1, 0.8 (adjusted 95%CL 0.4,1.8). In conclusion, RECRUIT findings suggest the unique trust-based intervention increased minority recruitment to intervention trials in ¾ of studied trials. Physician-investigators' participation was critical to recruitment success. Lack of commitment to minority recruitment remained a barrier for some physician-investigators, especially in control sites. We recommend prospective physician investigators commit to minority recruitment activities prior to selection as site investigators and trial funding include some compensation for minority recruitment efforts. TRIAL REGISTRATION ClinicalTrials.govNCT01911208.