Modalities for teaching responsible and ethical conduct of research online: Lessons learned from an undergraduate workshop in Utah.

The COVID-19 pandemic disrupted scientific research, teaching, and learning in higher education and forced many institutions to explore new modalities in response to the abrupt shift to remote learning. Accordingly, many colleges and universities struggled to provide the training, technology, and best practices to support faculty and students, especially those at historically disadvantaged and underrepresented institutions. In this study we investigate different remote learning modalities to improve and enhance research education training for faculty and students. We specifically focus on Responsible and Ethical Conduct of Research (RECR) and research mentoring content to help address the newly established requirements of the National Science Foundation for investigators. To address this need we conducted a workshop to determine the effectiveness of three common research education modalities: Live Lecture, Podcast, and Reading. The Live Lecture sessions provided the most evidence of learning based on the comparison between pre- and post-test results, whereas the Podcast format was well received but produced a slight (and non-significant) decline in scores between the pre- and post-tests. The Reading format showed no significant improvement in learning. The results of our workshop illuminate the effectiveness and obstacles associated with various remote learning modalities, enabling us to pinpoint areas that require additional refinement and effort, including the addition of interactive media in Reading materials.

Childhood physical activity and pubertal timing: findings from the LEGACY girls study.

BACKGROUND: There is limited research on whether physical activity (PA) in early childhood is associated with the timing of pubertal events in girls. METHODS: We used data collected over 2011-16 from the LEGACY Girls Study (n = 984; primarily aged 6-13 years at study enrolment), a multicentre North American cohort enriched for girls with a breast cancer family history (BCFH), to evaluate if PA is associated with age at thelarche, pubarche and menarche. Maternal-reported questionnaire data measured puberty outcomes, PA in early childhood (ages 3-5 years) and total metabolic equivalents of organized PA in middle childhood (ages 7-9 years). We used interval-censored Weibull parametric survival regression models with age as the time scale and adjusted for sociodemographic factors, and we tested for effect modification by BCFH. We used inverse odds weighting to test for mediation by body mass index-for-age z-score (BMIZ) measured at study enrolment. RESULTS: Being highly active vs inactive in early childhood was associated with later thelarche in girls with a BCFH [adjusted hazard ratio (aHR) = 0.39, 95% CI = 0.26-0.59), but not in girls without a BCFH. In all girls, irrespective of BCFH, being in the highest vs lowest quartile of organized PA in middle childhood was associated with later menarche (aHR = 0.70, 95% CI = 0.50-0.97). These associations remained after accounting for potential mediation by BMIZ. CONCLUSION: This study provides new data that PA in early childhood may be associated with later thelarche in girls with a BCFH, also further supporting an overall association between PA in middle childhood and later menarche.

Examining and promoting women's health through a descriptive analysis of a novel health tool: the 'Circle of Health'.

A comprehensive perspective of women's health increases healthy equity and broadens the spectrum of care for women. The Circle of Health, a holistic health assessment tool, was created by the National Centers of Excellence in Women's Health (NCEWH). This initiative focuses on advancing women's health needs by empowering them to actively engage about their own health care. The tool includes surveys for seven distinct domains of health: physical, social, emotional, intellectual, environmental, financial, and spiritual. The present study reports comprehensive health findings for a sample of 169 females from Region VIII with data collected from February 2014 to April 2019. The Circle of Health tool highlights distinct health needs across the seven domains. For the present sample of mostly female college students, areas of concern included the emotional, financial, and environmental health domains. Further research is needed to examine the holistic health of women from diverse cultural, racial, age, and socioeconomic backgrounds. The Circle of Health tool describes health, for both women and their health providers, more holistically and encourages an integrative model of care.

Effectiveness of Brief In-person and Virtual Substance Use Disorder Counselor Trainings, 2019-2021.

OBJECTIVES: Paraprofessional substance use disorder counselors (SUDCs) are an important component of expanding access to substance use disorder treatment, but little research on SUDC training currently exists. We evaluated knowledge and self-efficacy gain from brief in-person and virtual workshops for paraprofessional SUDC student-trainees. METHODS: Student-trainees (N = 100) enrolled in an undergraduate SUDC training program completed 6 brief workshops from April 2019 to April 2021. Three in-person workshops during 2019 covered clinical assessment, suicide risk and evaluation, and motivational interviewing, and 3 virtual workshops during 2020-2021 covered family engagement and mindfulness-oriented recovery enhancement, as well as screening, brief intervention, and referral to treatment for expectant mothers. Pretest and posttest online surveys measured student-trainee knowledge gain related to all 6 SUDC modalities. Results of paired sample t tests evaluated changes in knowledge and self-efficacy from pretest to posttest. RESULTS: All 6 workshops showed a significant gain in knowledge from pretest to posttest. Four workshops showed a significant gain in self-efficacy from pretest to posttest. Hedges g ranged from 0.70 to 1.95 for knowledge gain and from 0.61 to 1.73 for self-efficacy gain across workshops. Common language effect sizes indicating the probability that a participant increased one's score from pretest to posttest ranged from 76% to 93% for knowledge gain and from 73% to 97% for self-efficacy gain across workshops. CONCLUSIONS: Results of this study add to the limited research base on training for paraprofessional SUDCs and suggest that in-person learning and virtual learning are both viable brief training tools for students.

Maternal and prenatal factors and age at thelarche in the LEGACY Girls Study cohort: implications for breast cancer risk.

BACKGROUND: Earlier onset of breast development (thelarche) is associated with increased breast cancer risk. Identifying modifiable factors associated with earlier thelarche may provide an opportunity for breast cancer risk reduction starting early in life, which could especially benefit girls with a greater absolute risk of breast cancer due to family history. METHODS: We assessed associations of maternal pre-pregnancy body mass index (BMI), physical activity during pregnancy, gestational weight gain and daughters' weight and length at birth with age at thelarche using longitudinal Weibull models in 1031 girls in the Lessons in Epidemiology and Genetics of Adult Cancer from Youth (LEGACY) Girls Study-a prospective cohort of girls, half of whom have a breast cancer family history (BCFH). RESULTS: Girls whose mothers had a pre-pregnancy BMI of ≥25 and gained ≥30 lbs were 57% more likely to experience earlier thelarche than girls whose mothers had a pre-pregnancy BMI of <25 and gained <30 lbs [hazard ratio (HR) = 1.57, 95% CI: 1.16, 2.12]. This association was not mediated by childhood BMI and was similar in girls with and without a BCFH (BCFH: HR = 1.41, 95% CI: 0.87, 2.27; No BCFH: HR = 1.62, 95% CI: 1.10, 2.40). Daughters of women who reported no recreational physical activity during pregnancy were more likely to experience earlier thelarche compared with daughters of physically active women. Birthweight and birth length were not associated with thelarche. CONCLUSION: Earlier thelarche, a breast cancer risk factor, was associated with three potentially modifiable maternal risk factors-pre-pregnancy BMI, gestational weight gain and physical inactivity-in a cohort of girls enriched for BCFH.

Evaluating visual imagery for participant understanding of research concepts in genomics research.

Informed consent is crucial for participant understanding, engagement, and partnering for research. However, current written informed consents have significant limitations, particularly for complex topics such as genomics and biobanking. Our goal was to identify how participants visually conceptualize terminology used in genomics and biobanking research studies, which might provide a novel approach for informed consent. An online convenience sample was used from May to July 2020 to collect data. Participants were asked to draw 10 randomly chosen words out of 32 possible words commonly used in consent forms for genomics and biobanking research. An electronic application captured drawings that were downloaded into a qualitative software program for analysis. A total of 739 drawings by 269 participants were captured. Participants were mostly female (61.3%), eight different race/ethnicities were represented (15.6% Black, 13.8% Hispanic), and most had some college education (68.8%). Some words had consistent visual themes such as different types of risky activities for risk or consistent specific images such as a double helix for DNA. Several words were frequently misunderstood (e.g., ascend for assent), while others returned few submissions (e.g., phenotype or whole genome sequencing). We found that although some words used in genomics and biobanking research were visually conceptualized in a common fashion, but misunderstood or less well-known words had no, few, or mistaken drawings. Future research can explore the incorporation of visual images to improve participant comprehension during consent processes, and how to utilize visual imagery to address more challenging concepts.

Women's thoughts on receiving and sharing genetic information: Considerations for genetic counseling.

Indications for genetic testing for inherited cancer syndromes are expanding both in the academic and the community setting. However, only a fraction of individuals who are candidates for testing pursue this option. Therefore, it is important to understand those factors that impact the uptake of genetic testing in individuals affected and unaffected with cancer. A successful translation of genomic risk stratification into clinical care will require that providers of this information are aware of the attitudes, perceived risks and benefits, and concerns of individuals who will be considering testing. The purpose of this study was to assess beliefs, attitudes and preferences for genetic risk information, by personal characteristics of women affected and unaffected by breast cancer enrolled in the Breast Cancer Family Registry Cohort. Data for this analysis came from eight survey questions, which asked participants (N = 9,048, 100% female) about their opinions regarding genetic information. Women reported that conveying the accuracy of the test was important and were interested in information related to personal level of risk, finding out about diseases that could be treated, and information that could be helpful to their families. Young women were most interested in how their own health needs might be impacted by genetic test results, while older women were more interested in how genetic information would benefit other members of the family. Interest in how the genetic test was performed was highest among Asian and Hispanic women. Women affected with breast cancer were more likely to report feeling sad about possibly passing down a breast cancer gene, while unaffected women were more uncertain about their future risk of cancer. The variety of informational needs identified has implications for how genetic counselors can tailor communication to individuals considering genetic testing.

Body mass index rebound and pubertal timing in girls with and without a family history of breast cancer: the LEGACY girls study.

BACKGROUND: Heavier body mass index (BMI) is the most established predictor of earlier age at puberty. However, it is unknown whether the timing of the childhood switch to heavier BMI (age at BMI rebound) also matters for puberty. METHODS: In the LEGACY Girls Study (n = 1040), a longitudinal cohort enriched with girls with a family history of breast cancer, we collected paediatric growth chart data from 852 girls and assessed pubertal development every 6 months. Using constrained splines, we interpolated individual growth curves and then predicted BMI at ages 2, 4, 6, 8 and 9 years for 591 girls. We defined age at BMI rebound as the age at the lowest BMI between ages 2 and 8 years and assessed its association with onset of thelarche, pubarche and menarche using Weibull survival models. RESULTS: The median age at BMI rebound was 5.3 years (interquartile range: 3.6-6.7 years). A 1-year increase in age at BMI rebound was associated with delayed thelarche (HR = 0.90; 95% CI = 0.83-0.97) and menarche (HR = 0.86; 95% CI = 0.79-0.94). The magnitude of these associations remained after adjusting for weight between birth and 2 years, was stronger after adjusting for BMI at age 9, and was stronger in a subset of girls with clinically assessed breast development. CONCLUSIONS: Earlier BMI rebound is associated with earlier pubertal timing. Our observation that BMI rebound may be a driver of pubertal timing in girls with and without a family history of breast cancer provides insight into how growth and pubertal timing are associated with breast cancer risk.

Factors leading to satisfaction with counseling for Labor after Cesarean among Latina women in the United States.

BACKGROUND: Cesarean birth, especially repeat cesarean, is associated with significantly higher morbidity than vaginal birth. Appropriately counseling women who are candidates for labor after cesarean (LAC) has the potential to confer significant health benefits for women. Little guidance exists about optimal counseling techniques, especially for Latina women. The aim of this study was to evaluate satisfaction among Latinas about how LAC counseling is performed, specifically as it relates to shared decision making. METHODS: We conducted a qualitative study of pregnant women at several clinics in a Federally Qualified Health Center system in Utah. We interviewed eleven Latina women about satisfaction with recent LAC counseling with a specific aim of obtaining rich, personal narratives rather than reaching data saturation. A codebook representing the most common themes was developed. RESULTS: Three major themes emerged related to LAC counseling including influences on satisfaction, influences on the birth decision process, and preferences surrounding method and timing of counseling. Women experienced greater satisfaction from providers who used jargon-free communication, were perceived as trustworthy, cared about her experiences, and empowered her to make an informed decision. Women's decisions were influenced by prior birth experiences, desire for a safe delivery and easy recovery, and future family planning. CONCLUSIONS: Understanding the aspects of LAC counseling that are most meaningful for Latina women can promote effective communication between patient and provider and improve patient satisfaction. Globally, our findings highlight the importance of evaluating the experiences and preferences of minority groups; majority populations cannot be assumed to speak for minority populations.

Identifying barriers to accessing skilled maternal health care in rural Morocco.

Over the past 30 years, the Moroccan government has made enormous strides towards improving maternal health care for Moroccan women, but outcomes for rural women remain much worse than those of their urban counterparts. This study aimed to understand the experiences of women giving birth in rural Morocco, and to identify the barriers they face when accessing facility-based maternity care. Fifty-five participants were recruited from villages in Morocco's rural south to participate in focus group discussions (FGDs), using appreciative inquiry as the guiding framework. Several themes emerged from the analysis of the focus group data. Women felt well-cared for and safe giving birth both at home and in the large, tertiary care hospitals, but not in the small, primary care hospitals. Women who gave birth at the primary care hospitals reported a shortage of some equipment and supplies and poor treatment at the hands of hospital staff. Locating and paying for transportation was identified as the biggest hurdle in accessing maternity care at any hospital. The findings of this study indicate the need for change within primary care health facilities.

Increasing diversity in research through dedicated language access services.

In the context of research, one challenge at higher education and medical institutions that are engaged in high levels of research activities is recruiting and enrolling participants for research studies and clinical trials (1) who are of diverse racial and ethnic backgrounds and (2) whose primary language is not English. By 2020, of the 330 million people living in the U.S., 63% identified as White, 17% identified as Hispanic, 13% identified as Black, 5% identified as Asian, and 1% identified as other. With this shift in ethnic and racial demographics, researchers need to update their methods of recruitment as well as the information and documents provided about research opportunities. The University of Utah's Office Research Participant Advocacy (RPA) was created at the University of Utah in 2008 with an aim to identify and support individuals volunteering for research study participation. The focus of the important and uniquely situated office is to ensure that participants have the information they need for informed research participation, but also to provide researchers with oral and written language services to increase participant diversity in research studies. This short communication describes efforts underway at the RPA to ensure that information about and documents connected to research opportunities are congruent with the needs of research participants and offer equity for participation in research for a shifting cohort of diverse individuals.

Mothers' Diet and Family Income Predict Daughters' Healthy Eating.

INTRODUCTION: Understanding the degree to which parents may influence healthy behaviors may provide opportunities to intervene among populations at increased risk of diseases, such as breast cancer. In this study, we examined the association between daughters' healthy eating habits and family lifestyle behaviors among girls and their families by using baseline data from the LEGACY (Lessons in Epidemiology and Genetics of Adult Cancer from Youth) Girls Study. Our objective was to examine the relationship between daughters' healthy eating and family lifestyle behaviors and to compare these associations between families with and without a history of breast cancer. METHODS: We examined demographic and lifestyle data from a cohort of 1,040 girls aged 6 to 13 years from year 1 (2011) of the LEGACY study. Half had a family history of breast cancer (BCFH). We used mixed-effects linear regression to assess the influence of the mother and father's physical activity, family relationship scores, the mother's diet, the family's income, and the daughter's sports participation, age, body mass index (BMI), and race/ethnicity on the daughter's Healthy Eating Index (HEI) score. RESULTS: Daughters' healthy eating was significantly correlated with the mother's diet (r[668] = 0.25, P = .003) and physical activity (r[970] = 0.12, P = .002), the father's physical activity (r[970] = 0.08, P = .01), and the family income (r[854] = 0.13, P = .006). Additionally, the mother's diet (ß coefficient = 0.71, 95% CI, 0.46-0.88, P = .005) and family income (ß coefficient = 3.28, 95% CI, 0.79-5.78, P = .002) significantly predicted a daughter's healthy eating. Analyses separated by family history status revealed differences in these associations. In families without a history of breast cancer, only the mother's diet (ß coefficient = 0.62; 95% CI, 0.29-0.95; P = .001) significantly predicted the daughter's healthy eating. In families with a history of breast cancer, the mother's diet (ß coefficient = 0.73, 95% CI, 0.42-1.03, P = .006) and family income (ß coefficient = 6.24; 95% CI, 2.68-9.80; P = .004) significantly predicted a daughter's healthy eating. CONCLUSION: A mother's diet and family income are related to the daughter's healthy eating habits, although differences exist among families by family history of breast cancer.

Electronic informed consent information for residual newborn specimen research: findings from focus groups with diverse populations.

We developed a video and an app for obtaining consent about allowing newborn blood spots (NBS) to be used as biospecimen resources for biobanking. Newborn screening programs test for treatable diseases and leave residual biospecimens that can be used in future research activities. We conducted focus groups and interviews with three diverse communities to determine (a) how well the consent tools worked and (b) participant familiarity with NBS. Participants preferred the video and noted that they were unaware that NBS could be used for future research. Providing information about how biospecimens could be used was a key issue.

Employing the right annual data collection efforts to combat IPV on college campuses.

Present data collection efforts to identify and address intimate partner violence on college campuses and universities are flawed. Traditional methods utilized to report on intimate partner violence on campus, including Campus Climate Surveys and Clery Act reporting guidelines, are insufficient in that they do not capture the full scope of intimate partner violence. Inconsistent operationalization of intimate partner violence affects prevalence rates, generalizations across entities, and subsequent programing efforts. This viewpoint is a call for universities to standardize data collection efforts that accurately capture the wide range of actions and perpetrations that constitute intimate partner violence so as to prevent the further loss of student lives on campus.

Prepubertal Internalizing Symptoms and Timing of Puberty Onset in Girls.

Stressful environments have been associated with earlier menarche. We hypothesized that anxiety, and possibly other internalizing symptoms, are also associated with earlier puberty in girls. The Lessons in Epidemiology and Genetics of Adult Cancer From Youth (LEGACY) Girls Study (2011-2016) included 1,040 girls aged 6-13 years at recruitment whose growth and development were assessed every 6 months. Prepubertal maternal reports of daughter's internalizing symptoms were available for breast onset (n = 447), pubic hair onset (n = 456), and menarche (n = 681). Using Cox proportional hazard regression, we estimated prospective hazard ratios and 95% confidence intervals for the relationship between 1 standard deviation of the percentiles of prepubertal anxiety, depression, and somatization symptoms and the timing of each pubertal outcome. Multivariable models included age, race/ethnicity, study center, maternal education, body mass index percentile, and family history of breast cancer. Additional models included maternal self-reported anxiety. A 1-standard deviation increase in maternally reported anxiety in girls at baseline was associated with earlier subsequent onset of breast (hazard ratio (HR) = 1.22, 95% confidence interval (CI): 1.09, 1.36) and pubic hair (HR = 1.15, 95% CI: 1.01, 1.30) development, but not menarche (HR = 0.94, 95% CI: 0.83, 1.07). The association of anxiety with earlier breast development persisted after adjustment for maternal anxiety. Increased anxiety in young girls may indicate risk for earlier pubertal onset.

Childhood Adversity and Health After Physical Abuse.

BACKGROUND: Involvement with Child Protective Services (CPS) provides an opportunity to recognize those children at risk for ongoing adverse childhood experiences (ACEs). The relationship between ACEs and child health among CPS-involved children and the role of primary care providers (PCPs) in moderating this relationship is unknown. METHODS: We conducted a convergent mixed-methods study of caregivers of children age 2 to 12 years with a CPS finding of physical abuse, modeling the association between cumulative ACEs and child health-related quality of life (HRQoL) using the PedsQL4.0, a validated 23-item survey of multidimensional health, with and without the moderator of a patient-centered medical home. Interviews elicited descriptions of a child's experience with ACEs, the impact of ACEs on child health, and the role of a PCP in this context. RESULTS: One hundred seventy-eight surveyed caregivers reported a mean of 5.5 (±3.3) ACE exposures per child. In a fully adjusted model, each ACE resulted in a 1.3-point (95% confidence interval: 0.7-2.0) reduction in HRQoL, a clinically important difference in HRQoL associated with ACE exposures. This association was explained by reduced psychosocial HRQoL and was not moderated by a patient-centered medical home. Twenty-seven interviewed caregivers described the influence of ACEs on a child's health. Many felt that a trusted PCP could support a child's well-being after such experiences. CONCLUSIONS: Children with CPS involvement have ACE exposures that are associated with reduced HRQoL. Although PCPs are often unaware of CPS involvement or other ACEs, many caregivers welcome the support of a child's PCP in improving child well-being after adversity.

The limited use of US residual newborn screening dried bloodspots for health disparity research.

PURPOSE: State-run newborn screening programs screen nearly all babies born in the United States at the time of delivery. After newborn screening has been completed, some states store the residual dried bloodspots. It is unknown how they have been used to address health disparities-related research. METHODS: In 2017-2018, a scoping review was conducted to evaluate the extent, type, and nature of how residual dried bloodspots. The review included 654 eligible publications, worldwide, published before May 2017. A post hoc analysis of the US-based studies using residual dried bloodspots (n = 192) were analyzed. RESULTS: There were 32 (16.7%) articles identified that studied a condition of a known health disparity or focused on a key population: 25 studies assessed a disease or condition, 6 expressly enrolled a key population, and 1 study included both (i.e., heart disease and African American/Black). CONCLUSION: Excluding 12 studies that researched leukemia or a brain tumor, only 20 studies addressed a known health disparity, with 6 stating a specific aim to address a health disparity. This resource could be used to gain further knowledge about health disparities, but is currently underutilized.

An ecological investigation of resilience among rural-urban migrant adolescents of low socioeconomic status families in China.

The present study aims to explore the mechanism of resilience among rural-urban migrant adolescents of low socioeconomic status (SES) families in China with the ecological system perspective. Selecting 946 rural-urban migrant adolescents from the China Education Panel Survey, we used latent class analyses to distinguish different levels of resilience among migrant adolescents from low-SES families, and logistic regressions to identify factors associated with resilience and to examine the cumulative risk and protection models. The findings show that parental expectation, teacher support and organised neighbourhood are salient resilience-promoting factors; and resilience happens only if protective factors accumulate enough at multiple systems to compensate the negative effect of cumulative community risk. The study describes the importance of a protective environment in the domains of family, school and neighbourhood on the resilience of this group, and suggest intervention programmes should extend the paradigm from child-centred approach to environment-focused approach to potentiate the positive development of this population.

Assessing the Approach to HIV Case Management.

Case management is a standard practice for assisting people living with HIV in the United States. While HIV case management has resulted in positive outcomes for clients and their families, clients still face challenges. As part of an evaluation of Utah's Ryan White Part B Program, the Utah Department of Health and researchers from the University of Utah assessed the use of a tiered approach for case management in eight other states to determine the feasibility and potential effectiveness of this approach. Through review of publicly available materials and interviews with health department employees, we examined each state's 1) definitions of tiers, 2) acuity scales, 3) services provided within the tiers, 4) qualifications of case managers, and 5) how evaluations were conducted. This article summarizes how these various features might be combined to create a model that states could use for tiered case management. We developed a three-tiered model using a numeric summary for nine items to assess acuity, with levels defined as maintenance outreach support services, brief-contact management, and medical/non-medical management. Since none of the states reviewed had an existing formal evaluation tool, we propose areas to be covered in an annual formal evaluation.

Assessing patient readiness for personalized genomic medicine.

The Human Genome Project and the continuing advances in DNA sequencing technology have ushered in a new era in genomic medicine. Successful translation of genomic medicine into clinical care will require that providers of this information are aware of the level of understanding, attitudes, perceived risks, benefits, and concerns of their patients. We used a mixed methods approach to conduct in-depth interviews with participants in the NCI-funded Breast Cancer Family Registry (BCFR). Our goal was to gain a better understanding of attitudes towards different types and amounts of genomic information, current interest in pursuing genomic testing, and perceived risks and benefits. We interviewed 32 women from the six BCFR sites in the USA, Canada, and Australia. In this sample of women with a personal or family history of breast cancer, we found high acknowledgement of the potential of genetics/genomics to improve their own health and that of their family members through lifestyle changes or alterations in their medical management. Respondents were more familiar with cancer genetics than the genetics of other diseases. Concerns about the testing itself included a potential sense of loss of control over health, feelings of guilt on passing on a mutation to a child, loss of privacy and confidentiality, questions about the test accuracy, and the potential uncertainty of the significance of test results. These data provide important insights into attitudes about the introduction of increasingly complex genetic testing, to inform interventions to prepare individuals for the introduction of this new technology into their clinical care.