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Background: Socioeconomically disadvantaged and immigrant cancer survivors account for a significant and growing proportion of the breast cancer population in the US. Research on symptom burden and control among Chinese American (CA) breast cancer survivors (BCS) is scarce. Among all BCS, over 55% report treatment-related symptoms (e.g., fatigue and pain) and psychological stress (e.g., fear of recurrence). In our preliminary cross-sectional study, we found similar rates (~58%) but showed that CA (especially low-acculturated) BCS were particularly likely to report fatigue, pain, and poorer physical functioning relative to non-Hispanic White (NHW) BCS. We understand very little about whether CA and NHW BCS have different ways of managing symptoms, improving quality of life and decreasing risk for functional decline. We therefore propose a study to examine how CA and NHW BCS, two culturally distinct groups with divergent social resources, adapt to breast cancer. Study design: This longitudinal, prospective study will investigate sociocultural influences on individual coping behaviors and how they in turn affect racial differences in inflammation markers, symptom severity, and functional outcomes in breast cancer. This study will enroll 260 CA and 260 NHW female BCS to examine multifactorial pathways to breast cancer survivorship outcomes. The CA cases will be age- and stage-matched to the NHW cases. Utilizing a multilevel biobehavioral framework, we will investigate the dynamics of biological, sociocultural, and behavioral (diet and exercise) influences on symptom severity, physiologic status, and functional outcomes. Participants will complete telephone survey interviews and provide blood samples at baseline and 6- and 12-month follow-up. Pro-inflammatory cytokines (e.g., IL-1β, IL-1a, IL-6, IL8, IL10, TNFα, TNFꞵ, and CRP) and cortisol will be analyzed. In-depth individual interviews with a subset of participants will be conducted to investigate causal factors in order to develop individually and culturally appropriate interventions to improve future clinical care for targeted breast cancer survivor populations. This study is supported by NIH R01CA248413. Eligibility criteria: Eligible participants are CA and NWH women (age >= 18) who are diagnosed with invasive breast cancer (stage I, II, or III), are 1-5 years post diagnosis, and have completed primary treatment (e.g., surgery, radiation, chemotherapy, and/or targeted therapy). Patients currently on adjuvant endocrine therapy are allowed. Specific aims: Aim 1: Examine whether CA BCS’ symptom, functional, and physiologic outcomes (e.g., cytokines and cortisol), and trajectory of these outcomes differ from NHW BCS at baseline, 6- and 12-month follow-up, controlling for covariates. Aim 2: Examine to what extent social resources mediate BCS’ individual behavior (e.g., medical communication, diet, and physical activity) and to what extent such pathways explain outcome differences (Aim1) among BCS. Aim 3: Examine whether race and acculturation moderate the mediational pathways. Statistical methods: Multiple general linear mixed models will be performed to examine racial differences in the trajectory of symptom and biobehavioral outcomes across time, controlling for covariates (Aim 1). To examine mediation and moderation effects (Aims 2 and 3), we will use a cross-lagged path analysis model to simultaneously describe reciprocal relationships, or directional influences, between variables over time. Present accrual and target accrual: A total of 520 participants (260 CA and 260 NHW) will be enrolled at NYU Perlmutter Cancer Center, Columbia University Irving Medical Center, Georgetown University Medical Center, and Texas A&M University community networks. Contact information: Judy Huei-yu Wang, PhD: jw235@gunet.georgetown.edu or 202-687-6306 Maryann Kwa, MD: maryann.kwa@nyulangone.org or 212-731-6364 Citation Format: Maryann Kwa, Marc Schwartz, Katherine D. Crew, Jeanine M. Genkinger, Roger L. Brown, Leena Hilakivi-Clarke, Joanna Kitlinska, Douglas W. Roblin, Michael Antoni, Sylvia Adams, Kathie-Ann Joseph, Lei-Shih Chen, Judy Huei-yu Wang. A longitudinal investigation of sociocultural and behavioral influences on symptom management, biological response, and functioning among Chinese American and White female breast cancer survivors [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr OT3-14-01.

This study aimed to examine racial and ethnic variations in national trends, past-year prevalence, determinants of major depressive episode (MDE), MDE-related role impairment and mental health (MH) services utilization in U.S. adolescents.Data was extracted from the National Survey on Drug Use and Health (NSDUH) from 2010 to 2018. A total of 137,671 nationally representative adolescents aged 12-17 were included in the study. Weighted temporal trends in the past-year prevalence of MDE, and MDE with severe role impairment were estimated both overall and by race and ethnicity. Weighted multivariate logistic regressions were conducted to assess racial/ethnic differences in determinants of MDE, MDE-related severe role impairment, and MH services utilization after adjusting for sociodemographic characteristics, family structure, substance use, activity participation, and problem-solving group engagement.The prevalence of MDE and MDE with severe role impairment among U.S. adolescents has steadily increased, while MDE-related health services utilization remained low from 2010 to 2018. Racial and ethnic minority adolescents were more likely to experience an MDE, but less likely to use MH services compared to their White counterparts. Participating in school, family, community, or faith-based activities was significantly associated with lower MDE incidence. Problem-solving group engagement was associated with MH services utilization (all p-values 0.05).High prevalence of depression and low MH service utilization among U.S. adolescents remains a public health issue. Moreover, racial/ethnic disparities persist in MH and service utilization outcomes. Future research must investigate the burden and predictors of mental illness, and the factors influencing MH services utilization in diverse adolescent populations.

Background: The diagnosis of autism spectrum disorder (ASD) cases is increasing in Taiwan. Genetic testing for children with ASD offers several potential benefits and is available with out-of-pocket expenses. Parents play a pivotal role in having their children with ASD tested; therefore, understanding their perceptions of, and perceived barriers to genetic testing is vital. Methods: Semi-structured interviews were conducted with 39 parents of children with ASD in Taiwan. Interviews were recorded and transcribed verbatim. NVivo 12 software (QSR International, Doncaster, Australia) was used to facilitate an inductive coding methodology. Results: The majority of participants (74.4%) supported ASD genetic testing for their children with ASD, citing reasons such as clarifying ASD etiology, well-informed family planning, contributing to ASD research, and early ASD detection and intervention. Others indicated that they were either against such testing (17.9%), or unsure (7.7%) about whether to take their children with ASD for genetic testing. Those who were opposed reported that their main concerns related to perceptions of no value of genetic testing, potential for family conflict, and financial difficulties. Conclusions: Most of the parents of children with ASD that we interviewed expressed favorable views of ASD genetic testing. There exists a need to increase parental access to education and counseling, and to include testing coverage in Taiwanese national health insurance.

Type 2 diabetes mellitus (T2DM) is one of the fastest growing public health concerns around the world. Sugar-sweetened beverage (SSB) consumption has been proven to be associated with adverse health consequences in the diabetic population. Reducing SSB consumption, body weight control, healthy diets, and increased physical activity have been suggested as strategies to improve diabetes prevention and management. This literature review provides an overview of: (1) The association between SSB consumption and the risk of T2DM; (2) Types of SSB consumption and T2DM; (3) The effect of obesity and inflammation on the association between SSB consumption and risk of T2DM; and (4) SSB consumption in T2DM patients. There is still work to be done to determine how SSB consumption is related to T2DM, but the current research on identifying the association between SSB consumption and T2DM is promising, with the most promising studies confirming the connection between SSBs, T2DM risk, and diabetes management. Future studies should explore more effective SSB related diabetes prevention and management interventions.

OBJECTIVE The present study aims to examine the impacts of a mandatory physical activity (PA) course on exercise motivation among predominately Hispanic college students. The course was designed based on the Self-Determination Theory to increase students' PA motivation. Methods: A total of 383 college students (nmales=126; nfemales=257; Mage=19.6; 67.6% Hispanic/Latino[a]) participated in the course and completed the Behavioral Regulation to Exercise Questionnaire-2 at the beginning (pretest) and the end of the course (post-test). This questionnaire measured five motivation constructs: amotivation, intrinsic motivation, extrinsic motivation, introjected regulation, and identified regulation. Results: Findings showed significant increases from pretest to post-test in all five motivation constructs (ps

This study examined the accuracy of commonly used model fit indexes in identifying number of factors in multilevel exploratory factor analysis using Monte Carlo simulations. Multilevel data were ge...

Background Colorectal cancer (CRC) is the third most common cancer for Chinese Americans. Family history (FH) plays an important role in clinical practice for CRC prevention. Nevertheless, Chinese Americans’ FH of CRC communication with primary care physicians (PCPs) are still unknown. Aims This study examined Chinese Americans’ behavior and the underlying psychological factors for FH of CRC communication with PCPs. Method A total number of 742 Chinese Americans completed a survey developed based on the health belief model, the theory of planned behavior, and the social cognitive theory. Data were analyzed using structural equation modeling. Results Majority of the Chinese American participants (75.3%) had never discussed FH of CRC with their PCPs. Lack of inquiries from the PCPs was the main barrier. Structural equation modeling results suggested a good model fit between our theoretical model and the survey data (comparative fit index [CFI] = .946, root mean square error of approximation [RMSEA] = .070, and standardized root mean square residual [SRMR] = .020). Participants’ FH of CRC communication with PCPs was positively associated with their intention (β = .30, p < .001), which was positively correlated to attitudes (β = .29, p < .001) and self-efficacy in discussing FH of CRC with PCPs (β = .57, p < .001). Their attitudes were positively associated with perceived susceptibility to CRC (β = .08, p < .05) and the perceived benefits of communicating FH of CRC (β = .52, p < .001). Conclusions Given that most Chinese Americans in this study did not communicate their FH of CRC with their PCPs, it is important to promote such behavior among Chinese Americans. Our structural equation modeling findings can guide future interventions and education for this underserved racial/ethnic minority group.

Breast cancer is the most commonly diagnosed cancer among Chinese American women. Knowing the BRCA1 and BRCA2 (BRCA1/2) gene mutation status can improve breast cancer patients’ health outcomes by guiding targeted treatment towards preventing breast cancer recurrence and other BRCA-related cancers. Nevertheless, it is unclear if there is a disparity in knowledge and use of BRCA testing among Chinese American breast cancer patients. This cross-sectional study investigated the possible presence of differences in the knowledge and the use of BRCA testing between Chinese American and Non-Hispanic White (NHW) breast cancer patients. We surveyed 45 Chinese American and 48 NHW adult breast cancer patients who had been diagnosed with breast cancer within the previous two years through telephone interviews. The results showed that race was not statistically related to the use of BRCA testing. BRCA testing utilization was associated with family history (p < 0.05) and age (p < 0.05). However, Chinese American participants’ understanding of BRCA testing was significantly lower than that of NHW participants (p = 0.030). Our findings suggest that a disparity exists in BRCA testing knowledge between Chinese American and NHW breast cancer patients. Genetic education and counseling are needed to improve BRCA testing knowledge and uptake among Chinese American breast cancer patients.

Pregnant Hispanic women are underserved with their needs for genetic counseling, despite birth defects remaining the leading cause of infant death in the United States. We present the qualitative findings of a study to understand knowledge and perceptions of prenatal testing in a sample of hard‐to‐reach underrepresented Hispanic pregnant women in South Texas. The sample for this study was 10 Hispanic pregnant women who were recruited from a high‐risk prenatal clinic in South Texas in 2019. The semi‐structured interview questions were created based on the researchers' clinical experiences with this population and were designed to examine knowledge and perceptions of participants toward prenatal testing. Analysis of the qualitative data yielded several themes related to prenatal testing: (a) knowledge, (b) confusion, (c) partner's and support persons' opinions, (d) information sharing from providers, (e) psychological benefits, (f) preparation for baby, (g) obstacles, (h) religious influence, and (i) educational tools to assist with understanding. Women's understanding and knowledge of prenatal testing was limited, specifically regarding its purpose, how it works, the benefits, and why it was recommended by their provider. Lack of clarity about why they should take the test and its risks for them and their babies was perceived as something that could impede their acceptance of prenatal testing. All participants agreed that healthcare providers should share more information about prenatal testing in a way that uses ‘everyday language' so that they can understand it better. All respondents mentioned that prenatal testing provides information about their baby's health conditions, alleviates their stress and concerns, and psychologically prepares them and their family for what is to come. Identifying ways to increase culturally appropriate education delivered by genetic counselors such as through the adoption of telemedicine and mobile technology can help fill the gap for this underserved population.

The American Academy of Pediatrics, the American College of Medical Genetics and Genomics, and the American Academy of Neurology recommend genetic testing, as a genetic evaluation tool, for children diagnosed with autism spectrum disorders (ASD). Despite the potential benefits, the utilization of genetic testing is low. We proposed an integrated theoretical framework to examine parents' intention and associated psychosocial factors in pursuing genetic testing for their children with ASD. Recruiting primarily from the Interactive Autism Network, a nationwide sample of 411 parents of children with ASD who had never pursued genetic testing for their children completed our theory-based online survey. Data were analyzed using structural equation modeling. About half of the parents were willing to pursue genetic testing for their children with ASD. Findings of the structural equation modeling suggested a good model fit between our integrated theoretical framework and survey data. Parents' intention was significantly and positively associated with their attitudes toward genetic testing, subjective norm, and self-efficacy in having their children tested. This study serves as an initial window to understand parental intention to pursue genetic testing for their children with ASD. Our findings can help physicians and genetic counselors understand, educate, counsel, and support parents' decision-making about having their children with ASD genetically tested. Furthermore, our study can also assist physicians and genetic counselors in developing theory- and evidence-based patient education materials to enhance genetic testing knowledge among parents of children with ASD.

Background: There is a significant shortage of genomics training curricula targeting health education (HE) students. This study assessed the impact of an online theory-based genomics short course focusing on family health history (FHH) to undergraduate HE students. Materials & methods: Junior and senior HE students (n = 69) at a research-intensive university completed the course and took the pre- and post-course surveys. Results: Participants demonstrated positive improvements in their scores regarding FHH knowledge as well as attitudes, intention and confidence in adopting FHH-based genomics skills into future practice. They also showed satisfaction with the genomics course. Conclusion: Based on the initial success of the results, offering this genomics course to more HE students for further testing is recommended in the future.

Family health history (FHH) is an essential foundation for personalized disease prevention. As the incidence of early-onset chronic diseases is increasing among college students, it is important to provide them with the education required to learn about their FHH. This study aimed to assess college students’ interest in receiving FHH education, preferred topics, and desired learning methods. We invited college students to complete an online survey from a large research-intensive university. A total of 2276 college students completed the survey. Nearly half of the participants self-identified as non-Hispanic white (45.5%). Slightly more than half of the sample (53.9%) were not interested in receiving FHH education mainly due to low prioritization. Among those who expressed interest in obtaining FHH education, the three most desired learning topics were the ability to interpret FHH information (76.1%), the application of FHH in disease prevention (72.0%), and FHH information collection strategies (63.6%). Computer-based learning (51.1%) was the most preferred educational method. Moreover, females, older individuals, those who have FHH in first-degree relatives, and participants who were members of racial and ethnic groups showed greater interests in receiving FHH education (ps < 0.05). Strategies to promote college students’ awareness, collection, and use of FHH are needed.

The prevalence of autism spectrum disorders (ASD) in Taiwan has been increasing, and genetic testing for ASD has been available and provided to parents of children diagnosed with ASD in Taiwan. However, there is still limited understanding of Taiwanese parents’ knowledge of and attitudes toward such testing. Therefore, the present study addressed this gap by assessing the attitudes toward as well as actual and perceived knowledge of ASD genetic testing among Taiwanese parents of children diagnosed with ASD. A sample of 443 parents of children with ASD recruited from 236 public schools in Taiwan completed a paper-and-pencil survey. Although parents generally held favorable attitudes toward ASD genetic testing, they had deficient knowledge of such test (with only a 31.4% average correct rate on the actual knowledge scale). Tailored health education materials should be developed to improve the knowledge of ASD genetic testing among parents with affected children in Taiwan.

There are, currently, conflicting opinions about the adoption of exome sequencing (ES) into the standard newborn screening program. This study aimed to explore the views of pregnant Latinas, a hard-to-reach, underserved, and understudied population, about pursuing ES for their newborns.We conducted semistructured interviews with 32 pregnant Latinas who predominately lived in rural areas and had low levels of income and education. An emergent coding approach was used to analyze the qualitative data collected.Our entire sample believed that ES should be offered as a part of newborn screening, which could empower pregnant Latinas to better understand their children's health and take early treatment actions. Although some participants were concerned about potentially bad ES results and had questions about the accuracy of ES results, nearly all interviewees reported that they would be willing to have their newborns undergo ES. The main reasons given were to be informed of diseases that the baby may have, and the perception that ES is a procedure that involves minimal risk.Pregnant Latinas in this study had favorable attitudes toward newborn ES. Their perspectives should be considered when decisions are made about incorporating ES into newborn screening.

Background Prenatal genetic testing is an essential part of routine prenatal care. Yet, obstetricians often lack the time to provide comprehensive prenatal genetic testing education to their patients. Pregnant women lack prenatal genetic testing knowledge, which may hinder informed decision-making during their pregnancies. Due to the rapid growth of technology, mobile apps are a potentially valuable educational tool through which pregnant women can learn about prenatal genetic testing and improve the quality of their communication with obstetricians. The characteristics, quality, and number of available apps containing prenatal genetic testing information are, however, unknown. Objective This study aims to conduct a firstreview to identify, evaluate, and summarize currently available mobile apps that contain prenatal genetic testing information using a systematic approach. Methods We searched both the Apple App Store and Google Play for mobile apps containing prenatal genetic testing information. The quality of apps was assessed based on the criteria adopted from two commonly used and validated mobile app scoring systems, including the Mobile Application Rating Scale (MARS) and the APPLICATIONS evaluation criteria. Results A total of 64 mobile apps were identified. Of these, only 2 apps were developed for a specific prenatal genetic test. All others were either pregnancy-related (61/64, 95%) or genetics-related (1/64, 2%) apps that provided prenatal genetic testing information. The majority of the apps (49/64, 77%) were developed by commercial companies. The mean quality assessment score of the included apps was 13.5 (SD 2.9), which was equal to the average of possible theoretical score. Overall, the main weaknesses of mobile apps in this review included the limited number of prenatal genetic tests mentioned; incomprehensiveness of testing information; unreliable and missing information sources; absence of developmental testing with users (not evidence based); high level of readability; and the lack of visual information, customization, and a text search field. Conclusions Our findings suggest that the quality of mobile apps with prenatal genetic testing information must be improved and that pregnant women should be cautious when using these apps for prenatal genetic testing information. Obstetricians should carefully examine mobile apps before referring any of them to their patients for use as an educational tool. Both improving the quality of existing mobile apps, and developing new, evidence-based, high-quality mobile apps targeting all prenatal genetic tests should be the focus of mobile app developers going forward.

Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by social communication deficits and restricted or repetitive behaviors. Parental perceptions of the etiology of their child’s ASD can affect provider–client relationships, bonding between parents and their children, and the prognosis, treatment, and management of children with ASD. Thus, this study sought to examine the perceptions of ASD etiology of parents of children with ASD. Methods: Forty-two parents of children diagnosed with ASD were recruited across Texas. Semi-structured interviews were conducted individually. All interviews were recorded and later transcribed verbatim for content analysis utilizing NVivo 12.0 (QSR International, Doncaster, Australia). Results: The content analysis identified the following themes regarding parental perceptions of ASD etiology: Genetic factors (40.5%), environmental factors (31.0%), problems that occurred during pregnancy or delivery (23.8%), vaccinations (16.7%), other health problems (7.1%), parental age at the time of pregnancy (4.8%), and spiritual or religious factors (2.4%). Conclusions: The parental perceptions of ASD etiology were diverse, but several views, such as vaccinations and spiritual or religious factors, were not based on scientific evidence. Health professionals and researchers can use these findings to develop and provide targeted education to parents who have children with ASD. Our findings also support policymakers in developing campaigns designed to increase parental ASD awareness and knowledge.

BACKGROUND Prenatal genetic testing is an essential part of routine prenatal care. Yet, obstetricians often lack the time to provide comprehensive prenatal genetic testing education to their patients. Pregnant women lack prenatal genetic testing knowledge, which may hinder informed decision-making during their pregnancies. Due to the rapid growth of technology, mobile apps are a potentially valuable educational tool through which pregnant women can learn about prenatal genetic testing and improve the quality of their communication with obstetricians. The characteristics, quality, and number of available apps containing prenatal genetic testing information are, however, unknown. OBJECTIVE This study aims to conduct a firstreview to identify, evaluate, and summarize currently available mobile apps that contain prenatal genetic testing information using a systematic approach. METHODS We searched both the Apple App Store and Google Play for mobile apps containing prenatal genetic testing information. The quality of apps was assessed based on the criteria adopted from two commonly used and validated mobile app scoring systems, including the Mobile Application Rating Scale (MARS) and the APPLICATIONS evaluation criteria. RESULTS A total of 64 mobile apps were identified. Of these, only 2 apps were developed for a specific prenatal genetic test. All others were either pregnancy-related (61/64, 95%) or genetics-related (1/64, 2%) apps that provided prenatal genetic testing information. The majority of the apps (49/64, 77%) were developed by commercial companies. The mean quality assessment score of the included apps was 13.5 (SD 2.9), which was equal to the average of possible theoretical score. Overall, the main weaknesses of mobile apps in this review included the limited number of prenatal genetic tests mentioned; incomprehensiveness of testing information; unreliable and missing information sources; absence of developmental testing with users (not evidence based); high level of readability; and the lack of visual information, customization, and a text search field. CONCLUSIONS Our findings suggest that the quality of mobile apps with prenatal genetic testing information must be improved and that pregnant women should be cautious when using these apps for prenatal genetic testing information. Obstetricians should carefully examine mobile apps before referring any of them to their patients for use as an educational tool. Both improving the quality of existing mobile apps, and developing new, evidence-based, high-quality mobile apps targeting all prenatal genetic tests should be the focus of mobile app developers going forward.

Purpose: The purpose of this study is to evaluate the effects of genomics training workshops for public health professionals and professionals-in-training. Design: A pre- and post-test evaluation design with 3-month follow-up. Setting and Participants: Thirteen genomics training workshops were delivered across Texas to 377 public health professionals and professionals-in-training (66.7% were ethnic minorities). Intervention: Three-hour theory-based, face-to-face genomics training workshops focusing on family health history practice were delivered. Methods: We administered surveys prior to the workshops, immediately post-workshops, and at 3-month follow-up to examine the changes in participants’ knowledge, attitudes, intention, self-efficacy, and behavior in adopting genomics into public health practice. Linear mixed modeling analyses were used to analyze the quantitative survey data. A content analysis was also conducted for qualitative survey data analysis. Results: Genomics practice significantly improved among public health professionals at 3-month follow-up ( P < .01). For all participants, knowledge, attitudes, intention, and self-efficacy scores increased significantly immediately post-workshop compared to the pre-workshop scores (all Ps < .01). Knowledge and attitudes scores at the 3-month follow-up remained significantly higher than those scores at the pre-workshop (all Ps < .01). The feedback from workshop participants was positive. Conclusion: Our genomics training workshop is an effective program that can be disseminated at a national level to establish genomic competencies among public health professionals and professionals-in-training in the United States.

Mobile applications (apps) have been increasingly utilized to access the latest and abundant information related to genetics/genomics for resources, risk assessments, and individualized recommendations. Nevertheless, the number and quality of the current apps in genetics/genomics remain unknown. Thus, in this review, we aimed to identify existing genetic/genomic apps, summarize their characteristics, and examine their quality. A systematic search of genetics/genomics apps was conducted on Apple Store and Google Play. We adapted a validated evaluation scale, Mobile App Rating Scale (MARS), to examine the quality of genetics/genomics apps. Eighty-eight genetics/genomics apps, with the cost ranging from free to $49.99, formed the final sample. Findings showed that the majority of the apps had reference/resource as a feature (95.5%), had health professional students as the target audience (86.4%), and did not focus on specific diseases (78.5%). Only 21.6% of the apps were developed by reliable or authoritative agencies, and the apps’ overall quality was slightly above average based on the criteria of the MARS. Therefore, while genetics/genomics mobile apps might be useful resources, their quality still needs improvement, especially with respect to the credibility and evidence-based items of app information as well as the customization items of app engagement; caution must be taken when using those apps.

Asian Americans are the fastest growing racial/ethnic group in the USA, as this population increased by 72% between 2000 and 2015. Chinese Americans are the largest Asian subgroup, with a high immigrant proportion (63%), a high poverty rate (14%), and a large percentage of low English competency (41%). Colorectal cancer (CRC) is the second most commonly diagnosed cancer and cause of cancer death among Chinese Americans. As CRC has a genetic predisposition, family health history (FHH) has been proposed as a preventive tool to stratify CRC risk and guide personalized screening and behavioral modifications. The purpose of this study was to adopt a community-based participatory research (CBPR) approach to develop the first culturally and linguistically appropriate FHH-based CRC prevention program for Chinese Americans in Texas. The program development involved five CBPR steps: (1) establishment of partnership and research team, (2) literature review and needs assessment, (3) creation of a theoretical framework of the FHH-based CRC prevention, (4) development a culturally and linguistically appropriate intervention, and (5) program evaluation. Key components of this program included two intervention activities: (1) a culturally and linguistically appropriate FHH-based CRC prevention workshop and (2) a follow-up individualized phone consultation and health insurance enrollment and navigation services (if needed). The pilot study suggested feasibility of the program. This CBPR-grounded, FHH-based CRC prevention project can serve as a model for future cancer prevention programs targeting other types of cancers that also have FHH components.

This project aims to explore the prevalence of traumatic experience and examine the association among trauma experience, lifetime mental disorder, and risk of endorsed suicide ideation among aging Asians. Data were drawn from the National Latino and Asian American Survey and participants aged 55 and above were included in the study. Descriptive analyses and weighted logistic regressions were employed to analyze the association among outcomes of interest. Approximately 74% of 376 aging Asians experienced trauma exposures. Specifically, 17% of respondents with trauma exposure reported a lifetime mental disorder, and 8% had suicide ideation. After adjusting for demographic, social support, and family factors, aging Asians with traumatic experience had a significantly higher risk of experiencing discrimination and mental disorders (p-values

Due to the increased prevalence of Autism Spectrum Disorder (ASD), more children with ASD may be referred for genetic testing. It is important to develop a tool to help parents consider the benefits and drawbacks of genetic testing for ASD before pursuing genetic testing for children with ASD. We developed the first theory-based survey—Perceptions of ASD Genetic Testing Survey (POAGTS), as a tool to assist healthcare providers to better understand parents’ perceptions and concerns regarding ASD genetic testing. The psychometric properties of POAGTS were first pre-tested and then formally tested with 308 parents of children with ASD who had not decided whether to pursue genetic testing for their children diagnosed with ASD. Findings suggest that the eight scales of the POAGTS were psychometrically sound, and had acceptable data reliability and validity. Additional research with various samples, such as parents of children with ASD who belong to diverse racial/ethnic and socioeconomic groups, is warranted in the future to determine whether the POAGTS is applicable to these particular groups. Condensing and refining this tool to a shorter, more user-friendly version is also recommended for future research.

Background: Health educators (HEs), who are specialized in health education, can provide basic genomics education/services to the public. Such practice of HEs is unknown. We examined HEs’ genomics knowledge and practice, intention, attitudes, self-efficacy and perceived barriers in providing basic genomics education/services. Materials & methods: Texas HEs (n = 662) were invited to complete the survey that was developed based on theoretical constructs (i.e., practice/behavior, intention, attitudes, self-efficacy, knowledge and perceived barriers) from various health behavior theories. Results: Among 182 HEs completed the survey, most had never/seldom provided basic genomics education/services. Participants’ practice was positively associated with their intention in performing basic genomics education/services and previous genomics training. Intention to offer such education/services was positively related to HEs’ self-efficacy and attitudes, which were correlated to previous genomics training. Conclusion: Texas HEs lacked basic genomics education/services practice. As previous genomics training was associated with HEs’ practice, providing continuing education may enhance their practice.

Context National efforts have advocated for the need to deliver family health history–based interventions to the lay public for more than a decade. Yet, the numbers, characteristics, and outcomes of such interventions are unknown. This first-of-its-kind systematic literature review examines the characteristics and effectiveness of the existing family health history–based interventions. Evidence acquisition The research team systematically searched peer-reviewed articles published between January 2003 and July 2020 in MEDLINE, Embase, CINAHL, and Google Scholar. Evidence synthesis A total of 35 articles met the inclusion criteria. These studies assessed various behaviors, including family health history collection/communication with family members, family health history communication with healthcare providers, healthy diet adoption, physical activity level, uptake of medical screenings and genetic tests, and being proactive in healthcare matters. The average methodologic quality score of the studies was 9.9 (SD=1.6) of a theoretical range from 2 to 16. Conclusions Many family health history–based interventions exist to examine a variety of behaviors. Yet, there is room for improvement in methodology because few studies used a randomized or quasi-experimental design. In addition, most included studies did not report objective or longer-term outcome data to examine the effectiveness of family health history–based interventions.

This study examined the effects of the first family health history (FHH)-based colorectal cancer (CRC) prevention education on 1) FHH of CRC communication with family members and primary care physicians (PCPs), 2) fecal occult blood test (FOBT) uptake, and 3) CRC preventive lifestyle modifications among 50- to 75-year-old Chinese Americans non-adherent to CRC screening guidelines.Using a community-based participatory research approach, we developed and implemented 62 culturally and linguistically appropriate, theory-driven, FHH-based CRC prevention educational workshops across Texas for 344 Chinese Americans (mostly with low education/income) aged 50-75 years who were non-adherent to CRC screening guidelines.Linear mixed modeling analyses showed that participants' FHH of CRC communication with PCPs and family members significantly increased two-week post-workshop compared to pre-workshop data (ps0.001). Moreover, at two-weeks post-workshop, 91.9 % of participants underwent FOBT. Nevertheless, no significant changes were found in participants' lifestyles.Our educational workshops successfully increased Chinese Americans' FHH of CRC communication and FOBT uptake. Personalized education with longer follow-ups may be needed in future studies to promote lifestyle changes among Chinese Americans.Health and public health professionals may adopt our workshop educational materials to provide patient and public CRC prevention education for Chinese Americans.

Cancer is the second leading cause of death in the U.S. Utilizing family health history in cancer prevention holds promise in lessening the burden of cancer. Nevertheless, family health history is underutilized in public health and preventive medicine. Community health workers, also known as lay health educators, are ideal candidates to offer basic cancer family history-based education and services to the general public. The authors developed the first cancer family history-based genomics training program in cancer prevention tailored for community health workers. This paper details the development and pilot testing findings of the training. Specifically, a multidisciplinary research team of geneticists, genetic counselors, health educators, community health workers, and community health worker instructors developed a 7-module, 6-hour, bilingual (English and Spanish) cancer family history-based training focusing on cancer family history-based risk assessment, lifestyle recommendations, and genetic evaluation and testing. The curriculum was based on an integrated theoretical framework, the National Comprehensive Cancer Network guidelines, the community health worker core competencies, and the 4MAT instructional model. The Texas Department of State Health Services approved and certified the curriculum with 2 delivery formats: in-person/face-to-face workshops and online training. A total of 34 community health workers completed the pilot training in person (n=17) and online (n=17) in 2018 and 2019. Participating community health workers' knowledge, attitudes, self-efficacy, and intention in delivering basic cancer family history-based genomics education and services significantly increased on the immediate post-test measures compared with their pretest data. Positive ratings and feedback were also reported by the community health workers. Findings from this pilot study suggest that wider training is warranted for educating more community health workers in the U.S.

With the rapid growing rate of autism spectrum disorders (ASDs), prenatal genetic testing (PGT) has been offered to detect various genomic disorders, including ASD, in Taiwan. However, disparities exist in this area, as there is limited research on factors associated with PGT utilization and relevant decision-making that may guide the regulations and ethical guidelines for culturally appropriate PGT services in Taiwan. This study proposed a comprehensively integrated theoretical framework for examining the intention to undergo PGT to detect ASD susceptibility genes and subsequent abortion decision-making among Taiwanese mothers of children affected by ASD. Survey data from 333 mothers of children with ASD in 236 elementary schools with special education services in Taiwan were collected and analyzed using structural equation modeling. Approximately two-thirds of the participants (66.6%) would undergo PGT to detect ASD susceptibility genes, more than half (53.1%) would terminate the hypothetically ASD-affected pregnancy. Abortion intention was associated with age, religion, attitudes toward PGT for detecting ASD susceptibility genes, and willingness to undergo such PGT. This study explores the potential impacts of PGT on Taiwanese society, and the findings are applicable to countries heavily influenced by Chinese culture, areas with Asian immigrants, and Western countries with such PGT services and/or research available.

We conducted the first needs assessment study by examining the information needs in genetic testing for autism spectrum disorders among parents of children with autism spectrum disorders in Taiwan. Parents of children with autism spectrum disorders in 236 public elementary schools with special education services were invited to complete a survey. About two-thirds of participants (65.7%) had never heard about genetic testing for autism spectrum disorders. Yet, the majority (71.4%) expressed an interest in learning about this testing. The top three topics participants identified to assist them in making informed decisions before undergoing genetic testing (for themselves, their affected children, or other family members) were testing accuracy (79.7%), genetic causes of autism spectrum disorders (79.4%), and the link between testing and treatment (79.4%). A health education brochure (47.2%) was the most desired educational approach. Our results can be utilized to develop information and counseling materials for genetic testing for autism spectrum disorders in Taiwan as well as to address the needs of parents of children with autism spectrum disorders, particularly in informed decisions-making. Moreover, to promote better communication between the providers and parents, when discussing genetic testing for autism spectrum disorders with Taiwanese parents of children with autism spectrum disorders, healthcare professionals’ priorities should be in line with the preferred topics identified in this study.

Background Prenatal genetic testing (PGT) for Autism Spectrum Disorders (ASD) raises more complex ethical, legal, and social implications in Taiwan than in Western countries due to policy-related, practical, cultural, and familial reasons. This first qualitative study examines attitudes towards PGT for ASD among Taiwanese parents of children with ASD – an elevated risk group for having another affected child, and one that is mostly likely to be impacted by PGT for ASD. Methods We conducted in-depth, face-to-face, individual, semi-structured interviews with 39 parents of children with ASD from various ASD organizations in Taiwan. Results Most parents favored PGT for ASD mainly for terminating the affected pregnancy and receiving early intervention and treatment. Less than one-third of participants was against PGT for ASD due to perceived no value for this testing, contradiction with religion and/or personal beliefs, doubt of the test’s accuracy, or concerns about the negative consequences of the testing. Conclusion The majority of Taiwanese parents of children with ASD in this study supported PGT for ASD. Guidelines and regulations should be developed to regulate the provision and quality of this testing. Genetic counseling should also be recommended to parents of children with ASD in Taiwan.

The completion of the Human Genome Project has enhanced avenues for disease prevention, diagnosis, and management. Owing to the shortage of genetic professionals, genetics/genomics training has been provided to nongenetic health professionals for years to establish their genomic competencies. We conducted a systematic literature review to summarize and evaluate the existing genetics/genomics education programs for nongenetic health professionals.Five electronic databases were searched from January 1990 to June 2016.Forty-four studies met our inclusion criteria. There was a growing publication trend. Program participants were mainly physicians and nurses. The curricula, which were most commonly provided face to face, included basic genetics; applied genetics/genomics; ethical, legal, and social implications of genetics/genomics; and/or genomic competencies/recommendations in particular professional fields. Only one-third of the curricula were theory-based. The majority of studies adopted a pre-/post-test design and lacked follow-up data collection. Nearly all studies reported participants' improvements in one or more of the following areas: knowledge, attitudes, skills, intention, self-efficacy, comfort level, and practice. However, most studies did not report participants' age, ethnicity, years of clinical practice, data validity, and data reliability.Many genetics/genomics education programs for nongenetic health professionals exist. Nevertheless, enhancement in methodological quality is needed to strengthen education initiatives.Genet Med advance online publication 20 October 2016.

Aim: To examine genomic medicine (GM) practice and associated factors (i.e., attitudes, intention, self-efficacy, previous training in genomics, and demographic characteristics) among Taiwanese physicians. Methods: A survey was distributed to physicians attending an internal training workshop at a large medical center in Taiwan. Data were analyzed using structural equation modeling. Results: A total of 137 physicians comprised our final sample; less than a third of them had practiced GM. Yet, participants overall had positive intention, favorable attitudes, and high self-efficacy in GM practice. Moreover, intention, attitudes, self-efficacy, educational level, and continuing education in GM were positively and significantly associated with participants’ GM practice. Conclusion: Offering continuing education for Taiwanese physicians is needed to enhance their practice in GM.

This study examined the experiences of Autism Spectrum Disorder (ASD) genetic testing among parents of children with ASD. A nationwide sample of 552 parents of children with ASD completed an online survey. Nearly one-quarter (22.5%) of the parents reported that their affected children had undergone ASD genetic testing. The testing utilization was associated with awareness of ASD genetic testing and whether information was received from healthcare providers. Among parents whose children with ASD were tested, 37.6% had negative experiences, which mainly due to lack of perceived testing benefits to their affected children and unpleasant testing experiences with healthcare providers. To provide better healthcare services, it is critical to ensure parents understand the purposes, benefits, and results of ASD genetic testing.

Supplemental Material, Appendix_A_Chen_10-21-2018-1 for Training Texas Public Health Professionals and Professionals-In-Training in Genomics by Lei-Shih Chen, Yu-Lyu Yeh, Patricia Goodson, Shixi Zhao, Eunju Jung, Amber Muenzenberger, Oi-Man Kwok and Ping Ma in American Journal of Health Promotion

Understanding parents' educational needs concerning genetic testing for their children with autism spectrum disorder (ASD) is important in developing tailored, evidence-based health education materials for clinical use. Since research is lacking in this area, to bridge the gap, we examined genetic testing education needs using a nationwide sample of parents of biological children with ASD in the United States. Prospective participants were recruited from the interactive autism network, and 552 parents of biological children with ASD completed the online survey. Most participants (73.7%) were interested in receiving health education about genetic testing. Yet, the majority of them (64.7%) reported that they did not receive the information needed from physicians. Parents who identified as racial/ethnic minorities (P = 0.029), who had an education degree below college (P = 0.002), or displayed low/no awareness of genetic testing (P = 0.003) were more interested in receiving health education regarding genetic testing. Parents' most desired topics for health education include the accuracy of genetic testing (88.4%), cost (85.9%), relevant benefits of such testing (83.8%), testing procedure (77.8%), eligibility to undergo genetic testing for their children with ASD (62.4%), potential harms caused by genetic testing (56.1%), previous use and experience among individuals affected by ASD (50.8%), and confidentiality issues (48.0%). Furthermore, web-based education was the preferable approach (85.4%). Our findings can help develop health education programs and/or materials regarding genetic testing for parents and physicians to facilitate better physician-parent communication and assist parents in making informed medical decisions regarding genetic testing. Autism Res 2019, 12: 1162-1170. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: This study examined educational needs on genetic testing among 552 American parents of children with autism spectrum disorder (ASD). Results showed that most parents expressed interests in receiving health education regarding genetic testing (73.7%) and favored online education resources (85.4%). Preferred topics included accuracy, cost, and testing benefits. Our findings can help develop genetic testing related health education programs and materials for parents of children with ASD.

Background: Subjective risk perception is an important theoretical construct in the field of cancer prevention and control. Although the relationship between subjective risk perception and health behaviors has been widely studied in many health contexts, the causalities and associations between the risk perception of developing lung cancer and cigarette smoking have been inconsistently reported among studies. Such inconsistency may be from discrepancies between study designs (cross-sectional versus longitudinal designs) and the three hypotheses (i.e., the behavior motivation hypothesis, the risk reappraisals hypothesis, and the accuracy hypothesis) testing different underlying associations between risk perception and cigarette-smoking behaviors. To clarify this issue, as an initial step, we examined the association between absolute and relative risk perceptions of developing lung cancer and cigarette-smoking behaviors among a large, national representative sample of 1,680 U.S. adults by testing an accuracy hypothesis (i.e., people who smoke accurately perceived a higher risk of developing lung cancer). Methods: Data from the U.S. Health Information National Trends Survey (HINTS) were analyzed using logistic regression and multivariate linear regression to examine the associations between risk perception and cigarette-smoking behaviors among 1,680 U.S. adults. Results: Findings from this cross-sectional survey suggest that absolute and relative risk perceptions were positively and significantly correlated with having smoked >100 cigarettes during lifetime and the frequency of cigarette smoking. Only absolute risk perception was significantly associated with the number of cigarettes smoked per day among current smokers. Conclusions: Because both absolute and relative risk perceptions are positively related to most cigarette-smoking behaviors, this study supports the accuracy hypothesis. Moreover, absolute risk perception might be a more sensitive measurement than relative risk perception for perceived lung cancer risk. Longitudinal research is needed in the future to investigate other types of risk perception-risk behavior hypotheses—the behavior motivation and the risk reappraisals hypotheses—among nationally representative samples to further examine the causations between risk perception of obtaining lung cancer and smoking behaviors.

Objective Leading health agencies recommend physicians to provide information regarding genetic testing for autism spectrum disorders (ASD) to parents of affected children. How to effectively provide this information, however, is unclear for physicians. This qualitative study examined the information needs regarding ASD genetic testing among parents of affected children. Methods Semi-structured, in-depth interviews were conducted with 42 parents who had at least one child with ASD. Content analysis was utilized to analyze the interview data. Results The majority of parents (83%) reported they had never received information regarding ASD genetic testing from their doctors. Nevertheless, most parents (86%) expressed an interest to learn about this information. Their preferred topics included: cost (60%), benefits (48%), accuracy (38%), test procedure (29%), potential physical harms from the test (29%), confidentiality (12%), previous utilization by other affected families (2%), and eligibility criteria for this genetic testing (2%). Moreover, parents mentioned various methods to facilitate their learning, including Web-based approaches (43%), workshops/seminars (36%), brochures and flyers (31%), and videos (10%). Conclusion To promote parental informed decision-making regarding ASD genetic testing, educational materials should be developed based on our findings. Practice implications Application of these needs assessment findings will subsequently improve the delivery of healthcare services.

With the increased advances in genomics, leading health authorities have advocated the importance of incorporating genomics content into health professional school education to ensure those students achieve adequate genomic competencies. Yet, information regarding the genomics education status for this particular group is lacking. We conducted a systematic literature review to summarize the characteristics and evaluation outcomes of genomics curricula for health professional students. Medline (OVID), EMBASE, CAB (EBSCO), Global Health, MedEdPORTAL, Google Scholar, and Web of Science were searched for relevant articles. Forty-one articles met our inclusion criteria. The majority were conducted in the United States and offered to pharmacy and medical students (the number of students ranged from 10 to 2674). The effects of genomics curricula on students’ knowledge (n = 36), attitudes (n = 16), self-efficacy (n = 14), comfort level (n = 4), intention (n = 3), motivation (n = 3), and behavior (n = 2) were assessed. Although those results were generally positive, 68.3% of the genomics curricula were not theory-based, and most studies did not report follow-up data (85.4%). Our findings provided information on the existing genomics curricula available for health professional students.

Supplemental material, AUT778903_Lay_Abstract for Information needs in genetic testing: A needs assessment survey among Taiwanese parents of children with autism spectrum disorders by Lei-Shih Chen, Jungkyung Min, Shixi Zhao, Yu-Chen Yeh and Tse-Yang Huang in Autism

In the United States, prenatal genetic testing (PGT) for Autism Spectrum Disorders (ASD) is currently available via clinical genetic services. Such testing may inform parents about their unborn child's risk for ASD, prepare parents for the birth of an affected infant, and allow them to arrange for early interventions. Although PGT for autism has potential benefits, the associated ethical, legal, and social implications (ELSI) should be considered. This first qualitative study employed a hypothetical scenario to explore the attitudes toward PGT and termination decisions of 42 parents of children with ASD. Over half of the participants expressed willingness to undergo PGT for autism. Reasons included better preparation for birth, early and better treatment, termination of affected pregnancy, contribution to research, and curiosity. Of the 31 parents who were either willing or unsure about undergoing the PGT, approximately three-fourths would continue their hypothetical affected pregnancies. Explanations included preparation for birth of the child, bonding or acceptance of existing ASD-affected children, apprehensions about test limitations, and religious concerns. Parents who reported they would terminate the affected pregnancy in this hypothetical situation were primarily Asians. This study contributes to the growing understanding of the ELSI aspects of PGT in clinical practice.

Genomics services have the potential to reduce incidence and mortality of diseases by providing individualized, family health history (FHH)-based prevention strategies to clients. These services may benefit from the involvement of community health workers (CHWs) in the provision of FHH-based genomics education and services, as CHWs are frontline public health workers and lay health educators, who share similar ethnicities, languages, socioeconomic statuses, and life experiences with the communities they serve. We developed, implemented, and evaluated the FHH-based genomics training program for CHWs. This theory- and evidence-based FHH-focused genomics curriculum was developed by an interdisciplinary team. Full-day workshops in English and Spanish were delivered to 145 Texas CHWs (91.6% were Hispanic/black). Preworkshop, postworkshop, and 3-month follow-up data were collected. CHWs significantly improved their attitudes, intention, self-efficacy, and knowledge regarding adopting FHH-based genomics into their practice after the workshops. At 3-month follow-up, these scores remained higher, and there was a significant increase in CHWs’ genomics practices. This FHH-based genomics training successfully educated Texas CHWs, and the outcomes were promising. Dissemination of training to CHWs in and outside of Texas is needed to promote better access to and delivery of personalized genomics services for the lay and underserved communities.

Objective Autism Spectrum Disorders (ASD) have a significant genetic predisposition. The recurrence risk of ASD ranges from 3% to 18.7% for parents having one affected child. As recurrence risk perceptions have important implications for family planning, prenatal preparation, and future children managements, absolute and relative recurrence risk perceptions of having another affected child among Taiwanese parents of children with ASD were assessed. Methods This study collected quantitative survey data from 415 Taiwanese parents who had one child with ASD. Results Participants reported their absolute recurrence risk of having another child with ASD was 33.4%. Compared to other parents with normally-developing children, merely 49.8% of participants perceived higher relative recurrence risk. By controlling for the sociodemographic characteristics, participants’ absolute recurrence risk perceptions were significantly predicted by their perceived genetic causes of ASD and family history of ASD. Yet, participants’ relative recurrence risk perceptions were significantly associated with only the perceived genetic etiology. Conclusion Taiwanese parents of children diagnosed with ASD had an incorrect understanding of their absolute and relative recurrence risks. Practice implications To facilitate informed decision-making in family planning, healthcare providers should discuss absolute and relative recurrence risks as well as genetic causes of ASD with this particular group.