How Does an Online Mental Health Community on Twitter Empower Diverse Population Levels and Groups? A Qualitative Analysis of #BipolarClub.

BACKGROUND: Social media, including online health communities (OHCs), are widely used among both healthy people and those with health conditions. Platforms like Twitter (recently renamed X) have become powerful tools for online mental health communities (OMHCs), enabling users to exchange information, express feelings, and socialize. Recognized as empowering processes, these activities could empower mental health consumers, their families and friends, and society. However, it remains unclear how OMHCs empower diverse population levels and groups. OBJECTIVE: This study aimed to develop an understanding of how empowerment processes are conducted within OMHCs on Twitter by identifying members who shape these communities, detecting the types of empowerment processes aligned with the population levels and groups outlined in Strategy 1 of the Integrated People-Centred Health Services (IPCHS) framework by the World Health Organization (WHO), and clarifying members' involvement tendencies in these processes. METHODS: We conducted our analysis on a Twitter OMHC called #bipolarclub. We captured 2068 original tweets using its hashtag #bipolarclub between December 19, 2022, and January 15, 2023. After screening, 547 eligible tweets by 182 authors were analyzed. Using qualitative content analysis, community members were classified by examining the 182 authors' Twitter profiles, and empowerment processes were identified by analyzing the 547 tweets and categorized according to the WHO's Strategy 1. Members' tendencies of involvement were examined through their contributions to the identified processes. RESULTS: The analysis of #bipolarclub community members unveiled 5 main classifications among the 182 members, with the majority classified as individual members (n=138, 75.8%), followed by health care-related members (n=39, 21.4%). All members declared that they experience mental health conditions, including mental health and general practitioner members, who used the community as consumers and peers rather than for professional services. The analysis of 547 tweets for empowerment processes revealed 3 categories: individual-level processes (6 processes and 2 subprocesses), informal carer processes (1 process for families and 1 process for friends), and society-level processes (1 process and 2 subprocesses). The analysis also demonstrated distinct involvement tendencies among members, influenced by their identities, with individual members engaging in self-expression and family awareness support and health care-related members supporting societal awareness. CONCLUSIONS: The examination of the #bipolarclub community highlights the capability of Twitter-based OMHCs to empower mental health consumers (including those from underserved and marginalized populations), their families and friends, and society, aligning with the WHO's empowerment agenda. This underscores the potential benefits of leveraging Twitter for such objectives. This pioneering study is the very first to analyze how a single OMHC can empower diverse populations, offering various health care stakeholders valuable guidance and aiding them in developing consumer-oriented empowerment programs using such OMHCs. We also propose a structured framework that classifies empowerment processes in OMHCs, inspired by the WHO's Strategy 1 (IPCHS framework).

Gene expression and splicing QTL analysis of blood cells in African American participants from the Jackson Heart Study.

Most gene expression and alternative splicing quantitative trait loci (eQTL/sQTL) studies have been biased toward European ancestry individuals. Here, we performed eQTL and sQTL analyses using TOPMed whole-genome sequencing-derived genotype data and RNA-sequencing data from stored peripheral blood mononuclear cells in 1,012 African American participants from the Jackson Heart Study (JHS). At a false discovery rate of 5%, we identified 17,630 unique eQTL credible sets covering 16,538 unique genes; and 24,525 unique sQTL credible sets covering 9,605 unique genes, with lead QTL at P < 5e-8. About 24% of independent eQTLs and independent sQTLs with a minor allele frequency > 1% in JHS were rare (minor allele frequency < 0.1%), and therefore unlikely to be detected, in European ancestry individuals. Finally, we created an open database, which is freely available online, allowing fast query and bulk download of our QTL results.

Emotional and functional well-being in long-term breast cancer survivorship.

PURPOSE: Emotional and functional well-being (EWB and FWB) are important components of mental health and quality of life. This study aims to evaluate long-term EWB and FWB in breast cancer (BC) survivors. METHODS: The Carolina Breast Cancer Study Phase 3 oversampled Black and younger (< 50 years in age) women so that they each represent approximately 50% of the study population and assessed participants' EWB and FWB with the Functional Assessment of Cancer Therapy-Breast (FACT-B) at 5- (baseline), 25-, and 84-months post diagnosis. Multinomial logit models were used to estimate adjusted odds ratios (ORs) and 95% confidence intervals (CIs) for associations between demographic and clinical characteristics and well-being change relative to baseline. RESULTS: Among 2,781 participants with BC, average EWB and FWB improved with time since diagnosis. Persistent FWB decrements were associated with Black race [OR 1.4 (95% CI 1.2-1.7) and 1.3 (95% CI 1.1-1.6), at 25-months and 84-months respectively], older age [OR 1.4 (95% CI 1.1-1.7) and 1.5 (95% CI 1.2-1.8), respectively], no chemotherapy, and recurrence [OR 2.9 (95% CI 1.8-4.8) and 3.1 (95% CI 2.1-4.6), respectively]. EWB decrements were associated with advanced stage and recurrence. Decrements in combined (FWB+EWB) well-being were associated with recurrence at both follow-up survey timepoints [ORs 4.7 (95% CI 2.7-8.0) and 4.3 (95% CI 2.8-6.6), respectively]. CONCLUSIONS: Long-term well-being varies by demographics and clinical features, with Black women and women with aggressive disease at greatest risk of long-term decrements.

Utilization of the remote monitoring of cardiac implantable electronic devices in a diverse demographic cohort: Insights from a single-center observation.

BACKGROUND: Despite its clinical benefits, patient compliance to remote monitoring (RM) of cardiac implantable electronic devices (CIEDs) varies and remains under-studied in diverse populations. OBJECTIVE: We sought to evaluate RM compliance, clinical outcomes, and identify demographic and socioeconomic factors affecting RM in a diverse urban population in New York. METHODS: This retrospective cohort study included patients enrolled in CIED RM at Montefiore Medical Center between December 2017 and May 2022. RM compliance was defined as the percentage of days compliant to RM transmission divided by the total prescribed days of RM. Patients were censored when they were lost to follow-up or at the time of death. The cohorts were categorized into low (≤30%), intermediate (31-69%), and high (≥70%) RM compliance groups. Statistical analyses were conducted accordingly. RESULTS: Among 853 patients, median RM compliance was 55%. Age inversely affected compliance (p < .001), and high compliance was associated with guideline-directed medical therapy (GDMT) usage and implantable cardioverter defibrillator (ICD)/cardiac resynchronization defibrillator (CRTD) devices. The low-compliance group had a higher mortality rate and fewer regular clinic visits (p < .001) than high-compliance group. Socioeconomic factors did not significantly impact compliance, while Asians showed higher compliance compared with Whites (OR 3.67; 95% CI 1.08-12.43; p = .04). Technical issues were the main reason for non-compliance. CONCLUSION: We observed suboptimal compliance to RM, which occurred most frequently in older patients. Clinic visit compliance, optimal medical therapy, and lower mortality were associated with higher compliance, whereas insufficient understanding of RM usage was the chief barrier to compliance.

Predictive Value of CT Biomarkers in Lung Transplantation Survival: Preliminary Investigation in a Diverse, Underserved, Urban Population.

INTRODUCTION: Survival following lung transplant is low. With limited donor lung availability, predicting post-transplant survival is key. We investigated the predictive value of pre-transplant CT biomarkers on survival. METHODS: In this single-center retrospective cohort study of adults in a diverse, underserved, urban lung transplant program (11/8/2017-5/20/2022), chest CTs were analyzed using TeraRecon to assess musculature, fat, and bone. Erector spinae and pectoralis muscle area and attenuation were analyzed. Sarcopenia thresholds were 34.3 (women) and 38.5 (men) Hounsfield Units (HU). Visceral and subcutaneous fat area and HU, and vertebral body HU were measured. Demographics and pre-transplant metrics were recorded. Survival analyses included Kaplan-Meier and Cox proportional hazard. RESULTS: The study cohort comprised 131 patients, 50 women, mean age 60.82 (SD 10.15) years, and mean follow-up 1.78 (SD 1.23) years. Twenty-nine percent were White. Mortality was 32.1%. Kaplan-Meier curves did not follow the proportional hazard assumption for sex, so analysis was stratified. Pre-transplant EMR metrics did not predict survival. Women without sarcopenia at erector spinae or pectoralis had 100% survival (p = 0.007). Sarcopenia did not predict survival in men and muscle area did not predict survival in either sex. Men with higher visceral fat area and HU had decreased survival (p = 0.02). Higher vertebral body density predicted improved survival in men (p = 0.026) and women (p = 0.045). CONCLUSION: Pre-transplantation CT biomarkers had predictive value in lung transplant survival and varied by sex. The absence of sarcopenia in women, lower visceral fat attenuation and area in men, and higher vertebral body density in both sexes predicted survival in our diverse, urban population.

Assessing cognitive impairment in an ethnically diverse cohort of oldest-old: the life after 90 study.

BACKGROUND: Though dementia rates vary by racial or ethnic groups, it is unknown if these disparities remain among those aged 90 or older. AIMS: To test this hypothesis, we used baseline clinical evaluation of 541 ethnically and racially diverse individuals participating in the LifeAfter90 Study to assess how associations between core demographic characteristics and measures of physical and cognitive performance differ across the racial/ethnic groups. METHODS: Participants in this study were long-term non-demented members of Kaiser Permanente Northern California. They were clinically evaluated and diagnosed with normal or impaired cognition (mild cognitive impairment and dementia) through an in-person comprehensive clinical assessment consisting of a detailed medical history, physical and neurological examination, functional, and cognitive tests. RESULTS: The average age at enrollment was 93.0 ± 2.6 years, 62.4% female and 34.2% non-Hispanic White. At initial evaluation 301 participants had normal cognition and 165 had mild cognitive impairment (MCI) and despite screening, 69 participants were determined to have dementia. Age, education, 3MS, FAQ and CDR scores were significantly associated with cognitive impairment (normal versus MCI and dementia), but not gender. There was a significant univariate association between race/ethnicity and cognitive impairment (p < 0.02) being highest among Black (57.4%) and lowest among Asian (32.7%) individuals. After adjustment for age, gender, and education, however, prevalence of cognitive impairment was not influenced by race or ethnicity. CONCLUSION: Our results confirm the ability to reliably assess clinical diagnosis in a diverse sample of very old individuals.

Experiences of embedding gender and sexuality diversity workshops in an undergraduate medical imaging curriculum.

This commentary describes some of the reported challenges of health participation for the gender- and sexuality-diverse (GSD) population, particularly related to medical imaging practice. The approach and student feedback of an undergraduate education initiative to support students in the delivery of culturally competent care are described. The experiences of delivery over a three-year period are reported, including the 2020 online delivery due to COVID-19 precautions. Student feedback demonstrates positive outcomes from the workshops and activities.

Lessons learned while starting multi-institutional genetics research in diverse populations: A report from the Clinical Sequencing Evidence-Generating Research (CSER) consortium.

BACKGROUND: Increasing diversity in clinical trial participation is necessary to improve health outcomes and requires addressing existing social, structural, and geographic barriers. The Clinical Sequencing Evidence-Generating Research Consortium (CSER) included six research projects to enroll historically underrepresented/underserved (UR/US) populations in clinical genomics research. Delays and project re-designs emerged shortly after work began. Understanding common experiences of these projects may inform future trial implementation. METHODS: Semi-structured interviews with six CSER principal investigators and seven project managers were performed. An interview guide included questions of research/clinical infrastructure, logistics across sites, language, communication, and allocation of grant-related resources. Interviews were recorded, transcribed verbatim; transcripts were analyzed using inductive coding, thematic analysis and consensus building. RESULTS: All projects collaborating with new clinical sub-sites to recruit UR/US populations. Refining trial logistics continued long after enrollment for all projects. Themes of challenges included: sub-site customization for workflow and genetics support, conflicting input from participant advisory groups and approval bodies, developing research personnel, complex data management structures, and external changes (e.g. subcontractors ending contracts) that required redesign. Themes of beneficial lessons included: domains with prior experience were easier, develop project champions at each sub-site, structure communication within the research team, and simplify research design when possible. CONCLUSIONS: The operational aspects of expanding clinical research into novel sub-sites are significant and require investment of time and resources. The themes arising from these interviews suggest priority areas for more quantitative analyses in the future including multi-institutional approval policies and processes, data management structures, and incremental research complexity.

Attitudes among Parents towards Return of Disease-Related Polygenic Risk Scores (PRS) for Their Children.

The electronic MEdical Records and GEnomics (eMERGE) consortium will return risk reports pertaining to specific diseases, a key component of which will be polygenic risk scores (PRS), to 25,000 participants, including 5000 children. Understanding comprehension and the perceived value of these PRS-based reports among parents will be critical for effective return of results in children. To address this issue, we conducted semi-structured interviews with 40 African American and Hispanic parents at The Children's Hospital of Philadelphia and Boston Children's Hospital. Each participant received a hypothetical risk report identifying their child as high risk for either type 2 diabetes or asthma. Participants were assessed on their comprehension of absolute versus relative risk framing, likelihood of following risk-reduction recommendations, perceived value of the information, psychosocial impact, education/support needed, and suggestions to improve the PRS-based report to make it more accessible. Results demonstrated high perceived value in receiving PRS-based reports but also draws attention to important shortfalls in comprehension due to factors including the health of the child, family history, and how the risk was framed. This study provides an insight into implementing the return of genomic risk scores in a pediatric setting.

Social Media and Online Digital Technology Use Among Muslim Young People and Parents: Qualitative Focus Group Study.

BACKGROUND: Digital technology and social media use are common among young people in Australia and worldwide. Research suggests that young people have both positive and negative experiences online, but we know little about the experiences of Muslim communities. OBJECTIVE: This study aims to explore the positive and negative experiences of digital technology and social media use among young people and parents from Muslim backgrounds in Melbourne, Victoria, Australia. METHODS: This study involved a partnership between researchers and a not-for-profit organization that work with culturally and linguistically diverse communities. We adopted a participatory and qualitative approach and designed the research in consultation with young people from Muslim backgrounds. Data were collected through in-person and online focus groups with 33 young people aged 16-22 years and 15 parents aged 40-57 years. Data were thematically analyzed. RESULTS: We generated 3 themes: (1) maintaining local and global connections, (2) a paradoxical space: identity, belonging and discrimination, and (3) the digital divide between young Muslims and parents. Results highlighted that social media was an important extension of social and cultural connections, particularly during COVID-19, when people were unable to connect through school or places of worship. Young participants perceived social media as a space where they could establish their identity and feel a sense of belonging. However, participants were also at risk of being exposed to discrimination and unrealistic standards of beauty and success. Although parents and young people shared some similar concerns, there was a large digital divide in online experiences. Both groups implemented strategies to reduce social media use, with young people believing that having short technology-free breaks during prayer and quality family time was beneficial for their mental well-being. CONCLUSIONS: Programs that address technology-related harms must acknowledge the benefits of social media for young Muslims across identity, belonging, representation, and social connection. Further research is required to understand how parents and young people can create environments that foster technology-free breaks to support mental well-being.

Amplifying Their Voices: Advice, Guidance, and Perceived Value of Cancer Biobanking Research Among an Older, Diverse Cohort.

The use of biobanks may accelerate scientists' chances of developing cures and treatments that are tailored to individuals' biological makeup-a function of the precision medicine movement. However, given the underrepresentation of certain populations in biobanks, the benefits of these resources may not be equitable for all groups, including older, multi-ethnic populations. The objective of this study was to better understand older, multi-ethnic populations' (1) perceptions of the value of cancer biobanking research, (2) study design preferences, and (3) guidance on ways to promote and increase participation. This study was designed using a community-based participatory research (CBPR) approach and involved eight FGDs with 67 older (65-74 years old) black and white residents from Baltimore City and Prince George's County, MD. FGDs lasted between 90 and 120 min, and participants received a $25 Target gift card for their participation. Analysis involved an inductive approach in which we went through a series of open and axial coding techniques to generate themes and subthemes. Multiple themes emerged from the FGDs for the development of future cancer-related biobanking research including (1) expectations/anticipated benefits, (2) biobanking design preferences, and (3) ways to optimize participation. Overall, most participants were willing to provide biospecimens and favored cancer-related biobank. To increase participation of older, diverse participants in biobanking protocols, researchers need to engage older, diverse persons as consultants in order to better understand the value of biobanking research to individuals from the various populations. Scientists should also incorporate suggestions from the community on garnering trust and increasing comfort with study design.

Cultural Competency in Voice Evaluation: Considerations of Normative Standards for Sociolinguistically Diverse Voices.

AIM: Significant differences exist in anatomical, acoustic, and aerodynamic parameters for nonspeech tasks between culturally and linguistically diverse sample populations. There is a need for expansion of the normative acoustic data to include sociolinguistically diverse groups to ensure that clinical objective measurements are accurately classifying the voice quality of all individuals. This study examined objective measures of voice quality assessment of monolingual speakers of Standard American English (SAE) with sequential bilingual, native (L1) French and Spanish speakers on perturbation, noise, spectral/cepstral analyses, and compared ratings on auditory-perceptual assessment with acoustic data secondary to degree of accentedness. METHOD: Thirty speakers with normal voice quality were rated on the Consensus Auditory-Perceptual Evaluation of Voice scale. Voice quality measures were analyzed using the Multi-Dimensional Voice Program and Analysis of Dysphonia in Speech and Voice. A measure of accentedness of SAE was calculated using an informal task by two evaluators. RESULTS: Objective acoustic measures of jitter and all-voiced cepstral peak prominence were statistically significant between SAE speakers and L1 Spanish and French speakers. SAE speakers demonstrated significantly higher group mean cepstral peak prominence for the all-voiced sentence ("We were away a year ago.") than native French and Spanish speakers. There were no significant differences in perception of voice quality and acoustic measures secondary to degree of accentedness of the non-native SAE speakers. CONCLUSION: It is important to engage and strengthen voice diagnostic measures to support culturally competent service delivery for the diversifying clinical population. Normative databases established on SAE speakers should reflect the statistically significant differences evidenced between diverse sociolinguistic populations in anatomical, auditory-perceptual, aerodynamic, and acoustical parameters.

Poor sleep quality is associated with new-onset hypertension in a diverse young and middle-aged population.

BACKGROUND: Sleep disorders have been proposed as the potential risk factors for hypertension, thus we aimed to investigate the association of sleep quality with new-onset hypertension. METHODS: We evaluated sleep quality using Pittsburgh Sleep Quality Index (PSQI) and it's seven components in normotensive population aged 18 years old and over in Emin Xinjiang, China in 2016 and followed up till 2019 using annual health checkup data. Poor sleep quality was defined as a PSQI score>5, and good sleep quality was defined as a PSQI score⩽5. RESULTS: Among 9344 analytic sample 57.29% were female. A total of 2958 (31.66%) subjects developed hypertension during 22,960 person-years of follow-up. Poor sleep quality (HR 1.131, 95% CI 1.045, 1.224) showed had higher risk of development hypertension in total population in adjusted Cox models. Fairly bad subjective sleep quality (HR 1.148, 95% CI 1.015, 1.298), habitual sleep efficiency of <65%-75% group (HR 1.174, 95% CI 1.026, 1.344), and mild (HR 1.194, 95% CI 1.098, 1.299) and moderate (HR 1.264, 95% CI 1.080, 1.479) sleep disturbance increased the risk of developing hypertension compared to their counterparts. In age stratification, poor sleep quality (HR 1.100, 95% CI 1.007, 1.202) had higher risk of developing hypertension in the young and middle-aged population after adjusted all covariates. CONCLUSIONS: Poor sleep quality is associated with higher risk of new-onset hypertension in young and middle-aged population.

Screening for Depression in Adolescents with Developmental Disabilities: Brief Report.

Objectives: (1) To examine adherence of universal screening for adolescent depression at initial visits by using an established screening instrument (Patient Health Questionnaire 9 [PHQ-9]) in a university-affiliated urban developmental center that serves children with developmental disabilities (DDs); (2) to study the frequency of positive screening for depression in adolescents with DD. Methods: Review of all adolescents referred for multidisciplinary evaluation in a developmental center in 2019. Data included demographics, DD diagnoses, and use of and scores on the PHQ-9 at initial visit. Statistics included chi-square and non-parametrics. Results: Of all the children evaluated in 2019 (n = 240), 52 were adolescents, 35 boys (63%)/17 girls (37%), age 14 ± 2 years old, and 27 (54%) belonging to a bilingual English-Spanish household. DD: Developmental Language Disorder (88%), Learning Disabilities (54%), attention-deficit/hyperactivity disorder (44%), Autism Spectrum Disorder (25%), Intellectual Disabilities (12%), and Phonological Disorder (8%). The PHQ-9 was administered to 30 (58%) individuals. Scores varied from minimal depression for 17 (57%), mild for 10 (33%), and moderate and severe for 3 (10%); 3 patients endorsed suicidality. Females were more likely to obtain higher scores on the PHQ-9 than males. Adolescents diagnosed with Autism Spectrum Disorder, Intellectual Disabilities, and Phonological Disorder were less likely to be screened. Conclusion: More than half of the sample of urban adolescents with DD were screened for depression at initial visit, and 10% screened positive for moderate to severe depression. Efforts to follow the U.S. Preventive Services Task Force recommendation of universal screening of adolescent depression should continue. However, given challenges with reading and verbal abilities, screening modifications (reading to them) should be considered.

Representation of Diverse Populations in Couple and Family Therapy Intervention Studies: A Systematic Review of Race/Ethnicity, Sexual Orientation, Age, and Income in the United States from 2014 to 2019.

Disparities in mental health care among marginalized populations have been well-documented. Without research designed to study interventions for diverse populations, disparities in the quality of services will persist. A systematic review of articles evaluating couple and family therapy (CFT) interventions was conducted to evaluate the representation of diverse populations. More specifically, researchers sought to examine race/ethnicity, sexual orientation, income level, and age of sample participants. One hundred ninety-six studies evaluating CFT interventions in the United States in ten journals were included in the analysis. Findings indicate that family therapy research is more representative of racial minority and low-income participants compared with studies of couple interventions. Couple therapy research is often still conducted with predominately white, middle- to high-income samples. Following whites, African Americans and Hispanic/Latinos were the most common racial/ethnic groups included in both couple therapy research and family therapy research. Participants in same-sex relationships were absent from family intervention research and under-researched in couple intervention studies. Only one couple therapy study recruited a sample in which the average age was late adulthood. These findings are cause for concern given the widening mental health disparities in the United States.

Las desigualdades en la atención para la salud mental entre poblaciones marginadas están muy bien documentadas. Si no se diseñan investigaciones para estudiar intervenciones orientadas a poblaciones diversas, las desigualdades en la calidad de los servicios y en los resultados de los tratamientos seguirán existiendo. Se realizó un análisis sistemático de artículos que evaluaban las intervenciones de la terapia familiar y de pareja para evaluar la representación de poblaciones diversas. Más específicamente, los investigadores intentaron analizar la raza/etnia, la orientación sexual, el nivel de ingresos y la edad de los participantes de la muestra. Se incluyeron en el análisis ciento noventa y seis estudios que evaluaban las intervenciones de la terapia familiar y de pareja en los Estados Unidos en diez revistas médicas. Los resultados indican que la investigación sobre terapia familiar es más representativa de la minoría racial y de los participantes de bajos recursos en comparación con los estudios de intervenciones para las parejas. La investigación sobre terapia de pareja generalmente se sigue realizando con muestras predominantemente blancas, de ingresos medios y altos. Después de los blancos, los afroestadounidenses y los hispanos/latinos fueron los grupos raciales/étnicos más comunes incluidos tanto en la investigación sobre terapia familiar como en la de pareja. Los participantes de relaciones del mismo sexo estuvieron ausentes en las investigaciones sobre intervenciones familiares y se investigaron poco en los estudios sobre intervenciones para parejas. Solo un estudio sobre terapia de pareja reunió una muestra en la cual la edad promedio fue la edad adulta tardía. Estos resultados son motivo de preocupación teniendo en cuenta las desigualdades crecientes en el ámbito de la salud mental en los Estados Unidos.

Adherence to annual lung cancer screening with low-dose CT scan in a diverse population.

PURPOSE: Our aim was to develop a novel approach for lung cancer screening among a diverse population that integrates the Centers for Medicare and Medicaid Services (CMS) recommended components including shared decision making (SDM), low-dose CT (LDCT), reporting of results in a standardized format, smoking cessation, and arrangement of follow-up care. METHODS: Between October of 2015 and March of 2018, we enrolled patients, gathered data on demographics, delivery of SDM, reporting of LDCT results using Lung-RADS, discussion of results, and smoking cessation counseling. We measured adherence to follow-up care, cancer diagnosis, cancer treatment, and smoking cessation at 2 years after initial LDCT. RESULTS: We enrolled 505 patients who were 57% African American, 30% Caucasian, 13% Hispanic, < 1% Asian, and 61% were active smokers. All participants participated in SDM, 88.1% used a decision aid, and 96.1% proceeded with LDCT. Of 496 completing LDCT, all received a discussion about results and follow-up recommendations. Overall, 12.9% had Lung-RADS 3 or 4, and 3.2% were diagnosed with lung cancer resulting in a false-positive rate of 10.7%. All 48 patients with positive screens but no cancer diagnosis adhered to follow-up care at 1 year, but only 35.4% adhered to recommended follow-up care at 2 years. The annual follow-up for patients with negative lung cancer screening results (Lung-RADS 1 and 2) was only 23.7% after one year and 2.8% after 2 years. All active smokers received smoking cessation counseling, but only 11% quit smoking. CONCLUSION: The findings show that an integrated lung cancer screening program can be safely implemented in a diverse population, but adherence to annual screening is poor.

Identifying rare, medically relevant variation via population-based genomic screening in Alabama: opportunities and pitfalls.

PURPOSE: To evaluate the effectiveness and specificity of population-based genomic screening in Alabama. METHODS: The Alabama Genomic Health Initiative (AGHI) has enrolled and evaluated 5369 participants for the presence of pathogenic/likely pathogenic (P/LP) variants using the Illumina Global Screening Array (GSA), with validation of all P/LP variants via Sanger sequencing in a CLIA-certified laboratory before return of results. RESULTS: Among 131 variants identified by the GSA that were evaluated by Sanger sequencing, 67 (51%) were false positives (FP). For 39 of the 67 FP variants, a benign/likely benign variant was present at or near the targeted P/LP variant. Variants detected within African American individuals were significantly enriched for FPs, likely due to a higher rate of nontargeted alternative alleles close to array-targeted P/LP variants. CONCLUSION: In AGHI, we have implemented an array-based process to screen for highly penetrant genetic variants in actionable disease genes. We demonstrate the need for clinical validation of array-identified variants in direct-to-consumer or population testing, especially for diverse populations.

Health service access and utilisation amongst culturally and linguistically diverse populations in regional South Australia: a qualitative study.

INTRODUCTION: Over the past few decades, Australia's population and multicultural landscape have changed significantly. The growing population of culturally and linguistically diverse (CALD) groups requires changes in the provision of health services to meet their special health needs. CALD populations face multiple challenges in accessing health services. Access to and utilisation of health services are multifaceted and are influenced by factors at individual, household and societal levels. Additionally, poor access to and utilisation of health services are affected by health systems, organisations and provider factors. Given the growing number and diversity of CALD populations in Australia, including in regional areas, a better understanding of these factors is crucial to identifying existing gaps and health service needs. This qualitative study aimed to explore factors affecting effective access to and utilisation of health services among CALD populations in the south and east regions of South Australia (SA). METHODS: The 'access to health service' theoretical framework developed by Levesque and colleagues guided this study. A qualitative study was conducted between December 2018 and April 2019 through: (a) individual interviews with service providers (n=23); and (b) focus group discussions (n=4) with CALD populations in three regional towns in SA. Data from interview and focus group discussions were analysed using inductive and deductive analysis approaches. RESULTS: Poor health literacy among CALD populations, such as difficulties in searching and understanding health information, and seeking the right services at the right time, were significant barriers to effective navigation and utilisation of health services. Factors leading to low health literacy included language and communication problems, the complexity of the Australian health system, and poor availability of multilingual health materials to health providers and community members. Interpreting services were widely used to facilitate communication between patients and health providers, although these were inadequate and needed some improvements. A shortage and high turnover of health providers as well as distance and transport difficulties were major barriers to the accessibility of health services. Poor access to female-specific services to meet cultural needs in some population groups and the lack of cultural competency training were key issues reported in relation to acceptability and cultural appropriateness of health services. Additionally, the cost of services and poor service affordability hampered access to and utilisation of some services. Finally, broader social determinants of health such as poor housing and unemployment were reported as factors negatively affecting access to health services by CALD populations. CONCLUSION: This study revealed key factors facilitating or constraining access to and utilisation of health services by CALD populations living in regional SA. A combination of strategies at different levels of health services is required to ensure services are accessible, culturally appropriate, acceptable and affordable. Improving accessibility is necessary in order to reduce inequity in health access and outcomes among the growing CALD populations in Australia.

Next generation sequencing of 11 HLA loci characterises a diverse UK cord blood bank.

The introduction of next generation sequencing (NGS) for stem cell donor registry typing has contributed to faster identification of compatible stem cell donors. However, the successful search for a matched unrelated donor for some patient groups is still affected by their ethnicity. In this study, DNA samples from 714 National Health Service (NHS) Cord Blood Bank donors were typed for HLA-A, -B, -C, -DRB1, -DRB345, -DQA1, -DQB1, -DPA1 and -DPB1 by NGS. Analysis of the ethnic diversity showed a high level of diversity, with the cohort comprising of 62.3% European and 37.7% of either multi-ethnic or non-European donors, of which 12.3% were multi-ethnic. The HLA diversity was further confirmed using PyPop analysis, 405 distinct alleles were observed in the overall NHS-CBB cohort, of which 37 alleles are non-CWD, including A*31:14N, B*35:68:02, C*14:23 and DQA1*05:10. Furthermore, HLA-DQA1 and HLA-DPA1 analysis showed 12% and 10%, respectively, of the alleles currently submitted to IMGT, confirming further diversity of the NHS-CBB cohort. The application of 11 HLA loci resolution by NGS revealed a high level of diversity in the NHS-CBB cohort. The incorporation of this data coupled with ethnicity data could lead to improved donor selection, contributing to better clinical outcomes for patients.

Community health workers involvement in preventative care in primary healthcare: a systematic scoping review.

OBJECTIVES: To review effective models of community health worker (CHW) involvement in preventive care for disadvantaged culturally and linguistically diverse (CALD) patients in primary healthcare (PHC) that may be applicable to the Australian context. DESIGN: Systematic scoping review. DATA SOURCES: The studies were gathered through searching Medline, EMBASE, EMCARE, PsycINFO, CINAHL and online portals of relevant organisations. ELIGIBILITY CRITERIA: All selected studies were original research studies which essentially evaluated preventive intervention undertake by CHWs in PHC. The intervened population were adults with or without diagnosed chronic health disease, culturally and linguistically diverse, or vulnerable due to geographic, economic and/or cultural characteristics that impede or compromise their access to healthcare. DATA EXTRACTION AND SYNTHESIS: Data extraction was undertaken systematically in an excel spreadsheet while the findings were synthesised in a narrative manner. The quality appraisal of the selected studies was performed using effective public health practice project quality assessment tool. RESULTS: A total of 1066 articles were identified during the initial search of six bibliographic databases. After screening the title, abstract and full text, 37 articles met the selection and methodological criteria and underwent data extraction. A high-quality evidence-base supporting the positive impact of CHWs supporting patients' access to healthcare and influencing positive behaviour change was found. Positive impacts of CHW interventions included improvements in clinical disease indicators, screening rates and behavioural change. Education-focused interventions were more effective in improving patient behaviour, whereas navigation interventions were most effective in improving access to services. Implementation was enhanced by cultural and linguistic congruence and specific training of CHWs in the intervention but reduced by short duration interventions, dropouts and poor adherence of patients. CONCLUSION: The evidence generated from this systematic scoping review demonstrates the contribution of CHWs to improving access to preventive care for patients from CALD and disadvantaged backgrounds by providing both education and navigational interventions. More research is needed on CHW training and the incorporation of CHWs into primary health care (PHC) teams.