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Vaccination is one of the most effective strategies to control the spread of COVID-19 and reduce morbidity and mortality; however, rapid and equitable vaccine distribution is required to achieve such outcomes. We conducted a basic interrupted time-series analysis to examine the short-term impacts of a citywide vaccine equity plan, the Protect Chicago Plus (PCP) plan. We compared vaccine coverage in zip codes in Chicago with high COVID-19 vulnerability, as identified from the Chicago COVID-19 Community Vulnerability Index, with coverage in all other zip codes in Chicago. From our analysis, we observed that implementation of PCP coincided with reduced vaccination disparities between Chicago communities with low and high vulnerability indexes over time. In our analysis of vaccination coverage before program implementation, vaccination coverage climbed nearly twice as fast among non-PCP zip codes (0.19% per day) than among PCP zip codes (0.10% per day) or by 0.09 percentage points ( P < .001). In model analysis after program implementation, zip codes prioritized for the program had 0.42% additional coverage per day as compared with 0.27% per day for non-PCP zip codes. Our findings suggest that such programs may improve vaccine equity, but additional research is needed to better understand the longer-term effects of citywide vaccination strategies on vaccine uptake.

Under Title IX, pregnant and/or parenting students (PPY) are protected from discrimination and are required to receive equal access to education. This study examines the implementation of Title IX, investigating whether Title IX rights are upheld for pregnant and/or parenting students attending Chicago Public Schools (CPS) using qualitative research methods.Stakeholder interviews with pregnant and/or parenting students and staff members at CPS were conducted. Qualitative data were transcribed, and a codebook was developed of common key themes.Results indicated Title IX is not implemented to its fullest extent or consistently throughout CPS. Pregnant and parenting students experienced a range of academic environments from supportive to hostile. Some students lacked accommodations and academic planning.Study findings can inform policymakers in improving Title IX policy and guide schools on compliance with Title IX. Schools must aim to act beyond policy to meet the needs of pregnant and parenting students and ensure their future success.

BACKGROUND: In order to End the HIV Epidemic (EHE) and reduce the number of incident HIV infections in the US by 90%, pre-exposure prophylaxis (PrEP) uptake and persistence among cisgender women, particularly racial and ethnic minority women, must be increased. Medical providers play a pivotal role across the PrEP care continuum. METHODS: In this qualitative study, guided by the Consolidated Framework for Implementation Research (CFIR), we explored healthcare provider perspectives on facilitators and barriers to PrEP implementation strategies for Black cisgender women in the Midwest United States. Data were analyzed using a deductive thematic content analysis approach RESULTS: A total of 10 medical providers completed individual qualitative interviews. Using the CFIR framework, we identified intervention characteristics (cost, dosing, adherence), individual patient and provider level factors (self-efficacy, knowledge, attitudes), and systematic barriers (inner setting, outer setting) that ultimately lead to PrEP inequalities. Implementation strategies to improve the PrEP care continuum identified include provider training, electronic medical record (EMR) optimization, routine patient education, and PrEP navigation. CONCLUSION: This study provides: (1) medical provider insight into implementation factors that can be modified to improve the PrEP care continuum for Black cisgender women; and (2) an implementation research logic model to guide future studies.

Background Expanding pre-exposure prophylaxis (PrEP) among transgender women in the United States is an important strategy to meet national HIV prevention goals, however self-reported use of PrEP is low in this group. Methods This study reports the findings of a cross-sectional analysis of the relationship of barriers as well as facilitators to recent PrEP use among transgender women enrolled in an evaluation of the TransLife Care project (Chicago, Illinois), a structural intervention designed to meet basic needs. We computed multivariable prevalence ratios for barriers, facilitators and recent PrEP use, controlling for demographics. Results Findings suggest that psychosocial and structural barriers, including moderate/high alcohol use, stimulant use, and history of incarceration were all positively associated with recent PrEP use among urban transgender women. In addition, a psychosocial facilitator, gender affirmation, was positively associated with recent PrEP use, while, while collective self-esteem, a was negatively associated with it. Finally, common indications for PrEP have high sensitivity, but low specificity and predictive value for identifying those on PrEP. Conclusion We conclude that despite a large gap in PrEP use among those with indications, individuals experiencing psychosocial and structural barriers are more likely to use PrEP, and facilitators, such as psychological sense of affirmed gender may support its use. Trial registration N/A.

HIV incidence remains high in the U.S. as do disparities in new HIV diagnosis between White and Black populations and access to preventive therapies like pre-exposure prophylaxis (PrEP). The federal Ending the HIV Epidemic (EHE) initiative was developed to prioritize resources to 50 jurisdictions with high HIV incidence.We conducted secondary analyses of data (2013-2019) from the CDC, Census Bureau, and AIDSVu to evaluate the correlation between PrEP use, HIV incidence, and HIV incidence disparities. We compared the PrEP-to-need ratio (PnR) with the ratio of Black and White HIV incidence rates in 46 EHE counties. Subsequent analyses were performed for the seven states that contained multiple EHE counties.These 46 counties represented 25.9% of the U.S. population in 2019. HIV incidence ranged from 10.5 in Sacramento County, CA, to 59.6 in Fulton County, GA (per 100,000). HIV incidence disparity ranged from 1.5 in Orleans Parish, LA, to 12.1 in Montgomery County, MD. PnR ranged from 26.8 in New York County, NY, to 1.46 in Shelby County, TN. Change in HIV incidence disparities and percent change in PnR were not significantly correlated (ρ = 0.06, p = 0.69). Change in overall HIV incidence was significantly correlated with increase in PnR (ρ = -0.42, p = 0.004).PrEP has the potential to significantly decrease HIV incidence; however, this benefit has not been conferred equally. Within EHE priority counties, we found significant HIV incidence disparities between White and Black populations. PrEP has decreased overall HIV incidence, but does not appear to have decreased HIV incidence disparity.

The COVID-19 pandemic has created increased need for telehealth appointments. To assess differences in appointment adherence for telehealth compared to in-person HIV medical care visits, we conducted a cross-sectional study of patients receiving HIV care in a safety-net hospital-based outpatient infectious disease clinic in a large urban area (Chicago, IL). The sample (N = 347) was predominantly Black (n = 251) and male (62.5%, n = 217); with a mean age of 44.2 years. Appointment attendance was higher for telehealth (78.9%) compared to in-person (61.9%) appointments. Compared to patients without drug use, those with drug use had 19.4 percentage point lower in-person appointment attendance. Compared to those with stable housing, those in unstable housing arrangements had 15.0 percentage point lower in-person appointment attendance. Telehealth as a modality will likely have some staying power as it offers patients newfound flexibility, but barriers to telehealth need to be assessed and addressed.

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In the United States, transgender women are disproportionately affected by HIV. However, few evidence-based prevention interventions exist for this key population. We describe two promising, locally developed interventions that are currently being implemented and evaluated through the Centers for Disease Control and Prevention Combination HIV Prevention for Transgender Women Project: (a) ChiCAS, designed to promote the uptake of pre-exposure prophylaxis (PrEP), condom use, and medically supervised hormone therapy among Spanish-speaking transgender Latinas, and (b) TransLife Care, designed to address the structural drivers of HIV risk through access to housing, employment, legal services, and medical services, including HIV preventive care (e.g., PrEP use) among racially/ethnically diverse urban transgender women. If the evaluation trials determine that these interventions are effective, they will be among the first such interventions for use with transgender women incorporating PrEP, thereby contributing to the evidence-based resources that may be used to reduce HIV risk among this population.

BackgroundNigeria is one of six countries with half the global burden of youth living with HIV. Interventions to date have been inadequate as AIDS-related deaths in Nigeria’s youth have remained unchanged in recent years. The iCARE Nigeria HIV treatment support intervention, a combination of peer navigation and SMS text message medication reminders to promote viral suppression, demonstrated initial efficacy and feasibility in a pilot trial among youth living with HIV in Nigeria. This paper describes the study protocol for the large-scale trial of the intervention.MethodsThe iCARE Nigeria-Treatment study is a randomized stepped wedge trial of a combination (peer navigation and text message reminder) intervention, delivered to youth over a period of 48 weeks to promote viral suppression. Youth receiving HIV treatment at six clinical sites in the North Central and South Western regions of Nigeria were recruited for participation. Eligibility criteria included registration as a patient at participating clinics, aged 15-24 years, on antiretroviral therapy for at least three months, ability to understand and read English, Hausa, Pidgin English, or Yoruba, and intent to remain a patient at the study site during the study period. The six clinic sites were divided into three clusters and randomized to a sequence of control and intervention periods for comparison. The primary outcome is plasma HIV-1 viral load suppression, defined as viral load ≤ 200 copies/mL, in the intervention period versus the control period at 48 weeks of intervention.DiscussionEvidence-based interventions to promote viral load suppression among youth in Nigeria are needed. This study will determine efficacy of a combination intervention (peer navigation and text message reminder) and collect data on potential implementation barriers and facilitators to inform scale-up if efficacy is confirmed.Trial registrationClinicalTrials.gov number, NCT 04950153, retrospectively registered July 6, 2021, https://clinicaltrials.gov/.

COVID-19 exacerbated health disparities, financial insecurity, and occupational safety for many within marginalized populations. This study, which took place between 2019 and 2022, aimed to explore the way in which sex workers (n = 36) in Chicago were impacted by COVID-19. We analyzed the transcripts of 36 individual interviews with a diverse group of sex workers using thematic analysis. Five general themes emerged regarding the detrimental impact of COVID-19 on sex workers: (1) the impact of COVID-19 on physical health; (2) the economic impact of COVID-19; (3) the impact of COVID-19 on safety; (4) the impact of COVID-19 on mental health; and (5) adaptive strategies for working during COVID-19. Participants reported that their physical and mental health, economic stability, and safety worsened due to COVID-19 and that adaptive strategies did not serve to improve working conditions. Findings highlight the ways in which sex workers are particularly vulnerable during a public health crisis, such as COVID-19. In response to these findings, targeted resources, an increased access to funding, community-empowered interventions and policy changes are needed to protect the health and safety of sex workers in Chicago.

Individuals experiencing chronic homelessness are highly marginalized and frequently access acute healthcare services. This program evaluation used secondary data collected from adults experiencing chronic homelessness (n=133) who participated in a Housing First program offering in-home behavioral health services within a large Midwestern city. Participant demographics (e.g., gender, race, age) and data on health factors (e.g., substance misuse and mental health symptoms, and ER visits and inpatient hospitalizations) were collected at program enrollment and at 6-month and 12-month follow-ups. High proportions of missing data led the evaluators to exclude 12-month follow-up and in-home behavioral health data from the analyses. Neither inpatient nights nor ER visits changed significantly between enrollment and 6-months. Males were disproportionately hospitalized throughout the study, suggesting a need for gender-targeted services. Higher rates of hospitalization among African Americans at enrollment subsided by follow-up. Future evaluation should examine if in-home behavioral health services reduced racial health disparities. Acute care use was low overall, likely because of the stabilizing impact of housing. Data limitations suggest a need for more robust study designs to identify causal factors and to enrich our understanding of the role of behavioral health intervention within the Housing First paradigm. Results underscore the importance of using empirically-supported assessment tools to evaluate consumers' individualized needs and responsively allocate supportive services.

We previously developed an electronic medical record-based algorithm for identifying patients at risk for HIV in the emergency department (ED). The aim of this study was to evaluate the performance of the HIV risk algorithm for identifying cisgender women with a pre-exposure prophylaxis (PrEP) indication. To retrospectively evaluate the HIV risk algorithm, we identified cisgender women with HIV diagnosed in the ED and retrospectively calculated the HIV risk algorithm output. To prospectively validate the algorithm, we surveyed cisgender women seeking care in the ED regarding behavioral risks for HIV. We prospectively determined whether the algorithm identified them as PrEP candidates. In the retrospective evaluation, 9.4% (2/21) of women with incident HIV infection were identified as at risk for HIV by the algorithm. In the prospective evaluation, 24% (59/245) of women who completed the survey had a PrEP indication based on self-report of behavioral risk factors for HIV. The sensitivity of the algorithm for identifying cisgender female PrEP candidates was 10%, and the specificity was 96%. PrEP indications missed by the electronic algorithm included condomless sex in a high HIV prevalence area, multiple sex partners, male partners who have sex with men, and recent bacterial sexually transmitted infections diagnosed at outside clinics. An electronic algorithm to identify PrEP candidates in the ED has low sensitivity for identifying cisgender women with PrEP indications. More research is needed to identify electronic data that can improve the algorithm sensitivity among cisgender women.

The ongoing COVID-19 pandemic has had widespread social, psychological, and economic impacts. However, these impacts are not distributed equally: already marginalized populations, specifically racial/ethnic minority groups and sexual and gender minority populations, may be more likely to suffer the effects of COVID-19. The COVID-19 Resiliency Survey was conducted by the city of Chicago to assess the impact of COVID-19 on city residents in the wake of Chicago’s initial lockdown, with particular focus on the experiences of minority populations. Chi-square tests of independence were performed to compare COVID-19-related outcomes and impacts on heterosexual vs. sexual minority populations, cisgender vs. gender minority populations, and White vs. racial/ethnic minority subgroups. Marginalized populations experienced significant disparities in COVID-19 exposure, susceptibility, and treatment access, as well as in psychosocial effects of the pandemic. Notably, Black and Latinx populations reported significant difficulties accessing food and supplies (p = 0.002). Healthcare access disparities were also visible, with Black and Latinx respondents reporting significantly lower levels of access to a provider to see if COVID-19 testing would be appropriate (p = 0.013), medical services (p = 0.001), and use of telehealth for mental health services (p = 0.001). Sexual minority respondents reported significantly lower rates of using telehealth for mental health services (p = 0.011), and gender minority respondents reported significantly lower levels of primary care provider access (p = 0.016). There are evident COVID-19 disparities experienced in Chicago especially for Black, Latinx, sexual minority, and gender minority groups. A greater focus must be paid to health equity, including providing increased resources and supplies for affected groups, adapting to inequities in the built environment, and ensuring adequate access to healthcare services to ameliorate the burden of COVID-19 on these marginalized populations. Supplementary Information The online version contains supplementary material available at 10.1007/s11524-020-00497-9.

Transgender women are disproportionately affected by HIV and experiences of social adversity that may interfere with engagement in care and viral suppression. We used latent class analysis to examine patterns of social adversity and their impact on HIV care continuum outcomes in an urban sample of transgender women of color. Participants (n = 224) were median age 29 and 86% non-Hispanic Black. Lack of resources, unemployment, and housing instability were reported by over 50%, and 41% reported history of incarceration. Latent class analysis identified 2 distinct classes representing higher and lower levels of social adversity. In latent class regression, membership in the higher social adversity class was associated with statistically significantly lower odds of viral suppression and HIV care engagement in univariate analysis; when adjusted for age, race, and recruitment site the association remained statistically significant for viral suppression (aOR 0.38, 95% CI 0.18-0.79; chi-square = 6.681, d.f. = 1, p = 0.010), though not for HIV care engagement. Our findings highlight the impact of socio-structural barriers on engagement in the HIV care continuum among transgender women.Las mujeres transgénero son desproporcionadamente afectadas por el VIH y las experiencias de adversidad social que pueden interferir con la participación en la atención medica y la supresión viral. Utilizamos un análisis de clase latente para examinar los patrones de adversidad social y su impacto en los resultados continuos de la atención medica del VIH en una muestra urbana de mujeres transgénero de color. Los participantes (n = 224) tenían una mediana de edad de 29 años y 86% negros no hispanos. La falta de recursos, el desempleo y la inestabilidad de la vivienda fueron reportados en más del 50%, y el 41% reportó antecedentes de encarcelamiento. El análisis de clase latente identificó 2 clases distintas que representan niveles más altos y más bajos de adversidad social. En la regresión de clase latente, la pertenencia a la clase de mayor adversidad social se asoció con probabilidades estadísticamente significante más bajas de supresión viral y participación en la atención medica del VIH en el análisis univariante; cuando se ajustó por edad, raza y sitio de reclutamiento, la asociación siguió siendo estadísticamente significativa para la supresión viral (aOR 0.38, IC 95% 0.18–0.79; chi-cuadrado = 6.681, df = 1, p = 0.010), aunque no para la participación en la atención medica del VIH. Nuestros hallazgos destacan el impacto de las barreras socioestructurales en la participación en el continuo de atención medica del VIH entre las mujeres transgénero.

Purpose: Genomic testing is routinely utilized across clinical settings and can have significant variant interpretation challenges. The extent of genetic counselor (GC) engagement in variant interpretation in clinical practice is unknown. This study aimed to explore clinical GCs’ variant interpretation practice across specialties, understand outcomes of this practice, and identify resource and educational needs. Methods: An online survey was administered to National Society of Genetic Counselors members providing clinical counseling. Results: Respondents (n=239) represented all major clinical specialties. The majority (68%) reported reviewing evidence documented by the laboratory for most (>60%) variants reported; 45.5% report seeking additional evidence. Prenatal GCs were less likely to independently assess reported evidence. Most respondents (67%) report having reached a different conclusion about a variant’s classification than the testing laboratory, though infrequently. Time was the most commonly reported barrier (72%) to performing variant interpretation, though the majority (97%) indicated that this practice had an important impact on patient care. When presented with three hypothetical scenarios, evidence typically used for variant interpretation was generally applied correctly. Conclusion: This study is the first to document variant interpretation practice broadly across clinical GC specialties. Our results suggest that variant interpretation should be considered a practice-based competency for GCs.

Purpose The ability of a single technology, next-generation sequencing, to provide both sequence and copy number variant (CNV) results has driven the merger of clinical cytogenetics and molecular genetics. Consequently, the distinction between the definition of a sequence variant and a CNV is blurry. As the 2015 American College of Medical Genetics and Genomics/Association for Molecular Pathology (ACMG/AMP) standards and guidelines for interpretation of sequence variants address CNV classification only sparingly, this study focused on adapting ACMG/AMP criteria for single-gene CNV interpretation. Methods CNV-specific modifications of the 2015 ACMG/AMP criteria were developed and their utility was independently tested by three diagnostic laboratories. Each laboratory team interpreted the same 12 single-gene CNVs using three systems: (1) without ACMG/AMP guidance, (2) with ACMG/AMP criteria, and (3) with new modifications. A replication study of 12 different CNVs validated the modified criteria. Results The adapted criteria system presented here showed improved concordance and usability for single-gene CNVs compared with using the ACMG/AMP interpretation guidelines focused on sequence variants. Conclusion These single-gene CNV criteria modifications could be used as a supplement to the ACMG/AMP guidelines for sequence variants, allowing for a streamlined workflow and a step toward a uniform classification system for both sequence and copy number alterations.

Nigeria has the fourth-largest HIV epidemic globally, yet high levels of social stigma inhibit HIV testing among Nigerian youths and young men who have sex with men (MSM).To report pilot data from iCARE Nigeria (Intensive Combination Approach to Roll Back the Epidemic in Nigerian Adolescents), a combination intervention using social media and peer navigation to promote HIV testing and linkage to care among high-risk youths and young men (hereinafter referred to as young men), including predominantly young MSM.This nonrandomized controlled study assessed an organizational and community-level 12-month, preintervention-postintervention pilot trial of a combination intervention designed to increase HIV testing uptake, increase the rate of identified seropositive cases, and improve linkage to care among young men, including MSM, using social media outreach and peer navigation. Data were collected from June 1, 2019, to May 30, 2020. Participants were young men aged 15 to 24 years in the city of Ibadan, Nigeria, and surrounding areas. Frequencies and percentages were examined, and a Fisher exact test was used to evaluate outcomes compared with historical surveillance data. Linkage to care was defined as 2 clinic visits, including HIV confirmation, within 2 months of a positive rapid test result.Four peer navigators conducted social media outreach promoting sexual health and guiding individuals to HIV counseling and rapid testing in clinical, community, or home-based settings.Primary outcomes included the number of young men tested for HIV at university-based iCARE catchment clinics or by iCARE peer navigators in the community, the postintervention HIV seroprevalence of these groups, and linkage to care of participants diagnosed with HIV infection.A total of 339 participants underwent testing for HIV (mean [SD] age, 21.7 [1.9] years), with 283 (83.5%) referred through social media. The main referral sources for social media were WhatsApp (124 [43.8%]), Facebook (101 [35.7%]), and Grindr (57 [20.1%]). Regarding testing location, participants chose home (134 [39.5%]), community-based (202 [59.6%]), or clinic (3 [0.9%]) settings. Eighty-six participants reported no prior HIV testing. Thirty-six participants (10.6%) were confirmed as HIV seropositive; among those, 18 (50.0%) reported negative test results within the past year, and 31 (86.1%) were linked to care. In two 6-month follow-up periods, the intervention increased HIV testing by 42% and 31%, respectively, and seroprevalence increased compared with historical trends with odds ratios of 3.37 (95% CI, 1.43-8.02; P = .002) and 2.74 (95% CI, 1.10-7.11; P = .02), respectively.These findings suggest that use of iCARE Nigeria was associated with increased HIV testing and linkage to care in a high-risk, difficult-to-reach population, making it a promising combination intervention for young MSM.isrctn.org Identifier: ISRCTN94590823.

BackgroundSexually Transmitted Diseases (STDs) are common and costly, impacting approximately one in five people annually. Reddit, the sixth most used internet site in the world, is a user-generated social media discussion platform that may be useful in monitoring discussion about STD symptoms and exposure.ObjectiveThis study sought to define and identify patterns and insights into STD related discussions on Reddit over the course of the COVID-19 pandemic.MethodsWe extracted posts from Reddit from March 2019 through July 2021. We used a machine learning text mining method, Latent Dirichlet Allocation (LDA), to conduct a text analysis to identify the most common topics discussed in the Reddit posts. We then used word clouds, qualitative topic labelling, and spline regression to characterize the content and distribution of topics observed.ResultsOur extraction resulted in 24,311 total posts. LDA Coding showed that with 8 topics for each time period we achieved high coherence values (pre-COVID=0.41, pre-vaccine=0.42; post-vaccine=0.44). While most topic categories remained the same over time, the relative proportion of topics changed and new topics emerged. Spline regression revealed some key terms had variability in the percentage of posts that coincided with COVID-19 pre- and post-periods, while others were uniform across the study periods.ConclusionsOur study’s use of Reddit is a novel way to gain insights into STD symptoms experienced, potential exposures, testing decisions, common questions, and behavior patterns (e.g., during lock down periods). For example, reduction in STD screening may result in observed negative health outcomes due to missed cases, which also impacts onward transmission. As Reddit use is anonymous, users may discuss sensitive topics with greater detail, and more freely than in clinical encounters. Data from anonymous Reddit posts may be leveraged to enhance understanding of the distribution of disease and need for targeted outreach/screening programs. This study demonstrates Reddit has feasibility and utility to enhance understanding of sexual behaviors, STD experiences, and needed health engagement with the public.

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Due to the gap between cisgender women eligible for and those accessing pre-exposure prophylaxis (PrEP) for HIV prevention, it is critical to understand knowledge of and attitudes toward PrEP among HIV-vulnerable women. PrEP utilization is particularly low among African American women in the USA. Family planning clinics provide key access points to reach HIV-vulnerable African American women as well as to translate research findings into clinical practice. Our study aimed to (1) describe the awareness of and interest in PrEP among African American cisgender women attending a family planning clinic and (2) document the barriers and facilitators to PrEP uptake among these women. A cross-sectional survey was conducted with sexually active African American women of reproductive age attending a family planning clinic. Descriptive statistics were used to characterize the sample, and bivariate analysis was used to detect difference between categorical and outcome variables. In our survey (N = 109), over 80% of participants listed not knowing PrEP was available as the primary reason for not currently taking PrEP. Seventy percent reported they would probably or definitely like to take PrEP - demonstrating that barriers to uptake might stem from knowledge deficits rather than attitudes toward prevention. Study findings have the potential to inform strategies to increase awareness of PrEP as an HIV prevention option as well as to equip women with greater self-efficacy to access PrEP in family planning settings.

The TransLife Care (TLC) project was developed to address the structural factors that act as barriers to HIV care among transgender women of color. The purpose of this study was to evaluate the feasibility and initial efficacy of the TLC project; primary HIV care outcomes included linkage to HIV care, engagement in care, retention in care, use of ART and viral suppression among N = 120 participants. In multivariable analysis, receipt of the intervention (versus none), was associated with any HIV care visit (aOR 2.05; 95% CI 1.25–3.37; p = 0.005), more total HIV care visits (aRR 1.45; 95% CI 1.09–1.94; p = 0.011), being retained in care (aOR 1.58; 95% CI 1.03–2.44; p = 0.038), and having a viral load test done (aOR 1.95; 95% CI 1.23–3.09; p = 0.004). We conclude that a structural intervention, designed and delivered by the focus population, that directly addresses social determinants, is feasible and efficacious to promote HIV care engagement among transgender women of color.

To examine the impact of a targeted exome approach for the molecular diagnosis of patients nationwide with a wide range of ataxia-related phenotypes. One hundred and seventy patients with ataxia of unknown etiology referred from clinics throughout the United States and Canada were studied using a targeted exome approach. Patients ranged in age from 2 to 88 years. Analysis was focused on 441 curated genes associated with ataxia and ataxia-like conditions. Pathogenic and suspected diagnostic variants were identified in 88 of the 170 patients, providing a positive molecular diagnostic rate of 52%. Forty-six different genes were implicated, with the six most commonly mutated genes being SPG7, SYNE1, ADCK3, CACNA1A, ATP1A3, and SPTBN2, which accounted for >40% of the positive cases. In many cases a diagnosis was provided for conditions that were not suspected and resulted in the broadening of the clinical spectrum of several conditions. Exome sequencing with targeted analysis provides a high-yield approach for the genetic diagnosis of ataxia-related conditions. This is the largest targeted exome study performed to date in patients with ataxia and ataxia-like conditions and represents patients with a wide range of ataxia phenotypes typically encountered in neurology and genetics clinics.

This manuscript documents the development of an innovative individual-level peer navigation intervention “Salud y Orgullo Mexicano” (SOM) designed to increase linkage and retention to HIV care for Mexican men who have sex with men (MSM) in Chicago, Illinois. The intervention was developed via a modified intervention mapping process. Elements of two existing interventions were combined and refined with input from the Mexican MSM community, including informant interviews, an expert advisory board, and a design team. A manualized transnational intervention was developed via intervention mapping. A peer health navigation intervention “SOM” was created using intervention mapping and input from the focus community. Next steps include implementing and evaluating the intervention to determine acceptability and efficacy.

Background Young transgender women (YTW) are a key population for HIV-related risk reduction, yet very few interventions have been developed to meet their needs. Mobile health interventions with the potential for both efficacy and wide reach are a promising strategy to reduce HIV risk among YTW. Objective This study aims to adapt an efficacious group-based intervention to a mobile app, Project LifeSkills, to reduce HIV risk among YTW, and to test its acceptability and usability. Methods The group-based intervention was adapted to a mobile app, LifeSkills Mobile, with input from an expert advisory group and feedback from YTW collected during user-centered design sessions. A beta version of the app was then tested in a usability evaluation using a think-aloud protocol with debriefing interviews, recordings of screen activity, and assessments of usability via the Post-Study System Usability Questionnaire (PSSUQ) and the Health Information Technology Usability Evaluation Scale (Health-ITUES). Results YTW (n=8; age: mean 24 years, SD 3 years; racial or ethnic minority: 7/8, 88%) provided feedback on the app prototype in design sessions and then tested a beta version of the app in a usability trial (n=10; age: mean 24 years, SD 3 years; racial or ethnic minority: 8/10, 80%). Both usability ratings (Health-ITUES: mean 4.59, SD 0.86; scale range: 1-5) and ratings for satisfaction and accessibility (PSSUQ: mean 4.64, SD 0.90; scale range 1-5) were in the good to excellent range. No functional bugs were identified, and all mobile activities were deployed as expected. Participant feedback from the usability interviews indicated very good salience of the intervention content among the focal population. Participants’ suggestions to further increase app engagement included adding animation, adding audio, and reducing the amount text. Conclusions We conclude that the LifeSkills Mobile app is a highly usable and engaging mobile app for HIV prevention among YTW.

PurposeHIV in the United States disproportionately affects young Black women. Pre-exposure prophylaxis (PrEP) is an effective HIV prevention option that has the potential to reduce HIV incidence among HIV-vulnerable populations. However, data regarding women's awareness, interest in starting, and feelings of acceptability or stigma about PrEP remains limited, particularly among adolescent and young Black women.Materials and methodsA cross-sectional survey was conducted with 100 sexually active young Black women ages 13–24 years attending women's health clinics in Chicago, IL. Descriptive statistics were used to characterize the sample and determine more about what the PrEP needs and barriers are in this community. Associations were modeled using logistic regression and 95% confidence intervals for both bivariate and multivariable models.ResultsIn our survey (N = 100), half of study participants (50%) expressed interest in starting PrEP in the next three months and a majority (80%) of young women were confident they could obtain PrEP. Pregnant young women were significantly more interested in starting PrEP than non-pregnant women [OR 2.3 95% CI (1.0, 5.4)], p = 0.05), however, this association did not remain significant in adjusted models.ConclusionsThis study provides a more complete understanding of awareness, interest in, and acceptability of PrEP among adolescent and young Black women attending women's health clinics. Findings indicate sustained interest in starting PrEP, reduced stigma, and increased awareness of PrEP among young Black women. These findings suggest that integrating PrEP into women's health clinics is a promising strategy to increase awareness and utilization of PrEP and decrease HIV transmission among youth at highest risk.

Background Nigeria has the second highest number of people living with HIV (PLWH) globally, and evidence-based approaches are needed to achieve national goals to identify, treat, and reduce new infections. Youth between the ages of 15–24, including young men who have sex with men (YMSM), are disproportionately impacted by the Nigerian HIV epidemic. The purpose of this study was to inform adaptation of evidence-based peer navigation and mHealth approaches (social media outreach to promote HIV testing; short messaging service text message reminders to promote HIV treatment engagement) to the local context within iCARE Nigeria, a multi-phase study designed to investigate combination interventions to promote HIV testing and care engagement among youth in Nigeria. Methods To elicit expert and community perspectives, a local group of advisors from academia, community, and governmental sectors provided feedback on intervention adaptation, which then informed a series of focus groups with stakeholders in Ibadan, Nigeria. Focus group data were collected over a period of three days in December of 2018. Participants in focus groups included YMSM and HIV-positive youth in care ages 16–24, and HIV service providers from local AIDS service organizations (ASO). Groups were stratified by HIV serostatus, gender, and stakeholder type. Focus group sessions were conducted using a semi-structured interview guide, audio-recorded, transcribed verbatim, and analyzed using a content analysis approach. Results Local experts recommended intervention adaptations specific to the status of peer navigators as volunteers, peer characteristics (slightly older age, high maturity level, HIV/YMSM status), and intervention characteristics and resources (low navigator to peer ratio; flexible matching by demographic and social characteristics; social media platforms and content). Five focus group discussions with stakeholders, including 27 participants were conducted to elicit feedback on these and other potential adaptations. Youth participants (n = 21) were mean age 20 years (range = 16–24); 76% HIV-positive, 76% men and 48% MSM. Service providers (n = 6) represented both HIV prevention and care services. Participants across stratified subgroups reported largely positive perceptions and high perceived acceptability of both mHealth and peer navigation strategies, and echoed the recommendations of the advisory group for volunteer-based navigators to promote altruism, with a low navigator-peer ratio (1:5). Participants emphasized the need to incorporate minimal mobile data use strategies and popular social media platforms among YMSM (e.g., Facebook, Grindr) for widespread access and reach of the interventions. Conclusions In Ibadan, Nigeria, stakeholders support the adaptation of combined mHealth and peer navigation strategies to promote HIV testing and care engagement among high-risk youth. Recommended adaptations for the local context reflect concerns about the feasibility and sustainability of the intervention and are expected to improve accessibility and acceptability.

BACKGROUND Consistent with the global trend, youth with HIV (YWH) in Nigeria have high rates of viral nonsuppression. Hence, novel interventions are needed. SETTING Infectious Diseases Institute, College of Medicine, University of Ibadan, Nigeria. METHODS In a single-arm trial, participants aged 15-24 years received 48 weeks of a combination intervention, comprising daily 2-way text message medication reminders plus peer navigation. The primary outcome measure was viral suppression less than 200 copies/mL. The secondary outcome measures included self-reported adherence on a visual analog scale and medication possession ratio, each dichotomized as ≥90% (good) or

Background Although black cisgender women in Chicago continue to disproportionally account for new HIV diagnoses, few are on pre-exposure prophylaxis (PrEP). We used concurrent mixed-methods to understand women's PrEP knowledge, attitudes, experience, and preferences in Chicago. Setting and methods We surveyed 370 HIV(-) cisgender women visiting a sexually transmitted infection clinic (n = 120) or emergency department (n = 250). Two focus groups were conducted with PrEP-naive women, and interviews were conducted with 7 PrEP-experienced women. Quantitative data were analyzed using descriptive statistics and multivariable logistic regression, and qualitative data using thematic analysis. Results Majority of women identified as black (83.0%) and had a regular source of health care (70.0%). In the past 6 months, 84.1% had vaginal or anal sex, most with inconsistent condom use (94.2%). Only 30.3% had heard of PrEP, but once explained, one-quarter considered starting PrEP, with protecting health (76.4%) and reducing HIV worry (58.1%) the most common reasons. Factors associated with considering PrEP included being Latina [adjusted odds ratio (aOR): 3.30, 95% confidence interval (CI): (1.21 to 8.99)], recent sexually transmitted infection [aOR: 2.39, 95% CI: (1.25 to 4.59)], and higher belief in PrEP effectiveness [aOR: 1.85, 95% CI: (1.22 to 2.82)]. Most (81.1%) had concerns about taking PrEP with side effects a common concern. Qualitative themes aligned with survey results, revealing a disconnection from current PrEP marketing, need for community-level PrEP education/outreach, and importance of provider trust. Lessons learned Despite significant PrEP implementation work in Chicago, less than one-third of women in our study had heard of PrEP. Once informed, PrEP attitudes and interest were positive. Translating these results into interventions reflecting women's preferences and barriers is critical to increase PrEP uptake by cisgender women in Chicago and elsewhere.

Patient navigation is a primary element in linkage to HIV pre-exposure prophylaxis (PrEP) care and linkage to or re-engagement in HIV care, depending on the HIV status of the individual. However, there is a dearth of literature describing navigation services in these areas. In the context of Chicago Project PrIDE, this project conducted process and implementation evaluations with eight agencies leading demonstration projects to address these gaps. The evaluation team conducted semi-structured, individual interviews with agency staff (N = 20) assessing navigation implementation and fit, as well as project successes and challenges. Additionally, agency staff collected patient surveys (N = 300) assessing services provided, service quality, and satisfaction. The interview transcripts were coded and analyzed thematically and descriptive analyses were performed on the survey data. Analyses indicated that screening for social determinants of health, providing healthcare engagement guidance, and providing service referrals were frequently cited navigation activities. Most staff members indicated that navigation fits well within their agencies, and that limited staff and clinic capacity were often barriers to navigation. Patient navigation to support engagement in HIV prevention and care services is critical due to the extensive support provided by navigators to address social determinants of health impacting HIV disparity populations.

BACKGROUND Young transgender women (YTW) are a key population for HIV-related risk reduction, yet very few interventions have been developed to meet their needs. Mobile health interventions with the potential for both efficacy and wide reach are a promising strategy to reduce HIV risk among YTW. OBJECTIVE This study aims to adapt an efficacious group-based intervention to a mobile app, Project LifeSkills, to reduce HIV risk among YTW, and to test its acceptability and usability. METHODS The group-based intervention was adapted to a mobile app, LifeSkills Mobile, with input from an expert advisory group and feedback from YTW collected during user-centered design sessions. A beta version of the app was then tested in a usability evaluation using a think-aloud protocol with debriefing interviews, recordings of screen activity, and assessments of usability via the Post-Study System Usability Questionnaire (PSSUQ) and the Health Information Technology Usability Evaluation Scale (Health-ITUES). RESULTS YTW (n=8; age: mean 24 years, SD 3 years; racial or ethnic minority: 7/8, 88%) provided feedback on the app prototype in design sessions and then tested a beta version of the app in a usability trial (n=10; age: mean 24 years, SD 3 years; racial or ethnic minority: 8/10, 80%). Both usability ratings (Health-ITUES: mean 4.59, SD 0.86; scale range: 1-5) and ratings for satisfaction and accessibility (PSSUQ: mean 4.64, SD 0.90; scale range 1-5) were in the good to excellent range. No functional bugs were identified, and all mobile activities were deployed as expected. Participant feedback from the usability interviews indicated very good salience of the intervention content among the focal population. Participants’ suggestions to further increase app engagement included adding animation, adding audio, and reducing the amount text. CONCLUSIONS We conclude that the LifeSkills Mobile app is a highly usable and engaging mobile app for HIV prevention among YTW.

The PrEP (pre-exposure prophylaxis) Implementation, Data to Care and Evaluation (PrIDE) demonstration project funded 12 health departments (HD) (2016–2019) to scale up PrEP among sexual minorities at risk for HIV. Each health department (HD) conducted an evaluation of at least one local strategy, and, to maximize crossvalidation, an adapted cluster evaluation approach was employed. As a result, five HDs with similar evaluation questions regarding PrEP navigation were identified. Overall, PrEP navigation fit in well with HD clinics and community-based organizations. A hybrid model of patient, peer, and systems navigation linking clients to PrEP and social services was commonly used. Although there were no differences by setting regarding linking clients to PrEP providers, one HD demonstrated that having all PrEP services in the same location contributed the most to PrEP uptake. Navigator skill for case management and rapport building facilitated navigation, whereas staff turnover and lack of client health insurance were challenges. While one HD in a non-Medicaid expansion state was affected by health insurance issues the most, another HD demonstrated that providing payment assistance increased client PrEP use. The findings pinpoint PrEP navigation hybrid modality and having health insurance as promising strategies to increase PrEP uptake among priority groups.

As the need for rigorous evidence of program efficacy increases, integrating evaluation activities into program implementation is becoming crucial. As a result, external evaluators are placing increased focus on evaluation capacity building as a practice. However, empirical evidence of how to foster evaluation capacity in different contexts remains limited. This study presents findings from an evaluation capacity survey conducted within a multisite Empowerment Evaluation initiative, in which an external evaluator worked with 20 project teams at diverse community agencies implementing HIV prevention projects. Survey results revealed representatives from project teams (n = 33) reported significantly higher overall evaluation capacity after engaging with the external evaluator on planning and implementing their evaluation. Improvements differed across organization type, intervention type, staff position, and reported engagement on various activities throughout the course of the evaluation. Results indicated empowerment evaluation and other stakeholder-focused evaluation approaches are broadly applicable when evaluation capacity building is a desired outcome, particularly when able to engage project staff in the planning of the evaluation and in delivering technical assistance services. Accordingly, efforts should be made by program funders, staff, and evaluators to encourage active engagement starting in the early stages of program and evaluation planning.

Invasive Meningococcal Disease is a deadly, but preventable disease, with community outbreaks occurring at rate of 9.5 per year. Serogroup C Invasive Meningococcal Disease (IMD) community outbreaks in men who have sex with men (MSM) have been reported with greater frequency in large urban areas since 2010. An effective vaccine exists that can temper and control outbreaks, and is recommended for MSM in outbreak settings; however very little is known about the perceptions, barriers and facilitators to IMD vaccine uptake among MSM. Optimizing awareness and vaccine uptake for MSM is a high priority to reduce and control IMD outbreaks. To that end, we conducted focus groups with MSM during an active IMD outbreak to inform development of a tailored intervention strategy. Participants discussed facilitators (e.g., logistics, relationships, health literacy) and barriers (e.g., fear of disclosure, medical distrust) to vaccination, as well as ideas for intervention strategies (e.g., incentives, use of internet outreach). Keywords: Men who have sex with men, Meningitis, Vaccination, Vaccine promotion, Outbreak, Qualitative, Focus group

Serogroup C invasive meningococcal disease (IMD) outbreaks in men who have sex with men (MSM) have been occurring with greater frequency in urban areas across the United States. An effective vaccine for IMD is available and is recommended for MSM in outbreak settings. Particular subgroups of MSM have been disproportionately represented in outbreaks, specifically young, Black, and HIV-positive MSM. As little is known about the knowledge, awareness, and vaccination status of young MSM, we sought to describe this and explore racial/ethnic differences. Data were collected from an established cohort study—RADAR—of 16- to 29-year-old MSM recruited through previous cohort studies and/or by being a partner or peer of a current study member. A total of 486 young MSM (YMSM) responded to 13 IMD-related questions. Approximately half of the sample correctly identified how IMD is spread and 58.6% accurately responded that vaccination was the best prevention method; however, more than 60% of participants felt they were at no risk of getting meningitis and only 49% self-reported vaccination. Additionally, White YMSM were significantly more likely to be vaccinated and to have accurate knowledge and risk perception of IMD compared with Black YMSM. Findings have important implications for disease control, outbreak management, and intervention development.

Millions of Americans have been infected with COVID-19 and communities of color have been disproportionately burdened. We investigated the relationship between demographic characteristics and COVID-19 positivity, and comorbidities and severe COVID-19 illness (use of mechanical ventilation and length of stay) within a racial/ethnic minority population. Patients tested for COVID-19 between March 2020 and January 2021 (N = 14171) were 49.9% (n = 7072) female; 50.1% (n = 7104) non-Hispanic Black; 33.2% (n = 4698) Hispanic; and 23.6% (n = 3348) aged 65+. Overall COVID-19 positivity was 16.1% (n = 2286). Compared to females, males were 1.1 times more likely to test positive (p = 0.014). Compared to non-Hispanic Whites, non-Hispanic Black and Hispanic persons were 1.4 (p = 0.003) and 2.4 (p

Cornelia de Lange syndrome (CdLS) is a rare neurodevelopmental syndrome for which mutations in five causative genes that encode (SMC1A, SMC3, RAD21) or regulate (NIPBL, HDAC8) the cohesin complex, account for ~70% of cases. Herein we report on four female Subjects who were found to carry novel intragenic deletions in HDAC8. In one case, the deletion was found in mosaic state and it was determined to be present in ~38% of blood lymphocytes and in nearly all cells of a buccal sample. All deletions, for which parental blood samples were available, were shown to have arisen de novo. X-chromosome inactivation studies demonstrated marked skewing, suggesting strong selection against the mutated HDAC8 allele. Based on an investigation of the deletion breakpoints, we hypothesize that microhomology-mediated replicative mechanisms may be implicated in the formation of some of these rearrangements. This study broadens the mutational spectrum of HDAC8, provides the first description of a causative HDAC8 somatic mutation and increases the knowledge on possible mutational mechanisms underlying copy number variations in HDAC8. Moreover our findings highlight the clinical utility of considering copy number analysis in HDAC8 as well as the analysis on DNA from more than one tissue as an indispensable part of the routine molecular diagnosis of individuals with CdLS or CdLS-overlapping features.

Chronically homeless individuals often have extensive health, mental health and psychosocial needs that pose barriers to obtaining and maintain supportive housing. This study aims to qualitatively explore supportive housing providers' experiences and challenges with housing chronically homeless individuals and examine opportunities to improve supportive housing systems of care. In 2014, we conducted qualitative in-depth interviews with 65 programme administrators and case managers of supportive housing programmes in Chicago, IL. Data were analysed using an inductive thematic content analysis. Analysis revealed four themes that capture the primary challenges faced by housing providers: housing priorities, funding cuts, co-ordinated entry and permanency of housing. Housing for the chronically homeless has been prioritised, yet service providers are being expected to provide the necessary services to meet the needs of this population without commensurate funding increases or agency capacity. Additionally, case managers and administrators discussed the tension over housing tenure and the permanency of supportive housing. Findings provide qualitative insight into the challenges providers face implementing supportive housing for chronically homeless individuals.