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Adolescents and young adults (AYA) with sickle cell disease (SCD) experience high rates of acute care utilization and increased morbidity. At this high-risk time, they also face the need to transition from pediatric to adult services, which, if poorly coordinated, adds to heightened morbidity and acute care utilization. The study objective was to characterize the feasibility, acceptability, and short-term efficacy of a protocolized transition navigator (TN) intervention in AYA with SCD.We developed a protocolized TN intervention that used ecological assessment and motivational interviewing to assess transition readiness, identify goals, and remove barriers to transition, and to provide disease and pain management education and skills to AYAs with SCD.Ninety-three percent (56/60) of enrolled individuals completed the intervention. Participation in the TN program was associated with significant improvement in mean transition readiness scores (3.58-4.15, P.0001), disease knowledge scale (8.91-10.13, P.0001), Adolescent Medication Barriers Scale (40.05-35.39, P = .003) and confidence in both disease (22.5-23.96, P = .048) and pain management (25.07-26.61, P = .003) for youth with SCD.The TN intervention was acceptable to youth with SCD, feasible to implement at an urban academic medical center, and addressed barriers to transition identified by the youth. Longer-term assessment is needed to determine if the TN intervention improved successful transfer to and retention in adult care.

Objective Genomics is increasingly used for diagnostic testing in children. This study describes the expectations of parents whose child received genomic testing and whether or not they were met. Methods A diverse stratified, purposive sample of parents of 22 children in New York City was interviewed using a semi-structured guide. Genomic test results were positive, negative, or uncertain. Results Parents expressed their expectations in narrative and numeric fashion. Parents expected that their child’s test would have a direct effect on their child’s diagnosis. Some believed that results would be definitive, while others recognized testing limitations. Expectations reflected parents’ hope to find a diagnosis and led to disappointment when results were uninformative or did not impact clinical management. Conclusion Results suggest pre-test genetic counseling emphasize the low likelihood of actionable results; however, parents’ expectations of genomics’ diagnostic capabilities are strongly rooted in their need to end the diagnostic odyssey and may be difficult to manage. Practice Implications Parents’ hope for a resolution and effective treatment for their child is a powerful context in which genetic counseling is heard. Clinicians who provide genomic testing should continue to acknowledge parents’ preconceptions. Additional research in other settings will help understand how to best address and manage parent expectations of genomic medicine.

Due to concerns of infection and medication disruptions during the COVID-19 pandemic, rheumatology patients at the pandemic epicenter were at risk of distress and poor health outcomes. We sought to investigate medication disruptions and COVID-19-related distress in the Bronx, New York shortly after the peak of the pandemic and determine whether factors related to the pandemic were associated with flares, disease activity, and overall health.In the month following the epidemic peak, we surveyed adult patients and parents of pediatric patients from rheumatology clinics in the Bronx regarding medication access, medication interruptions, COVID-19 infection, COVID-19 hospitalization, and COVID-19-related distress. We examined which factors were associated with patient-reported flares, disease activity, and overall health scores in regression models accounting for sociodemographic characteristics and rheumatologic disease type.Of the 1,692 patients and parents of pediatric patients that were contacted, 361 (21%) responded; 16% reported medication access difficulty, 14% reported medication interruptions, and 41% reported experiencing flare(s). In a multivariable logistic regression model, medication access difficulty was associated with increased odds of flare (odds ratio [OR] 4.0 [95% confidence interval (95% CI) 1.5, 10.4]; P = 0.005), as was high COVID-19-related distress (OR 2.4 [95% CI 1.2, 4.6]; P = 0.01). In multivariable linear regression models, medication access difficulty and high COVID-19-related distress were associated with worse disease activity scores, and high COVID-19-related distress was associated with worse health scores.Medication access difficulties and flares were common among rheumatology patients from the Bronx, New York in the month following the peak of the epidemic. Medication access difficulty and COVID-19-related distress were highly associated with flare and disease activity. COVID-19-related distress was associated with overall health scores.

PurposeUse of genomic sequencing is increasing at a pace that requires technological solutions to effectively meet the needs of a growing patient population. We developed GUÍA, a web-based application, to enhance the delivery of genomic results and related clinical information to patients and families.MethodsGUÍA development occurred in 5 phases: formative research, content development, user interface design, stakeholder/community member input, and web application development. Development was informed by qualitative research involving parents (N=22) whose children underwent genomic testing. Participants enrolled in the NYCKidSeq pilot study (N=18) completed structured feedback interviews post-result disclosure using GUÍA. Genetic specialists, researchers, patients, and community stakeholders provided their perspectives on GUÍA’s design to ensure technical, cultural, and literacy appropriateness.ResultsNYCKidSeq participants responded positively to the use of GUÍA to deliver their children’s results. All participants (N=10) with previous experience with genetic testing felt GUÍA improved result disclosure, and 17 (94%) participants said the content was clear.ConclusionsGUÍA communicates complex genomic information in an understandable and personalized manner. Initial piloting demonstrated GUÍA’s utility for families enrolled NYCKidSeq pilot study. Findings from the NYCKidSeq clinical trial will provide insight into GUÍA’s effectiveness in communicating results among diverse, multilingual populations.

Despite calls for evidence-based HIV/STI prevention programs for youth aged 12 to 14 transitioning to adolescence, few effective programs exist. In a two-group intent-to-treat randomized trial in the Bronx, NY, 397 participants were randomly assigned to Project Prepared or an attention control, TEEN. Participants completed surveys at baseline, 6 months, and 12 months. Prepared had two components, an 11-session program and a 3-week internship. Content covered sexual risk behavior, social cognitions, gender norms, relationships, and resilience. TEEN built communication skills and had the same intensity and structure as Prepared but no sexual content. In both, boys and girls were trained together in mixed groups of ~ 11 teens. Primary outcomes were HIV knowledge, self-efficacy, condom outcome expectancy, and behavioral intentions. Secondary outcomes were relationship expectations and endorsement of risky gender norms. Generalized estimating equation analyses showed youth randomized to Prepared had significant improvements compared to TEEN at T2 in HIV knowledge, sexual self-efficacy, and outcome expectancy for condom use. At T3, there were significant differences favoring Prepared in outcome expectancy for condom use, sexual self-efficacy, and intention for partner communication about HIV/AIDS or STIs. Analyses by gender showed program effects in both boys (intention to talk to a partner about condom use, abstinence self-efficacy, sexual self-efficacy, and condom outcome expectancy) and girls (gender norms, and abstinence outcome expectancy). Prepared effectively reduced risk in young adolescents. ClinicalTrials.gov ID: NCT01880450, Protocol ID: 2008-551

Using a tool integrated into the electronic health record, we determined prevalence of 10 social needs among 377 people with HIV (PWH) and 27,833 patients without HIV receiving care in the Montefiore Health System. PWH (median age 53) were 55% women, 41% Black, 44% Hispanic. 33% of PWH reported at least one social need vs. 18% among patients without HIV, with healthcare transportation and housing needs significantly higher in PWH in adjusted analyses. PWH reporting transportation needs were 27% less likely to be virologically suppressed (

Using a tool integrated into the electronic health record, we determined prevalence of 10 social needs among 377 people with HIV (PWH) and 27,833 patients without HIV receiving care in the Montefiore Health System. PWH (median age 53) were 55% women, 41% Black, 44% Hispanic. 33% of PWH reported at least one social need vs. 18% among patients without HIV, with healthcare transportation and housing needs significantly higher among PWH in adjusted analyses. PWH reporting transportation needs were 27% less likely to be virologically suppressed ( 200 copies/mL, adjusted prevalence ratio 0.73, 95% CI 0.55-0.96) compared with PWH without transportation needs.Por medio del uso de encuestas integradas en el registro electrónico de salud, determinamos la prevalencia de 10 necesidades sociales entre 377 personas con VIH (PCV) y 27 833 pacientes sin VIH que reciben atención en el Montefiore Health System. PCV (edad mediana de 53 años) fueron 55% mujeres, 41% negras, 44% hispanas. 33% de PCV reportó al menos una necesidad social vs. 18% de los pacientes sin VIH, siendo las necesidades de transporte a cuidados de salud y de vivienda significativamente mayores en PCV en análisis multivariable ajustado. PCV con necesidades de transportación fueron 27% menos probables de tener supresión viral ( 200 copias/ml, razón de prevalencias ajustada 0.73, IC 95% 0.55–0.96) comparada con PCV sin necesidades de transportación.

Rationale & Objective Group-based care provides an opportunity to increase patient access to providers without increasing physician time and is effective in the management of chronic diseases in the general population. This model of care has not been investigated in chronic kidney disease (CKD). Study Design Randomized controlled trial in adults (n = 50); observational study in adolescents (n = 10). Setting & Participants Adults and adolescents with CKD and hypertension in the Bronx, NY. Intervention Group-based care (monthly sessions over 6 months) versus usual care in adults. All adolescents received group-based care and were analyzed separately. Outcomes Participant attendance and satisfaction with group-based care were used to evaluate intervention feasibility. The primary clinical outcome was change in mean 24-hour ambulatory blood pressure. Secondary outcomes included physical activity, medication adherence, quality of life, and sodium intake as assessed by 24-hour urinary sodium excretion and food frequency questionnaires. Results Among adults randomly assigned to group-based care, attendance was high (77% of participants attended ≥3 sessions) and most reported higher satisfaction. Mean 24-hour ambulatory systolic blood pressure decreased by −4.2 (95% CI, −13.3 to 5.8) mm Hg in group-based care patients compared with usual care at 6 months but this was not statistically significant. Similarly, we did not detect significant differences in health-related behaviors (such as medication adherence, sodium intake, and physical activity) or quality-of-life measures between the 2 groups. Among the adolescents, attendance was very poor; self-reported satisfaction, although high, did not change from baseline compared with the 6-month follow-up. Limitations Small study size, missing data. Conclusions Group-based care is feasible and acceptable among adults with hypertension and CKD. However, a larger trial is needed to determine the effect on blood pressure and health-related behaviors. Patient participation may limit the effectiveness of group-based care models in adolescents. Funding National Institutes of Health R34 DK102174. Trial registration https://clinicaltrials.gov/show/NCT02467894., Graphical Abstract

This ethnography explored the organizational culture of a busy urban pediatric emergency department (ED) in the United States. EDs uniquely combine extreme patient acuity, high census, a high-stress unpredictable environment, and fast-paced complex communication. We found that tribalism characterized the organizational culture and was exacerbated by resource scarcity, changing leadership, and high patient volume. Tribalism affected work climate and job satisfaction but is entrenched and difficult to change. We examine the historical, social, and institutional factors that contributed to tribalism and the ways in which tribalism characterized how providers and staff perceived and recreated interprofessional dynamics. This study contributes to existing work on tribalism in health care by looking at factors that impact perceptions of “us vs. them” and ways tribalism was manifested in the day-to-day practice of team-based care.

ObjectiveThe objective of this study was to understand how women perceive the role of their Obstetrician and Gynecologist (OBGYN) in screening for and providing preexposure prophylaxis (PrEP) for HIV prevention.MethodsWe recruited women ages 18–45 years receiving obstetric or gynecological care at an academic medical center in the Bronx, NY. Thirty participants were enrolled: 10 seeking care for family planning, 10 seeking prenatal care, and 10 seeking care for a sexually transmitted infection. We screened participants for HIV acquisition risk using a PrEP screening tool. We conducted face-to-face, semi-structured interviews, which were audio-recorded, transcribed, and entered into Dedoose for analysis of themes using a grounded theory approach.ResultsSixty percent of the participants were Latinx and 33% African American. Seventy percent had one or more risk factors for HIV acquisition based on the PrEP screening tool, indicating they would benefit from a PrEP discussion. Three main themes emerged from the analysis of interview data. Participants viewed OBGYNs as experts in sexual and reproductive healthcare and believed they were experts in PrEP. Participants were concerned about “PrEP stigma”, being judged by their clinicians as being sexually promiscuous if they expressed a need for PrEP. Lastly, when participants trusted their OBGYN, that trust became a facilitator for women to consider PrEP and offset stigma as a barrier to identifying patients who are candidates for PrEP.ConclusionWomen established in care with an OBGYN are enthusiastic about having access to PrEP services incorporated into their sexual and reproductive healthcare. A universal approach to HIV prevention would avert stigma surrounding HIV care and prevention.

Although 21% of new human immunodeficiency virus (HIV) diagnoses in the United States are in youth aged 13–24 years, adolescent awareness and uptake of the HIV prevention medication pre-exposure prophylaxis (PrEP) are low. This study explores the attitudes and challenges that adolescents face while taking PrEP. Thirty interviews were conducted with Black and Latine (we use the gender-inclusive term Latine rather than Latinx for more appropriate Spanish pronunciation) students aged 15–17 who received care at school-based health centers (SBHCs) in the Bronx, NY. Transcripts were coded inductively and deductively using thematic analysis. Most participants were unaware of PrEP, but nearly all were enthusiastic when informed about it; a majority denied that they would feel any stigma when taking PrEP. Despite this high receptivity, multiple barriers were identified, particularly confidentiality from parents, low perceived need of PrEP and concerns about daily adherence and side effects. Adolescents overall were enthusiastic about the availability of PrEP and felt it empowered them to have control over their health. SBHCs were considered trusted sources of confidential, accessible care, and we believe that they can be uniquely positioned to mitigate barriers to PrEP distribution in the future.

Increasingly, genomics is informing clinical practice, but challenges remain for medical professionals lacking genetics expertise, and in access to and clinical utility of genomic testing for minority and underrepresented populations. The latter is a particularly pernicious problem due to the historical lack of inclusion of racially and ethnically diverse populations in genomic research and genomic medicine. A further challenge is the rapidly changing landscape of genetic tests and considerations of cost, interpretation, and diagnostic yield for emerging modalities like whole-genome sequencing.The NYCKidSeq project is a randomized controlled trial recruiting 1130 children and young adults predominantly from Harlem and the Bronx with suspected genetic disorders in three disease categories: neurologic, cardiovascular, and immunologic. Two clinical genetic tests will be performed for each participant, either proband, duo, or trio whole-genome sequencing (depending on sample availability) and proband targeted gene panels. Clinical utility, cost, and diagnostic yield of both testing modalities will be assessed. This study will evaluate the use of a novel, digital platform (GUÍA) to digitize the return of genomic results experience and improve participant understanding for English- and Spanish-speaking families. Surveys will collect data at three study visits: baseline (0 months), result disclosure visit (ROR1, + 3 months), and follow-up visit (ROR2, + 9 months). Outcomes will assess parental understanding of and attitudes toward receiving genomic results for their child and behavioral, psychological, and social impact of results. We will also conduct a pilot study to assess a digital tool called GenomeDiver designed to enhance communication between clinicians and genetic testing labs. We will evaluate GenomeDiver's ability to increase the diagnostic yield compared to standard practices, improve clinician's ability to perform targeted reverse phenotyping, and increase the efficiency of genetic testing lab personnel.The NYCKidSeq project will contribute to the innovations and best practices in communicating genomic test results to diverse populations. This work will inform strategies for implementing genomic medicine in health systems serving diverse populations using methods that are clinically useful, technologically savvy, culturally sensitive, and ethically sound.ClinicalTrials.gov NCT03738098 . Registered on November 13, 2018 Trial Sponsor: Icahn School of Medicine at Mount Sinai Contact Name: Eimear Kenny, PhD (Principal Investigator) Address: Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Pl., Box 1003, New York, NY 10029 Email: eimear.kenny@mssm.edu.

Background Adolescents and young adults (AYA) with Sickle Cell Disease (SCD) experience especially high rates of acute care utilization and increased morbidity, due in part to disease exacerbation and in part to the developmental challenges of adolescence. It is at this very high-risk time that they also face the need to transition their care to adult services, further adding to the heightened morbidity and acute care utilization, if poorly coordinated. Previous research supports the effectiveness of patient navigators to assist those with complex health conditions and healthcare needs, and has also identified the utility of a transition navigator for youth with special health care needs. Methods We developed a protocolized transition navigator intervention that used ecological assessment and motivational interviewing to assess transition readiness, identify goals, and remove barriers to transition, as well as to provide disease and pain management education and skills to AYAs with SCD. We assessed feasibility, acceptability and short-term efficacy in n=60 youth aged 17-20 with SCD. Findings Participation in the TN program was associated with significant improvement in transition readiness, disease knowledge, and confidence in disease and pain management for youth with SCD Conclusion The TN intervention was acceptable to youth with SCD and feasible to implement at an urban academic medical center and addressed most of the barriers to transition identified by the youth. Longer-term assessment is needed to determine if the transition navigator intervention improved successful transfer to and retention in adult care and reduced morbidity and ED reliance over time.

Background Increasingly, genomics is informing clinical practice, but challenges remain for medical professionals lacking genetics expertise, and in access to and clinical utility of genomic testing for minority and underrepresented populations. The latter is a particularly pernicious problem due to the historical lack of inclusion of racially and ethnically diverse populations in genomic research and genomic medicine. A further challenge is the rapidly changing landscape of genetic tests and considerations of cost, interpretation, and diagnostic yield for emerging modalities like whole-genome sequencing. Methods The NYCKidSeq project is a randomized controlled trial recruiting 1130 children and young adults predominantly from Harlem and the Bronx with suspected genetic disorders in three disease categories: neurologic, cardiovascular, and immunologic. Two clinical genetic tests will be performed for each participant, either proband, duo, or trio whole-genome sequencing (depending on sample availability) and proband targeted gene panels. Clinical utility, cost, and diagnostic yield of both testing modalities will be assessed. This study will evaluate the use of a novel, digital platform (GUÍA) to digitize the return of genomic results experience and improve participant understanding for English- and Spanish-speaking families. Surveys will collect data at three study visits: baseline (0 months), result disclosure visit (ROR1, + 3 months), and follow-up visit (ROR2, + 9 months). Outcomes will assess parental understanding of and attitudes toward receiving genomic results for their child and behavioral, psychological, and social impact of results. We will also conduct a pilot study to assess a digital tool called GenomeDiver designed to enhance communication between clinicians and genetic testing labs. We will evaluate GenomeDiver’s ability to increase the diagnostic yield compared to standard practices, improve clinician’s ability to perform targeted reverse phenotyping, and increase the efficiency of genetic testing lab personnel. Discussion The NYCKidSeq project will contribute to the innovations and best practices in communicating genomic test results to diverse populations. This work will inform strategies for implementing genomic medicine in health systems serving diverse populations using methods that are clinically useful, technologically savvy, culturally sensitive, and ethically sound. Trial registration ClinicalTrials.govNCT03738098. Registered on November 13, 2018 Trial Sponsor: Icahn School of Medicine at Mount Sinai Contact Name: Eimear Kenny, PhD (Principal Investigator) Address: Icahn School of Medicine at Mount Sinai, One Gustave L. Levy Pl., Box 1003, New York, NY 10029 Email: eimear.kenny@mssm.edu

Vaginal rings for pre-exposure prophylaxis are a female-initiated HIV prevention method that does not require daily or coitally-dependent dosing. As part of a randomized placebo-controlled trial of a tenofovir disoproxil fumarate intravaginal ring, we assessed product acceptability through in-depth interviews with 18 women during and after 14 days of continuous use. Women reported that the ring was comfortable with few side effects, regardless of experimental arm. However, interest in future use by this cohort was modest for several reasons including: low self-perceived HIV risk; concern that use implied promiscuity; potential for interference with relationship formation and trust; concern for interference with menstruation and cleanliness; and worries about partners' acceptability and sexual pleasure. Potential issues were raised with duration of use prior to ring exchange. Future studies should continue to identify and address individual and relationship factors that influence acceptability, early in the product development process.

We proposed and tested a theoretical framework for how use of Teach-back could influence communication during the pediatric clinical encounter.Audio-taped pediatric primary care encounters with 44 children with asthma were coded using the Roter Interaction Analysis System to measure patient-centered communication and affective engagement of the parent. A newly created Teach-back Loop Score measured the extent to which Teach-back occurred during the clinical encounter; parental health literacy was measured by Newest Vital Sign. Logistic regression was used to test the relationship between Teach-back and features of communication. Focus groups held separately with clinicians and parents elicited perceptions of Teach-back usefulness.Teach-back was used in 39% of encounters. Visits with Teach-back had more patient centered communication (p=0.01). Adjusting for parent health literacy, parent age, and child age, Teach-back increased the odds of both patient centered communication [proportional AOR (95% CI)=4.97 (4.47-5.53)]and negative affect [AOR (95% CI)=5.39 (1.68-17.31)]. Focus group themes common to clinicians and parents included: Teach-back is effective, could cause discomfort, should be used with children, and nurses should use it.Teach-back was associated with more patient-centered communication and increased affective engagement of parents.Standardizing Teach-back use may strengthen patient-centered communication.

Summary: Genetic counselors are trained to deliver complicated genomic test results to parents of pediatric patients. However, there is limited knowledge on how parents perceive this information and what they understand about the results. This research aims to qualitatively explore parents’ experiences receiving genomic test results for their children. As part of formative research for the NYCKidSeq Study, we recruited a purposive sample of parents of 22 children stratified by child race/ethnicity and test result classification (positive, uncertain, or negative) and conducted in-depth interviews using a semi-structured guide. Analysis was conducted using grounded theory’s constant comparative method across cases and themes. Parents described different elements of understanding: genetics knowledge; significance and meaning of positive, uncertain, or negative results; and implications for the health of their child and family. Parents reported challenges understanding technical details and significance of their child’s results but gladly allowed their providers to be custodians of this information. However, of the different elements of understanding described, parents cared most deeply about being able to understand implications for their child’s and family’s health. These findings suggest that a counseling approach that primarily addresses parents’ desire to understand how to best care for their child and family may be more appropriate than an information-heavy approach focused on technical details. Further research is warranted to confirm these findings in larger parent cohorts and to explore ways genetic counseling can support parents’ preferences without sacrificing important components of parent understanding and overall satisfaction with their experiences with genomic medicine.

Objectives To determine whether there is an association between adverse childhood experiences (ACEs) and childhood-onset arthritis, comparing youth with arthritis to both healthy youth and youth with other acquired chronic physical diseases (OCPD); and to examine whether ACEs are associated with disease-related characteristics among children with arthritis. Study design In a cross-sectional analysis of data from the 2016 National Survey of Children's Health we examined whether ACEs were associated with having arthritis vs either being healthy or having a nonrheumatologic OCPD. ACE scores were categorized as 0, 1, 2-3, ≥4 ACEs. Multinomial logistic regression models examined associations between ACEs and health status while adjusting for age, sex, race/ethnicity, and poverty status. Among children with arthritis, associations between ACEs and disease-related characteristics were assessed by Pearson χ2 analyses. Results Compared with children with no ACEs, children with 1, 2-3, and ≥4 ACEs had an increased odds of having arthritis vs being healthy (adjusted OR for ≥4 ACEs, 9.4; 95% CI, 4.0-22.1) and vs OCPD (adjusted OR for ≥4 ACEs, 3.7; 95% CI-1.7, 8.1). Among children with arthritis, ACEs were associated with worse physical impairment. Conclusions Children with higher numbers of ACEs are more likely to have arthritis, when arthritis status is compared either with being healthy or with having OCPD. Further studies are needed to determine the direction of the association between ACEs and childhood arthritis, its impact on disease course, and potential intervention targets that might mitigate these effects.

Community-Based Participatory Research partnerships typically do not include adolescents as full community partners. However, partnering with adolescents can enhance the success and sustainability of adolescent health interventions. We partnered with adolescents to address health disparities in a low-income urban community. In partnering with youth, it is important to consider their developmental stage and needs to better engage and sustain their involvement. We also learned the value of a Youth Development framework and intentionally structuring a youth-friendly Community-Based Participatory Research environment. Finally, we will raise some ethical responsibilities to consider when working with youth partners.

OBJECTIVE: Physical activity (PA) levels are low in today’s youth and may even be lower in those with asthma. Barriers to PA have not been well studied in inner-city, minority children with asthma. We conducted a qualitative study to characterize parental perceptions of barriers to PA and ways to improve PA levels in children with asthma. METHODS: We used the socio-ecological model (SEM) to inform development of our interview guide. Questions fell into two SEM domains: 1) interpersonal (parent, family) barriers and 2) community (neighborhood, school) barriers. Qualitative semi-structured interviews were conducted with 23 parents (21 mothers, 2 fathers) of inner-city children with asthma (ages 8–10 years) from 10 Bronx, New York (NY) elementary schools. Sampling continued until thematic saturation was reached. Interviews were recorded, transcribed, and independently coded for common themes. Emerging themes were discussed and agreed upon by investigators. RESULTS: Three themes surrounding interpersonal barriers to PA emerged: 1) parental fear of exercise-induced asthma due to lack of child symptom awareness; 2) non-adherence and refusal to take medications; and 3) challenges with asthma management. Four themes around community barriers to PA emerged: 1) lack of trust in school management of asthma; 2) lack of school PA facilities; 3) unsafe neighborhoods, and 4) financial burden of PA. CONCLUSIONS: Our results indicate a complex multi-level set of barriers to PA in children with asthma. Addressing these barriers by involving stakeholders at the family, school and community levels may improve PA levels in children with asthma.

We examined whether sexual attitudes of adolescents were related to their self-reported sexual risk behavior by analyzing survey data from 1,052 boys and girls aged 14 to 17 years from a low income, urban community. Sexual behavior norms that may increase sexually transmitted infection/HIV risks in youth were sanctioned more by males and by sexually experienced youth, but their attitudes were unassociated with either their age or race/ethnicity. Endorsement was correlated with greater intention to have sexual intercourse among all youth. Among sexually experienced participants, it was associated with earlier sexual debut, more partners, and less intention to use condoms but not with the number of unprotected sexual episodes in the prior six months. Sexual attitudes of youth may conflict with initiation and maintenance of safer sex practices, making them vulnerable to HIV and other sexually transmitted infections. Risk reduction interventions for adolescents should address this.

One in five people living with HIV are unaware of their status; they account for an estimated 51% of new infections. HIV transmission can be reduced through a “Test and Treat” strategy, which can decrease both viral load and risk behaviors. However, linkage of newly diagnosed HIV positive persons to care has proved challenging. We report quantitative and qualitative data on linkage to care from HIV testing sites that partnered with the New York City Department of Health and Mental Hygiene (DOHMH) to implement “The Bronx Knows”, (TBK) an initiative that tested 607,570 residents over 3 years. During TBK, partner agencies reported the aggregate number of HIV tests conducted, the number of confirmed positives (overall and new), and the number of confirmed positives linked to medical care. We conducted qualitative interviews with directors of 24/30 TBK HIV testing agencies to identify linkage barriers and selected 9 for case studies. Barriers to linkage fell into 3 domains: (1) health care system factors (long wait for provider appointments; requirement of a positive confirmatory test before scheduling an appointment; system navigation; disrespectful to patients); (2) social factors (HIV stigma); and (3) characteristics of risk populations (e.g., mental illness, homelessness, substance use, immigrant). Best practices for linkage included networking among community organizations, individualized care plans, team approach, comprehensive and coordinated care services, and patient peer navigation. Research and public health implications are discussed.

The aim of this study was to test the hypothesis that children with both social and biomedical risk factors are more likely to be in poorer health and utilize more health services than those with either type of risk alone.Variables were identified using the 1998 National Health Interview Survey and tested here on 2002 data. Dependent variables were health (poorer health rating) and service use (hospitalization or greater than 2 emergency services). High social risk was defined as greater than 2 risk factors (parental education less than high school, family income200% of federal poverty level, and non-2-parent family). High biomedical risk was defined as having a chronic condition or birth weight2500 grams.Children with either high social or biomedical risk were significantly more likely to be in poorer health (odds ratio [OR] 3.1-3.4) and to have higher utilization (OR 1.7-2.1) than children at low risk on both dimensions. Children with high risk on both dimensions were significantly more likely to be in poorer health (OR 7.8-7.9) and have higher utilization (OR 3.5-3.7) on both social and biomedical risks and those children rated high risk on either dimension alone. Overall, social risk was as powerful as biomedical risk in these models and added substantially to biomedical risk. Findings were stable using different cut points for social risk and health ratings, and different definitions of chronic condition.These findings have implications for health care planners and insurers in estimating the burdens on clinicians and potential costs of delivering care to those with high social risks.

Many of the individuals most at risk for HIV infection (i.e., minority populations, women, adolescents) are also the most marginalized by our health care system. Lacking primary care providers, they rely on the Emergency Department (ED) for their health care needs and education. In this prospective randomized controlled trial, we compared the educational effectiveness of a 15-minute posttest counseling video with the normal practice of a session with an HIV counselor. The study population was composed of ambulatory patients recruited for rapid HIV testing in the ED.The RAs (research assistants) recruited a convenience sample of stable patients presenting to the walk-in section of an inner-city adult ED for rapid HIV testing. Eligible patients for this study included patients who consented for the rapid HIV test and completed measures on condom intention and condom use self-efficacy. Before receiving their results, participants who consented to be in this study were randomized to either a 15-minute HIV posttest educational video available in English/Spanish or to a posttest educational session with an HIV counselor. Afterwards, both groups completed an assessment tool concerning HIV prevention and transmission.Of the 128 participants, 61 and 67 patients were randomized to the video and counselor groups, respectively. The groups were similar with respect to gender, ethnicity and experience with prior HIV testing. Mean knowledge scores were higher in the video group (76.20% vs. 69.3%; 90% CI for the difference, 2.8, 11.2). As the lower bound of the CI for the difference was higher than the lower equivalence boundary (-5%), we infer that the video was at least as effective as the counselor educational session.The use of an educational counseling video is a valid alternative for providing posttest education and prevention information during the waiting period associated with the 20-minute HIV rapid test. Without disruption in clinical flow, both testing and education can be accomplished in a meaningful way in a busy ED.

Many preventive intervention studies with adolescents address high-risk behaviors such as drug and alcohol use, and unprotected sex. Randomized controlled trials (RCT) are the gold standard methodology used to test the effectiveness of these behavioral interventions. Interventions outside the rigidly described protocol are prohibited. However, there are ethical challenges to implementing inflexible intervention protocols, especially when the target population is young, experiences many stressful events, and lives in a resource-poor environment. Teens who are at high risk for substance use or sexual risk behaviors tend to be at risk for other problems such as exposure to violence, sexual and physical abuse, depression, and homelessness. How should investigators deal with the psychological and social needs of teenagers in prevention programs in an ethically appropriate way and at the same time preserve the validity of RCT results? We have identified program characteristics, participant characteristics, inte...

Although interventions based on cognitive theories can reduce rates of unsafe sexual behavior in adolescents, effect sizes remain small. This study was a qualitative investigation of inner-city adolescents' intentions to use condoms following participation in an intensive safer sex program. In-depth interviews with 26 adolescents were analyzed using standard qualitative methods. Although participants reported strong intentions to use condoms, they described many exceptions to their intention. Condom use intentions were also trumped by the presence of alternative, often conflicting intentions. Typical barriers to condom use played a minor role compared to exceptions and competing intentions. Boys and girls differed in the ways exception to intention and alternate intentions interfered with condom use; these reflected gender roles and norms, which are often neglected in HIV/STD prevention programs. The authors conclude that the barrier model to explain non-condom use is incomplete and that the concept of intention itself may need more conceptual work.

Background Engagement in HIV care helps to maximize viral suppression, which in turn, reduces morbidity and mortality and prevents further HIV transmission. With more HIV cases than any other US city, New York City reported in 2012 that only 41% of all persons estimated to be living with HIV (PLWH) had a suppressed viral load, whereas nearly three-quarters of those in clinical care achieved viral suppression. Thus, retaining PLWH in HIV care addresses this central goal of both the US National HIV/AIDS Strategy and Governor Cuomo's plan to end the AIDS epidemic in New York State. Methods We conducted 80 in-depth qualitative interviews with PLWH in 4 New York City populations that were identified as being inconsistently engaged in HIV medical care: African immigrants, previously incarcerated adults, transgender women, and young men who have sex with men. Results Barriers to and facilitators of HIV care engagement fell into 3 domains: (1) system factors (eg, patient-provider relationship, social service agencies, transitions between penal system and community), (2) social factors (eg, family and other social support; stigma related to HIV, substance use, sexual orientation, gender identity, and incarceration), and (3) individual factors (eg, mental illness, substance use, resilience). Similarities and differences in these themes across the 4 populations as well as research and public health implications were identified. Conclusions Engagement in care is maximized when the social challenges confronted by vulnerable groups are addressed, patient-provider communication is strong, and coordinated services are available, including housing, mental health and substance use treatment, and peer navigation.

Children orphaned by HIV/AIDS experience not only the trauma of a parent's death, but the stress of living with and often caring for an ill and dying parent. We interviewed 50 mothers ill from HIV/AIDS in both Mutare, Zimbabwe and New York, USA, and one child of each aged 8–16 about personal assistive care the child provided; other household responsibilities; hours/day children spent on chores; and parental/child mental health. Children provided substantial amounts of personal care; took responsibility for cooking, cleaning, shopping and other household tasks; and some were their parents' confidants. The amount of care provided was related to maternal disability, not child age, gender, or presence of other adults/siblings. Children reported performing more tasks than their mothers reported. Almost half of New York and 80% of Mutare children said they had too much responsibility, and most reported reduced after-school and peer activities. Both children and parents felt children were more capable b...

CONTEXT. Disparities in child health are a major public health concern. However, it is unclear whether these are predominantly the result of low income, race, or other social risk factors that may contribute to their health disadvantage. Although others have examined the effects of the accumulation of risk factors, this methodology has not been applied to child health.OBJECTIVE. We tested 4 social risk factors (poverty, minority race/ethnicity, low parental education, and not living with both biological parents) to assess whether they have cumulative effects on child health and examined whether access to health care reduced health disparities.DESIGN. We analyzed data on 57553 children RESULTS. A total of 43.6% of children had no social disadvantages, 30.8% had 1, 15.6% had 2, and 10.0% had all 3. Compared with those with no social disadvantages, the odds ratios (ORs) of being in “good, fair, or poor health” (versus “excellent or very good”) were 1.95 for 1 risk, 3.22 for 2 risks, and 4.06 for 3 risks. ORs of having a chronic condition increased from 1.25 (1 risk) to 1.60 (2 risks) to 2.11 (3 risks). ORs for activity limitation were 1.51 (1 risk) to 2.14 (2 risks) and 2.88 (3 risks). Controlling for health insurance did not affect these findings.CONCLUSIONS. The accumulation of social disadvantage among children was strongly associated with poorer child health and having insurance did not reduce the observed health disparities.

We compared knowledge, attitudes, and demographic characteristics of 630 sexually experienced and 422 inexperienced inner-city adolescents aged 14–17 years. Sexual experience was associated with indicators of risk previously reported in the literature: male gender, older age, single-family home, smoking, drinking, and poorer academic performance. We found lower HIV knowledge in sexually inexperienced youth, which suggested an area of vulnerability compared with sexually active teens. However, most inexperienced adolescents intended to remain virgins for the next 6 months, most had peer groups they also perceived to be virgins, and they were more positive and confident about remaining abstinent. Differences between the groups suggest there may be benefits to developing intervention programs targeted to their different strengths and weaknesses.

Research indicates that people use condoms less often with a regular sexual partner than with a casual partner because they believe condoms are not needed. This article reports qualitative findings from four group meetings and 11 in-depth interviews in which sexually experienced inner-city adolescents aged 14-17 talked about their sexual relationships. Three types of relationships were described: messing, for sex only; boy-girlfriend, a more intense relationship, and "hubby-wifey," which mimics marriage. The four types of relationships differ along four analytic dimensions, which give them meaning: future commitment; public vs. secret; expectation of monogamy; and degree of affection and love. Decisions about condom use are influenced by these dimensions which may be underestimated in theoretical models that focus on individuals, not couples.

Gender beliefs affect adolescents' sexual motivations, perceptions, and actions (Moss, 1994) and can endanger sexual health (Haffner, 1998). We believe that teaching youth about gender norms will increase the efficacy of HIV/STD preventive interventions. We were funded by the National Institute of Child Health and Human Development to develop and evaluate a gender-based intervention for youth aged 13–16. In this paper we summarize the literature on how biological sex and gender roles influence sexual risk behavior among teenagers, summarize some of our own data on gender beliefs of teenagers, describe the Reel World program that we developed to teach gender, and discuss the challenges we faced in teaching gender norms to youth and how we addressed them.

The aim of this study was to develop an instrument to measure the US public's attitudes toward people with epilepsy and to assess the initial reliability and validity of the instrument. A 46-item attitudinal instrument was developed and tested using a proportional, stratified, national, random-digit dial household telephone survey of adults aged > or = 18 (n=758). Exploratory factor analyses revealed four underlying constructs that accounted for 34.4% of the variance in the factor analysis: negative stereotypes (alpha=0.73); risk and safety concerns (alpha=0.85); work and role expectations (alpha=0.76); and personal fear and social avoidance (alpha=0.79). Knowledge was also assessed; participants with less knowledge about epilepsy had more negative attitudes. The results of these analyses provided evidence for reliability and construct validity of the instrument. Additional tests of the reliability, validity, and factor structure of the scales are necessary to refine the instrument.

Factors associated with psychological distress were examined in 220 low-income, mostly minority mothers with late-stage HIV/AIDS. Mothers lived with at least one HIV-negative child of age 2-12 years and participated in a study of the effectiveness of a custody planning intervention provided by The Family Center. The mothers exhibited extraordinarily high levels of psychological disturbance on the Psychiatric Symptom Index (PSI). Multiple regression showed that higher PSI Total scores were significantly related to the mother's reports of having non-HIV-related medical conditions, spending time in bed in the past 2 weeks, having more activity restrictions, and having a lot of difficulty caring for her child due to ill health. Higher scores also were associated with lower education, experiencing more negative life events, and greater receipt and lower adequacy of social support. Thus, higher distress was associated with inability to perform usual activities and mobilization of support. However, other HIV-related health factors, traditional background characteristics, and psychosocial measures (e.g., HIV stigma, parenting stress, family environment) failed to indicate who was most vulnerable. Researchers need to identify the mechanisms of risk and develop appropriate mental health interventions.

This study examined the relationships between selected risk and resistance factors and maternal reports of child behavior problems on the Child Behavior Checklist (CBCL) in families affected by maternal HIV/AIDS. Data were obtained from 193 mothers with late-stage HIV/AIDS who were included in a sample consecutively recruited from the New York City Division of AIDS Services Income Support to participate in Project Care, a randomized trial of a permanency planning intervention. Each mother reported on one HIV negative index child 5–12 years of age. Child behavior problems were related significantly to the mother’s psychological distress and marginally to her having illness-related activity restrictions, but not to other measures of maternal physical health, stigma or disclosure of her HIV to the child. Two child dispositional factors, productivity and independence, and two family factors, adaptability and a good parent–child relationship, were related to better child functioning, but family cohesion was a risk factor for poorer adjustment in this sample. These are likely to be key target variables useful to policy makers in planning programs to assist these children in coping successfully with their mother’s illness.

Asthma is a chronic respiratory disease affecting nearly 9.6% of United States children.1 Asthma disproportionately burdens children from poor and minority backgrounds.2 Children with asthma have high rates of school absenteeism.3 With children spending nearly half of their day at school, appropriate school asthma management can help optimize care for students with asthma. Successful school asthma management involves individual case identification and provision of medications to students when needed.4 New York City (NYC) schools require caregiver submission of a Medication Administration Form (MAF; a physician-completed order form that must be renewed every school year) to confirm asthma diagnoses and allow school nurses to administer medication for asthma exacerbations.5 Without an MAF, due to systems-based regulations, the nurse cannot administer medication, even if a student is having an asthma attack. Many NYC schools struggle with individual asthma case identification6 and have difficulty obtaining MAFs for students, making acute asthma management challenging. Therefore, the objectives of this study were to 1) compare asthma prevalence in four NYC schools based on caregiver and school report; and 2) identify asthma morbidity factors associated with MAF submission. We conducted a cross-sectional survey of caregivers of children attending 2nd-4th grades in four Bronx, New York (NY) elementary schools as the first step in preparation for a school-based intervention study. The NYC Department of Education and the university's Institutional Review Board (IRB) approved this study. We developed a 6-item self-administered English-Spanish asthma survey based on prior surveys7,8 and NYC DOE guidelines for MAF.5 The survey was field-tested with 10 caregivers of children with and without asthma at routine office visits to ensure questions were clear and easy to comprehend. The survey is available in an online supplement. Surveys and return envelopes were sent home with students during the fall of 2012. Caregivers were instructed to return completed surveys to the classroom teachers in the sealed envelopes. We then collected envelopes from the teachers. Children received a small gift (e.g. stickers, tattoos) for reminding caregivers to return the surveys. Schools were asked to report the number of students with asthma in the same grades. Schools use several Board of Education forms, such as health examination forms and MAFs sent to all students, to identify asthma cases. We performed descriptive statistics for all variables. Differences in proportions were tested by Chi-square. A two-sided α

Objective.— To determine the accuracy of parent report and the accuracy of the medical record in documenting physician performance of elements of pediatric asthma care in the primary care setting. Methods.— A convenience sample of 79 English-speaking parents of 4–12-year old children with asthma presenting to medical center–affiliated inner-city primary care pediatric clinics in the Bronx, Dallas, and Chicago was enrolled, and the office visit was audiotaped. Parents were interviewed 1–16 days after the visit by telephone. Outcome Measures.— Accuracy of parent report was the primary outcome. The "reference standard" was an independent evaluation of the audiotaped record of the primary care visit. The National Asthma Education and Prevention Program was used as a guide to select data elements to assess quality of pediatric asthma care during primary care visits. Results.— Sufficient documentation was significantly ( P Conclusions.— Our study suggests that parent telephone interview within 2 weeks after the visit is more accurate than the medical record for documentation of the quality of asthma care in pediatric primary care visits. The medical record was not sufficient to assess the quality of primary care related to asthma, primarily because of missing data. Therefore, our data suggest that assessing quality of care using the medical record will not only bias the findings in the direction of more deficient care but will also make improvement in care more difficult. Further validation of our strategy for using parent report to assess the quality of care in primary care visits will require its application in a variety of other primary care settings.

Objectives.Poor children's reliance on emergency facilities is one factor implicated in the rise of morbidity attributed to asthma. Although studies have examined doctor-patient communication during routine pediatric visits, little data are available about communication during emergency care.This st