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We describe a provider-focused intervention to increase universal HIV testing among adolescent users in a network of School-Based Health Centers (SBHC) and compare the rate of HIV test offer and acceptance for SBHCs with and without the HIV testing intervention. The intervention was implemented at the six largest SBHCs in the 12-site network and included system- and staff-level initiatives, including an implementation coach to support SBHC associates. Rates of HIV test offer and acceptance at six sites in the Intervention Cohort were compared to that at the six sites in a Non-Intervention Cohort which was not randomly selected but had comparable distributions by age, gender and race/ethnicity. The model showed an intervention effect for universal HIV test offer, but no overall effect for test acceptance. Analyzing the intervention effect by whether a patient had a history of sexual activity, the intervention was very effective early in its implementation at increasing test offer to those with no history of sexual activity, and late in its implementation at increasing test acceptance for those with no or unknown sexual activity. Increasing and sustaining universal HIV testing in SBHCs may benefit from using Implementation Science frameworks to guide adaptation of the intervention.
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There is increasing evidence of the clinical utility of genetic and genomic testing (GT); however, factors influencing personal utility of GT, especially in diverse, multilingual populations, remain unclear. We explored these factors in a diverse cohort of parents/guardians (participants) whose children received clinical GT through the NYCKidSeq program. A total of 847 participants completed surveys at baseline, post-results disclosure, and 6 months (6m) post-results. The largest population groups were Hispanic/Latino(a) (48%), White/European American (24%), and Black/African American (16%). Personal utility was assessed using the Personal Utility (PrU) scale, adapted for pediatric populations and included on the surveys. Three PrU subscales were identified using factor analysis: practical, educational, and parental psychological utility. Overall personal utility summary score and the three subscales significantly decreased after receiving results and over time. Hispanic/Latino(a) participants identified greater overall personal utility than European American and African American participants at all time points (p < 0.001) as did participants whose children received positive/likely positive results compared with those with negative and uncertain results (post-results: p < 0.001 and p < 0.001; 6m post-results: p = 0.002 and p < 0.001, respectively). Post-results, higher subscale scores were associated with lower education levels (practical, parental psychological: p ≤ 0.02) and higher levels of trust in the healthcare system (practical, parental psychological: p ≤ 0.04). These findings help to understand the perspectives of diverse parents/guardians, which is critical to tailoring pre- and post-test counseling across a variety of populations and clinical settings.
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Testes Genéticos , Pais , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Genômica , Hispânico ou Latino/genética , Multilinguismo , Inquéritos e Questionários , Brancos/genética , Negro ou Afro-Americano/genéticaRESUMO
INTRODUCTION: We hypothesized that multidisciplinary, proactive electronic consultation (MPE) could overcome barriers to prescribing guideline-directed medical therapies (GDMTs) for patients with type 2 diabetes (T2D) and chronic kidney disease (CKD). RESEARCH DESIGN AND METHODS: We conducted an efficacy-implementation pilot study of MPE for T2D and CKD for primary care provider (PCP)-patient dyads at an academic health system. MPE included (1) a dashboard to identify patients without a prescription for sodium-glucose cotransporter-2 inhibitors (SGLT2i) and without a maximum dose prescription for renin-angiotensin-aldosterone system inhibitors (RAASi), (2) a multidisciplinary team of specialists to provide recommendations using e-consult templates, and (3) a workflow to deliver timely e-consult recommendations to PCPs. In-depth interviews were conducted with PCPs and specialists to assess feasibility, acceptability, and appropriateness of MPE and were analyzed using an iterative qualitative analysis approach to identify major themes. Prescription data were extracted from the electronic health record to assess preliminary effectiveness to increase GDMT. RESULTS: 20 PCPs agreed to participate, 18 PCPs received MPEs for one of their patients with T2D and CKD, and 16 PCPs and 2 specialists were interviewed. Major themes were as follows: appropriateness of prioritization of GDMT for T2D and CKD, acceptability of the content of the recommendations, PCP characteristics impact experience with MPE, acceptability and appropriateness of multidisciplinary collaboration, feasibility of MPE to overcome patient-specific barriers to GDMT, and appropriateness of workflow. At 6 months postbaseline, 7/18 (39%) patients were newly prescribed an SGLT2i, and 7/18 (39%) patients were either newly prescribed or had increased dose of RAASi. CONCLUSIONS: MPE was an acceptable and appropriate health system strategy to identify and address gaps in GDMT among patients with T2D and CKD. Adopting MPE could enhance GDMT, though PCPs raised feasibility concerns which could be improved with program enhancements, including follow-up e-consults for reinforcement, and administrative support for navigating system-level barriers.
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Diabetes Mellitus Tipo 2 , Encaminhamento e Consulta , Insuficiência Renal Crônica , Humanos , Insuficiência Renal Crônica/tratamento farmacológico , Diabetes Mellitus Tipo 2/tratamento farmacológico , Projetos Piloto , Masculino , Feminino , Pessoa de Meia-Idade , Guias de Prática Clínica como Assunto/normas , Atenção Primária à Saúde/métodos , Atenção Primária à Saúde/normas , Inibidores do Transportador 2 de Sódio-Glicose/uso terapêutico , Idoso , Fidelidade a Diretrizes/estatística & dados numéricos , Equipe de Assistência ao Paciente , Seguimentos , Padrões de Prática Médica/normas , PrognósticoRESUMO
Digital solutions are needed to support rapid increases in the application of genetic/genomic tests (GTs) in diverse clinical settings and patient populations. We developed GUÍA, a bilingual digital application that facilitates disclosure of GT results. The NYCKidSeq randomized controlled trial enrolled diverse children with neurologic, cardiac, and immunologic conditions who underwent GTs. The trial evaluated GUÍA's impact on understanding the GT results by randomizing families to results disclosure genetic counseling with GUÍA (intervention) or standard of care (SOC). Parents/legal guardians (participants) completed surveys at baseline, post-results disclosure, and 6 months later. Survey measures assessed the primary study outcomes of participants' perceived understanding of and confidence in explaining their child's GT results and the secondary outcome of objective understanding. The analysis included 551 diverse participants, 270 in the GUÍA arm and 281 in SOC. Participants in the GUÍA arm had significantly higher perceived understanding post-results (OR = 2.8, CI[1.004, 7.617], p = 0.049) and maintained higher objective understanding over time (OR = 1.1, CI[1.004, 1.127], p = 0.038) compared to SOC. There was no impact on perceived confidence. Hispanic/Latino(a) individuals in the GUÍA arm maintained higher perceived understanding (OR = 3.9, CI[1.603, 9.254], p = 0.003), confidence (OR = 2.7, CI[1.021, 7.277], p = 0.046), and objective understanding (OR = 1.1, CI[1.009, 1.212], p = 0.032) compared to SOC. This trial demonstrates that GUÍA positively impacts understanding of GT results in diverse parents of children with suspected genetic conditions and builds a case for utilizing GUÍA to deliver complex results. Continued development and evaluation of digital applications in diverse populations are critical for equitably scaling GT offerings in specialty clinics.
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Revelação , Aconselhamento Genético , Criança , Humanos , Testes Genéticos , Pais , GenômicaRESUMO
Background: Digital solutions are needed to support rapid increases in the application of genetic and genomic tests (GT) in diverse clinical settings and patient populations. We developed GUÍA, a bi-lingual web-based platform that facilitates disclosure of GT results. The NYCKidSeq randomized controlled trial evaluated GUÍA's impact on understanding of GT results. Methods: NYCKidSeq enrolled diverse children with neurologic, cardiac, and immunologic conditions who underwent GT. Families were randomized to genetic counseling with GUÍA (intervention) or standard of care (SOC) genetic counseling for results disclosure. Parents/legal guardians (participants) completed surveys at baseline, post-results disclosure, and 6-months later. Survey measures assessed the primary study outcomes of perceived understanding of and confidence in explaining their child's GT results and the secondary outcome of objective understanding. We used regression models to evaluate the association between the intervention and the study outcomes. Results: The analysis included 551 participants, 270 in the GUÍA arm and 281 in SOC. Participants' mean age was 41.1 years and 88.6% were mothers. Most participants were Hispanic/Latino(a) (46.3%), White/European American (24.5%), or Black/African American (15.8%). Participants in the GUÍA arm had significantly higher perceived understanding post-results (OR=2.8, CI[1.004,7.617], P=0.049) and maintained higher objective understanding over time (OR=1.1, CI[1.004, 1.127], P=0.038) compared to those in the SOC arm. There was no impact on perceived confidence. Hispanic/Latino(a) individuals in the GUÍA arm maintained higher perceived understanding (OR=3.9, CI[1.6, 9.3], P=0.003), confidence (OR=2.7, CI[1.021, 7.277], P=0.046), and objective understanding (OR=1.1, CI[1.009, 1.212], P=0.032) compared to SOC . Conclusions: This trial demonstrates that GUÍA positively impacts understanding of GT results in diverse parents of children with suspected genetic conditions. These findings build a case for utilizing GUÍA to deliver complex and often ambiguous genetic results. Continued development and evaluation of digital applications in diverse populations are critical for equitably scaling GT offerings in specialty clinics. Trial Registration: Clinicaltrials.gov identifier NCT03738098.
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Hospitalizations among people living with HIV (PLWH) are frequent and costly. This study examined the association between psychiatric, HIV-related, and demographic factors and hospitalization rates among PLWH using data from the Einstein-Rockefeller-City University of New York Center for AIDS Research Clinical Cohort Database. Of the 10,215 PLWH included in the sample, 45% had at least one non-psychiatric hospitalization between 2009 and 2018, with significant risk factors including prior psychiatric outpatient visits, depression, or alcohol-related disorder diagnoses, female sex, older age, CD4 count < 500 cells/uL, and detectable viral load. Additionally, 14% had an HIV-related hospitalization, with significant risk factors including prior psychiatric outpatient visits, alcohol- and substance-related disorder diagnoses, female sex, older age, CD4 count < 500 cells/uL, and detectable viral load. The study emphasizes the need for tailored interventions, including integrated treatment and comprehensive case management, for PLWH with comorbid psychiatric disorders, women, and older adults.
RESUMEN: Las hospitalizaciones son frecuentes y costosas entre las personas que viven con VIH (PVVIH). Este estudio examinó la asociación entre factores psiquiátricos, relacionados con el VIH y demográficos, y las tasas de hospitalización en 10,215 PVVIH. Entre 2009 y 2018, el 45% de los pacientes tuvieron al menos una hospitalización no psiquiátrica. Los factores de riesgo significativos incluyeron más visitas previas a la consulta psiquiátrica ambulatoria, diagnóstico previo de depresión o trastorno relacionado con el alcohol, sexo femenino, edad avanzada, conteo de células CD4 < 500 células/uL, y carga viral detectable. De las 10,215 PVVIH, el 14% tuvo una hospitalización relacionada con el VIH. Los resultados destacan la necesidad urgente de apoyo dirigido a PVVIH con trastornos psiquiátricos comorbilidades, y para mujeres y adultos mayores que viven con VIH.
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Transtornos Relacionados ao Uso de Álcool , Infecções por HIV , Humanos , Feminino , Idoso , Cidade de Nova Iorque/epidemiologia , Infecções por HIV/complicações , Infecções por HIV/epidemiologia , Hospitalização , Fatores de RiscoRESUMO
BACKGROUND: The COVID-19 pandemic forced healthcare institutions and many clinical research programs to adopt telehealth modalities in order to mitigate viral spread. With the expanded use of telehealth, there is the potential to increase access to genomic medicine to medically underserved populations, yet little is known about how best to communicate genomic results via telehealth while also ensuring equitable access. NYCKidSeq, a multi-institutional clinical genomics research program in New York City, launched the TeleKidSeq pilot study to assess alternative forms of genomic communication and telehealth service delivery models with families from medically underserved populations. METHODS: We aim to enroll 496 participants between 0 and 21 years old to receive clinical genome sequencing. These individuals have a neurologic, cardiovascular, and/or immunologic disease. Participants will be English- or Spanish-speaking and predominantly from underrepresented groups who receive care in the New York metropolitan area. Prior to enrollment, participants will be randomized to either genetic counseling via videoconferencing with screen-sharing or genetic counseling via videoconferencing without screen-sharing. Using surveys administered at baseline, results disclosure, and 6-months post-results disclosure, we will evaluate the impact of the use of screen-sharing on participant understanding, satisfaction, and uptake of medical recommendations, as well as the psychological and socioeconomic implications of obtaining genome sequencing. Clinical utility, cost, and diagnostic yield of genome sequencing will also be assessed. DISCUSSION: The TeleKidSeq pilot study will contribute to innovations in communicating genomic test results to diverse populations through telehealth technology. In conjunction with NYCKidSeq, this work will inform best practices for the implementation of genomic medicine in diverse, English- and Spanish-speaking populations.
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BACKGROUND: Oral HIV preexposure prophylaxis (PrEP) is safe and effective but underutilized. Health care providers' beliefs about PrEP and attitudes toward people who could benefit may affect PrEP access. METHODS: This mixed-methods study (2016-2018) was conducted in 8 New York City public sexual health clinics that implemented a PrEP program. Data included 32 in-depth qualitative interviews with clinicians, quantitatively coded to reflect their PrEP beliefs; a provider questionnaire; and 6 months of medical record visit data for these providers. Among patients with a PrEP indication, we examined the odds of a patient being initiated on PrEP associated with providers' PrEP beliefs and demographic characteristics, and patient characteristics. RESULTS: Providers reported strong support for offering PrEP to eligible patients. The majority denied concerns about possible development of drug-resistant viral strains, giving PrEP to people who might not benefit, and PrEP toxicity. Nevertheless, about one-third agreed with each of these concerns, and 55% thought PrEP use might limit condom use. Of 2176 patients with a PrEP indication, 20% were initiated. Providers with more restrictive PrEP beliefs did not have lower odds of initiating patients on PrEP. Women as well as Black and Latinx patients were less likely to be initiated on PrEP. CONCLUSIONS: Contrary to our hypotheses, providers' negative PrEP beliefs did not seem to reduce initiation of PrEP for eligible patients. This may be attributable to clear clinical protocols, strong staff support, and training on implementing PrEP in this setting. Racial and gender disparities in PrEP uptake urgently require attention.
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Fármacos Anti-HIV , Infecções por HIV , Profilaxia Pré-Exposição , Saúde Sexual , Humanos , Feminino , Infecções por HIV/prevenção & controle , Infecções por HIV/tratamento farmacológico , Cidade de Nova Iorque , Pessoal de Saúde/educação , Comportamento Sexual , Profilaxia Pré-Exposição/métodos , Fármacos Anti-HIV/uso terapêuticoRESUMO
This article describes the processes of transforming an in-person group-based intervention to promote uptake of PrEP among young woman in South Africa to an online interactive "workshop" during the COVID-19 pandemic. Beginning in person and continuing virtually, we used a step-by-step participatory approach with multiple stakeholder groups to develop nine activities to increase knowledge about, as well as motivation and intention to take PrEP, and to address gender-based barriers to PrEP. Activities were informed by our theoretical framework and formative work with young women ages 18-25. We demonstrate how we developed a gender-enhanced online PrEP workshop that was interactive, group-based, and in accordance with elements of established successful intervention design; why WhatsApp emerged as the most accessible application for the young women in our workshop; and how an intervention with a hybrid approach-alternating between chat box and live sessions-combined with verbal, written, and emoji-based communication enabled interaction among participants.
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Fármacos Anti-HIV , COVID-19 , Infecções por HIV , Profilaxia Pré-Exposição , Humanos , Feminino , Adolescente , Adulto Jovem , Adulto , Infecções por HIV/prevenção & controle , África do Sul , Motivação , Fármacos Anti-HIV/uso terapêutico , Pandemias , COVID-19/prevenção & controleRESUMO
Objective: The 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. Methods: We 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. Results: Sixty 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. Conclusion: Women 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.
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BACKGROUND: Uptake of pre-exposure prophylaxis (PrEP) in the US has been limited. Evidence for why and how PrEP has been successfully integrated into some clinical settings, but not in others is minimal. To address this gap, we conducted a qualitative study to identify contextual factors that facilitated and challenged the implementation of PrEP services. SETTING: In partnership with the NYC Department of Health, we convened a planning committee with expertise with groups highly affected by the HIV epidemic employed in diverse health care settings, to guide the project. Representatives from programs within New York were targeted for participation initially and subsequently expanded nationally to enhance diversity in program type. METHODS: Using an interview guide informed by the Consolidated Framework for Implementation Research, we conducted 20 interviews with participants who successfully implemented PrEP programs in different settings (eg, primary care, emergency department, sexual health clinics), using different delivery models. We used template and matrix analysis to identify and characterize contextual determinants and implementation strategies. RESULTS: Participants frequently described determinants and strategies fluidly and conceptualized them in context-specific terms. Commonly discussed Consolidated Framework for Implementation Research constructs included implementation climate (tension for change, compatibility, relatively priority), stakeholders' knowledge (or lack thereof) and beliefs about PrEP, and costs associated with PrEP implementation. CONCLUSION: Our work identifies patterns in PrEP program implementation, describing how organizations dealt with determinants in their own context. Our research points to the need to connect rigorous implementation research with how frontline implementers conceptualize their work to inform and improve PrEP implementation.
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Fármacos Anti-HIV , Infecções por HIV , Profilaxia Pré-Exposição , Instituições de Assistência Ambulatorial , Fármacos Anti-HIV/uso terapêutico , Atenção à Saúde , Infecções por HIV/tratamento farmacológico , Infecções por HIV/prevenção & controle , Humanos , Pesquisa QualitativaRESUMO
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.
RESUMEN: 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% 0.550.96) comparada con PCV sin necesidades de transportación.
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Infecções por HIV , Viremia , Feminino , Infecções por HIV/complicações , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Habitação , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Viremia/epidemiologiaRESUMO
BACKGROUND: Use of HIV PrEP (pre-exposure prophylaxis) is a strategic tool in the effort to end the HIV epidemic. 20% of new HIV infections in the US are among cis-gender women, yet they comprise only 5% of all PrEP users. Black women disproportionately bear the burden of new HIV acquisition and accounted for almost 60% of new HIV diagnoses among women in 2018. Increasing understanding and uptake of PrEP among women at risk of HIV acquisition in alignment with their reproductive values and preferences is key to increasing PrEP uptake and decreasing HIV burden in this population. OBJECTIVE: This study examines how experiences with contraception among women of color shape their perceptions and preferences regarding HIV PrEP to inform counseling that aligns with their reproductive values. METHODS: Women aged 18-45 who self-identified as Black or Latina were recruited at an academic medical center in the Bronx from June 2018 to July 2019. We enrolled 30 participants seeking family planning care (10), prenatal care (10), or care for sexually transmitted infections (10). Participants completed a brief written survey assessing their risk of HIV acquisition. Semi-structured, face-to-face interviews were then audio-recorded, transcribed, and entered into Dedoose. Grounded theory and constant comparison approaches were used to analyze the data. RESULTS: Twenty-one participants (70%) screened positive for HIV acquisition risk. Four had received information on PrEP from a medical provider prior to the interview. Three themes emerged from the qualitative analysis: (1) Similar to oral contraception, women conceptualized PrEP as a "daily pill" to support their reproductive health; (2) Women perceived PrEP as a tool to support autonomy and pleasure in their sexual health; (3) Like birth control, women desired multiple delivery options for HIV prophylaxis. CONCLUSIONS: Contraception may serve as a frame of reference when counseling about PrEP among cis-women at risk of acquiring HIV. Our study suggests that this approach re-contextualizes counseling on PrEP within a sex-positive framework that prioritizes pleasure, safety, and autonomy as integral to sexual and reproductive wellness. Consideration of historically marginalized women's experiences with contraception and reproductive values may facilitate their use of PrEP.
PrEP (pre-exposure prophylaxis) is a medicine taken daily by people at risk of getting HIV from sex or injection drug use. Although PrEP is a safe and effective medication for women, the use of PrEP remains exceedingly low among cis-gender women at risk of HIV in the US. This study examines how experiences with contraception among women of color, who disproportionately bear the burden of HIV acquisition, shape their perceptions and preferences regarding PrEP. We interviewed 30 women who self-identified as Black or Latina at an academic medical center in the Bronx. Similar to oral contraception, women in this study conceptualized PrEP as a "daily pill" to support their reproductive health. This report details how women's experiences with contraception may serve as the foundation to re-contextualize conversations on PrEP within a sex-positive framework that prioritizes pleasure, safety, and autonomy as integral to sexual and reproductive wellness.
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Fármacos Anti-HIV , Infecções por HIV , Profilaxia Pré-Exposição , Fármacos Anti-HIV/uso terapêutico , Anticoncepção , Serviços de Planejamento Familiar , Feminino , Infecções por HIV/tratamento farmacológico , Infecções por HIV/prevenção & controle , Humanos , Gravidez , Comportamento SexualRESUMO
OBJECTIVE: 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. METHODS: 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. RESULTS: 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, Pâ¯=â¯.003) and confidence in both disease (22.5-23.96, Pâ¯=â¯.048) and pain management (25.07-26.61, Pâ¯=â¯.003) for youth with SCD. CONCLUSION: 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.
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Anemia Falciforme , Transição para Assistência do Adulto , Centros Médicos Acadêmicos , Adolescente , Anemia Falciforme/terapia , Criança , Humanos , Adulto JovemRESUMO
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.
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Fármacos Anti-HIV , Infecções por HIV , Profilaxia Pré-Exposição , Adolescente , Adulto , Fármacos Anti-HIV/uso terapêutico , Atitude , Infecções por HIV/prevenção & controle , Conhecimentos, Atitudes e Prática em Saúde , Homossexualidade Masculina , Humanos , Masculino , Estigma Social , Estados Unidos , Adulto JovemRESUMO
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.
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PURPOSE: Use 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. METHODS: GUÍA development occurred in five overlapping phases: formative research, content development, stakeholder/community member input, user interface design, and web application development. Development was informed by formative 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. RESULTS: NYCKidSeq 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. CONCLUSION: GUÍA communicates complex genomic information in an understandable and personalized manner. Initial piloting demonstrated GUÍA's utility for families enrolled in the NYCKidSeq pilot study. Findings from the NYCKidSeq clinical trial will provide insight into GUÍA's effectiveness in communicating results among diverse, multilingual populations.
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Revelação , Aconselhamento Genético , Criança , Testes Genéticos , Humanos , Pais , Projetos PilotoRESUMO
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.