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Older women with HIV face challenges to their quality of life, including neurocognitive decline, early-onset menopause, and chronic health issues. Chief among these concerns is depression, the most common psychiatric comorbidity among people living with HIV, with rates twice as high among women as men. However, tailored interventions among older women living with HIV and depression are lacking. Following the ADAPT-ITT framework to adapt existing interventions for cultural relevance among groups of people living with HIV, the study team revised an evidence-based intervention, the 'Stress Management and Relaxation Training/Expressive Supportive Therapy Women's Project (SMART/EST),' for online implementation. Working with two community stakeholders, the study team conducted focus groups, theater testing, and manual adaptation. This resulted in the development of e-SMART/EST, an online teletherapy group co-facilitated by a Licensed Psychologist and a credentialed Peer Counselor. The adapted, eight-session weekly intervention was tested with an exploratory pilot sample of eight older women (55 years and older) with HIV and depression. Participants rated the acceptability, feasibility, and appropriateness of the intervention, as well as symptoms of depression and HIV-related quality of life before and after the group. The e-SMART/EST Women's Project demonstrated high acceptability, feasibility, and appropriateness. Engagement was high, as women attended an average of 6.8 sessions. In qualitative interviews, participants reported peer co-facilitation, culturally relevant themes (e.g., HIV-related minority stress, critical consciousness, grief, and sex and pleasure), mindfulness techniques, and cohesion with other women as main favorable elements of the intervention. Barriers to online implementation included technological issues, distractions due to remote participation, and hindered emotional attunement compared with in-person group therapy. Findings support further research to test similar interventions in full-scale trials with older women living with depression and HIV.
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Parenting students constitute a significant portion of the college population, with 22% of undergraduate students nationwide managing the dual responsibilities of parenthood and education. Single-parenting students face disproportionate challenges to achieving academic success. This study examines the health, financial, and academic aspects of parenting students attending a large, urban public university, specifically comparing single parents to their married or cohabiting counterparts and non-parenting students in New York City. We collected data from 2104 participants, including 142 single parents and 119 married or cohabiting parents, through a cross-sectional survey. Using adjusted regression models, we evaluated the associations between parenting status and financial, health, and academic factors. Our findings reveal that, in comparison to non-parents, single parents are significantly more likely to carry debt (adjusted odds ratio [aOR] 1.81), rely on food assistance (aOR 5.03), and achieve slightly lower GPAs (ß - 0.11). Single parents also work more hours (aOR 1.66) and have an increased likelihood of facing debt (aOR 2.66), housing difficulties (aOR 2.80), food insecurity (aOR 2.21), and lower GPAs (ß - 0.22) compared to their married or cohabiting peers. The disaggregation of single and married or cohabiting parents reveals significant disparities, emphasizing the vulnerability of single-parenting students in higher education. Targeted interventions addressing issues like food security and housing are essential to support the academic success of single parents.
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Éxito Académico , Responsabilidad Parental , Estudiantes , Humanos , Femenino , Masculino , Estudiantes/estadística & datos numéricos , Estudios Transversales , Universidades , Ciudad de Nueva York , Adulto Joven , Adulto , Población Urbana , Estado de Salud , Factores Socioeconómicos , Padres Solteros/estadística & datos numéricos , AdolescenteRESUMEN
BACKGROUND: 'Treat All' policies recommending immediate antiretroviral therapy (ART) soon after HIV diagnosis for all people living with HIV (PLHIV) are now ubiquitous in sub-Saharan Africa. While early ART initiation and retention is effective at curtailing disease progression and transmission, evidence suggests that stigma may act as a barrier to engagement in care. This study sought to understand the relationships between HIV stigma and engagement in care for PLHIV in Rwanda in the context of Treat All. METHODS: Between September 2018 and March 2019, we conducted semi-structured, qualitative interviews with adult PLHIV receiving care at two health centers in Kigali, Rwanda. We used a grounded theory approach to data analysis to develop conceptual framework describing how stigma influences HIV care engagement in the context of early Treat All policy implementation in Rwanda. RESULTS: Among 37 participants, 27 (73%) were women and the median age was 31 years. Participants described how care engagement under Treat All, including taking medications and attending appointments, increased their visibility as PLHIV. This served to normalize HIV and use of ART but also led to high levels of anticipated stigma in the health center and community at early stages of treatment. Enacted stigma from family and community members and resultant internalized stigma acted as additional barriers to care engagement. Nonetheless, participants described how psychosocial support from care providers and family members helped them cope with stigma and promoted continued engagement in care. CONCLUSIONS: Treat All policy in Rwanda has heightened the visibility of HIV at the individual and social levels, which has influenced HIV stigma, normalization, psychosocial support and care engagement in complex ways. Leveraging the individual and community support described by PLHIV to deliver evidence-based, peer or provider-delivered stigma reduction interventions may aid in attaining Treat All goals.
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Cognición , Apoyo Comunitario , Adulto , Humanos , Femenino , Masculino , Rwanda , Investigación Cualitativa , Análisis de DatosRESUMEN
Community-based organizations (CBOs) deliver services in culturally-responsive ways, and could effectively partner with health centers to deliver HIV pre-exposure prophylaxis (PrEP) to Latino men who have sex with men (LMSM). However, few such models exist. We conducted a planning study in collaboration with three CBOs serving LMSM to identify optimal PrEP delivery strategies for health centers and CBOs to implement jointly. We established a Community Expert Panel (CEP) of eight client-facing CBO and health center staff. Over 6 months, the panel met monthly to identify collaborative strategies for PrEP delivery, using a modified Delphi method consisting of the following steps: (1) brainstorming strategies; (2) rating strategies on acceptability, appropriateness and feasibility; (3) review of data from qualitative focus group discussions with CBO clients; and (4) final strategy selection. The panel initially identified 25 potential strategies spread across three categories: improving communication between health centers and CBOs; using low-barrier PrEP options (e.g. telemedicine), and developing locally-relevant, culturally-sensitive outreach materials. Focus groups with CBO clients highlighted a desire for flexible options for PrEP-related care and emphasized trust in CBOs. The final package of strategies consisted of: (1) a web-based referral tool; (2) telemedicine appointments; (3) geographically-convenient options for lab specimen collection; (4) tailored print and social media; and (5) regular coaching sessions with CBO staff. Through a community-engaged process, we identified a package of PrEP delivery strategies that CBOs and health centers can implement in partnership, which have the potential to overcome barriers to PrEP for LMSM.
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Fármacos Anti-VIH , Infecciones por VIH , Profilaxis Pre-Exposición , Humanos , Masculino , Fármacos Anti-VIH/uso terapéutico , Centros Comunitarios de Salud , Consenso , Grupos Focales , Hispánicos o Latinos , Infecciones por VIH/prevención & control , Infecciones por VIH/tratamiento farmacológico , Homosexualidad MasculinaRESUMEN
When embarking on research within a community where little empirical research exists, the inclusion of a structured participant group-such as a steering committee or advisory board-can formalize the participant-research team partnership, increase community buy-in for action items, and reinforce the trustworthiness of research findings. These were among the aims of the multimethod design of the Student Parent Project, a qualitative study to determine the barriers and facilitators of academic achievement and well-being at six community colleges within a large, urban, public university system. The initial step of the study was to create a Student Advisory Board by recruiting one student parent from each of the participating campuses. The Student Advisory Board then met intermittently to review the research approach, data collection instruments, and preliminary findings at different stages. In this article, we describe the process of convening and collaborating with the advisory board and identify key areas in which their participation influenced the study design, findings, and recommendations. Based on lessons learned, we offer recommendations for the design and implementation of a participatory advisory board within qualitative studies.
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Investigación Participativa Basada en la Comunidad , Padres , Humanos , Investigación Participativa Basada en la Comunidad/métodos , Investigación Cualitativa , Estudiantes , InvestigadoresRESUMEN
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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Infecciones por VIH , Viremia , Femenino , Infecciones por VIH/complicaciones , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/epidemiología , Vivienda , Humanos , Masculino , Persona de Mediana Edad , Prevalencia , Viremia/epidemiologíaRESUMEN
In the United States, family formation decision-making is more complex than the predominant models that have been used to capture this phenomenon. Understanding the context in which a pregnancy occurs requires a more nuanced examination. In-depth interviews were conducted with 60 men and women, aged 18-35, who had children or were pregnant. Using grounded theory analysis, themes emerged that revealed participants' ideal criteria desired before pregnancy. We stratified by those who met and did not meet these criteria. Almost universally, participants shared ideal criteria: to graduate, gain financial stability, establish a relationship, and then become pregnant. Many participants did not accomplish these goals. Those who had not met their criteria had experienced traumatic childhoods and suffered economic concerns. For this group, having children prompted positive changes within their control, but financial stability remained limited. Efforts should focus on improving circumstances for all individuals to fulfill their criteria before pregnancy.
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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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Revelación , Asesoramiento Genético , Niño , Pruebas Genéticas , Humanos , Padres , Proyectos PilotoRESUMEN
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.
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Infecciones por VIH , Enfermedades de Transmisión Sexual , Adolescente , Condones , Femenino , Infecciones por VIH/prevención & control , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Conducta Sexual , Enfermedades de Transmisión Sexual/prevención & controlRESUMEN
BACKGROUND: Intentions-oriented approaches to measuring pregnancy do not necessarily align with how people view and approach pregnancy. Our objective was to obtain an in-depth understanding of the notions women and men hold regarding pregnancy. METHODS: We conducted semi-structured in-depth interviews with 176 heterosexual women and men ages 18-35, in the United States. Data were analyzed using grounded theory methodology. RESULTS: Participants described notions of getting pregnant in one of three ways. One group of participants used language that solely described pregnancy as a deliberate process, either premeditated or actively avoided. Another described pregnancy as a predetermined phenomenon, due to fate or something that 'just happens.' The third group represented a blending of both notions. CONCLUSIONS: Our findings underscore the need to shift the current paradigm of deliberate intentions to one that recognizes that pregnancy can also be viewed as predetermined. These findings can be used to improve measurement, health services, and better direct public health resources.
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Conducta Anticonceptiva/tendencias , Servicios de Planificación Familiar/métodos , Conocimientos, Actitudes y Práctica en Salud , Intención , Embarazo no Planeado , Conducta Reproductiva , Factores Socioeconómicos , Adolescente , Adulto , Femenino , Humanos , Relaciones Interpersonales , Masculino , Embarazo , Investigación Cualitativa , Adulto JovenRESUMEN
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.
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Fármacos Anti-VIH/administración & dosificación , Dispositivos Anticonceptivos Femeninos , Infecciones por VIH/prevención & control , Aceptación de la Atención de Salud , Profilaxis Pre-Exposición/métodos , Tenofovir/administración & dosificación , Adulto , Fármacos Anti-VIH/uso terapéutico , Estudios de Cohortes , Coito , Femenino , Humanos , Ciudad de Nueva York , Parejas Sexuales , Tenofovir/uso terapéuticoRESUMEN
OBJECTIVE: The aim of this study was to assess the performance of the nine-item Patient Health Questionnaire (PHQ-9) against psychiatrist diagnosis in people with HIV (PWH). DESIGN: Cross-sectional analysis of data collected between January 2018 and July 2022 across five sites in Cameroon, Cote d'Ivoire, Kenya, Senegal, and the Republic of Congo. Participants were ≥18âyears and receiving HIV care at the participating site. PHQ-9 was administered by study staff followed by a psychiatrist's evaluation within 3âdays. RESULTS: Overall, 778 participants with complete data were included: 297 (38.2%) in Cameroon, 132 (17.0%) in Congo, 148 (19.0%) in Cote d'Ivoire, 98 (12.6%) in Kenya, and 103 (13.2%) in Senegal. The area under the curve for PHQ-9 score was generally high ranging from 0.935 [95% confidence interval (CI): 0.893, 0.977] in Cote d'Ivoire to 0.768 (95% CI: 0.589, 0.947) in Congo. However, for the common cut-off score ≥10, sensitivity was low: 50% or lower in Cameroon, Congo and Senegal, 66.7% in Kenya and 70.6% in Cote d'Ivoire. But negative predictive values (NPV) were high: 98.9% (95% CI: 96.9%, 99.8%) in Cameroon, 96.1 (95% CI: 91.1, 98.7) in Cote d'Ivoire, 96.3% (95% CI: 89.7%, 99.2%) in Kenya, 95.7% (95% CI: 90.2%, 98.6%) in Congo, and 89.0% (95% CI: 81.2%, 94.4%) in Senegal. INTERPRETATION: Across all countries, PHQ-9 score ≥10 performed very poorly (low sensitivity) as a tool to identify psychiatrist diagnosed depression. However, the observed high NPV suggests it can be used to rule out depression.
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Depresión , Infecciones por VIH , Cuestionario de Salud del Paciente , Humanos , Masculino , Femenino , Adulto , Estudios Transversales , Infecciones por VIH/complicaciones , Infecciones por VIH/psicología , Infecciones por VIH/diagnóstico , Persona de Mediana Edad , Depresión/diagnóstico , Adulto Joven , Sensibilidad y Especificidad , AdolescenteRESUMEN
OBJECTIVE: We examined socioeconomic, academic, and health-related factors associated with respondent reports that childcare interfered with academics. PARTICIPANTS: 176 undergraduate student parents. METHODS: We administered a cross-sectional survey to a representative sample of students at a public university in New York City. Using a sub-set of those who reported being parents/guardians (n = 176), we conducted bivariate analyses to assess factors associated with childcare problems interfering with school. RESULTS: About 30% of the sample reported that childcare interfered with school somewhat/moderately/a lot in the last year. Compared to those with no/little perceived interference, they were significantly more likely to need mental health treatment (30% vs. 13%; p < 0.01), worry that they would run out of food sometimes/often (32% vs. 16%; p < 0.01), and experience housing problems (26% vs. 9%; p < 0.01). CONCLUSIONS: Offering mental healthcare and services addressing food and housing insecurity can help college students to navigate challenges inherent to being a student parent.
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Éxito Académico , Niño , Humanos , Embarazo , Femenino , Estudiantes/psicología , Cuidado del Niño , Estudios Transversales , Universidades , Abastecimiento de AlimentosRESUMEN
Introduction: The aim of this study was to describe the sexual and reproductive goals of female adolescents with human immunodeficiency virus (HIV) in an urban cohort and decipher if they vary depending on the mode of HIV acquisition. Methods: We conducted in-depth qualitative interviews with 25 Black and/or Hispanic/Latinx female adolescents living with HIV (14 perinatally, 11 behaviourally acquired) aged 17-25 years who have access to care and antiretroviral therapy at an urban public hospitals (NYC, NY). Interviews were transcribed, coded and analysed using thematic analysis. Results: Interviews demonstrated that access to antiretroviral therapy and HIV disclosure to a sexual partner were critical aspects of sexual health for the majority of participants. Persons with perinatal HIV defined motherhood as a source of self-validation and were confident that antiretroviral therapy prevents HIV transmission. Persons with behaviourally acquired HIV viewed their status as an insurmountable barrier that will prevent them from attaining sexual intimacy with a partner and expressed persistent concerns about HIV transmission during pregnancy despite reassurance from medical providers. Conclusion: Sexual and reproductive perspectives of adolescents/young women living with HIV are multifactorial, highly stigmatized, and likely influenced by the mode of HIV acquisition. This population may benefit from patient-centred care models, including sexual health counselling that addresses sexual agency, intimacy, parenting and transmission risk reduction.
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BACKGROUND: Correctional facilities increasingly offer medications for opioid use disorder (OUD), including buprenorphine. Nevertheless, retention in treatment post-incarceration is suboptimal and overdose mortality remains high. Our objectives were to understand how incarcerated patients viewed buprenorphine treatment and identify modifiable factors that influenced treatment continuation post-release. METHODS: We conducted semi-structured interviews with 22 men receiving buprenorphine treatment in an urban jail. Interviews were audio recorded, professionally transcribed, and analyzed using a grounded-theory approach. Team members constructed preliminary case memos from transcripts, and then interactively discussed themes within respective memos. We established participant 'typologies' by consensus. RESULTS: Distinct typologies emerged based on participants' post-release treatment goals: (1) those who viewed buprenorphine treatment as a cure for OUD; (2) those who thought buprenorphine would help manage opioid-related problems; and (3) those who did not desire OUD treatment. Participants also described common social structural barriers to treatment continuation and community re-integration. Participants reported that post-release housing instability, unemployment, and negative interactions with parole contributed to opioid use relapse and re-incarceration. CONCLUSION: Participants had different goals for post-release buprenorphine treatment continuation, but their prior experiences suggested that social structural issues would complicate these plans. Incarceration can intensify marginalization, which when combined with heightened legal supervision, reinforced cycles of release, relapse, and re-incarceration. Participants valued buprenorphine treatment, but other structural and policy changes will be necessary to reduce incarceration-related inequities in opioid overdose mortality.
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Buprenorfina , Trastornos Relacionados con Opioides , Prisioneros , Buprenorfina/uso terapéutico , Objetivos , Humanos , Cárceles Locales , Masculino , Tratamiento de Sustitución de Opiáceos , Trastornos Relacionados con Opioides/tratamiento farmacológicoRESUMEN
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.
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Motivación , Padres , Niño , Asesoramiento Genético , Pruebas Genéticas , Humanos , Ciudad de Nueva YorkRESUMEN
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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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.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.
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Pruebas Genéticas , Genómica , Niño , Humanos , Ciudad de Nueva York , Padres , Proyectos Piloto , Ensayos Clínicos Controlados Aleatorios como Asunto , Receptores Huérfanos Similares al Receptor Tirosina Quinasa , Adulto JovenRESUMEN
BACKGROUND AND OBJECTIVES: Youth carry a disproportionate burden of new HIV infections. With our study, we aimed to characterize HIV testing experiences among adolescents and young adults admitted to a children's hospital that is located in a high HIV-prevalent community and implemented routine HIV testing for all patients ≥13 years of age. METHODS: A total of 120 patients aged 13 to 24 years old who were admitted to our hospital and had a documented offer of routine HIV testing on admission were invited to complete a self-administered survey that asked about sex, race and/or ethnicity, HIV risk behaviors, and attitudes toward routine HIV testing in the hospital. Date of birth, admission diagnosis, and verification of HIV testing and results were collected by chart review. RESULTS: Study participants (N = 99) were 17.4 ± 2.3 years old, 52% female, 47% Hispanic, and 29% African American. Additional characteristics include the following: 65% had previous sexual activity, 11% had a history of sexually transmitted infections, and 12% were worried about their risk for HIV. Forty-seven percent of participants accepted HIV testing, with older patients (P < .01) and those reporting previous sexual activity (P < .01) and a previous HIV test (P < .01) being more likely to accept testing. A total of 96% of participants agreed that the hospital is a good place to offer HIV testing. CONCLUSIONS: Our findings support offering routine HIV testing to youth admitted to children's hospital. Given the high incidence of new and undiagnosed HIV infections among youth, additional venues for HIV testing are essential.