The Gender Self-Report: A multidimensional gender characterization tool for gender-diverse and cisgender youth and adults.

Gender identity is a core component of human experience, critical to account for in broad health, development, psychosocial research, and clinical practice. Yet, the psychometric characterization of gender has been impeded due to challenges in modeling the myriad gender self-descriptors, statistical power limitations related to multigroup analyses, and equity-related concerns regarding the accessibility of complex gender terminology. Therefore, this initiative employed an iterative multi-community-driven process to develop the Gender Self-Report (GSR), a multidimensional gender characterization tool, accessible to youth and adults, nonautistic and autistic people, and gender-diverse and cisgender individuals.

Shifts in Gender-Related Medical Requests by Transgender and Gender-Diverse Adolescents.

Purpose: Gender-affirming hormones and/or surgeries seeking to change the body can have potentially lasting effects. Changes in requests for these therapies among gender-diverse youth are not well-understood. The study aim is to characterize factors associated with shifts in gender-related medical requests.

Barriers and Facilitators to HIV Testing Among Adolescents and Young Adults in Washington, District of Columbia: Formative Research to Inform the Development of an mHealth Intervention.

Background: Adolescents and young adults (AYA) in the United States, and in Washington, District of Columbia (DC), specifically, are disproportionately affected by HIV. Both the national Ending the HIV Epidemic initiative and DC-specific plans emphasize HIV testing, and innovative strategies to encourage testing among AYA are needed.

Objective: The purpose of this study is to identify sexual behaviors, HIV knowledge, HIV perceptions (eg, susceptibility and severity), and perceived barriers and facilitators to HIV testing among AYA at risk for HIV in DC.

A Digital Gaming Intervention to Improve HIV Testing for Adolescents and Young Adults: Protocol for Development and a Pilot Randomized Controlled Trial.

Background: Two strategies of the US Ending the HIV Epidemic initiative are early diagnosis of infections via widespread testing and prevention of new infections using pre-exposure prophylaxis (PrEP). These strategies are particularly important for adolescents and young adults (AYAs) who are disproportionately affected by HIV, particularly if they identify as Black and/or lesbian, gay, bisexual, transgender, queer or questioning, and others (LGBTQ+). This study will develop and test an interactive life-simulation game in which players can enact real-life behaviors and receive their HIV risk profile to improve HIV testing and PrEP access among AYAs aged 13-24 years in Washington, DC.

Advance Care Planning-Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT.

Context: The effect of advance care planning (ACP) interventions on the trajectory of end-of-life treatment preference congruence between patients and surrogate decision-makers is unstudied.

Objective: To identify unobserved distinctive patterns of congruence trajectories and examine how the typology of outcome development differed between ACP and controls.

Methods: Multisite, assessor-blinded, intent-to-treat, randomized clinical trial enrolled participants between October 2013 to March 2017 from 5 hospital-based HIV clinics.

What Do Adults With HIV Want? End-of-Life Care Goals, Values and Beliefs by Gender, Race, Sexual Orientation.

Objective: We examined factors influencing end-of-life care preferences among persons living with HIV (PLWH).

Methods: 223 PLWH were enrolled from 5 hospital-based clinics in Washington, DC. They completed an end-of-life care survey at baseline of the FACE™-HIV Advance Care Planning clinical trial.

Recruitment of Youth Living With HIV to Optimize Adherence and Virologic Suppression: Testing the Design of Technology-Based Community Health Nursing to Improve Antiretroviral Therapy (ART) Clinical Trials.

Background: Despite advances in HIV diagnosis and treatment, adolescents and young adults 12-25 years old have high HIV incidence, poor engagement and retention in treatment, and low rates of adherence and virologic suppression when compared to their older counterparts. HIV has emerged as a chronic disease for which antiretroviral therapy (ART) adherence is critical for virologic suppression and long-term survival. Virologic suppression has been elusive for many youth with HIV (YHIV).

The Effect of FAmily-CEntered (FACE) Pediatric Advanced Care Planning Intervention on Family Anxiety: A Randomized Controlled Clinical Trial for Adolescents With HIV and Their Families.

Clinicians fear pediatric advance care planning (pACP) for adolescents is too distressing for families. Multisite longitudinal randomized controlled trial of adolescents with HIV tested the effect of FAmily-CEntered (FACE) pACP intervention on families' anxiety and depression. One hundred five adolescent/family dyads were randomized to FACE ( = 54 dyads) or control ( = 51 dyads).

Providing Unique Support for Health Study Among Young Black and Latinx Men Who Have Sex With Men and Young Black and Latinx Transgender Women Living in 3 Urban Cities in the United States: Protocol for a Coach-Based Mobile-Enhanced Randomized Control Trial.

Background: The US National HIV/AIDS Strategy 2020 calls for increasing access to care, improving outcomes of people living with HIV, and targeting biomedical prevention efforts, including access to pre-exposure prophylaxis (PrEP) in communities where HIV is most heavily concentrated. The cities of Baltimore, Maryland (MD); Washington, DC; and Philadelphia, Pennsylvania (PA) are disproportionately burdened by high rates of new cases of HIV infection, with high prevalence among young Black and Latinx men who have sex with men (YBLMSM) and young Black and Latinx transgender women (YBLTW) aged 15-24 years.

Objective: This study aims (1) to identify and recruit YBLMSM and YBLTW who are at risk or living with HIV in Baltimore, MD; Philadelphia, PA; and Washington, DC, using respondent-driven sampling (RDS) with targeted seed selection, and (2) to assess the efficacy of a coach-based mobile-enhanced intervention (MEI) compared with standard of care (SOC) to increase successful engagement and retention into HIV, PrEP, and substance use treatment care across the HIV care and prevention continua in 3 Mid-Atlantic cities.

Effect of FAmily CEntered (FACE®) Advance Care Planning on Longitudinal Congruence in End-of-Life Treatment Preferences: A Randomized Clinical Trial.

Trial tested effect of advance care planning on family/surrogates' understanding of patients' end-of-life treatment preferences longitudinally. A multisite, assessor-blinded, intent-to-treat, parallel-group, randomized controlled clinical trial in five hospital-based HIV clinics enrolled 449 participants aged 22 to 77 years during October 2013-March 2017. Patients living with HIV/family dyads were randomized at 2:1 ratio to 2 weekly ~ 60-min sessions either ACP (n = 155 dyads)-(1) ACP facilitated conversation, (2) Advance directive completion; or Control (n = 68 dyads)-(1) Developmental/relationship history, (2) Nutrition/exercise tips.

Development, Refinement, and Acceptability of Digital Gaming to Improve HIV Testing Among Adolescents and Young Adults at Risk for HIV.

Adolescents and young adults (AYAs) account for >20% of new HIV diagnoses in the United States, yet >50% are unaware of their infection. Digital gaming is widespread among youth and has proven efficacious in other disease areas; thus, we sought to determine whether a life-and-dating simulation game to increase HIV testing would be acceptable among AYAs. Focus groups and surveys were administered to health care providers and AYAs in Washington, DC.

The influence of religious beliefs and practices on health care decision-making among HIV positive adolescents.

It is unknown if religiousness/spirituality influences end-of-life treatment preferences among adolescents. Investigators assessed whether religiousness/spirituality moderates the relationship between an advance care planning intervention and end-of-life treatment preferences among 85 primarily African-American adolescents living with HIV/AIDS in outpatient-hospital-based HIV-specialty clinics in the United States. Adolescents aged 14-21 years living with HIV/AIDS and their families were randomized to three-weekly-60-minute sessions either: advance care planning (survey, goals of care conversation, advance directive); or control (developmental history, safety tips, nutrition/exercise).

FAmily-CEntered (FACE) Advance Care Planning Among African-American and Non-African-American Adults Living With HIV in Washington, DC: A Randomized Controlled Trial to Increase Documentation and Health Equity.

Context: No prospective studies address disease-specific advance care planning (ACP) for adults living with HIV/AIDS.

Objective: To examine the efficacy of FAmily-CEntered (FACE) ACP in increasing ACP and advance directive documentation in the medical record.

Methods: Longitudinal, two-arm, randomized controlled trial with intent-to-treat design recruited from five hospital-based outpatient HIV clinics in Washington, DC.

Advance Care Planning and HIV Symptoms in Adolescence.

Objectives: To determine the effect of family-centered pediatric advance care planning (FACE pACP) on HIV-specific symptoms.

Methods: In this single-blinded, randomized controlled trial conducted at 6 US hospital-based HIV clinics, 105 adolescent-family dyads, randomly assigned from July 2011 to June 2014, received 3 weekly sessions in either the FACE pACP arm ([1] pediatric advance care planning survey, [2] Respecting Choices interview, and [3] 5 Wishes directive) or the control arm ([1] developmental history, [2] safety tips, and [3] nutrition and exercise tips). The General Health Assessment for Children measured patient-reported HIV-specific symptoms.

Perceptions of Health Care Transition Care Coordination in Patients With Chronic Illness.

Objectives: Expert consensus jointly authored in 2011 by the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians supports the use of health care transition (HCT) care coordination (CC). Although gaps in care are addressed in these practice-based implementation recommendations, such recommendations have never undergone rigorous assessment. We assessed the effectiveness of implementation on quality of chronic illness care and CC during HCT for adolescents and young adults.

Experiences of Young Parents with Perinatally Acquired HIV.

This research explores the perceptions of adolescents and young adults (AYA) living with perinatally acquired HIV (PHIV) as they transition into parenthood. We conducted hour-long, semistructured audio-recorded interviews with a purposive sample of 17 AYA parents with PHIV who were current or former patients at two US pediatric/adolescent infectious diseases clinics. Participants were asked about challenges/rewards of parenting and anticipated future fertility desires/intentions.

A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning.

The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14-21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities.

Adolescents' Perceptions of Transition Importance, Readiness, and Likelihood of Future Success: The Role of Anticipatory Guidance.

Expert consensus supports anticipatory guidance around health care transition (HCT), but little is known about its impact on adolescents' perceptions of HCT. This study aimed to evaluate the frequency of HCT anticipatory guidance delivery and the effect it had on participants' perceptions of HCT. Adolescents (n = 209) with special health care needs were administered National Survey for Children with Special Health Care Needs transition assessment questions, then reported perceptions of transition importance, readiness, and likely future success.

"When Should I Tell?": Perspectives on Disclosure to Their Children among Parents with Perinatally Acquired HIV.

Adolescents and young adults (AYA) with perinatally acquired HIV (PHIV) engage in developmentally expected behaviors, such as establishing relationships and having children. Previous research has focused on pregnancy management/outcomes of AYA with PHIV. However, little research has focused on the parenting experiences of this emerging cohort and on their views of disclosure to their offspring.

Disparities in achieving and sustaining viral suppression among a large cohort of HIV-infected persons in care - Washington, DC.

One goal of the HIV care continuum is achieving viral suppression (VS), yet disparities in suppression exist among subpopulations of HIV-infected persons. We sought to identify disparities in both the ability to achieve and sustain VS among an urban cohort of HIV-infected persons in care. Data from HIV-infected persons enrolled at the 13 DC Cohort study clinical sites between January 2011 and June 2014 were analyzed.

Human Immunodeficiency Virus: Adolescent Emergencies.

Many adolescents are at high risk for HIV infection, and those who are infected or at-risk commonly present to the ED, often as their only or frequent source of care. It is important to consider routine screening and to have a high index of suspicion for AHI in this setting. If a diagnosis of HIV infection is made, immediate linkage to care with a specialist in adolescent and young adult HIV infection should be prioritized.

Health literacy and medication adherence in adolescents.

Objective: To assess the relationship between health literacy levels and medication adherence in adolescents.

Study Design: A convenience sample of adolescents ages 12-21 years was recruited April-September 2011 at an urban adolescent health center. Health literacy and medication adherence was measured via the Rapid Estimate of Adult Literacy in Medicine-TEEN (REALM-TEEN) and Adherence to Refills and Medications Scale.

Adolescent use of the emergency department instead of the primary care provider: who, why, and how urgent?

Purpose: Adolescents frequently rely on emergency medical care, rather than using primary care providers (PCPs). Our objectives were to characterize a population of adolescents presenting to a large, urban emergency department (ED) and to examine the reasons why they present to the ED, rather than to their PCP's office.

Methods: Adolescents ages 12 to 21 years and their parents/guardians were invited to participate and asked to complete a brief online survey.