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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. ACP families/surrogates were more likely to accurately report patients' treatment preferences at Time 1 (T1) and 12 months post-intervention (T2) compared to controls, experiencing high congruence longitudinally (highâhigh transition), [63·6% vs 37·7% (difference = 25·9%, 95% CI: 11·3%, 40·4%, χ2 = 11·52, p = 0·01)], even as patients' preferences changed over time. ACP families/surrogates had eight times the odds of controls of having an excellent understanding of patients' treatment preferences (Adjusted Odds Ratio 7.91, 95%CI: 3.08, 20.3). Conversations matter.
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Planificación Anticipada de Atención , Infecciones por VIH , Cuidado Terminal , Adulto , Anciano , Toma de Decisiones , Familia , Infecciones por VIH/terapia , Humanos , Persona de Mediana Edad , Adulto JovenRESUMEN
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). At 3-months post-intervention the intervention effect (decreasing the likelihood of choosing to continue treatments in all situations) was significantly moderated by religiousness/spirituality. Highly religious/spiritual adolescents were four times more likely to choose to continue treatments in all situations. Thus, intensive treatments at end-of-life may represent health equity, rather than health disparity. The belief believed that HIV is a punishment from God at baseline (15%, 14/94) was not associated with end-of-life treatment preferences. Twelve percent (11/94) reported they had stopped taking HIV medications for more than 3 days because of the belief in a miracle. Religiousness moderates adolescent's medical decision-making. Adolescents who believe in miracles should receive chaplaincy referrals to help maintain medication adherence.
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Infecciones por VIH , Adolescente , Adulto , Planificación Anticipada de Atención , Directivas Anticipadas , Femenino , Infecciones por VIH/tratamiento farmacológico , Humanos , Masculino , Religión , Espiritualidad , Estados Unidos , Adulto JovenRESUMEN
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® (n = 54 dyads) or control (n = 51 dyads). Families were 90% African American, 37% HIV-positive, and 22% less than high school educated. Families reported lower anxiety 3 months post-FACE® intervention than control (ß = -4.71, 95% confidence interval [CI] = [-8.20, -1.23], p = .008). Male family members were less anxious than female family members (ß = -4.55, 95% CI = [-6.96, -2.138], p ≤ .001). Family members living with HIV reported greater depressive symptoms than HIV-uninfected families (ß = 3.32, 95% CI = [0.254, 6.38], p = .034). Clinicians can be assured this structured, facilitated FACE® pACP model minimized family anxiety without increasing depressive symptoms. Adolescent/family dyads should be invited to have access to, and provision of, evidence-based pACP as part of patient-centered/family-supported care in the HIV continuum of care.
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Planificación Anticipada de Atención/normas , Directivas Anticipadas/psicología , Trastornos de Ansiedad/enfermería , Trastorno Depresivo/enfermería , Enfermería de la Familia/normas , Familia/psicología , Infecciones por VIH/psicología , Pediatría/normas , Adolescente , Adulto , Negro o Afroamericano/psicología , Toma de Decisiones , Femenino , Infecciones por VIH/enfermería , Humanos , Masculino , Guías de Práctica Clínica como Asunto , Encuestas y Cuestionarios , Población Blanca/psicologíaRESUMEN
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. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14-21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.
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Planificación Anticipada de Atención , Directivas Anticipadas/psicología , Toma de Decisiones , Familia/psicología , Infecciones por VIH/terapia , Síndrome de Inmunodeficiencia Adquirida , Adolescente , Niño , Comunicación , Femenino , Infecciones por VIH/psicología , Hospitales Pediátricos , Humanos , Masculino , Aceptación de la Atención de Salud , Método Simple Ciego , Encuestas y Cuestionarios , Adulto JovenRESUMEN
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. Univariate and multivariate logistic regression were conducted to identify factors associated with achieving VS (viral load < 200 copies/ml) at least once, and Kaplan-Meier (KM) curves and Cox proportional hazards models were used to identify factors associated with sustaining VS and time to virologic failure (VL ≥ 200 copies/ml after achievement of VS). Among the 4311 participants, 95.4% were either virally suppressed at study enrollment or able to achieve VS during the follow-up period. In multivariate analyses, achieving VS was significantly associated with age (aOR: 1.04; 95%CI: 1.03-1.06 per five-year increase) and having a higher CD4 (aOR: 1.05, 95% CI 1.04-1.06 per 100 cells/mm(3)). Patients infected through perinatal transmission were less likely to achieve VS compared to MSM patients (aOR: 0.63, 95% CI 0.51-0.79). Once achieved, most participants (74.4%) sustained VS during follow-up. Blacks and perinatally infected persons were less likely to have sustained VS in KM survival analysis (log rank chi-square p ≤ .001 for both) compared to other races and risk groups. Earlier time to failure was observed among females, Blacks, publically insured, perinatally infected, those with longer standing HIV infection, and those with diagnoses of mental health issues or depression. Among this HIV-infected cohort, most people achieved and maintained VS; however, disparities exist with regard to patient age, race, HIV transmission risk, and co-morbid conditions. Identifying populations with disparate outcomes allows for appropriate targeting of resources to improve outcomes along the care continuum.
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Infecciones por VIH/transmisión , Infecciones por VIH/virología , Disparidades en el Estado de Salud , Transmisión Vertical de Enfermedad Infecciosa , Respuesta Virológica Sostenida , Adulto , Factores de Edad , Recuento de Linfocito CD4 , Estudios de Cohortes , District of Columbia , Femenino , Infecciones por VIH/inmunología , Humanos , Estimación de Kaplan-Meier , Masculino , Persona de Mediana Edad , Grupos Raciales , Factores Sexuales , Población Urbana , Carga Viral , Adulto JovenRESUMEN
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. The interrelated effects of age, sex, chronic illness, learning disability, health rating, and health literacy on adherence to medication were explored via the use of regression trees. RESULTS: Of 138 adolescents surveyed, 112 (81%) were included in the analysis because they reported ever taking a medication and completed all survey questions. Median participant age was 16.1 years, 94% were African American, and 64% were female. Median REALM-TEEN score was 57 (6th-7th grade; range 0-66). Median ARMS score was 21 (poor; range 0-56). A positive correlation was found between worse adherence (greater ARMS scores) and self-report of a learning disability (P = .041), and between ARMS scores and having a chronic illness (P = .003). The ARMS and REALM-TEEN scores were not correlated (P = .069). Regression tree analysis indicated that adolescents with both a chronic illness and a learning disability had worse ARMS scores (median score 24), compared with adolescents having only a chronic illness (median score 22), independent of health literacy scores. CONCLUSION: Almost one-quarter of adolescents reported having a learning disability and had worse medication adherence independent of health literacy levels. This finding suggests other cognitive factors, beyond reading, may play a role in medication adherence.
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Alfabetización en Salud/estadística & datos numéricos , Cumplimiento de la Medicación/estadística & datos numéricos , Adolescente , Niño , Femenino , Humanos , Masculino , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Congruence in spirituality between HIV+ adolescent (n = 40)/family (n = 40) dyads and psychological adjustment and quality of life were assessed, using the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy, Beck Depression Inventory-II, Beck Anxiety Inventory and Pediatric Quality of Life Inventory at baseline and 3-month post-intervention. Adolescents were 60 % female and 92 % African American. Congruence in spirituality between adolescent/surrogate dyads remained unchanged at 3 months. High congruence existed for "having a reason for living"; rejection of "life lacks meaning/purpose" and "HIV is a punishment from God." Adolescents were less likely to forgive the harm others caused them than their families.
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Familia/psicología , Infecciones por VIH/psicología , Calidad de Vida/psicología , Religión y Medicina , Rol del Enfermo , Espiritualidad , Adaptación Psicológica , Adolescente , Trastornos de Ansiedad/diagnóstico , Trastornos de Ansiedad/psicología , Trastornos de Ansiedad/terapia , Trastorno Depresivo/diagnóstico , Trastorno Depresivo/psicología , Trastorno Depresivo/terapia , Femenino , Perdón , Infecciones por VIH/congénito , Infecciones por VIH/terapia , Humanos , Masculino , Motivación , Inventario de Personalidad/estadística & datos numéricos , Psicometría , CastigoRESUMEN
The aims of the study were (1) to determine whether adolescents find it acceptable to have physicians explore their spiritual beliefs as part of their medical care, (2) to characterize the role of spirituality and religious beliefs in adolescents with and without HIV, and (3) to examine associations between spirituality/religion and quality of life. Adolescents receiving their medical care at an urban Adolescent Health Clinic completed a study-specific questionnaire about spiritual inquiry by their physician, the Brief Multidimensional Measurement of Religiousness/Spirituality, and the Pediatric Quality of Life Inventory 4.0. Chi-squared analysis, Fischer's exact test, and t tests were used to assess associations. A total of 45 participants enrolled: 19 HIV+ (53% vertical transmission) and 26 HIV-; mean age 17.2 years; 80% African American. Four out of 45 (9%) had ever been asked by their doctor about their spiritual/religious beliefs, and only 8 (18%) had ever shared these beliefs with their healthcare provider. Most teens wanted their provider to ask them about their spiritual beliefs during some visits, especially when dealing with death/dying or chronic illness (67%). Those with HIV were more likely to endorse wanting their doctors to pray with them (42% vs. 15%), feeling "God's presence" (Mean = 3.95 vs. 2.83), being "part of a larger force" (Mean = 2.58 vs. 1.69), and feeling "God had abandoned them" (Mean = 1.63 vs. 1.15). There are certain circumstances in which healthcare providers should include a spiritual history with teenage patients. Few differences emerged in the teens studied with and without HIV.
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Conducta del Adolescente/psicología , Actitud Frente a la Salud , Infecciones por VIH/psicología , Relaciones Médico-Paciente , Religión y Psicología , Adolescente , Negro o Afroamericano/psicología , Estudios Transversales , Femenino , Humanos , Masculino , Calidad de Vida/psicología , Espiritualidad , Encuestas y Cuestionarios , Población UrbanaRESUMEN
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. METHODS: This mixed-methods study used retrospective chart review and qualitative interviews with clinicians. Of 130 youth receiving clinical gender care at Children's National Hospital, 68 met inclusion criteria. Qualitative interview analysis was performed to identify patterns and themes around shifts in gender-related medical requests over time. Statistical analysis employed chi-square and t-tests to compare characteristics in the shift versus no-shift groups and kappa statistics to calculate qualitative coding agreement. RESULTS: Of the 68 youth followed over time (mean age 15.11 years, 47% autistic, 22% nonbinary), 20 (29%) reported a shift in request. No significant differences were found by age, autism status, or designated sex at birth. More youth with shifts were nonbinary (p = .012). Six shift profiles were identified from qualitative interviews with excellent reliability (κ = 0.865). Four of the profiles reflect shifts in request prior to starting treatment (85% sample); two involved shifts after commencing treatment (15%). The most common profile reflected a medical request that was made, withdrawn, and re-requested (45%). DISCUSSION: Shifts in gender-affirming medical requests by gender-diverse youth may not be uncommon during the adolescent's gender discernment process, and may more likely occur among nonbinary youth. Many individuals who experience shifts away from medical treatment may later resume the request.
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Personas Transgénero , Transexualidad , Niño , Recién Nacido , Humanos , Adolescente , Estudios Retrospectivos , Reproducibilidad de los Resultados , Identidad de GéneroRESUMEN
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. In Study 1, the GSR was administered to 1,654 individuals, sampled through seven diversified recruitments to be representative across age (10-77 years), gender and sexuality diversity (â¼33% each gender diverse, cisgender sexual minority, cisgender heterosexual), and autism status (> 33% autistic). A random half-split subsample was subjected to exploratory factor analytics, followed by confirmatory analytics in the full sample. Two stable factors emerged: Nonbinary Gender Diversity and Female-Male Continuum (FMC). FMC was transformed to Binary Gender Diversity based on designated sex at birth to reduce collinearity with designated sex at birth. Differential item functioning by age and autism status was employed to reduce item-response bias. Factors were internally reliable. Study 2 demonstrated the construct, convergent, and ecological validity of GSR factors. Of the 30 hypothesized validation comparisons, 26 were confirmed. The GSR provides a community-developed gender advocacy tool with 30 self-report items that avoid complex gender-related "insider" language and characterize diverse populations across continuous multidimensional binary and nonbinary gender traits. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
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Trastorno Autístico , Minorías Sexuales y de Género , Recién Nacido , Humanos , Femenino , Adolescente , Adulto , Masculino , Niño , Adulto Joven , Persona de Mediana Edad , Anciano , Identidad de Género , Autoinforme , Conducta Sexual , SexualidadRESUMEN
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. METHODS: This study was part of a larger study to determine the acceptability of using a life-and-dating simulation game to increase HIV testing among AYA. Focus groups and surveys stratified by self-reported sexual orientation were conducted among, and administered to, AYA aged 13-24 years in DC. HIV knowledge was explored during focus groups and measured using an adapted version of the Brief HIV Knowledge Questionnaire. Survey data were summarized using descriptive statistics and compared by self-reported sexual orientation. Transcripts were thematically analyzed. RESULTS: Of the 46 AYA who participated in the focus groups, 30 (65%) identified as heterosexual and 16 (35%) as lesbian, gay, bisexual, transgender, or queer. A higher proportion of lesbian, gay, bisexual, transgender, or queer AYA reported sexual activity (12/16, 75%, vs 18/30, 60%), condomless sex (11/12, 92%, vs 15/18, 83%), and HIV testing (13/16, 81%, vs 17/29, 58%) than heterosexual AYA. HIV prevention ("condoms" and "...PrEP") and transmission ("exchange of fluids") knowledge was high, and most (34/44, 77%) of the AYA perceived HIV testing as beneficial. However, the AYA also demonstrated some misinformation concerning HIV: an average of 67% (31/46; SD 0.474) of the participants believed that an HIV test could deliver accurate results 1 week after a potential exposure and an average of 72% (33/46; SD 0.455) believed that an HIV vaccine exists. The AYA also identified individual ("...people...are scared"), interpersonal ("it's an awkward conversation"), and structural ("...people don't...know where they can go") barriers to testing. Most of the AYA indicated that they were very likely to use the demonstrated game prototype to help with getting tested for HIV (median 3.0, IQR 2.0-3.0, using a scale ranging from 0 to 3, with 3 indicating high likelihood) and strongly agreed that the game was interesting (median 5.0, IQR 5.0-5.0), fun (median 5.0, IQR 4.0-5.0), and easy to learn (median 5.0, IQR 5.0-5.0, using a scale ranging from 1 to 5, with 5 indicating strong agreement). CONCLUSIONS: These results suggest a need for multilevel HIV testing interventions and informed the development of a mobile health intervention aiming to increase HIV knowledge and risk perception among AYA, while reducing barriers to testing at the individual and structural levels, supporting efforts to end the domestic HIV epidemic.
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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. OBJECTIVE: This mixed methods study aims to determine the acceptability of an interactive, enhanced life-simulation game prototype among AYAs, conduct a pilot test of the gaming intervention among a small cohort of AYAs to ensure game usability and acceptability, and evaluate the efficacy of the game in a randomized controlled study with AYAs at risk for HIV in Washington, DC. METHODS: This research protocol will be conducted in 3 phases. A formative phase will involve surveys and focus groups (n=64) with AYAs living in the DC area. These focus groups will allow researchers to understand youth preferences for game enhancement. The second phase will consist of a pilot test (n=10) of the gaming intervention. This pilot test will allow researchers to modify the game based on formative results and test the planned recruitment and data collection strategy with intended end users. The third phase will consist of a randomized controlled study among 300 AYAs to examine the efficacy of the life-simulation game compared with app-based HIV educational materials on HIV and PrEP in changing HIV testing, knowledge, risk behaviors, and PrEP access. Participants will have unlimited access to either the life-simulation game or the educational app for 3 months from the time of enrollment. Study assessments will occur at enrollment and at 1, 3, and 6 months post enrollment via e-surveys. At 6 months, a subset of intervention participants (n=25) will participate in in-depth exit interviews regarding their experience being in the study. RESULTS: Institutional review board approval was received on February 5, 2020. This project is currently recruiting participants for the formative phase. CONCLUSIONS: This interactive life-simulation intervention aims to increase HIV testing and PrEP access among AYAs in the DC area. In this intervention, players can enact real-life behaviors and receive their HIV risk profile to promote HIV testing and PrEP seeking. Such an intervention has great potential to improve knowledge of HIV and PrEP among AYAs, increase motivation and self-efficacy related to HIV testing and PrEP use, and decrease individual and structural barriers that often preclude engagement in HIV prevention services. TRIAL REGISTRATION: ClinicalTrials.gov NCT04917575; https://clinicaltrials.gov/ct2/show/NCT04917575. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/29792.
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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. FINDINGS: The average age of patients was 51 years. 56% were male, 66% heterosexual, and 86% African American. Two distinct groups of patients were identified with respect to end-of-life care preferences: (1) a Relational class (75%) who prioritized family and friends, comfort from church services, and comfort from persons at the end-of-life; and (2) a Transactional/Self-Determination class (25%) who prioritized honest answers from their doctors, and advance care plans over relationships. African Americans had 3x the odds of being in the Relational class versus the Transactional/Self-determination class, Odds ratio = 3.30 (95% CI, 1.09, 10.03), p = 0.035. Males were significantly less likely to be in the relational latent class, Odds ratio = 0.38 (CI, 0.15, 0.98), p = 0.045. Compared to non-African-Americans, African-American PLWH rated the following as important: only taking pain medicines when pain is severe, p = 0.0113; saving larger doses for worse pain, p = 0.0067; and dying in the hospital, p = 0.0285. PLWH who were sexual minorities were more afraid of dying alone, p = 0.0397, and less likely to only take pain medicines when pain is severe, p = 0.0091. CONCLUSION: Integrating culturally-sensitive palliative care services as a component of the HIV care continuum may improve health equity and person-centered care.
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Infecciones por VIH , Cuidados Paliativos al Final de la Vida , Cuidado Terminal , Adulto , Femenino , Objetivos , Infecciones por VIH/tratamiento farmacológico , Humanos , Masculino , Persona de Mediana Edad , Conducta SexualRESUMEN
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. Persons living with HIV(PLWH)/surrogate dyads were randomized to 2 weekly 60-minute sessions: ACP (1) ACP facilitated conversation, (2) advance directive completion; or Control (1) Developmental/relationship history, (2) Nutrition/Exercise. Growth Mixed Modeling was used for 18-month post-intervention analysis. FINDINGS: 223 dyads (N = 449 participants) were enrolled. PLWH were 56% male, aged 22 to 77 years, and 86% African American. Surrogates were 56% female, aged 18 to 82 years, and 84% African American. Two latent classes (High vs. Low) of congruence growth trajectory were identified. ACP influenced the trajectory of outcome growth (congruence in all 5 AIDS related situations) by latent class. ACP dyads had a significantly higher probability of being in the High Congruence latent class compared to controls (52%, 75/144 dyads versus 27%, 17/62 dyads, p = 0.001). The probabilities of perfect congruence diminished at 3-months post-intervention but was then sustained. ACP had a significant effect (ß = 1.92, p = 0.006, OR = 7.10, 95%C.I.: 1.729, 26.897) on the odds of being in the High Congruence class. CONCLUSION: ACP had a significant effect on the trajectory of congruence growth over time. ACP dyads had 7 times the odds of congruence, compared to controls. Three-months post-intervention is optimal for booster sessions.
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Planificación Anticipada de Atención , Cuidado Terminal , Directivas Anticipadas , Muerte , Toma de Decisiones , Femenino , Humanos , MasculinoRESUMEN
Objective: 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. Materials and Methods: Focus groups and surveys were administered to health care providers and AYAs in Washington, DC. AYAs were shown a life-and-dating simulation game that incorporated the Centers for Disease Control and Prevention Risk Estimator tool to demonstrate the potential HIV risk of selected behaviors and a zipcode-level HIV testing locator. Thematic analysis was used to identify general gaming themes and game acceptance. Descriptive statistics were used to summarize response frequencies and Likert scales were used to evaluate game acceptability. Results: Providers, some of whom (38%, n = 5/13) had significant experience caring for youth living with or at increased risk for HIV, advised against the game forcing youth to disclose sexual identity or labeling youth "at risk." AYAs (n = 46) found the initial and revised versions of the game to be highly acceptable: youth thought the game was interesting [mean (standard deviation, SD) = 4.8/5 (0.4)]; liked playing games about HIV-related behaviors [mean (SD) = 4.8/5 (0.5)]; and would share the game to help friends get tested for HIV [mean = 4.6/5 (0.8)]. Conclusions: This study suggests that a digital game to improve HIV testing is acceptable among youth. An efficacy trial is planned to determine the impact of the game on improving HIV testing.
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Infecciones por VIH/diagnóstico , Tamizaje Masivo/normas , Diseño de Software , Juegos de Video/normas , Adolescente , Conducta del Adolescente/psicología , Adulto , Femenino , Grupos Focales/métodos , Infecciones por VIH/psicología , Humanos , Masculino , Tamizaje Masivo/métodos , Tamizaje Masivo/psicología , Investigación Cualitativa , Juegos de Video/psicología , Juegos de Video/estadística & datos numéricosRESUMEN
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. This paper describes the protocol and progress as of October 20, 2019. METHODS: This study uses a multiphase mixed methods design. The first phase is a formative, qualitative research with focus group discussions and key informant interviews. The second phase consists of evaluating the ability of RDS with targeted seed selection. The third phase includes 2 embedded randomized controlled trials (RCTs), where participants complete a baseline sociobehavioral survey, rapid HIV testing, and eligible youth enroll in parallel status-dependent RCTs that randomize the participant to 1 of 2 study arms: MEI with coach or SOC. Participants are asked to complete a web-based survey and provide biologic specimens-HIV-1 RNA (viral load) or HIV-1 antibody test and urine drug screen-at baseline and at 3, 6, and 12 months, and an exit interview at 18 months. RESULTS: A formative qualitative research was conducted in February 2017 and May 2018, and this led to further refinement of recruitment and study methods. Aim 1 recruitment began in September 2017 with subsequent enrollment into the RCTs. Recruitment is ongoing with 520 participants screened and 402 (77.3%) enrolled in aim 1 by October 2020. Of these, 159 are enrolled in the 2 randomized trials: 36 (22.6%) HIV-positive not virally suppressed (aim 2) and 123 (77.4%) high-risk HIV-negative (aim 3). CONCLUSIONS: This study has the potential to significantly impact the medical and substance use services provided to YBLMSM and YBLTW in the United States by providing rigorous scientific evidence outlining approaches and strategies that improve the uptake and engagement of YBLMSM and YBLTW in the HIV treatment and prevention continuum. TRIAL REGISTRATION: ClinicalTrials.gov NCT03194477; https://clinicaltrials.gov/ct2/show/NCT03194477. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/17269.
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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). Novel strategies designed to facilitate health care systems' support for YHIV between medical visits are essential for improving ART adherence, virologic suppression, and long-term survival. OBJECTIVE: The aim of this study is to compare the effectiveness of a technology-enhanced community health nursing intervention (TECH2CHECK) to a standard of care (SOC) control group for improving ART adherence and subsequent viral suppression using a randomized trial design. The objectives are to assess the feasibility, acceptability, and cost-effectiveness of TECH2CHECK as compared to SOC for management of HIV in the outpatient setting and to examine the sustainability of self-care behavior, adherence, and virologic suppression among youth following the intervention period. METHODS: We will recruit 120 adherence-challenged YHIV being followed at clinics specializing in HIV care in the Baltimore-Washington metropolitan area and in Jacksonville. Eligible participants complete an audio, computer-assisted self-interview and are randomized to either TECH2CHECK intervention or the SOC (60 participants in each arm). The primary outcome of interest is virologic suppression (viral load <20 copies/mL) and improved treatment adherence. Participants in the intervention arm receive community health nursing visits at 2 weeks, 6 weeks, 10 weeks, 14 weeks, and 26 weeks. The intervention arm also receives SMS messaging comprising daily adherence and appointment reminders and positive reinforcement for medication adherence daily for 2 weeks, on alternate days for 2 weeks, thrice weekly for 1 month, weekly for 3 months, and every 2 weeks for the rest of the study duration. The control group receives appointment reminders and SOC per clinic protocol. Exploratory analysis will be conducted to determine differences in medication adherence and virologic suppression in the 2 arms and to assess cost-effectiveness and study feasibility and acceptability. RESULTS: In the first 23 months of the study (July 2018-April 2020), 56 (55%) of 102 eligible patients were enrolled and randomized. At present, participating youths are primarily African American (53/56, 95%), male (37/56, 66%), and ≥18 years old (53/56, 95%). Follow-up study visits, as required per the protocol, have been completed by 77% (43/56), 94% (45/48), 95% (37/39), 96% (24/25), and 100% (10/10) of participants at the 1-month, 3-month, 6-month, 12-month, and 18-month follow-ups, respectively. CONCLUSIONS: Preliminary accrual and retention data suggest that TECH2CHECK is feasible and acceptable. TRIAL REGISTRATION: ClinicalTrials.gov NCT03600103 https://clinicaltrials.gov/ct2/show/NCT03600103. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/23480.
RESUMEN
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. Adults living with HIV and their surrogate decision-makers (N = 233 dyads) were randomized to either an intensive facilitated two-session FACE ACP (Next Steps: Respecting Choices goals of care conversation and Five Wishes advance directive) or healthy living control (conversations about developmental/relationship history and nutrition). RESULTS: Patients (n = 223) mean age: 51 years, 56% male, 86% African-American. One hundred ninety-nine dyads participated in the intervention. At baseline, only 13% of patients had an advance directive. Three months after intervention, this increased to 59% for the FACE ACP group versus 17% in the control group (P < 0.0001). Controlling for race, the odds of having an advance directive in the medical record in the FACE ACP group was approximately seven times greater than controls (adjusted odds ratio = 6.58, 95% CI: 3.21-13.51, P < 0.0001). Among African-Americans randomized to FACE, 58% had completed/documented advance directives versus 20% of controls (P < 0.0001). CONCLUSIONS: The FACE ACP intervention significantly improved ACP completion and advance directive documentation in the medical record among both African-American and non-African-American adults living with HIV in Washington, DC, providing health equity in ACP, which can inform best practices.