Deborah Kacanek

Background: Preterm birth (PTB) and small-for-gestational age (SGA) often occur in infants born to women with HIV and may influence growth among children perinatally HIV- exposed but uninfected (CHEU). Setting: U.S. cohort at 22 sites Methods: CHEU were enrolled at birth into the SMARTT Dynamic cohort of the Pediatric HIV/AIDS Cohort Study network and followed through age 17 years. We calculated Z scores for singleton CHEU through age 7 years for weight (WAZ), length or height (LAZ/HAZ), and weight-for-length/body mass index (WFL/BMI)]; excessive catch-up growth was defined as WAZ increase >0.67 SD from birth to age 2 years. Birth weight-for-gestational age (GA) was categorized as small- (SGA), appropriate- (AGA), and large-for-GA (LGA). Piecewise linear regression models with slope changes were used to assess growth trajectories by SGA and PTB. Results: Among 2,765 CHEU born 2007-2022, 9.2% were SGA, 14.4% preterm, and 47% had excessive catch-up growth. Among term infants, those born SGA had the highest percent (65%) with excessive catch-up growth. Those born SGA had lower mean WAZ and WLZ/BMIZ than AGA through age 7 years. Infants with PTB had higher mean WAZ, LAZ/HAZ, and WLZ/BMIZ at birth than term infants, but were similar by age 7 years. Conclusions: A high proportion of CHEU had excessive catch-up growth and obesity at age 5 years. While SGA infants had persistently lower Z-scores than AGA, obesity rates at age 5 years were comparable. These findings represent a paradigm shift from undernutrition to overnutrition, particularly in countries where obesity prevalence is high.

BACKGROUND Adolescents and young adults with HIV (AYAWH) experience poor retention in care; suboptimal viral suppression; and frequent disengagement during healthcare transition compared to older adults. The COVID-19 pandemic rapidly expanded telehealth use, offering both opportunities and challenges for engagement. Trust in providers is a critical determinant of adherence and outcomes, yet little is known about how relational trust interacts with trust in telehealth and transition experiences. OBJECTIVE This study examined predictors of patient-provider trust and trust in telehealth; assessed whether trust predicted engagement outcomes; and explored the roles of stigma, age, and transition status among AYAWH. METHODS We conducted a cross-sectional observational study of 109 AYAWH (ages 18–30) receiving care at two Colorado HIV programs. Participants completed validated measures of patient-provider trust, perceived provider caring, trust in telehealth, HIV stigma, and mental health, in conjunction with self-reported adherence over a 2-month period (December 2020 through January 2021). Clinical data were abstracted for visits, HIV RNA PCR results, and telehealth encounters during the 16 months spanning pre-COVID (July 2019 - March 2020) and post-COVID onset (March -November 2020). Descriptive, bivariate, and multivariable regression analyses tested associations between trust, stigma, transition status, telehealth use, and engagement outcomes. RESULTS Participants were 60% (n=65) male and 39.4% (n=43) living with perinatally acquired HIV. Patient-provider trust and perceived provider caring were high (mean Health Care Relationship Trust = 44.3/52; mean Watson Patient Caring Score = 6.4/7) and both predicted trust in telehealth (β =.76 and β =.37, respectively, P<.001). Stigma was negatively associated with perceived caring (β =–.27, P=.005). Seventy-one percent of youth had ≥1 telehealth visit. Telehealth use was associated with greater likelihood of viral suppression (OR=2.30, 95% CI 1.05–5.02, P=.037) and a higher number of HIV-related visits (β =.24, P=.042). Older age and longer provider relationships predicted telehealth and hybrid use. Post-transition youth had fewer telehealth visits (β=–.23, P=.037) but were more likely to achieve viral suppression (P=.009). CONCLUSIONS Trust in providers strongly predicted trust in telehealth, supporting the extension of relational trust into digital domains. Telehealth use was associated with improved engagement and viral suppression pre-transition. Post-transition youth used telehealth less frequently despite stronger virologic outcomes. Findings suggest introducing telehealth earlier in pediatric care may scaffold continuity of care, easing transition into adult services. Nurse-led, youth-centered telehealth models that integrate trust-building, stigma screening, and mental health support enhance engagement and outcomes for AYAWH.

HIV-related stigma is associated with negative effects on mental health and lower health-related quality of life in pediatric and young adult populations living with HIV. We reviewed literature on the impact of HIV-related stigma on suboptimal antiretroviral therapy (ART) adherence, engagement and retention in HIV care, and transition to adult HIV care in children, adolescents, and young adults living with HIV. PubMed and Embase^® were searched for publications reporting relevant data published from January 1, 2012, to April 13, 2023. The output was not a systematic review; it was a targeted literature review. Overall, 67 studies were selected for analysis based on pre-specified criteria (eg, quality). Most quantitative studies supported negative associations between HIV-related stigma and ART adherence (n = 8/11), engagement and retention in HIV care (n = 3/4), and transition to adult HIV care (n = 2/3) in pediatric and young adult populations living with HIV. Qualitative studies reported that stigma was a barrier to ART adherence (n = 26), engagement and retention in HIV care (n = 18), and transitioning to adult HIV care (n = 11). Prominent interview themes across all topics included anticipated stigma, enacted stigma, and fear of HIV status disclosure. Results reaffirm that HIV-related stigma is a significant barrier to ART adherence, engagement and retention in HIV care, and transition to adult HIV care among pediatric and young adult populations living with HIV, potentially impacting virologic suppression, onward transmission, and longer-term health. Additional interventional studies are needed to evaluate and reduce the impact of stigma in these important populations.

Introduction Over 265 000 women are living with HIV in the USA, but limited research has investigated the physical, mental and behavioural health outcomes among women living with HIV of reproductive age. Health status during the reproductive years before, during and after pregnancy affects pregnancy outcomes and long-term health. Understanding health outcomes among women living with HIV of reproductive age is of substantial public health importance, regardless of whether they experience pregnancy. The Health Outcomes around Pregnancy and Exposure to HIV/Antiretrovirals (HOPE) study is a prospective observational cohort study designed to investigate physical and mental health outcomes of young women living with HIV as they age, including HIV disease course, engagement in care, reproductive health and choices and cardiometabolic health. We describe the HOPE study design, and characteristics of the first 437 participants enrolled as of 1 January 2024. Methods and analysis The HOPE study seeks to enrol and follow 1630 women living with HIV of reproductive age, including those with perinatally-acquired HIV, at 12 clinical sites across 9 US states and Puerto Rico. HOPE studies multilevel dynamic determinants influencing physical, mental and social well-being and behaviours of women living with HIV across the reproductive life course (preconception, pregnancy, post partum, not or never-pregnant), informed by the socioecological model. Key research areas include the clinical course of HIV, relationship of HIV and antiretroviral medications to reproductive health, pregnancy outcomes and comorbidities and the influence of racism and social determinants of health. HOPE began enrolling in April 2022. Ethics and dissemination The HOPE study received approval from the Harvard Longwood Campus Institutional Review Board, the single institutional review board of record for all HOPE sites. Results will be disseminated through conference presentations, peer-reviewed journals and lay summaries.

Background: As young adults living with perinatal HIV (PHIV) or perinatal HIV exposure but uninfected (PHEU) grow older and manage the challenges and competing demands of young adulthood, new approaches are needed to facilitate their retention in longitudinal research and clinical care beyond in-person clinic visits. Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the novel virus that causes coronavirus disease (COVID-19), emerged in the United States in January 2020 and has underscored this need; studies are adapting to remote communication with and data collection from participants. However, there are limited data on communication preferences among young adults who are living with PHIV or PHEU. Objective: The objectives of this qualitative study were to describe participants’ perceptions and use of social media and technology in their personal lives and in the context of participating in longitudinal pediatric HIV research and to describe the implications of the use of technology and social media for communication and retention purposes within a longitudinal pediatric study about HIV. Methods: We conducted 6 focus group discussions with 31 young adults living with PHIV and 13 in-depth interviews with 6 young adults living with PHIV and 7 living with PHEU. We asked about their preferences for the use of social media and digital technology in the Adolescent Master Protocol, a US-based longitudinal cohort study of youth affected by HIV. Results: Participants’ willingness to use social media platforms, telephone calls, SMS text messages, and video calls within the context of HIV research varied due to fears of HIV stigma and inadvertent disclosure. However, trusting relationships with clinical staff positively impacted their willingness to use these platforms. Conclusions: Our findings offer insight into how pediatric studies and clinics can communicate with participants as they age, even as new technologies and social media platforms emerge and replace old ones. For optimal retention, pediatric clinical staff should consider communication approaches offering flexible and tailored options for young adults participating in HIV research.

BACKGROUND As young adults living with perinatal HIV (PHIV) or perinatal HIV exposure but uninfected (PHEU) grow older and manage the challenges and competing demands of young adulthood, new approaches are needed to facilitate their retention in longitudinal research and clinical care beyond in-person clinic visits. Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the novel virus that causes coronavirus disease (COVID-19), emerged in the United States in January 2020 and has underscored this need; studies are adapting to remote communication with and data collection from participants. However, there are limited data on communication preferences among young adults who are living with PHIV or PHEU. OBJECTIVE The objectives of this qualitative study were to describe participants’ perceptions and use of social media and technology in their personal lives and in the context of participating in longitudinal pediatric HIV research and to describe the implications of the use of technology and social media for communication and retention purposes within a longitudinal pediatric study about HIV. METHODS We conducted 6 focus group discussions with 31 young adults living with PHIV and 13 in-depth interviews with 6 young adults living with PHIV and 7 living with PHEU. We asked about their preferences for the use of social media and digital technology in the Adolescent Master Protocol, a US-based longitudinal cohort study of youth affected by HIV. RESULTS Participants’ willingness to use social media platforms, telephone calls, SMS text messages, and video calls within the context of HIV research varied due to fears of HIV stigma and inadvertent disclosure. However, trusting relationships with clinical staff positively impacted their willingness to use these platforms. CONCLUSIONS Our findings offer insight into how pediatric studies and clinics can communicate with participants as they age, even as new technologies and social media platforms emerge and replace old ones. For optimal retention, pediatric clinical staff should consider communication approaches offering flexible and tailored options for young adults participating in HIV research.

Objective: To identify factors associated with nonadherence and unsuppressed viral load across adolescence among youth with perinatally acquired HIV. Design: Longitudinal study at 15 US clinical sites. Methods: Self-reported antiretroviral medication nonadherence (any missed dose, past week) and unsuppressed viral load (HIV RNA > 400 copies/ml) were assessed annually. Individual, caregiver, social, and structural factors associated with nonadherence and unsuppressed viral load were identified by age (years): 8–11 (preadolescence), 12–14 (early adolescence), 15–17 (middle adolescence), and 18–22 (late adolescence/young adulthood), utilizing multivariable generalized linear mixed effects models. Results: During a median 3.3-year follow-up, 381 youth with perinatally acquired HIV contributed viral load measurements and 379 completed 1190 adherence evaluations. From preadolescence to late adolescence/young adulthood, prevalence of nonadherence increased from 31 to 50% (P < 0.001); prevalence of unsuppressed viral load increased from 16 to 40% (P < 0.001). In adjusted analyses, in pre, middle, and late adolescence/young adulthood, perceived antiretroviral side effects were associated with nonadherence. Additional factors associated with nonadherence included: in preadolescence, using a buddy system (as an adherence reminder); in early adolescence, identifying as black, using buddy system; in middle adolescence, CD4⁺% less than 15%, unmarried caregiver, indirect exposure to violence, stigma/fear of inadvertent disclosure, stressful life events. Associations with unsuppressed viral load included: in early adolescence, youth unawareness of HIV status, lower income; in middle adolescence, perceived antiretroviral side effects, lower income; in late adolescence/young adulthood, distressing physical symptoms, and perceived antiretroviral side effects. Conclusion: Prevalence of nonadherence and unsuppressed viral load increased with age. Associated factors varied across adolescence. Recognition of age-specific factors is important when considering strategies to support adherence.

Objectives: The relationship of specific psychiatric conditions to adherence has not been examined in longitudinal studies of youth with perinatal HIV infection (PHIV). We examined associations between psychiatric conditions and antiretroviral nonadherence over 2 years. Design: Longitudinal study in 294 PHIV youth, 6–17 years old, in the United States and Puerto Rico. Methods: We annually assessed three nonadherence outcomes: missed above 5% of doses in the past 3 days, missed a dose within the past month, and unsuppressed viral load (>400 copies/ml). We fit multivariable logistic models for nonadherence using Generalized Estimating Equations, and evaluated associations of psychiatric conditions (attention deficit hyperactivity disorder, disruptive behavior, depression, anxiety) at entry with incident nonadherence using multivariable logistic regression. Results: Nonadherence prevalence at study entry was 14% (3-day recall), 32% (past month nonadherence), and 38% (unsuppressed viral load), remaining similar over time. At entry, 38% met symptom cut-off criteria for at least one psychiatric condition. Greater odds of 3-day recall nonadherence were observed at week 96 for those with depression [adjusted odds ratio (aOR) 4.14, 95% confidence interval (CI) 1.11–15.42] or disruptive behavior (aOR 3.36, 95% CI 1.02–11.10], but not at entry. Those with vs. without attention deficit hyperactivity disorder had elevated odds of unsuppressed viral load at weeks 48 (aOR 2.46, 95% CI 1.27–4.78) and 96 (aOR 2.35, 95% CI 1.01–5.45), but not at entry. Among 232 youth adherent at entry, 16% reported incident 3-day recall nonadherence. Disruptive behavior conditions at entry were associated with incident 3-day recall nonadherence (aOR 3.01, 95% CI 1.24–7.31). Conclusion: In PHIV youth, comprehensive adherence interventions that address psychiatric conditions throughout the transition to adult care are needed.

We examined diaphragm adherence among 2429 women randomized to the intervention arm (diaphragm + gel + condoms) in Methods for Improving Reproductive Health in Africa, a phase III trial of the diaphragm for HIV prevention in Zimbabwe and South Africa. Women were followed for a median of 7 quarterly visits (range: 1-8 quarterly visits) during which diaphragm adherence was assessed. We conducted trajectory analyses to identify behavioral groups associated with specific diaphragm adherence patterns. Multivariate multinomial logistic regression was used to identify baseline characteristics associated with higher probability of being in a particular trajectory group. Diaphragm uptake was very high (3.1% never used diaphragms). However, diaphragm adherence was reported at only 49% of visits. Women were clustered into 4 diaphragm adherence groups based on their highest estimated group membership probability: low adherers (31.0%), decreasing adherers (28.9%), increasing adherers (9.3%), and high adherers (30.8%). Women classified as high adherers (as compared with low adherers) were more likely to be older [adjusted odds ratio (AOR) = 1.09, 95% confidence interval (CI): 1.07 to 1.11] and to report baseline condom adherence (AOR = 2.00, 95% CI: 1.47 to 2.71). They were less likely to have high-risk behavior (AOR = 0.51; 95% CI: 0.37 to 0.71) and to have high-risk partners (AOR = 0.58; 95% CI: 0.43 to 0.78). They were most likely to be from the Zimbabwe site (AOR = 2.82; 95% CI: 1.89 to 4.20) and least likely to be from the Johannesburg site (AOR = 0.51; 95% CI: 0.37 to 0.77). This analytic approach could help to identify high compliers for enrollment in future HIV prevention trials or the types of participants who may need intensive adherence counseling during follow-up.