Health Outcomes around Pregnancy and Exposure to HIV/Antiretrovirals (HOPE) study protocol: a prospective observational cohort study of reproductive-aged women living with HIV.

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.

Factors associated with internalized HIV-related stigma among biological mothers living with HIV enrolled in a US cohort study.

Understanding factors associated with internalized HIV-related stigma among mothers living with HIV may improve health outcomes. We examined factors (age, race/ethnicity, education, income, employment, marital status, health limitations, and years since HIV diagnosis) associated with internalized HIV-related stigma among biological mothers of children enrolled in the Surveillance Monitoring for ART Toxicities study of the US-based Pediatric HIV/AIDS Cohort Study. Stigma was measured with the Internalized HIV Stigma Scale (IHSS), completed biennially at their child's 11-17-year visits. Linear regression models were fit with generalized estimating equations to evaluate the association between the factors of interest and internalized HIV-related stigma using all completed IHSS surveys. Among 438 eligible mothers, the mean IHSS score was 43.7 (SD = 19.5). Higher IHSS scores were observed for widowed women compared to married women, with an estimated mean difference of 8.91 (95% CI: 2.25, 15.57) after adjusting for age, education, income, and health limitations. Years since HIV diagnosis was associated with internalized HIV-related stigma. For every year of increase since HIV diagnosis, IHSS scores decreased by 0.54 per year, after adjusting for age (95% CI: -0.92, -0.17). Interventions to reduce internalized HIV-related stigma should target mothers who are widowed and those with a more recent HIV diagnosis.

The role of internalised HIV stigma in disclosure of maternal HIV serostatus to children perinatally HIV-exposed but uninfected: a prospective study in the United States.

INTRODUCTION: Decisions to disclose HIV serostatus may be complicated by internalised HIV stigma. We evaluated the association of internalised HIV stigma in biological mothers living with HIV with disclosure of their serostatus to their children perinatally HIV-exposed but uninfected (CHEU). METHODS: Mothers and their CHEU were enrolled in the United States (U.S.)-based Surveillance Monitoring for Antiretroviral Therapy (ART) Toxicities (SMARTT) study of the Pediatric HIV/AIDS Cohort Study (PHACS), a longitudinal study of outcomes related to in utero exposure to HIV and ART among CHEU. Mothers completing at least one stigma and disclosure assessment starting at the child's age 11-, 13-, 15- and/or 17-year study visits between 16 August 2016 and 1 October 2020 were eligible. Stigma was measured with the 28-item Internalised HIV Stigma Scale (IHSS). Mean stigma scores were linearly transformed to a range of 0-100, with higher scores indicating greater levels of stigma. At each visit, mothers were asked if their child was aware of their HIV diagnosis and at what age the child became aware. The Kaplan-Meier estimator evaluated the cumulative probability of disclosure at each child age. Logistic regression models with generalised estimating equations to account for repeated measures were fit to examine the association between stigma and disclosure, controlling for relevant socio-demographic variables. RESULTS: Included were 438 mothers of 576 children (mean age 41.5 years, 60% U.S.-born, 60% Black/African American and 37% with household income ≤$10,000). The prevalence of disclosure across all visits was 29%. Mothers whose children were aware versus not aware of their serostatus reported lower mean IHSS scores (38.2 vs. 45.6, respectively). The cumulative proportion of disclosure by age 11 was 18.4% (95% CI: 15.5%, 21.8%) and 41% by age 17 (95% CI: 35.2%, 47.4%). At all child ages, disclosure was higher among children of U.S.-born versus non-U.S.-born mothers. After adjusting for age, marital status and years since HIV diagnosis, higher IHSS scores were associated with lower odds of disclosure (OR = 0.985, 95% CI: 0.975, 0.995). CONCLUSIONS: Providing support to women as they make decisions about serostatus disclosure to their children may entail addressing internalised HIV stigma and consideration of community-level factors, particularly for non-U.S.-born mothers.

Internalized HIV-related stigma in women of color obtaining care at an HIV specialty center in Los Angeles County, California.

The current study examined the role of internalized HIV-related stigma in antiretroviral therapy adherence, viral load, and retention in care among women of color living with HIV in Los Angeles County, California. African American and Hispanic/Latino women 18 years of age and older completed a one-time brief survey between September 2017 and February 2018. Descriptive statistics, and univariable and multivariable logistic regressions were used to analyze the data. Seventy-six participants enrolled in the study and 74 completed the entire survey. Seventy-six percent of respondents were Hispanic/Latino, 24% were African American, 71% were unemployed, and 54% had less than a high school education. Thirty-five percent were defined as having "high" stigma with a score in the upper quartile of the scale. Being unemployed, having a high school education or less, and not meeting the Health Resources and Services Administration's annual retention in care measure were associated with "high" stigma. When controlling for education and employment status, those reporting "high" stigma vs. "low" stigma were 18.8 times more likely to not meet the criteria for annual retention in care (OR = 18.8, 95% CI = 1.9-189.2, p = 0.013). Stigma-reduction interventions targeting healthcare settings may be necessary to improve patient retention and engagement in care.

Determinants of COVID-19 vaccine acceptability among older adults living with HIV.

Since the emergency approval of several therapeutic coronavirus disease 2019 (COVID-19) vaccines in the United States, >500 million doses have been administered. However, there have been disparities in vaccine acceptability and uptake. We examined demographic, human immunodeficiency virus (HIV) disease, and psychosocial factors associated with COVID-19 vaccine acceptability in older adults (≥50 years) living with HIV in the Coachella Valley, California. Participants completed a 1-time anonymous online questionnaire assessing their demographic (i.e., age, race, education, etc), HIV disease (i.e., viral suppression, years living with HIV, acquired immunodeficiency syndrome diagnosis), psychosocial (i.e., HIV-related stigma, personal mastery, depression, etc) characteristics, and COVID-19 vaccine acceptability. Respondents were offered an electronic $20 United States dollar (USD) gift card for survey completion. Descriptive, univariable, and multivariable tests were conducted to analyze the data. Between September 2020 and February 2021, 114 surveys were completed. Eighty-six (75%) agreed/strongly agreed with the COVID-19 vaccine acceptability statement that they saw no problem with receiving a COVID-19 vaccine if one became available. Among those who agreed/strongly agreed, the mean age was 62.2 years (standard deviation = 7.20); 86% self-identified as White; 95% male; 91% with more than high school education; and 31% with annual income <$20,000 USD. Among respondents who disagreed/strongly disagreed, the mean age was 59.9 years (standard deviation = 4.85); 50% self-identified as White; 50% male; 64% with more than high school education; and 4% with annual income <$20,000 USD. In the univariable analyses, those who disagreed/strongly disagreed with the COVID-19 vaccine acceptability statement were significantly more likely to be living with HIV for fewer years, experiencing higher levels of HIV-related stigma and depression, and with lower levels of personal mastery. In the multivariable logistic regression model, self-identification as female vs male and unemployed vs employed was significantly associated with decreased COVID-19 vaccine acceptability (odds ratio = 0.09, 95% confidence interval: 0.01-0.71 and odds ratio = 0.08, 95% confidence interval: 0.01-0.70 respectively), adjusting for ethnicity, marital status, education, disability, years living with HIV, HIV-related stigma, and depression. Additional studies are needed to understand vaccine-related decision-making among older adults living with HIV. Programmatic efforts may also be necessary to disseminate accurate information/resources about COVID-19 vaccines to those with more recent HIV diagnoses, experiencing HIV-related stigma and depression, with lower levels of personal mastery, and facing socioeconomic disparities.

Living With HIV During the COVID-19 Pandemic: Impacts for Older Adults in Palm Springs, California.

We conducted surveys in March 2020 with 100 older adults living in Palm Springs, CA, to (1) report the impact of the COVID-19 pandemic on their day-to-day well-being and (2) describe the factors related to missing HIV medication during the pandemic. Respondent's mean age was 64.2 and the majority identified as White, men, and gay. The majority stated that the pandemic had impacted their lives "much," "very much," or "extremely." One-third experienced financial challenges and 46.0% experienced disruptions to health care. Almost a quarter (24.0%) reported missing a dose of their HIV medication during the pandemic. Compared to those ages 64+, younger respondents were more likely to report some negative impacts like changes in sleep patterns, financial challenges, and missed HIV medication doses, and had higher PTSD severity scores. In adjusted logistic regression, higher PTSD severity scores and disruption to health care were associated with missed doses of medications (ps < .05).

Perceptions of the Importance of Advance Care Planning During the COVID-19 Pandemic Among Older Adults Living With HIV.

Background: The importance of advance care planning (ACP) discussions have been heightened during the COVID-19 pandemic. We assessed advance directive completion, healthcare proxy (HCP), and attitudes toward ACP among older adults ages 50+ living with HIV during the COVID-19 pandemic. Methods: Internet-based surveys were administered to 100 participants residing in the Coachella Valley, California from April to June 2020. We examined self-reported completion of an advance directive, HCP, and attitudes toward ACP before and after COVID-19. Adjusted regressions were performed on attitudes toward ACP. Results: Participants' mean age was 64.2 years, most were non-Hispanic white (88.0%), men (96.0%), and identified as sexual minorities (96.0%). Many reported having an advance directive (59.6%) or HCP (67.3%). Most (57.6%) believed ACP to be more important now compared to the pre-pandemic era. Having an advance directive was associated with increase in age, higher education, living with other people, never having an AIDS diagnosis, and current undetectable viral load (p < 0.05). Having a HCP was associated with higher education, being married/partnered, and living with other people (p < 0.05). In a logistic regression model adjusted for education and living situation, the belief that ACP was more important during COVID was associated with not having an advance directive (OR: 5.07, 95% CI: 1.78-14.40) and fear of COVID-19 infection (OR: 4.17, 95% CI: 1.61-10.76.) Conclusions: The COVID-19 pandemic presents a window of opportunity to engage people aging with HIV in ACP discussions, particularly those who do not already have an advance directive.

Using Social Media and Technology to Communicate in Pediatric HIV Research: Qualitative Study With Young Adults Living With or Exposed to Perinatal HIV.

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.

Assessing the Efficacy of a PhotoVoice-Informed HIV Stigma Training for Health Care Workers.

HIV stigma is a harmful social phenomenon present in United States (US)-based health care settings. This study assessed the efficacy of a participatory PhotoVoice-informed stigma reduction training program focusing on people living with HIV (PLWH) and targeting health care workers. Seventy-three (N = 73) participants were assessed at baseline (T1), within approximately a week of the training (T2), and at a 3-month follow-up (T3) regarding their HIV/AIDS knowledge, attitudes towards PLWH, and observations of enacted HIV stigma. Findings indicated that the training increased knowledge and improved attitudes (ß = 0.56, p < 0.01; ß = 0.58, p < 0.01, respectively) at T2, but these effects diminished at T3 (ß = - 0.03, p > 0.05; ß = - 0.29, p > 0.05, respectively). The training did not, however, have an impact on observations of enacted stigma at T2 (ß = 0.10, p > 0.05) or at T3 (ß = 0.02, p > 0.05). Additional participatory stigma reduction programs that involve diverse groups of health care workers, offer salient study incentives, include time-saving training methods, and comprise a variety of stigma measures, may be particularly beneficial.

Addressing HIV Stigma in Health Care.

Strategies to address this potent barrier to treatment and prevention.

A Grounded Theory Study of HIV-Related Stigma in U.S.-Based Health Care Settings.

Despite progress made in the treatment and care of people living with HIV (PLWH), HIV-related stigma has remained persistent. Health care settings and workers have been identified as important sources of stigma. Studies have addressed the construct of stigma in U.S. health care settings, but mainly from the perspectives of PLWH. We used Grounded Theory to understand how health care workers conceptualized HIV-related stigma and to develop a model to project a purposive view of stigma in health care settings. Our model indicates that stigma may be rooted in historically derogatory representations of HIV and intensified by power inequalities. Stigma may be triggered by fear, inadequate clinical education and training, unintentional behaviors, and limited contact with PLWH. Study participants perceived stigma as injurious to patient and provider health outcomes. Additional research on provider perceptions of stigma and programs that encourage empowerment, communication, and training may be necessary for stigma reduction.

Women of Color Reflect on HIV-Related Stigma through PhotoVoice.

HIV-related stigma affects people living with HIV (PLWH), especially in communities of color. In our study, African American and Latina/Hispanic women living with HIV (WLWH) described experiences of stigma through PhotoVoice, a community-based participatory method of documentary photography. Ten WLWH from Los Angeles documented stigma experiences through photographs for up to 5 weeks and discussed their images during a focus group or semi-structured individual interview. Qualitative interpretive phenomenological analysis of participant narratives and photographs revealed lack of education and cultural myths as the main triggers of the stigma our participants faced. Stigma was experienced in health care settings, and participants identified depression, fear of intimate relationships, and nondisclosure of HIV status as its consequences. Social support and faith were noted as key coping mechanisms. WLWH recommended involving PLWH and public health officials in stigma reduction campaigns and youth education. PhotoVoice was perceived as a useful tool for education and self-improvement.

Lower Newborn Bone Mineral Content Associated With Maternal Use of Tenofovir Disoproxil Fumarate During Pregnancy.

BACKGROUND: Fetal bone effects of maternal tenofovir use have not been well studied. We sought to compare whole-body bone mineral content (BMC) of newborns exposed vs not exposed to tenofovir in utero. METHODS: We enrolled participants from April 2011 to June 2013 at 14 US clinical sites. Singleton infants of women with human immunodeficiency virus (HIV) infection who took tenofovir in late pregnancy (tenofovir-exposed) or no tenofovir during pregnancy (tenofovir-unexposed) were enrolled during late pregnancy or within 72 hours of birth. Infants born before 36 weeks gestation or with confirmed HIV infection were excluded. Whole-body BMC was measured in the first month of life and compared with that of the tenofovir-exposed and tenofovir-unexposed newborns, unadjusted and adjusted for covariates. RESULTS: Seventy-four tenofovir-exposed and 69 tenofovir-unexposed infants had evaluable BMC measurements. Tenofovir-exposed mothers were more likely to be married (31% vs 22%; P = .04) and to use boosted protease inhibitors (84% vs 62%; P = .004). Tenofovir-exposed newborns did not differ from unexposed newborns on mean gestational age (38.2 vs 38.1 weeks) or mean length (-0.41 vs -0.18) or weight (-0.71 vs -0.48) Z-scores. The mean (standard deviation) BMC of tenofovir-exposed infants was 12% lower than for unexposed infants (56.0 [11.8] vs 63.8 [16.6] g; P = .002). The adjusted mean bone mineral content was 5.3 g lower (95% confidence interval, -9.5, -1.2; P = .013) in the tenofovir-exposed infants. CONCLUSIONS: Maternal tenofovir use is associated with significantly lower neonatal BMC. The duration and clinical significance of this finding should be evaluated in longitudinal studies. CLINICAL TRIALS REGISTRATION: ClinicalTrials.gov NCT01310023.

Peruvian Female Sex Workers' Ethical Perspectives on Their Participation in an HPV Vaccine Clinical Trial.

This study examined female sex workers' evaluation of ethically relevant experiences of participating in an HPV4 vaccine clinical trial conducted in Lima, Peru (the Sunflower Study). The Sunflower Study provided all participants with HPV testing, treatment for those testing positive, and access to the vaccine for all testing negative. Themes that emerged from content analysis of interviews with 16 former participants included the importance of respectful treatment and access to healthcare not otherwise available and concerns about privacy protections, the potential for HIV stigma, and poststudy abandonment.

Addressing Ebola-related stigma: lessons learned from HIV/AIDS.

BACKGROUND: HIV/AIDS and Ebola Virus Disease (EVD) are contemporary epidemics associated with significant social stigma in which communities affected suffer from social rejection, violence, and diminished quality of life. OBJECTIVE: To compare and contrast stigma related to HIV/AIDS and EVD, and strategically think how lessons learned from HIV stigma can be applied to the current EVD epidemic. METHODS: To identify relevant articles about HIV/AIDS and EVD-related stigma, we conducted an extensive literature review using multiple search engines. PubMed was used to search for relevant peer-reviewed journal articles and Google for online sources. We also consulted the websites of the World Health Organization (WHO), Centers for Disease Control and Prevention (CDC), and the National Institutes of Health to retrieve up-to-date information about EVD and HIV/AIDS. RESULTS: Many stigmatizing attitudes and behaviors directed towards those with EVD are strikingly similar to those with HIV/AIDS but there are significant differences worthy of discussion. Both diseases are life-threatening and there is no medical cure. Additionally misinformation about affected groups and modes of transmission runs rampant. Unlike in persons with EVD, historically criminalized and marginalized populations carry a disproportionately higher risk for HIV infection. Moreover, mortality due to EVD occurs within a shorter time span as compared to HIV/AIDS. CONCLUSIONS: Stigma disrupts quality of life, whether it is associated with HIV infection or EVD. When addressing EVD, we must think beyond the immediate clinical therapeutic response, to possible HIV implications of serum treatment. There are emerging social concerns of stigma associated with EVD infection and double stigma associated with EVD and HIV infection. Drawing upon lessons learned from HIV, we must work to empower and mobilize prominent members of the community, those who recovered from the disease, and organizations working at the grassroots level to disseminate clear and accurate information about EVD transmission and prevention while promoting stigma reduction in the process. In the long run, education, prevention, and a therapeutic vaccine will be the optimal solutions for reducing the stigma associated with both EVD and HIV.

A prospective cohort study characterising the role of anogenital warts in HIV acquisition among men who have sex with men: a study protocol.

INTRODUCTION: The HIV epidemic in Latin America is concentrated among men who have sex with men (MSM) and transgender women (TGW) with transmission predominately occurring during unprotected anal intercourse. This mode of transmission is also responsible for other sexually transmitted infections (STIs) such as herpes simplex, chlamydia and gonorrhoea, human papillomavirus (HPV)/genital warts and syphilis. Studies assessing the prevalence of HIV and HPV among MSM have not addressed the role of genital warts and HPV-related diseases in the acquisition of HIV infection. Community-based testing programmes are a potentially important way to remove barriers including stigma for individuals to learn about their STI status. METHODS AND ANALYSIS: The prospective cohort study will recruit 600 MSM/TGW at a community centre in Lima, Peru, named Epicentro. Half of the participants will have a history of or have current anogenital warts (AGW), and the other half will have no history of AGW. We will measure the prevalence and acquisition of STIs including syphilis, HPV, chlamydia and gonorrhoea and the HIV-incidence in the two groups. To the best of our knowledge, it will be the first study that specifically examines the impact of genital warts on incident HIV infection. This study will help to understand the relationship between AGW and HIV infection among MSM/TGW in Peru. Furthermore, it may facilitate the development of preventive intervention strategies to reduce the prevalence of AGW and prevent incident HIV infection. HPV-related manifestations may be a good proxy for HIV risk. ETHICS AND DISSEMINATION: This study was approved by institutional review boards at the University of California, Los Angeles (UCLA) in the USA and Impacta in Peru. Study findings will be shared with the Peruvian Ministry of Health as well as other international and national public health organisations. Study results will be translated into Spanish for participants. TRIAL REGISTRATION NUMBER: The Clinicaltrials.gov registration number is NCT01387412.

The role of human papillomavirus in human immunodeficiency virus acquisition in men who have sex with men: a review of the literature.

Human Papillomavirus (HPV) infection is the most common sexually transmitted infection (STI) worldwide. Incidence rates of HPV infection among human immunodeficiency virus (HIV)-infected individuals are well documented and are several-fold higher than among HIV-uninfected individuals. Few studies have demonstrated an increased risk for acquiring HIV infection in those with HPV infection, and this risk seems to be higher when HPV strains are of high-risk oncogenic potential. The estimated prevalence of high-risk oncogenic HPV infection is highest in men who have sex with men (MSM), a particularly vulnerable group with high prevalence rates of HIV infection and other STIs. In this paper, we provide a comprehensive review of the available literature on the role of HPV infection in HIV acquisition. Our review includes data from cross-sectional and longitudinal studies.