Self-reported depression and social support are associated with egocentric network characteristics of HIV-infected women of color.

BACKGROUND: We explore the social network characteristics associated with depressive symptoms and social support among HIV-infected women of color (WOC). METHODS: Network data were collected from 87 HIV-infected WOC at an academic Infectious Disease clinic in the United States (US) south. With validated instruments, interviewers also asked about depressive symptoms, social support, and treatment-specific social support. Linear regression models resulted in beta coefficients and 95% confidence intervals for the relationships among network characteristics, depression, and support provision. RESULTS: Financial support provision was associated with lower reported depressive symptoms while emotional support provision was associated with increased reported social support. Talking less than daily to the first person named in her network, the primary alter, was associated with a nearly 3-point decrease in reported social support for respondents. Having people in their social network who knew their HIV status was also important. CONCLUSIONS: We found that both functional and structural social network characteristics contributed to perceptions of support by HIV-infected WOC.

HIV Standard of Care for ART Adherence and Retention in Care Among HIV Medical Care Providers Across Four CNICS Clinics in the US.

Despite the issuance of evidence-based and evidence-informed guidelines to improve engagement in HIV care and adherence-related outcomes, few studies have assessed contemporary adherence or engagement support practices of HIV care providers in US clinics. As a result, the standard of HIV care in the US and globally remains poorly understood. This programmatic assessment approach aimed to identify the strengths and gaps in the current standard of HIV care from the perspective of HIV care providers. A self-administered Standard of Care measure was developed and delivered through Qualtrics to HIV care providers at four different HIV care sites as a part of a multisite intervention study to improve engagement in HIV care and ART adherence. Providers were asked to provide demographic and clinic specific information, identify practices/strategies applied during typical initial visits with HIV-positive patients and visits prior to and at ART initiation, as well as their perceptions of patient behaviors and adequacy of HIV care services at their clinics. Of the 75 surveys which were completed, the majority of respondents were physicians, and on average, providers have worked in HIV care for 13.5 years. Across the sites, 91% of the providers' patient panels consist of HIV-positive patients, the majority of whom are virally suppressed and 1/5 are considered "out of care." Few resources were routinely available to providers by other staff related to monitoring patient adherence and engagement in care. During typical initial visits with HIV positive patients, the majority of providers report discussing topics focused on behavioral/life contexts such as sexual partnerships, sexual orientation, disclosure, and other sources of social support. Nearly all providers emphasize the importance of adherence to treatment recommendations and nearly 90% discuss outcomes of good adherence and managing common side effects during ART start visits. Overall, providers do not report often implementing practices to improve retention in care. Survey results point to opportunities to enhance engagement in HIV care and improve ART adherence through systematic data monitoring and increased collaboration across providers and other clinic staff, specifically when identifying patients defined as "in need" or "out of care." Trial Registration: Clinicaltrials.gov NCT01900236.

A Web-Based Data Collection Platform for Multisite Randomized Behavioral Intervention Trials: Development, Key Software Features, and Results of a User Survey.

BACKGROUND: Meticulous tracking of study data must begin early in the study recruitment phase and must account for regulatory compliance, minimize missing data, and provide high information integrity and/or reduction of errors. In behavioral intervention trials, participants typically complete several study procedures at different time points. Among HIV-infected patients, behavioral interventions can favorably affect health outcomes. In order to empower newly diagnosed HIV positive individuals to learn skills to enhance retention in HIV care, we developed the behavioral health intervention Integrating ENGagement and Adherence Goals upon Entry (iENGAGE) funded by the National Institute of Allergy and Infectious Diseases (NIAID), where we deployed an in-clinic behavioral health intervention in 4 urban HIV outpatient clinics in the United States. To scale our intervention strategy homogenously across sites, we developed software that would function as a behavioral sciences research platform. OBJECTIVE: This manuscript aimed to: (1) describe the design and implementation of a Web-based software application to facilitate deployment of a multisite behavioral science intervention; and (2) report on results of a survey to capture end-user perspectives of the impact of this platform on the conduct of a behavioral intervention trial. METHODS: In order to support the implementation of the NIAID-funded trial iENGAGE, we developed software to deploy a 4-site behavioral intervention for new clinic patients with HIV/AIDS. We integrated the study coordinator into the informatics team to participate in the software development process. Here, we report the key software features and the results of the 25-item survey to evaluate user perspectives on research and intervention activities specific to the iENGAGE trial (N=13). RESULTS: The key features addressed are study enrollment, participant randomization, real-time data collection, facilitation of longitudinal workflow, reporting, and reusability. We found 100% user agreement (13/13) that participation in the database design and/or testing phase made it easier to understand user roles and responsibilities and recommended participation of research teams in developing databases for future studies. Users acknowledged ease of use, color flags, longitudinal work flow, and data storage in one location as the most useful features of the software platform and issues related to saving participant forms, security restrictions, and worklist layout as least useful features. CONCLUSIONS: The successful development of the iENGAGE behavioral science research platform validated an approach of early and continuous involvement of the study team in design development. In addition, we recommend post-hoc collection of data from users as this led to important insights on how to enhance future software and inform standard clinical practices. TRIAL REGISTRATION: Clinicaltrials.gov NCT01900236; (https://clinicaltrials.gov/ct2/show/NCT01900236 (Archived by WebCite at http://www.webcitation.org/6qAa8ld7v).

Health status of HIV-infected women entering care: baseline medical findings from the women of color initiative.

The WOC Initiative is a prospective study of 921 women of color (WOC) entering HIV care at nine (three rural, six urban) sites across the US. A baseline interview was performed that included self-reported limitation(s) in activity, health conditions, and the CDC's health-related quality of life measures (Healthy Days). One-third of the WOC reported limiting an activity because of illness or a health condition and those with an activity limitation reported 13 physically and 14 mentally unhealthy days/month, compared with 5 physically and 9 mentally unhealthy days/month in the absence of an activity limitation. Age was associated with a three- to fourfold increased risk of an activity limitation but only for WOC in the urban sites. Diabetes was associated with a threefold increased risk of a limitation among women at rural sites. Cardiac disease was associated with a six- to sevenfold increased risk of an activity limitation for both urban and rural WOC. HIV+ WOC reported more physically and mentally unhealthy days than the general US female population even without an activity limitation. Prevention and treatment of diabetes and cardiovascular disease will need to be a standard part of HIV care to promote the long-term health and HRQOL for HIV-infected WOC.

Barriers and facilitators to testing, treatment entry, and engagement in care by HIV-positive women of color.

Women of color (WOC) are at increased risk of dying from HIV/AIDS, a disparity that may be partially explained by the care barriers they face. Based in a health care disparity model and the socio-ecological framework, the objective of this study was to identify the barriers and facilitators to HIV care at three points along the HIV continuum: HIV testing, entry/early care, and engagement. Two focus groups (n=11 women) and 19 semi-structured interviews were conducted with HIV-positive WOC in an academic medical setting in North Carolina. Content was analyzed and interpreted. We found barriers and facilitators to be present at multiple levels of the ecological framework, including personal-, provider-, clinic-, and community-levels. The barriers reported by women were aligned with the racial health care disparity model constructs and varied by stage of HIV. Identifying the salient barriers and facilitators at multiple ecological levels along the HIV care continuum may inform intervention development.

Experiences with HIV testing, entry, and engagement in care by HIV-infected women of color, and the need for autonomy, competency, and relatedness.

Self-determination theory examines the needs of people adopting new behaviors but has not been applied to the adoption of HIV healthcare behaviors. The current study applied self-determination theory to descriptions of healthcare behaviors adopted by ethnic minority women after an HIV diagnosis. Women of color were asked to describe their experiences with HIV testing, entry, and engagement-in-care in qualitative interviews and focus groups. Participants were mostly African-American (88%), over 40 years old (70%), had been diagnosed for more than 6 years (87%) and had disclosed their HIV infection to more than 3 people (73%). Women described unmet self-determination needs at different time points along the HIV Continuum of Care. Women experienced a significant loss of autonomy at the time of HIV diagnosis. Meeting competency and relatedness needs assisted women in entry and engagement-in-care. However, re-establishing autonomy was a key element for long-term engagement-in-care. Interventions that satisfy these needs at the optimal time point in care could improve diagnosis, entry-to-care, and retention-in-care for women living with HIV.