Development and promotion of a national website to improve dissemination of information related to the prevention of mother-to-child HIV transmission (PMTCT) in Tanzania.

BACKGROUND: Websites that address national public health issues provide an important mechanism to improve health education and services in resource limited countries. This article describes the development, promotion and initial evaluation of a national website to increase access to information and resources about prevention of mother-to-child transmission of HIV (PMTCT) among healthcare workers and PMTCT stakeholders in Tanzania. METHODS: A participatory approach, involving the Tanzania Ministry of Health and Social Welfare (MOHSW) and key PMTCT stakeholders, was used to develop and manage the online PMTCT National Resource Center (NRC), http://pmtct.or.tz/ . The website was created with a content management system software system that does not require advanced computer skills and facilitates content updates and site management. The PMTCT NRC hosts related regularly updated PMTCT-related news, resources and publications. Website implementation, access and performance were evaluated over two years using Google Analytics data about visits, page views, downloads, bounce rates and location of visitors, supplemented by anecdotal feedback. RESULTS: Following its launch in July 2013, the PMTCT NRC website received a total of 28,400 visits, with 66,463 page views, over 2 years; 30 % of visits were from returning visitors. During year 1, visits increased by 80 % from the first to second 6 month period and then declined slightly (9-11 %) but remained stable in Year 2. Monthly visits spiked by about 70 % during October 2013 and January 2014 in response to the release and promotion of revised national PMTCT guidelines and training manuals. The majority of visitors came from primarily urban areas in Tanzania (50 %) and from other African countries (16 %). By year 2, over one-third of visitors used mobile devices to access the site. CONCLUSIONS: The successfully implemented PMTCT NRC website provides centralized, easily accessed information designed to address the needs of clinicians, educators and program partners in Tanzania. Ongoing involvement of the MOHSW and key stakeholders are essential ensure the website's growth, effectiveness and sustainability. Additional efforts are needed to expand use of the PMTCT NRC throughout the country. Future evaluations should examine the role of the website in supporting implementation of national PMTCT guidelines and services in Tanzania.

Building social networks for health promotion: Shout-out Health, New Jersey, 2011.

BACKGROUND: Building social networks for health promotion in high-poverty areas may reduce health disparities. Community involvement provides a mechanism to reach at-risk people with culturally tailored health information. Shout-out Health was a feasibility project to provide opportunity and support for women at risk for or living with human immunodeficiency virus infection to carry out health promotion within their informal social networks. COMMUNITY CONTEXT: The Shout-out Health project was designed by an academic-community agency team. During 3 months, health promotion topics were chosen, developed, and delivered to community members within informal social networks by participants living in Paterson and Jersey City, New Jersey. METHODS: We recruited women from our community agency partner's clients; 57 women participated in in-person or online meetings facilitated by our team. The participants identified and developed the health topics, and we discussed each topic and checked it for message accuracy before the participants provided health promotion within their informal social networks. The primary outcome for evaluating feasibility included the women's feedback about their experiences and the number of times they provided health promotion in the community. Other data collection included participant questionnaires and community-recipient evaluations. OUTCOME: More than half of the participants reported substantial life challenges, such as unemployment and housing problems, yet with technical support and a modest stipend, women in both groups successfully provided health promotion to 5,861 people within their informal social networks. INTERPRETATION: Shout-out Health was feasible and has implications for building social networks to disseminate health information and reduce health disparities in communities.

Preconception and contraceptive care for women living with HIV.

Women living with HIV have fertility desires and intentions that are similar to those of uninfected women, and with advances in treatment most women can realistically plan to have and raise children to adulthood. Although HIV may have adverse effects on fertility, recent studies suggest that antiretroviral therapy may increase or restore fertility. Data indicate the increasing numbers of women living with HIV who are becoming pregnant, and that many pregnancies are unintended and contraception is underutilized, reflecting an unmet need for preconception care (PCC). In addition to the PCC appropriate for all women of reproductive age, women living with HIV require comprehensive, specialized care that addresses their unique needs. The goals of PCC for women living with HIV are to prevent unintended pregnancy, optimize maternal health prior to pregnancy, improve maternal and fetal outcomes in pregnancy, prevent perinatal HIV transmission, and prevent HIV transmission to an HIV-uninfected sexual partner when trying to conceive. This paper discusses the rationale for preconception counseling and care in the setting of HIV and reviews current literature relevant to the content and considerations in providing PCC for women living with HIV, with a primary focus on well-resourced settings.

A Nurse-Led Initiative to Improve Implementation of HIV Preconception Care Services.

ABSTRACT: United States guidelines recommend preconception care (PCC) as an integral part of primary care to improve maternal and fetal/newborn outcomes and promote planned pregnancies. Persons living with HIV have additional, specialized needs for PCC. However, PCC is not reliably integrated in HIV care, and few studies have examined strategies to improve the provision of PCC services. We describe a successful, nurse-led initiative that incorporated collaborative strategic planning in conjunction with staff education and continuous quality improvement to strengthen implementation of PCC in a small urban HIV care clinic. Key features of this project included consensus building, training, and action planning with clinic staff; addressing clinic-specific barriers; and providing ongoing support/technical assistance. Continuous quality improvement reviews at 12, 18, and 36 months demonstrated improved and sustained implementation of PCC services for women and men. Our experiences serve as a model for HIV primary care clinics working to advance implementation of PCC services.

Improving postpartum retention in care for women living with HIV in the United States.

: Research findings have consistently demonstrated that women living with HIV in the United States and globally experience declines in medication adherence and retention in care after giving birth. A number of studies have identified factors associated with postpartum retention in care, but the evidence base for interventions to address the problem and close this gap in the HIV care continuum is limited. Furthermore, the majority of studies have been conducted in low-resource or moderate-resource countries and may be less applicable or require adaptation for use in high resource countries. In the United States, up to two-thirds of women drop out of care after delivery and are unable to maintain or achieve viral suppression postpartum, at a time when maternal and pediatric health are closely linked. We conducted a critical review of the literature to identify existing gaps regarding maternal retention in the United States and conceptualize the problem through the lens of the integrated and ecological models of health behavior. This review describes existing barriers and facilitators to retention in HIV care postpartum from published studies and suggests steps that can be taken, using a multilevel approach, to improve maternal retention. We propose five core action steps related to increasing awareness of the problem of poor postpartum retention, addressing needs for improved care coordination and case management, and using novel approaches to adapt and implement peer support and technology-based interventions to improve postpartum retention and clinical outcomes of women living with HIV.

Models of HIV Preconception Care and Key Elements Influencing These Services: Findings from Healthcare Providers in Seven US Cities.

Preconception care can improve maternal and infant outcomes by identifying and modifying health risks before pregnancy and reducing unplanned pregnancies. However, information about how preconception care is provided to persons living with HIV (PLWH) is lacking. This study uses qualitative interviews with HIV care providers to describe current models of preconception care and explore factors influencing services. Single, anonymous, telephone interviews were conducted with 92 purposively selected HIV healthcare providers in Atlanta, Baltimore, Houston, Kansas City, Newark, Philadelphia, and San Francisco in 2013-2014. Content analysis and a grounded theory approach were used to analyze data. Participants included 57% physicians with a median of 10 [interquartile range (IQR) = 5-17] years HIV care experience; the mean proportion of female patients was 45%. Participants described Individual Provider (48.9%), Team-based (43.2%), and Referral-only (7.6%) models of preconception care, with 63% incorporating referrals outside their clinics. Thematic analysis identified five key elements influencing the provision of preconception care within and across models: consistency of delivery, knowledge and attitudes, clinic characteristics, coordination of care, and referral accessibility. Described models of preconception care reflect the complexity of our healthcare system. Qualitative analysis offers insights about how HIV clinicians provide preconception care and how key elements influence services. However, additional research about the models and outcomes of preconception care services are needed. To improve preconception care for PLWH, research and quality improvement initiatives must utilize available strengths and tackle existing barriers, identified by our study and others, to define and implement effective models of preconception care services.

Perinatal HIV Service Coordination: Closing Gaps in the HIV Care Continuum for Pregnant Women and Eliminating Perinatal HIV Transmission in the United States.

Eliminating perinatal transmission of HIV and improving the care of childbearing women living with HIV in the United States require public health and clinical leadership. The Comprehensive Care Workgroup of the Elimination of Perinatal HIV Transmission Stakeholders Group, sponsored by the Centers for Disease Control and Prevention, developed a concept of perinatal HIV service coordination (PHSC) and identified 6 core functions through (1) semistructured exploratory interviews with contacts in 11 state or city health departments from April 2011 through February 2012, (2) literature review and summary of data on gaps in services and outcomes, and (3) group meetings from August 2010 through June 2017. We discuss leadership strategies for implementing the core functions of PHSC: strategic planning, access to services, real-time case finding, care coordination, comprehensive care, and data and case reviews. PHSC provides a systematic approach to optimize services and close gaps in perinatal HIV prevention and the HIV care continuum for childbearing women that can be individualized for jurisdictions with varying needs.

Negative life events: risk to health-related quality of life in children and youth with HIV infection.

Children and youth with perinatally acquired HIV infection are living longer because of improved drug therapies, but they may be at risk for poor health-related quality of life (HRQOL) outcomes because of nondisease factors. Families affected by HIV disease are more likely to experience major negative life events (NLEs). The effects of NLEs, shown to impact HRQOL in children with other chronic illnesses, have not been evaluated in children with HIV infection. The primary objective of this study was to determine if NLEs occurring in the previous 12 months were associated with increased risk for poorer outcomes in three measures of HRQOL (health perception, behavior problems, and symptom distress) in a cohort of children and youth with HIV infection. The authors conducted a cross-sectional analysis of data determined in 1999 from 1,018 children and youth 5 to 21 years of age enrolled in a longitudinal follow-up study. Multivariate logistic regressions estimated the odds for worse HRQOL outcomes. Children and youth with one or more NLEs had significantly lower health perceptions, more behavior problems, and greater symptom distress than children with no reported NLEs. The occurrence of NLEs may present a significant nondisease risk for diminished HRQOL among children and youth challenged by HIV disease. Nursing efforts to support these younger patients and their families sustaining major family disruption caused by NLEs may improve overall health outcomes in this vulnerable population.

Perinatal HIV Exposure Surveillance and Reporting in the United States, 2014.

OBJECTIVE: We sought to describe the current status of perinatal HIV exposure surveillance (PHES) activities and regulations in the United States and to make recommendations to strengthen PHES. METHODS: In 2014, we sent an online survey to health departments in the 50 states, District of Columbia, Puerto Rico, Virgin Islands, and 6 cities and counties (Chicago, Illinois; Houston, Texas; Los Angeles, California; New York, New York; Philadelphia, Pennsylvania; and San Francisco, California). We analyzed responses from 56 of the 59 (95%) jurisdictions. RESULTS: Thirty-three of 56 jurisdictions (59%) reported conducting PHES and following infants to determine their infection status. Of the 33 jurisdictions performing PHES, 28 (85%) linked maternal and infant data, but only 12 (36%) determined the HIV care status of postpartum women. Themes of respondents' recommendations for strengthening PHES centered on updating laws and regulations to support PHES, reporting all HIV test results and linking vital records with PHES data to identify and follow HIV-exposed infants, communicating with health care providers to improve reporting, training staff, and getting help from experienced jurisdictions to implement PHES. CONCLUSIONS: Our findings indicate that data on perinatal exposure collected through the current system are inadequate to comprehensively monitor and prevent perinatal HIV exposure and transmission. Comprehensive PHES data collection and reporting are needed to sustain the progress that has been made toward lowering perinatal HIV transmission rates. We propose that minimum standards be established for perinatal HIV exposure reporting to improve the completeness, quality, and efficiency of PHES in the United States.

A faculty trainer model: increasing knowledge and changing practice to improve perinatal HIV prevention and care.

Although routine counseling and HIV testing of pregnant women is recommended, it is not yet universally offered. This paper reports on a project that trained health care providers from 2000 to 2002 using a faculty trainer (or train-the-trainer) model. The goals of the projects were to increase knowledge and change practice, increase HIV counseling and testing in prenatal care, and improve management of HIV in pregnant women. In four jurisdictions of the southeastern United States, 193 health care providers attended faculty trainer workshops using a standardized curriculum. Eighteen providers used the curriculum to train an additional 545 health care providers over 2 years. Participants in both faculty trainer workshops and trainerled seminars reported significant increases in perceived knowledge in all content areas and the intention to change clinical practice. The number of providers who became faculty trainers and then led seminars varied widely among the jurisdictions. Six-month follow-up of faculty trainers, although limited by a 63% response rate, found that over 90% of respondents reported the workshop had a positive impact on their care of women with and at risk for HIV. Our findings indicate the faculty trainer model is an effective way to educate practicing clinicians. Key elements to successful implementation were: ongoing support of faculty trainers by acquired immune deficiency syndrome (AIDS) educators, involvement of local HIV experts as trainers and resource persons, and use of a standardized curriculum based on national guidelines.

Integrating health and prevention services in syringe access programs: a strategy to address unmet needs in a high-risk population.

Injection drug users are at a high risk for a number of preventable diseases and complications of drug use. This article describes the implementation of a nurse-led health promotion and disease prevention program in New Jersey's syringe access programs. Initially designed to target women as part of a strategy to decrease missed opportunities for perinatal HIV prevention, the program expanded by integrating existing programs and funding streams available through the state health department. The program now offers health and prevention services to both men and women, with 3,488 client visits in 2011. These services extend the reach of state health department programs, such as adult vaccination and hepatitis and tuberculosis screening, which clients would have had to seek out at multiple venues. The integration of prevention, treatment, and health promotion services in syringe access programs reaches a vulnerable and underserved population who otherwise may receive only urgent and episodic care.

Barriers to medication adherence in HIV-infected children and youth based on self- and caregiver report.

OBJECTIVE: Nonadherence to antiretroviral therapy among children/youth with HIV often is associated with disease progression. This study examined the agreement between child and caregiver perceptions of barriers to adherence and factors associated with these barriers. METHODS: Children/youth with perinatally acquired HIV and their parents/caregivers (n = 120 dyads) completed a questionnaire about 19 potential barriers to adherence to the child's antiretroviral therapy regimen. Agreement between the 2 reports was measured via the kappa statistic. Factors associated with the barriers were assessed by using multiple logistic regression. RESULTS: Of the 120 children, 55% were African American, 54% were boys, and the average age was 12.8 years. The most frequently reported barrier by either the caregiver or youth was "forgot." There were varying degrees of agreement between child and caregiver on the following barriers: "forgot," "taste," "child was away from home," "child refused," and "child felt good." Children who knew their HIV status were more likely to report logistical barriers, such as scheduling issues. Children with a biological parent as their caregiver were more likely to report regimen or fear of disclosure as a barrier. CONCLUSIONS: Lack of agreement was observed for more than half of the studied barriers, indicating discrepancies between children's and caregivers' perceptions of factors that influence medication-taking. The findings suggest a need for interventions that involve both child and caregiver in the tasks of remembering when to administer the child's medications, sustaining adherence, and appropriately transitioning medication responsibility to the youth.

Women's opinions about routine HIV testing during pregnancy: implications for the opt-out approach.

The 1995 United States Public Health Service (USPHS) recommendation regarding HIV testing for pregnant women was revised in 2003 calling for routine HIV testing for pregnant women with patient notification. Routine testing (opt-out screening) offers women the opportunity to decline HIV testing but eliminates the requirement of pretest counseling and separate written consent. To assess women's opinions about the opt-out approach to HIV testing during pregnancy, a cross-sectional survey was conducted in May-June 2004 at 14 geographically diverse clinics funded by Ryan White CARE Act (RWCA) Part C and Part D agreements. Of 853 women respondents to the one-page, self-completed survey questionnaire, 90% agreed with routine HIV testing and 91% reported being comfortable with testing, demonstrating that the large majority of women agree with and support HIV testing as a part of routine prenatal care. Women's opinions were associated with HIV testing status, e.g., 76% of women who had never been tested for HIV thought HIV testing should be part of a routine pregnancy check-up as compared with women who were HIV-negative (93%) or HIV-positive (90%) (chi(2) = 31.3943, p < 0.0001). Comfort with HIV testing was associated with higher HIV knowledge. Approximately half of the respondents indicated that HIV tests are different from other tests and that women need more information prior to testing. Results demonstrated clear consensus in support of routine testing. Increased efforts to disseminate resources to providers coupled with providers' effective communication of information to pregnant women can build on the support that women have conveyed for HIV testing during pregnancy.

Protease inhibitor combination therapy, severity of illness, and quality of life among children with perinatally acquired HIV-1 infection.

OBJECTIVES: This study examines quality of life (QOL) among school-aged children with perinatally acquired HIV infection and compares QOL outcomes between treatment groups that differ according to the use of protease inhibitor (PI) combination therapy (PI therapy). To gain insights into how PI therapy might influence QOL, associations between severity of illness and QOL were also investigated. METHODS: Cross-sectional data for 940 children, 5 to 18 years of age, who were enrolled in Pediatric AIDS Clinical Trials Group Late Outcomes Protocol 219 were used to examine domains of caregiver-reported QOL, as assessed with the General Health Assessment for Children, during 1999. The General Health Assessment for Children is an age-specific, modular, QOL assessment that was developed for the study with previously validated measures. QOL differences between treatment groups were estimated with linear and logistic regressions that controlled for sociodemographic characteristics (age, gender, race/ethnicity, maternal/caregiver education, and respondent) and severity-of-illness indicators related to receipt of PI therapy (AIDS status, log(10) CD4+ cell counts, and height-for-age z scores). RESULTS: The mean age of participants was 9.7 years. Most children were non-Hispanic black (54%) or Hispanic (31%), and 49% of the participants were female. At the 1999 study visit, approximately 14% of children had severe immune suppression (<15% CD4+ cells), whereas 62% of children had > or =25% CD4+ cells, ie, no immune suppression. Participants did exhibit some lag in growth, with mean height and weight z scores of -0.70 and -0.20, respectively. Twenty-eight percent of the children were reported to have met criteria for AIDS at study entry (1993-1999). When treatment groups were compared, children receiving PI therapy (72%) were older, had lower CD4+ cell percentages, and had lower height and weight z scores than did those receiving non-PI therapies. They were also more likely to have met criteria for AIDS at study entry. The most commonly used PIs were ritonavir (46%) and nelfinavir (63%). Health perceptions ratings for most children were at the upper end of the scale, whereas ratings for 25% of the children ranged over the lower 70% of scale scores. Almost one half of the children had at least some limitations in physical functioning, with more frequent limitations in energy-demanding activities (46%) than in basic activities of daily living (32%). The Behavior Problems Index was used to assess psychologic functioning. The mean total Behavior Problems Index score (9.34) and the proportion of children with extreme scores (23%) were consistent with values reported for chronically ill children and those at social and economic risk. One or more limitations in social/school functioning were reported for 58% of children. More than one third of the children (38%) experienced > or =1 physical symptoms that were at least moderately distressing. Health perceptions, physical functioning, psychologic functioning, social/school functioning, and overall HIV symptom scores did not differ between treatment groups. However, receipt of PI therapy was associated with an increased rate of diarrhea (28 vs 13%; adjusted odds ratio: 2.59; 95% confidence interval: 1.74-3.85). Severity of illness was associated with QOL in all domains except psychologic functioning. Higher log(10) CD4+ cell counts, higher height-for-age z scores, and absence of AIDS at study entry were independently associated with fewer social/school limitations and better HIV symptom scores. Health perceptions and physical functioning scores were associated with log(10) CD4+ cell counts and height z scores, respectively. CONCLUSIONS: QOL among children receiving PI therapy differed little from that among children receiving non-PI therapy, despite clinical indications of more advanced disease. Importantly, the study found no evidence of direct negative effects of PI therapy on QOL outcomes, other than an increased rate of diarrhea. Findings suggest that the effects of PI combination therapies to slow or to prevent disease progression and to increase CD4+ cell counts and height growth have the potential to improve QOL among children with HIV infection. However, many children do experience a constellation of functional impairments indicated by behavioral problems and clinical symptoms, with limitations in activities and in school performance. Comprehensive health services will continue to be required to minimize long-term illness and disability and to maximize children's potential as they move into adolescence and adulthood.