Publications by authors named "Deborah Storm"

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.

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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.

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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.

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: 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.

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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.

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Pre-exposure prophylaxis (PrEP) can reduce the risk of HIV transmission among serodifferent couples trying to conceive, yet provider knowledge, attitudes, and experience utilizing PrEP for this purpose are largely unexamined. Trained interviewers conducted phone interviews with healthcare providers treating patients with HIV in seven cities (Atlanta, Baltimore, Houston, Kansas City, Newark, Philadelphia, and San Francisco, N = 85 total). Quantitative and qualitative data were analyzed to describe experience, concerns, and perceived barriers to prescribing PrEP for safer conception.

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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.

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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.

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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.

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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).

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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.

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The impact of behavioral functioning on medication adherence in children with perinatally acquired HIV infection is not well-explored, but has important implications for intervention. This report addresses the relationship between behavioral functioning and child self-report or caregiver report of medication adherence among children and adolescents enrolled in Pediatric AIDS Clinical Trials Group Protocol 219C (conducted 2000-2007). A total of 1134 participants, aged 3-17 years, received a behavioral evaluation and adherence assessment.

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The purpose of this exploratory study was to solicit women's opinions about the process of routine prenatal HIV testing to identify strategies for routine testing that will address women's concerns, increase their level of comfort with testing, and support universal prenatal HIV testing. A convenience sample of English-speaking women between 18 and 45 years of age who were HIV-negative or of unknown HIV status were recruited for focus groups at four diverse community sites in four states. Focus group discussion questions addressed health care provider approaches and actions that would make a woman feel more comfortable with the process of routine prenatal HIV testing.

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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.

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Background: Little is known concerning the impact of HIV status disclosure on quality of life, leaving clinicians and families to rely on research of children with other terminal illnesses.

Objectives: The purpose of this work was to examine the impact of HIV disclosure on pediatric quality of life and to describe the distribution of age at disclosure in a perinatally infected pediatric population. METHODS.

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Background: Parent/caregiver or child/youth self-report and pill counts are commonly used methods for assessing adherence to antiretroviral therapy among children and youth with HIV. The purpose of this study was to compare these different methods with one another and with viral load.

Methods: Randomly selected parent/caregiver and child/youth dyads were interviewed using several adherence self-report measures and an announced pill count was performed.

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Objective: To evaluate the relationship between cognitive functioning and medication adherence in children and adolescents with perinatally acquired HIV infection.

Methods: Children and adolescents, ages 3-18 (N = 1,429), received a cognitive evaluation and adherence assessment. Multiple logistic regression models were used to identify associations between adherence and cognitive status, adjusting for potential confounding factors.

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Objective: The purpose of the study is to describe allocation of responsibility for illness management in families of children and adolescents perinatally infected with HIV.

Methods: A total of 123 youth (ages 8-18) and caregivers completed family responsibility and medication adherence questionnaires as part of a substudy of Pediatric AIDS Clinical Trials Group protocol 219c.

Results: Approximately one-fourth of the youth reported being fully responsible for taking medications.

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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.

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Background: Most evaluations of adherence to antiretroviral therapy in children with HIV infection have focused on validation of adherence measures via their association with virological outcomes. However, few studies have fully explored associations with other factors to guide development of adherence interventions.

Methods: In this study, we examined the relationship of self-reported medication adherence to health, demographic, and psychosocial characteristics of children and their caregivers, using data from an ongoing multicenter prospective observational study of long-term outcomes of HIV infection conducted by the Pediatric AIDS Clinical Trials Group.

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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.

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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.

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