Disclosure of their HIV status to perinatally infected youth using the adapted Blasini disclosure model in Haiti and the Dominican Republic: preliminary results.

OBJECTIVES: To assess the safety, acceptability, and preliminary efficacy of a culturally-adapted disclosure intervention for perinatally HIV-infected combined antiretroviral therapy patients in Haiti and the Dominican Republic. DESIGN: A quasi-experimental trial was conducted comparing caregiver-youth pairs who completed the intervention [adapted Blasini disclosure model (aBDM)] to pairs who discontinued aBDM participation before disclosure. aBDM consists of five components: structured healthcare worker training; one-on one pre-disclosure intervention/education sessions for youth (describing pediatric chronic diseases including cancer, diabetes and HIV) and for caregivers (strengthening capacity for disclosure); a scheduled supportive disclosure session; and one-on-one postdisclosure support for caregivers and youth. METHODS: Caregivers of nondisclosed combined antiretroviral therapy patients aged 10.0-17.8 years were invited to participate. Data were collected by separate one-on-one face-to-face interviews of caregivers and youth by study staff and medical record review by pediatricians at enrollment and 3 months after disclosure or after intervention discontinuation. RESULTS: To date, 65 Dominican Republic and 27 Haiti caregiver-youth pairs have enrolled. At enrollment, only 46.4% of youth had viral suppression and 43.4% of caregivers had clinically significant depressive symptomatology. To date, two serious study-related adverse events have occurred. Seven of the 92 (7.6%, 6 in the Dominican Republic) enrolled pairs discontinued participation before disclosure and 39 had completed postdisclosure participation. Median plasma HIV-RNA concentration was lower in youth who completed aBDM than in youth who discontinued participation before aBDM disclosure (<40 versus 8673 copies/ml; P = 0.027). Completers expressed considerable satisfaction with aBDM. CONCLUSION: Preliminary results suggest safety, acceptability, and possible effectiveness of the aBDM.

Depression in caregivers of status-naïve pediatric HIV patients participating in a status disclosure study in Haiti and the Dominican Republic: preliminary report.

A pilot study is underway to assess safety and acceptability of an intervention to disclose their HIV infection status to status-naïve pediatric antiretroviral therapy patients in Hispaniola [the island shared by Haiti and the Dominican Republic (DR)]. Of 22 Haiti and 47 DR caregivers recruited to date, 68.2% Haiti and 34.0% DR caregivers had clinically significant depressive symptomatology at the time of enrollment (p = 0.008). Depressive symptom prevalence was higher in Haiti caregivers who were female (81.3% vs. 0 in males; p = 0.02) and in DR caregivers who were patients' mothers (50.0%) or grandmothers (66.7%; 56.0% combined) than others (9.1%), (p < 0.001). Internalized stigma was more commonly reported by Haiti (85.7%) than DR (53.2%; p = 0.01) caregivers; 56.4% of Haiti and DR caregivers reporting internalized stigma vs. 26.1% of caregivers denying it had depressive symptoms (p = 0.02). Depression is common in Hispaniola caregivers possibly affecting disclosure timing. Study participation presents opportunities for addressing caregiver depression.

An analysis of select emerging executive skills in perinatally HIV-1-infected children.

This study examined the effect of perinatal HIV-1 infection on emerging executive skills in children (n = 161) ages 8 to 12 years. HIV-positive (n = 76) and HIV-negative (n = 85) children were eligible to participate. The HIV-positive children included those who had experienced a CDC Class C event (greater severity, n = 22) and those who were HIV-positive but who had not experienced a CDC Class C event (less severity, n = 54). Measures of emerging executive functions completed by the children included subtests from the Developmental Neuropsychological Assessment (NEPSY), the Trail-Making Test-Part B, and a subtest from the Woodcock-Johnson Battery-Revised. Ratings of executive functions were obtained from caretakers using the Behavior Rating Inventory of Executive Functions. Generalized estimating equations methods, discriminate analyses, and global deficit score analyses were performed to determine whether differences emerged between the three clinical groups while using strict controls. The present results revealed significant group differences in unadjusted mean scores measuring executive functioning. However, such differences did not remain statistically significant when moderating variables were taken into consideration in the models. The apparent deficit in executive functioning for the HIV-positive children was found to be largely due to differential psychosocial and environmental factors rather than HIV disease and its severity, and in this cohort, the effects of HIV-1 infection on emerging executive functions appeared to be negligible when controlling for treatment and moderating psychosocial variables.

Revelación del estado serológico para VIH/SIDA en niños, niñas y adolescentes: una revisión teórica / Disclosure of HIV serostatus children and adolescents: a theoretical review

El artículo presenta una revisión del estado del arte del proceso de revelación del estado serológico en la población infantil menor de 18 años afectada con VIH/SIDA. Los resultados de la revisión se presentan en torno a las modalidades y factores asociados al proceso revelación y no revelación del diagnóstico de VIH a niños, niñas y adolescentes por parte de sus cuidadores y profesionales que brindan servicios de salud en diversos contextos socioculturales y la situación en Colombia. Se seleccionaron artículos publicados en cinco bases de datos utilizándose como palabras clave para la búsqueda “disclosure”, “disclosure model”, “disclosure in children with HIV/AIDS” y ”pediatric HIV/AIDS”. Para la búsqueda se incluyeron artículos en los idiomas inglés y español entre los años 1990 y 2008.

The article presents a review of HIV serostatus disclosure in the under-18 population living with HIV/AIDS. The results include disclosure models and factors associated with disclosure and non disclosure of children and adolescents' HIV serostatus by their caregivers and health workers.The effects of these factors in various sociocultural contexts were studied, with emphasis on the Colombian context. Articles published in five databases were selected, using the key words “disclosure”, “disclosure model”, “disclosure in children with HIV/AIDS” and “pediatric HIV/AIDS”. Articles published in English and Spanish, and between 1990 and 2008, were included.

Effects of perinatal HIV infection and associated risk factors on cognitive development among young children.

OBJECTIVE: We examined the effect of HIV, in combination with other important health and social factors, on the development of cognitive abilities of children perinatally exposed to HIV. METHODS: Serial cognitive assessments were performed for 117 children who were infected vertically and 422 children who were exposed to but not infected with HIV, in a multicenter, natural history, longitudinal study. Repeated-measures analyses were used to evaluate the neurocognitive development of children between the ages of 3 and 7 years, as measured by the McCarthy Scales of Children's Abilities (MSCA). RESULTS: Children with HIV infection and class C status scored significantly lower in all domains of cognitive development, across all time points, than did those who were HIV infected without an AIDS-defining illness and those who were HIV exposed but not infected. There were no significant differences between the 2 latter groups in General Cognitive Index or specific domain scores. Rates of change in cognitive development were comparable (parallel) among all 3 groups over a period of 4 years. Factors that were associated consistently and significantly with lower mean scores were HIV status, number of times an examination had been completed previously, primary language, maternal education, and gender. No factors were related to rate of change of any mean domain score. CONCLUSIONS: An early AIDS-defining illness increased the risk of chronic static encephalopathy during the preschool and early school age years. Children with HIV infection but no class C event performed as well as noninfected children in measures of general cognitive ability. No significantly different profiles of strengths and weaknesses for verbal, perceptual-performance, quantitative, or memory functioning were observed among children with or without HIV infection. A number of factors were found to have significant effects on the mean scores of children in all 3 groups; however, they were not related to the rate at which learning occurred.

Effects of polymorphisms of chemokine receptors on neurodevelopment and the onset of encephalopathy in children with perinatal HIV-1 infection.

This study examined the effects of chemokine receptor polymorphisms on neurodevelopment and the onset of encephalopathy in children with perinatal HIV-1 infection. Infected children (N = 121) between the ages of I and 72 months were categorized into dichotomous groups (heterozygous or homozygous mutant vs. homozygous wild type) for each chemokine receptor 2 (CCR2) and chemokine receptor 5 (CCR5) allele. Neurodevelopmental measures included the Bayley Scales of Infant Development (BSID)for children age < or = 30 months and the McCarthy Scales of Children's Abilities (MSCA) for children aged > 30 months. A basic linear spline was used to model the mean value at each visit for the relevant test index, with determination of the slope between 4-12 months, 12-30 months, and 31-72 months of age. A mixed model analysis of variance was used to compare differences between slopes (AP) and intercepts (AX) according to the presence or absence of the specified CCR2 or CCR5 polymorphism. Survival analyses were used to compare the onset of encephalopathy by chemokine receptor allelic grouping. After adjusting for potential confounds, statistically significant differences emerged in CCR5-39353, 39356, and 39402. Although the protective effects appeared to be discrete and transient, children with mutant CCR5 genotypes exhibited better neurodevelopmental outcomes than children with the wild type alleles. Chemokine polymorphisms did not appear to impact the onset of encephalopathy. Although possibly a temporary effect, HIV-1 infected children with selected mutant chemokine receptor polymorphims CCR5-39353, 39356, and 39402 may exhibit better neurodevelopmental outcome than children with the wild type allele.

Disclosure model for pediatric patients living with HIV in Puerto Rico: design, implementation, and evaluation.

The American Academy of Pediatrics strongly encourages the disclosure of HIV status to school-age children and further recommends that adolescents know their HIV status. Limited information exists on the impact of disclosure. We designed and implemented a disclosure model hypothesized to be associated with healthy psychological adjustment and improved medication adherence. We report the model's design and implementation and results of a quasi-experimental study of the disclosure's effects on health care professionals (n = 16), caregivers (n = 39), and HIV-infected youth (n = 40) in Puerto Rico. Information was collected from youth, caregivers, and professionals by semistructured interviews and questionnaires. Most youth (70%) had feelings of normalcy 6 months post-disclosure, and most also improved their adherence to therapy after disclosure as reported by both patients (58%) and caregivers (59%). Eighty-five percent of youth and 97% of caregivers considered disclosure a positive event for themselves and their families. Fewer health care professionals reported feelings of fear, discomfort, and insecurity after protocol participation.

High rates of behavioral problems in perinatally HIV-infected children are not linked to HIV disease.

OBJECTIVE: Descriptive studies and clinical reports have suggested that human immunodeficiency virus (HIV)-positive children are at risk for behavioral problems. Inadequate control groups and sample sizes have limited the ability of investigators to consider multiple influences that place HIV-positive children at risk for poor behavioral outcomes. We examined the unique and combined influences of HIV, prenatal drug exposure, and environmental factors on behavior in children who were perinatally exposed to HIV. METHODS: Participants included 307 children who were born to HIV-positive mothers (96 HIV infected and 211 seroreverters) and enrolled in a natural history, longitudinal study of women to infant HIV transmission. Caregivers completed parent behavioral rating scales, beginning when the children were 3 years old. Data were also collected on prenatal drug exposure; child age, gender, and ethnicity; caregiver relationship to child; and birth complications. RESULTS: Multivariate analyses comparing the HIV-infected children with perinatally exposed but uninfected children from similar backgrounds failed to find an association between either HIV status or prenatal drug exposure and poor behavioral outcomes. The strongest correlates of increased behavioral symptoms were demographic characteristics. CONCLUSIONS: This study suggests that although a high prevalence of behavioral problems does exist among HIV-infected children, neither HIV infection nor prenatal drug exposure is the underlying cause. Rather, other biological and environmental factors are likely contributors toward poor behavioral outcomes.