Background: This study assesses the relationship between child and caregiver perceptions of medication responsibility, disease knowledge, regimen complexity and adherence to highly active antiretroviral therapy among HIV-positive children. We also examine the association of adherence to child and caregiver demographic characteristics and surrogate markers of HIV disease. Methods: For this 6-month longitudinal study, 24 HIV-positive children (mean age = 14.0 years) being treated with highly active antiretroviral therapy and their caregivers completed measures of medication responsibility and disease knowledge. Medication Event Monitoring System caps calculated adherence across months 1 through 3 (time 1) and 4 through 6 (time 2). Results: Medication Event Monitoring System data revealed adherence rates of 81% at time 1 and 79% at time 2. Only 8% (n = 2) of child–caregiver pairs reported complete agreement regarding who held responsibility for medication-related tasks. Patients' responsibility for medication was correlated with age based on child (r = .51) and caregiver (r = .57; Ps < 0.05) perceptions, although their regimen knowledge was not. Greater regimen knowledge among caregivers and fewer child–caregiver discrepancies about medication responsibility predicted better adherence (adjusted R² = .45). Finally, adherence was correlated with CD4 percentages at time 1 (r = .50) and viral load at time 1 (r = −.56) and time 2 (r= −.68; Ps < 0.05). Conclusions: Medication adherence among HIV-infected children is lower than required for optimal viral suppression. Adherence is related to surrogate markers of HIV disease but not to child or caregiver demographic variables. Responsibilities for medication-related tasks should be clarified among family members, regimen knowledge should be emphasized and caregivers should avoid assigning treatment responsibility to a child prematurely.

Objective This descriptive cross-sectional study aimed to determine how cognitive, disease, and environmental variables relate to social–emotional functioning in youth with NF1 and plexiform neurofibromas. Methods Psychological assessments were administered to 53 children (mean age 12.4 years); parents and teachers completed the Behavior Assessment System for Children—Second Edition (BASC-2). Disease severity was quantified by nurse–practitioner ratings and tumor burden, and parents completed a life events checklist to indicate environmental stressors. Results Notable proportions of children scored in the at-risk/clinically significant ranges on several parent and teacher BASC-2 subscales including Somatization, Attention Problems, Depression, and Withdrawal. Combinations of cognitive, disease, and environmental variables predicted scores on parent BASC-2 Internalizing Problems, Behavior Symptoms Index, and Adaptive Skills composites. Conclusions Cognitive, disease, and environmental variables relate to social–emotional outcomes in children with NF1. These youth may benefit from interventions targeting social skills, cognitive functioning, and adaptive ways of coping with NF1-related pain.

In today's era of highly active antiretroviral therapy (HAART), few children with HIV-1 infection experience severe central nervous system (CNS) manifestations indicative of encephalopathy. However, little is known about the neurocognitive strengths and weaknesses of HIV-infected children treated with HAART. This cross-sectional study is the first to systematically investigate the relation between cognitive functioning and medical markers in HIV-infected children and adolescents treated with HAART with varying levels of computed tomography (CT) brain scan abnormalities. The Wechsler Intelligence Scale for Children–Third Edition was administered to 41 vertically infected children (mean age = 11.2 years) treated with HAART for at least 1 year. Other procedures at the time of testing included CT brain scans and collection of CD4 cell counts and plasma HIV–1 RNA PCR. Although global cognitive functioning among participants was in the Average range, children with minimal to moderate CT brain scan abnormalities...

Adolescent and young adults (AYAs) with chronic illnesses cope with complex issues that require unique psychological support and healthcare services to reduce psychosocial difficulties, improve disease management, and facilitate positive transitions to adult care. Engaging patients and caregivers can help providers understand the specific needs of this population and identify the perceived areas of support. The purpose of this quality improvement initiative is to assess the needs of AYAs with chronic medical conditions at a large government research hospital. Eighty-nine AYA patients (age = 23.5 years; range 13–34) with neurofibromatosis type 1, cancer, primary immunodeficiencies, or sickle cell disease, and a sample of caregivers (n = 37, age = 52 years; range: 41–65), completed an anonymized survey that assessed their preferences for a wide range of informational and service-related needs. The results indicate an overwhelming desire for information about general health and wellbeing and disease-specific medical knowledge. The most endorsed item was the need for more information about an individual’s medical condition (72%), which was a primary concern across disease, racial, and gender groups. Demographic and disease-specific needs were also identified. Thus, providing information to AYA patients and caregivers is a critical and largely unmet component of care, which requires the development and implementation of targeted educational and psychosocial interventions.