Stressful life events and their relationship to psychological and medical functioning in children and adolescents with HIV infection.

OBJECTIVES: To assess the relationship between number and type of stressful life events (SLEs) and psychological and medical functioning in HIV-infected children. METHODS: For this cross-sectional study, caregivers of 55 vertically infected children aged 8-17 years completed a measure assessing SLEs occurring in the past 6 months. Children and caregivers both completed a questionnaire assessing the child's level of depression and anxiety. Concurrent demographic and medical data were gathered from chart review. RESULTS: School-related SLEs were the most common type of event and predicted child-reported depressive symptoms. Children who had disclosed their diagnosis in the past 6 months were rated as more anxious by their caregivers than nondisclosers. Also, disclosers had lower CD4 percentages and absolute counts and higher viral load levels and were more likely to have been hospitalized recently. The total number of loss-related SLEs predicted viral load levels. Finally, children who experienced at least 1 financially related SLE had lower CD4 counts and were more likely to have been hospitalized than those experiencing no financial SLEs. Overall, children and caregivers reported nonsignificant levels of child depression and anxiety. CONCLUSIONS: Both the total number and type of SLEs experienced have important implications for psychological and medical functioning in HIV-infected youth.

A comparison of adherence assessment methods utilized in the United States: perspectives of researchers, HIV-infected children, and their caregivers.

This study sought to elucidate methodological issues in adherence research by comparing multiple methods of assessing adherence to antiretroviral medication. From 2003 to 2004, 24 youths with vertically infected HIV disease (mean age = 14.0 years; range, 8-18) and their caregivers participated in a 6-month study. These children were all on highly active antiretroviral therapy (HAART) and were relatively healthy (mean CD4 absolute count = 711.8 +/- 604.5). Adherence was assessed with the Medication Event Monitoring System (MEMS), pill counts, and interviews. Patients and caregivers completed the Perceptions of Adherence Study Participation (PASP) questionnaire. MEMS provided the most detailed adherence information, and good reliability was indicated by significant correlations with medical markers. Pill counts provided similar adherence rates, while patients and caregivers reported nearly perfect adherence in interviews. Problems were experienced with each method: MEMS were expensive, had cap malfunctions, and lack a consistent guiding principle for data interpretation. With pill counts, families forgot to bring all medication bottles to clinic, and interviews were compromised by social desirability and difficulty reaching families by telephone. Most patients and caregivers believed study participation improved the child's adherence, although PASP ratings were unrelated to adherence at the study endpoint. While MEMS may be most reliable, pill counts offer comparable data and are less costly, while interviews seemed least accurate in this study. Most participants reported positive perceptions of their research experience. A consensus among researchers is needed for defining and measuring adherence, and specific recommendations are offered for achieving this goal.

Virologic response using directly observed therapy in adolescents with HIV: an adherence tool.

Virologic response to highly active antiretroviral therapy (HAART) treatment of HIV infection depends on viral sensitivity to antiretrovirals and excellent medication adherence. Adolescents with vertically acquired HIV may require complicated regimens because of significant treatment experience and often have poor medication adherence. A retrospective chart review identified five adolescents with vertically acquired HIV and plasma HIV viral load rebound or nonresponse on a stable HAART regimen followed by a period of directly observed therapy (DOT) in a clinic or hospital setting with serial viral load measurements. Four subjects had a virologic response (mean decline, 1.15 log10) after DOT. A response to HAART can be seen despite antiretrovirals resistance using DOT and treatment-experienced patients seemingly unresponsive to HAART may be nonadherent even with reassuring adherence measures. A period of clinic-monitored DOT may allow diagnosis of nonadherence, discussion of medication barriers, and avoidance of unnecessary medication changes.

The Antiretroviral Regimen Complexity Index. A novel method of quantifying regimen complexity.

BACKGROUND: Individuals with HIV disease often must adhere to complex medication regimens. To date, regimen complexity has not been examined in the literature using standardized procedures incorporating all important elements of antiretroviral (ARV) regimens. OBJECTIVE: This article presents a novel method of quantifying regimen complexity using objective criteria addressing the factors that may complicate adherence to ARV regimens. METHODS: Part 1 of this article describes the development of the Antiretroviral Regimen Complexity (ARC) Index scoring system. Based on input from pediatric and adult patients, caregivers of pediatric patients, and health care professionals, this comprehensive system includes the number of medications, dosing schedules, administration methods, special instructions, and required preparations associated with ARV regimens. Weights are applied for each of these factors to produce an overall score representing the regimen's level of complexity. Part 2 of this article presents reliability and validity data for the system. RESULTS: The ARC Index demonstrates excellent test-retest and interrater reliability as well as strong construct and discriminant validity. An on-line version of this system minimizes computation errors. CONCLUSIONS: Although modifications may be necessary for patients requiring nonstandard dosing instructions, preliminary evidence supports the utility of this measure as a reliable and valid indicator of the complexity of antiretroviral treatment regimens.

Patient, caregiver and regimen characteristics associated with adherence to highly active antiretroviral therapy among HIV-infected children and adolescents.

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 R = .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.