Family-centered advance care planning by trained facilitators increased congruence in adolescent/surrogate preferences for end-of-life care, decreased decisional conflict, and enhanced communication quality. Families acknowledged a life-threatening condition and were willing to initiate end-of-life conversations when their adolescents were medically stable.

Background The influence of disease severity on cognitive and adaptive functioning in perinatally infected youth with (PHIV+/C) and without (PHIV+/NoC) a previous AIDS-defining illness (CDC Class C event), compared to perinatally exposed but uninfected youth (PHEU) is not well understood. Methods This was a cross-sectional analysis of cognitive and adaptive functioning in PHIV+/C (n=88), PHIV+/NoC (n=270), and PHEU (n=200) youth aged 7 to 16 years, from a multi-site prospective cohort study. Youth and caregivers completed the Wechsler Intelligence Scale for Children (WISC-IV) and the Adaptive Behavior Assessment System (ABAS-II) respectively. We compared means and rates of impairment between groups, and examined associations with other psychosocial factors. Results Overall mean scores on measures of cognitive and adaptive functioning were in the low average range for all three groups. After adjustment for covariates, mean full scale IQ (FSIQ) scores were significantly lower for the PHIV+/C group than the PHIV+/NoC and PHEU groups (mean=77.8 vs 83.4 and 83.3, respectively), while no significant differences were observed between the PHEU and PHIV+/NoC groups in any domain. Lower cognitive performance for the PHIV+/C group was primarily attributable to a prior diagnosis of encephalopathy. No significant differences between groups were observed in adaptive functioning. Conclusion For long-term survivors, youth with HIV infection and a prior CDC class C event have higher risk for cognitive but not adaptive impairment regardless of current health status; this finding appears attributable to a previous diagnosis of encephalopathy. Early preventive therapy may be critical in reducing risk of later neurodevelopmental impairments.

Objectives: To develop, adapt, and ensure feasibility, acceptability, and safety of the Family=Adolescent-Centered (FACE) Advance Care Planning intervention. Patients and Methods: Two-group, randomized, controlled trial in two hospital-based outpatient clinics in Washington, D.C. and Memphis, Tennessee, from 2006 to 2008 was conducted. Participants (n ¼ 38 dyads) included medically stable adolescents aged 14 to 21 years with HIV=AIDS and surrogates=families over age 20. Three 60-to 90-minute sessions were conducted via a semistructured family interview with a trained=certified interviewer. Intervention received: (1) Lyon Advance Care Planning Survey; (2) Respecting Choices interview; and (3) Five Wishes. Control received (1) Developmental History, (2) Health Tips, and (3) Future Plans. Feasibility was measured by percent enrollment, attendance, retention, and completeness of data. Acceptability and safety were measured by Satisfaction Questionnaire, using longitudinal regression analysis. Results: Adolescents' mean age was 16 years; 40% were males; 92% were black; HIV transmission rate was 68% perinatal and 32% sexually acquired; 42% were asymptomatic; 29% were symptomatic; and 29% had a diagnosis of AIDS. Intervention adolescents were more likely to rate sessions positively ( p ¼ 0.002) and less likely to rate sessions negatively ( p ¼ 0.011) than controls. Guardians=surrogates were more likely to rate the sessions positively ( p ¼ 0.041) and demonstrated no difference in rating sessions negatively ( p ¼ 0.779) than controls. Conclusions: Existing advance care planning models can be adapted for age, disease, and culture. Adolescents with HIV=AIDS were satisfied with an advance care planning approach that facilitated discussion about their end-of-life wishes with their families. Families acknowledged a life-threatening condition and were willing to initiate end-of-life conversations when their adolescents were medically stable.

Mental health problems (MHPs) among children with perinatal HIV infection have been described prior to and during the highly active antiretroviral therapy (HAART) era. Yet child, caregiver and socio-demographic factors associated with MHPs are not fully understood. We examined the prevalence of MHPs among older children and adolescents with perinatal HIV exposure, including both perinatally HIV-infected (PHIV+) and perinatally HIV-exposed but uninfected (PHEU) youth. Our aims were to identify the impact of HIV infection by comparing PHIV+ and PHEU youth and to delineate risk factors associated with MHPs, in order to inform development of appropriate prevention and intervention strategies. Youth and their caregivers were interviewed with the Behavior Assessment System for Children, 2nd edition (BASC-2) to estimate rates of at-risk and clinically significant MHPs, including caregiver-reported behavioral problems and youth-reported emotional problems. The prevalence of MHPs at the time of study entry was calculated for the group overall, as well as by HIV status and by demographic, child health, and caregiver characteristics. Logistic regression models were used to identify factors associated with youth MHPs. Among 416 youth enrolled between March 2007 and July 2009 (295 PHIV+, 121 PHEU), the overall prevalence of MHPs at entry was 29% and greater than expected based on recent national surveys of the general population. MHPs were more likely among PHEU than among PHIV+ children (38% versus 25%, p < 0.01). Factors associated with higher odds of MHPs at p < 0.10 included caregiver characteristics (psychiatric disorder, limit-setting problems, health-related functional limitations) and child characteristics (younger age and lower IQ). These findings suggest that PHEU children are at high risk for MHPs, yet current models of care for these youth may not support early diagnosis and treatment. Family-based prevention and intervention programs for HIV affected youth and their caregivers may minimize long-term consequences of MHPs.

Patients with severe SCA and their parents can identify their treatment preferences. Improved understanding of their preferences and decision-making process will aid in the design of future clinical trials and in medical decision-making.

Background This study evaluated effects of perinatal exposure to antiretroviral (ARV) medications on neurodevelopment of HIV-exposed, uninfected infants. Methods HIV-exposed, uninfected infants (age 9-15 months) enrolled in SMARTT, a multisite prospective surveillance study, completed the Bayley Scales of Infant and Toddler Development—Third Edition (Bayley-III), assessing cognition, language, motor skills, social-emotional development, and adaptive behavior. Linear regression models were used to evaluate associations between Bayley-III outcomes in infants with and without perinatal and neonatal ARV exposure, by regimen (combination ARV [cARV] versus non-cARV), type of regimen (defined by drug class), and individual ARVs (for infants with cARV exposure), adjusting for maternal and infant health and demographic covariates. Results As of May 2010, 374 infants had valid Bayley-III evaluations. Median age at testing was 12.7 months; 49% male, 79% black, 16% Hispanic. Seventy-nine percent were exposed to regimens containing protease inhibitors (PIs; 9% of PI-containing regimens also included non-nucleoside reverse transcriptase inhibitors [NNRTIs]), 5% to regimens containing NNRTIs (without PI), and 14% to regimens containing only nucleoside reverse transcriptase inhibitors (NRTIs). Overall, 83% were exposed to cARV. No Bayley-III outcome was significantly associated with overall exposure to cARV, ARV regimen, or neonatal prophylaxis. For individual ARVs, following sensitivity analyses, the adjusted group mean on the Language domain was within age expectations but significantly lower for infants with perinatal exposure to atazanavir (p=0.01). Conclusions These results support the safety of perinatal ARV use. Continued monitoring for adverse neurodevelopmental outcomes in older children is warranted, and the safety of atazanavir merits further study.

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.

The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14–21 years with HIV/AIDS and their families were randomized (N = 105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14–21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK = 0.688 vs. 0.335; Functional impairment, PABAK = 0.687 vs. PABAK= 0.34; Mental impairment, PABKA = 0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment = 22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.