How Are You Feeling? Assessing the Agreement between HIV+ Adolescents' Reports of Quality of Life with Their Families'

To examine the effect of an intervention on QOL improvement and agreement between adolescents and family ratings. Data were collected from the FAmily CEntered (FACE) Advance Care Planning randomized clinical trial between July 2011 and August 2013. Eligibility criteria were HIV positive, knew diagnosis, and a consenting family member. Participants were recruited from hospital-based outpatient adolescent clinics at three urban sites. Adolescent/family dyads were randomized into either the FACE intervention or the Healthy Living Control (HLC). We analyzed adolescent self-report (n = 72) and family (n = 72) self-report of perception of child's QOL, using the Peds Quality of Life Inventory™4.0 (PedsQoL) at Baseline and 3-month post intervention. Four domains – Physical, Emotional, Social, and School, as well as Total Score were assessed. Higher scores equal higher QOL. 144 participants (n = 72 adolescent/family dyads) were enrolled. Adolescents' mean age was 18 years; 43% female; 94.4% Black/African American; 70.8% perinatally infected. Family participant's mean age was 44 years (range 20 – 77). Randomization was successful. The intervention did not statistically significantly increase QOL among Control vs. FACE adolescents in a 3-month observation period (Total Score--Control = 82.1 vs. FACE = 77.9; Physical--84.6 vs. 84.1; Emotional--78.0 vs. 69.8; Social--94.3 vs. 86.9; School--69.8 vs. 66.1). However, agreement between adolescents' and family's ratings increased from Baseline to 3-month follow-up in two domains for FACE adolescents: 1.Emotional QOL Congruence increased from 0.21 to 0.61 (ICC Difference = 0.41) for FACE dyads vs. decrease in congruence for HLC dyads from 0.49 to 0.41 [Interclass Correlation Coefficients (ICC) difference -0.09]. 2. Social QOL Congruence increased from 0.41 to 0.62 (ICC Difference = 0.21) for FACE dyads with a comparable increase for HLC dyads from -0.02 to 0.2 (ICC Difference = 0.22). Physical QOL Congruence increased slightly for both FACE dyads from 0.4 to 0.43 (ICC Difference = 0.03) and HLC dyads from 0.5 to 0.59 (ICC Difference = 0.09). School QOL Congruence decreased for FACE dyads from 0.51 to 0.08 (-0.43 ICC Difference) and increased from 0.66 to 0.82 for HLC dyads (0.16 ICC Difference). At baseline perinatally infected adolescents vs. behaviorally infected adolescents reported significantly higher QOL in two domains: Emotional (= 84.4 vs. = 73.3; p = 0.041) and Physical (= 91.0 vs. = 84.5, p = 0.058), otherwise there were no significant differences between them. Understanding adolescents' QOL may influence family decision-making with respect to future healthcare utilization and end-of-life care. The FACE intervention increased communication in all domains, but School QOL, where adolescents denied problems and families reported problems. Higher Physical and Emotional QOL among perinatally infected adolescents was unexpected. This might represent a measure of their access to medical and mental health care from birth in comprehensive “one-stop” hospital-based clinics.