Paediatric advance care planning survey: a cross-sectional examination of congruence and discordance between adolescents with HIV/AIDS and their families.

Objectives: To identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs.

Methods: A cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised.

Results: Adolescents' mean age was 18 years (range ≥14-<21); 54% male; 92% African-American; 27% with prior AIDS diagnosis. If dying, 92% ; 85% ;; 71% and 77% . Best timing for end-of-life (EOL) decisions was (38%), (17%), (4%), (8%), (4%) and (19%). Prevalence-adjusted bias-adjusted Kappa (PABAK) measured congruence in pACP needs within adolescent/family dyads. There was substantial congruence in that (PABAK=0.83), and (PABAK=0.92) were very important or important. There was discordance about (PABAK=0.08) and (PABAK=0.32).

Conclusions: Areas of discordance were associated with life-sustaining choices and when to have the EOL conversation. Targeted, adolescent/family-centred, evidence-based pACP interventions are needed to improve family understanding of youth's EOL wishes.

Trial Registration Number: NCT01289444; Results.