Pediatric Advance Care Planning and Adolescent Preparedness and Quality of Life: An RCT

BACKGROUND AND OBJECTIVE: To evaluate the efficacy of Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC) on adolescents’ quality of life. METHODS: A clinical trial randomized adolescent-family dyads at a 2:1 ratio to either FACE-TC or control. FACE-TC dyads received 3 weekly 60-minute sessions: Lyon Pediatric Advance Care Planning Survey; Next Steps: Respecting Choices; and Five Wishes. Generalized mixed-effect models evaluated efficacy at 3, 6, and 12 months after intervention measured by FACIT-SP-Ex-V4 (meaning/peace, faith) and PROMIS pediatric (anxiety; depressive symptoms; pain interference, fatigue). Fisher exact tests assessed decisional support and preparedness. RESULTS: Adolescents (n = 126) were mean age 17 years, 57% female, and 79% white. No significant differences were found between groups for faith or meaning/peace. At 12 months after intervention compared to control, FACE-TC increased anxiety (mean ratio 1.14; CI 1.04–1.25), depressive symptoms (mean ratio 1.12; CI 1.02–1.22), and pain interference (mean ratio 1.10; CI 1.00–1.20), but not at 3 or 6 months. FACE-TC increased fatigue at 3 months (mean ratio 1.13; CI 1.02–1.26), but not at 6 or 12 months. Compared to control, adolescents participating in FACE-TC agreed that “I feel prepared for the future” (76% vs 94%) and “I feel we are now on the same page” (76% vs 94%) at 3 months, but not at 12 months. CONCLUSIONS: There were no significant differences in quality of life between groups until 1 year, except for fatigue. FACE-TC had late effects, increasing adolescents’ anxiety, depressive symptoms, and pain interference. Reassessment at 1 year is clinically important.