Is it safe and worthwhile? A multi-site randomized clinical trial of FAmily CEntered (FACE) pediatric advance care planning for adolescents with cancer and their families.

Abstract

10557 Background: Many clinicians express concern that pediatric ACP (pACP) is too distressful for families. We describe the effect of FAmily CEntered pACP for Teens with Cancer (FACE-TC) on families’ self-reported experience. Methods: A 4-site, intent-to-treat, longitudinal, randomized clinical trial recruited adolescent/family dyads from hospital-based cancer-specialty clinics from 2016-2019. Adolescent/family dyads were screened/assented/consented/enrolled and randomized at a 2:1 ratio to either FACE-TC or Treatment as Usual control. FACE-TC is three weekly, 60-minute sessions with a certified facilitator (ACP survey; Next Steps: Respecting Choices Interview; Five Wishes advance directive). Satisfaction Questionnaire measured 7 positive (useful, helpful, load off my mind, satisfied, something I needed to do, courageous, worthwhile) and 6 emotional reactions (scared, hurtful, harmful, too much to handle, angry, sad). It was administered by a trained/blinded research assistant immediately following the Respecting Choices interview or 3 weeks post-baseline for controls. Results: Family participants were: primarily mothers (75%); mean age 46 years; 83% female; 82% white. Household income was ≤100% Federal poverty level for 26%; 58% had less than a Bachelor’s degree. Attendance was 92% for three FACE sessions. FACE families (N = 116) compared to controls were more likely to report the study was “worthwhile” (97% vs. 86%, 0 = 0.0245); “useful” (97% vs. 83%, p = 0.0102); “helpful” (96% vs. 79%, p = 0.0079); and “something I needed to do” (84% vs. 55%, p = 0.0006). FACE families (Mean 28.1, SD 3.3) reported higher positive subscale scores than control families (Mean 24.9, SD 4.4) (β = 2.98, p = 0.0001). No significant differences were found for age, gender, race, household income, or adolescent on active treatment. There were no differences between FACE or control dyads on the 6 emotional reactions subscale score. Conclusions: Among a geographically, economically diverse families, FACE pACP was safe and worthwhile. Clinicians can be assured that a structured facilitated pACP intervention, although emotionally intense, did not unduly distress families who found the experience overwhelmingly worthwhile. Results fill the gap about how to successfully engage families in pACP with their adolescent child. Clinical trial information: NCT02693665.