Background and Aims Pediatric advance care planning (pACP) is a process of preparation and skill development to facilitate discussions about future medical care choices. We evaluated the efficacy of FACE®-TC on adolescents’ decisional support, preparedness, and quality of life (QoL).
Methods Single blinded, intent-to-treat randomized clinical trial. Adolescents with cancer/family dyads were randomized at a 2:1 ratio to either FACE®-TC or Treatment as Usual (TAU) at four pediatric hospitals. Dyads received 3 weekly 60-minute FACE®-TC sessions: pACP Survey; Respecting Choices® Next Steps™ ACP; and Five Wishes. Control dyads received Treatment As Usual (TAU). All received pACP information. Outcome measures were: Decisional Support and Preparedness; FACIT-Spirituality; and PROMIS measures.
Results 126 dyads underwent randomization (83 FACE-TC and 43 TAU). Compared to TAU, FACE-TC adolescents were significantly more likely to agree or strongly agree to ‘I feel prepared for the future’ (76%vs.94%, p=0.025) and to ‘I feel we are now on the same page’ (76%vs.94%, p=0.044) at 3 months post-intervention (N=107). There was no intervention effect at 12-months (N=104). Compared to TAU, FACE-TC had no significant effect on meaning/purpose or peace at 3-months, but significantly decreased meaning/peace at 12-months [Mean, SD=28(4) vs.26(5), p=0.029]. Compared to TAU, FACE-TC had no effect on the PROMIS measures at 3 months, but significantly increased Pain Interference [Mean, SD=40(80 vs.4 (10), p=0.030]; Anxiety [42(12) vs.52(10), p=0.001; Depressive symptoms [43(8) vs.49(11), p=0.007] at 12-months.
Conclusions Although FACE-TC increased adolescents’ feelings of being prepared and supported. By 12-months FACE-TC adolescents had poorer quality of life. The outbreak of COVID during the 12-month follow-up visits may have made pACP more salient, given this effect was not observed at 3-months post-intervention.
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