Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT

Abstract

Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like caregivers of adult patients, struggle to initiate this conversation. Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer is a longitudinal, randomized, controlled, single-blinded clinical trial aimed at evaluating the efficacy of FAmily CEntered disease-specific advance care planning (ACP) for teens with cancer (FACE-TC). A total of 130 dyads (260 subjects) composed of AYAs 14-20years old with cancer and their family decision maker (≥18years old) will be recruited from pediatric oncology programs at Akron Children's Hospital and St. Jude Children's Research Hospital. Dyads will be randomized to either the FACE-TC intervention or Treatment as Usual (TAU) control. FACE-TC intervention dyads will complete three 60-minute ACP sessions held at weekly intervals. Follow-up data will be collected at 3, 6, 12, and 18months post-intervention by a blinded research assistant (RA). The effects of FACE-TC on patient-family congruence in treatment preferences, quality of life (QOL), and advance directive completion will be analyzed. FACE-TC is an evidenced-based and patient-centered intervention that considers QOL and EOL care according to the AYA's representation of illness. The family is involved in the ACP process to facilitate shared decision making, increase understanding of the AYA's preferences, and make a commitment to honor the AYA's wishes.

Keywords: Advance directive; Cancer; End of life care; Medical decision-making; Pediatric advance care planning.

Conflict of interest statement

Conflicts of interest

There are no conflicts of interest to report.

Copyright © 2017 Elsevier Inc. All rights reserved.

Figures

Figure 1

FACE-TC Study Visit Visualization Key: FACE AYA= adolescent/young adult patient in intervention; TAU AYA=adolescent/young adult in control; F=family/surrogate decision maker; SoTP=Statement of Treatment Preferences; QOL=Quality of Life Questionnaire

Figure 2

Consort Diagram *Key: AYA = Adolescents and Young Adults; F = Family/Surrogate Decision Maker

Figure 3

Leventhal’s Common Sense Model of Self-Regulation of Health and Illness