Our ultimate goal is to develop an international model of structured pediatric advance care planning (pACP), as part of pediatric palliative care at end of life (pPCEOL) from the time of diagnosis to the end of life. We propose building on our American Cancer Society funded pilot study, evidence-based intervention, the Family Centered (FACE) ACP for teens with cancer (FACE-TC), to test our full theoretical model with adolescents with cancer ages 14 up to 21, now that we have demonstrated feasibility and safety. This longitudinal, multi-site randomized, clinical, 2-arm, controlled trial will let us kno if FACE-TC helps families to understand what their teens would want for their own end-of-life care, if there was a bad outcome. We will also see if the increased agreement about treatment preferences continues over time, even if the choices change with disease progression. pACP with adolescents with cancer and their families is also aimed at enhancing quality of life [physical (fatigue, pain), psychological (symptoms of anxiety and depression), and spiritual ( meaning or purpose/peace)] for both patients and their caregivers. Finally, we will see if FACE-TC families are more likely to complete goals of care and advance directives. We will explore whether or not goals of care match care received for those young people who die while on study. We will also explore the influence of religious beliefs and experiences on treatment choices. pACP is important because avoiding these conversations may contribute to serious adverse consequences such as inappropriate and unwanted costly care, parents being charged with neglect, court battles and even legislative intervention. Families may be torn apart, rather than strengthened by parents' desire to protect their children and to be a good parent. FACE-TC is a culturally sensitive and developmentally appropriate, manualized family intervention based on transactional stress and coping theory, which prepares the dyad (adolescent/family) for end-of-life decision-making through problem solving. We will recruit from two hospital-based palliative care programs and randomize 130 dyads at a ratio of 2:1 (N=260 subjects) to either FACE-TC Intervention (N=87 dyads) or Treatment as Usual Control (N= 43 dyads). Participants with impaired mental status, severe depression, suicidality or homicidality or in foster care will not be allowed to participate. Three 60- to 90-minute sessions will be conducted with a certified interviewer at weekly intervals: FACE-TC: Session 1: Lyon Advance Care Planning Survey(c) - Adolescent and Surrogate Versions; Session 2: The Respecting Choices Interview(r); Session 3: Completion of The Five Wishes(c). Control will receive Treatment as Usual and an informational booklet on advance care planning. Outcome assessment measures will be administered at baseline, and 3, 6, 12 and 18 month post intervention. Growth mixture modeling (GMM) will assess outcomes.

Public Health Relevance

Teens with life limiting illnesses would like to have a voice in their own future medical care; and their families would like help breaking the ice to have these conversations. This study will give adolescents living with cancer a voice in their own end-of-life care, if they were to have a bad outcome, with the support of their families. This study will let u know what their choices are, whether the choices stay the same over time, whether religious experiences and beliefs influence their choices and if choices across racial groups are different or the same.

National Institute of Health (NIH)
National Institute of Nursing Research (NINR)
Research Project (R01)
Project #
Application #
Study Section
Special Emphasis Panel (ZNR1)
Program Officer
Kehl, Karen
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
Children's Research Institute
United States
Zip Code
Curtin, Katherine B; Watson, Anne E; Wang, Jichuan et al. (2017) Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT. Contemp Clin Trials 62:121-129