Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer

Children'S Research Institute, Washington DC

Investigators

Linked publications & trials

Abstract

? DESCRIPTION (provided by applicant): 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.