FAmily CEntered (FACE) Advance Care Planning for Teens With Cancer
Condition: Cancer
Study type: Interventional

Summary: 
      Advance Care Planning (ACP) prepares patients and their loved ones for future health care
      decisions, including end-of-life decisions. Yet, the needs of adolescent oncology patients
      for participation in ACP, despite its priority, is not well studied. Our goal is to test a
      model of ACP that anticipates these issues, fully empowers the family and adolescent, and
      keeps the key role of health care professionals central, building on our earlier work. We
      hypothesized FAmily CEntered (FACE) ACP, would: (1) increase congruence in treatment
      preferences between adolescents and surrogates; (2) decrease decisional conflict for
      adolescents; and (3) increase quality of communication compared with controls.
    

Detailed description: 
      Condition The purpose of the FACE intervention is to facilitate conversations about EOL care
      between adolescents and their legal guardians or surrogates in order to increase congruence
      in treatment preferences, to decrease decisional conflict, while supporting plans and
      actions, psychological adjustment and quality of life. This intervention will consist of
      three 60 to 90-minute sessions in a dyadic format with a trained/certified interviewer. Each
      session will be followed by a 15 minute assessment, using process measures to assess
      participants' ratings of the quality of the communication with the facilitator and
      satisfaction (negative and positive emotions in response to session) on a Likert scale. A
      research assistant, not the facilitator, will conduct the immediate post evaluation sessions.
      A Standard of Care comparison condition will also be assessed and measures administered at
      the same time intervals: at baseline, one week intervals for three weeks for process measures
      and Statement of Treatment Preferences, and at 3 month-post intervention follow-up.
    

Intervention name(s): FACE; Standard of Care (SOC) Control
Intervention type(s): Behavioral; Behavioral
Intervention description(s): FACE intervention goal is to facilitate conversations about EOL care between adolescents and their legal guardians/surrogates to increase congruence in treatment preferences, to decrease decisional conflict, while supporting plans and actions, psychological adjustment and quality of life. Three 60 to 90-minute sessions in a dyadic format with a trained/certified interviewer. Session 1. The Lyon Family Centered Advance Care Planning Survey©. Session 2. Respecting Choices® Family-Centered Cancer Specific ACP Interview. Session 3. Completion of Five Wishes©.; Standard of Care (SOC) control will be provided with written information that encourages conversation the treatment team. At Children's National the following represent hospital policy: " … regarding advance directives … to honor each non-minor patient's wishes … to encourage and assist patients in determining and expressing their preferences regarding treatment decisions for use in the event they subsequently become unable to make such decisions." Upon admission if they do not have an advance directive, they should be given the "Advance Directive Information Booklet" and the Advance Directive Checklist. If they already have one, the patient is asked to provide a current copy, and it is placed in the medical record.
Other intervention name(s): FAmily CEntered (FACE) Advance Care Planning; Standard of Care Control plus Information
Allocation: Randomized
Intervention model: Single Group Assignment
Masking: None (Open Label)
Primary purpose: Supportive Care
Keywords: advance care planning, palliative care, pediatric