FAmily CEntered (FACE) Advance Care Planning for Teens With Cancer
Overview
- Phase
- Not Applicable
- Intervention
- Not specified
- Conditions
- Cancer
- Sponsor
- Maureen Lyon
- Enrollment
- 60
- Locations
- 1
- Primary Endpoint
- Statement of Treatment Preferences
- Status
- Completed
- Last Updated
- 7 years ago
Overview
Brief 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.
Investigators
Maureen Lyon
Associate Research Professor in Pediatrics
Children's National Research Institute
Eligibility Criteria
Inclusion Criteria
- •Age ≥14.0 years and \<21.0 years for adolescents at enrollment;
- •Age ≥ 21.0 years for surrogates at enrollment;
- •IQ \> 70 or not known to be developmentally delayed;
- •Depression score on Beck Depression Inventory, Second Edition (BDI-II) Total Score \< 26;
- •Primary language English
Exclusion Criteria
- •In foster care;
- •Developmentally delayed;
- •Suicidal or homicidal or psychotic at time of screening;
- •Not understand or speak English; and
- •Failure on mini mental status exam
Outcomes
Primary Outcomes
Statement of Treatment Preferences
Time Frame: Week 3
Statement of Treatment Preferences expresses values and goals related to future decision making regarding frequently occurring scenarios common to individuals dying of cancer). This instrument will be used to document specific treatment preferences of patients and the surrogate's understanding of what the patient would want. Patients and surrogates choose one of three options, "to continue all treatment and keep fighting," "to stop all treatment to prolong my life," and "don't know." It can also be used to monitor changes in patient's preferences over time. This tool has been used in adults and in adolescents in the FACE study conducted by the PI.
Secondary Outcomes
- Quality of Patient-Interviewer Communication(Week 2, 3 and 4)
- Decisional Conflict Scale(Week 3)