FAmily CEntered (FACE) Advance Care Planning for Teens With Cancer

Maureen Lyon

Status: Completed

Conditions: Cancer

Treatments: Behavioral: FACE; Behavioral: Standard of Care (SOC) Control

Study type: Interventional

Funder types: Other

Identifiers

NCT01670461

PEP-10-171-01-PCSM

Details and patient eligibility

About

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.

Full 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.

Enrollment: 60 patients

Sex: All

Ages: 14 to 90 years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

Primary purpose: Supportive Care

Allocation: Randomized

Interventional model: Single Group Assignment

Masking: None (Open label)

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60 participants in 2 patient groups

FACE Advance Care Planning

Experimental group

Description:

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©.

Treatment:

Behavioral: FACE

Standard of Care (SOC) Control

Other group

Description:

Standard of Care Control: Advance Directive Information Booklet plus Advance Directive Checklist.

Treatment:

Behavioral: Standard of Care (SOC) Control