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Family-Centered Advance Care Planning for Teens With Cancer

Maureen E. Lyon, PhD; Shana Jacobs, MD; Linda Briggs, MS, MA, RN; Yao Iris Cheng, MS; Jichuan Wang, PhD
JAMA Pediatr. 2013;167(5):460-467. doi:10.1001/jamapediatrics.2013.943.
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Importance Advance care planning (ACP) prepares patients and their families for future health care decisions; however, the needs of adolescent oncology patients for participation in ACP have not been well studied.

Objective To examine the efficacy of family-centered ACP.

Design and Setting Two-group randomized controlled trial in a pediatric oncology program.

Participants Sixty adolescents aged 14 to 21 years with cancer and their surrogates or families were enrolled in the study between January 17, 2011, and March 29, 2012.

Intervention Thirty dyads received 3- to 60-minute sessions 1 week apart. Intervention dyads completed (1) the Lyon Family-Centered ACP Survey, (2) the Respecting Choices interview, and (3) Five Wishes. Control subjects received standard care plus information.

Main Outcome Measures Statement of treatment preferences and Decisional Conflict Scale score.

Results The mean age of the adolescents was 16 years; 36 (60%) were male, 30 (50%) white, 26 (43%) black, and 4 (7%) Asian. Diagnoses were as follows: leukemia (14 patients [47%]), brain tumor (8 [27%]), solid tumor (6 [20%]), and lymphoma (2 [7%]). Significantly increased congruence was observed for intervention dyads compared with controls for 4 of the 6 disease-specific scenarios; for example, for situation 2 (“treatment would extend my life by not more than 2 to 3 months”), intervention dyads demonstrated higher congruence (κ = 0.660; P < .001) vs control dyads (κ = −0.0636; P = .70). Intervention adolescents (100%) wanted their families to do what is best at the time, whereas fewer control adolescents (62%) gave families this leeway. Intervention adolescents were significantly better informed about end-of-life decisions (t = 2.93; effect size, 0.961; 95% CI, 0.742-1.180; P = .007). Intervention families were more likely to concur on limiting treatments than controls. An ethnic difference was found in only one situation.

Conclusions Advance care planning enabled families to understand and honor their adolescents' wishes. Intervention dyads were more likely than controls to limit treatments. Underserved African American families were willing to participate.

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Figures

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Figure 1. CONSORT diagram for family-centered advance care planning (ACP). SOC indicates standard of care. Of the 126 potential participants, if one individual declined or was not ready, the other was not approached.

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Figure 2. Comparison of κ statistics by study arm and situation with P values for testing equal κ values.

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