title: Family-centered advance care planning for teens with cancer.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  Two-group randomized controlled trial in a pediatric oncology program.
  
  
  METHODS
  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.
  
  
  METHODS
  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.
  
  
  METHODS
  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.
authors.affiliation: Centers for Translational Science, Children’s National Medical Center, Washington, DC 20010, USA. mlyon@cnmc.org
authors.forename: Maureen E
authors.initials: ME
authors.lastname: Lyon
authors.forename: Shana
authors.initials: S
authors.lastname: Jacobs
authors.forename: Linda
authors.initials: L
authors.lastname: Briggs
authors.forename: Yao Iris
authors.initials: YI
authors.lastname: Cheng
authors.forename: Jichuan
authors.initials: J
authors.lastname: Wang
mesh_terms: D000293:Adolescent; D032722:Advance Care Planning; D001741:Black or African American; D003144:Communication Barriers; D003220:Conflict, Psychological; D003657:Decision Making; D004219:District of Columbia; D005190:Family / Q000208:ethnology; D005260:Female; D006801:Humans; D007872:Legal Guardians; D008297:Male; D009369:Neoplasms / Q000208:ethnology / Q000628:therapy*; D010287:Parent-Child Relations / Q000208:ethnology; D057240:Patient Preference; D010865:Pilot Projects; D011203:Poverty; D011368:Professional-Family Relations; D055815:Young Adult