title: A longitudinal, randomized, controlled trial of advance care planning for teens with cancer: anxiety, depression, quality of life, advance directives, spirituality.
abstract: OBJECTIVE
  To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
  
  
  METHODS
  Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion.
  
  
  RESULTS
  Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (β = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (β = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above.
  
  
  CONCLUSIONS
  Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.
authors.affiliation: Children's National Health System, Division of Adolescent and Young Adult Medicine, Children's Research Institute, Center for Translational Science and George Washington University School of Medicine and Health Sciences, Washington, DC. Electronic address: maureen.lyon2222@gmail.com.
authors.forename: Maureen E
authors.initials: ME
authors.lastname: Lyon
authors.affiliation: Children's National Health System, Division of Oncology/Children's Research Institute, Center for Cancer and Immunology Research and George Washington University School of Medicine and Health Sciences, Washington, DC.
authors.forename: Shana
authors.initials: S
authors.lastname: Jacobs
authors.affiliation: Gundersen Medical Foundation, Inc., La Crosse, Wisconsin.
authors.forename: Linda
authors.initials: L
authors.lastname: Briggs
authors.affiliation: Children's National Health System, Children's Research Institute, Center for Translational Science, Division of Biostatistics and Study Methodology and Department of Epidemiology and Biostatistics, George Washington University School of Medicine and Health Sciences, Washington, DC.
authors.forename: Yao Iris
authors.initials: YI
authors.lastname: Cheng
authors.affiliation: Children's National Health System, Children's Research Institute, Center for Translational Science, Division of Biostatistics and Study Methodology and Department of Epidemiology and Biostatistics, George Washington University School of Medicine and Health Sciences, Washington, DC.
authors.forename: Jichuan
authors.initials: J
authors.lastname: Wang
mesh_terms: D000293:Adolescent; D000328:Adult; D032722:Advance Care Planning / Q000706:statistics & numerical data; D016223:Advance Directives / Q000523:psychology* / Q000706:statistics & numerical data; D001007:Anxiety / Q000150:complications / Q000523:psychology*; D003863:Depression / Q000150:complications / Q000523:psychology*; D005190:Family; D005240:Feasibility Studies; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009369:Neoplasms / Q000150:complications / Q000523:psychology*; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D011788:Quality of Life / Q000523:psychology*; D029181:Spirituality; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult
keywords: Adolescent; Advance care planning; Advance directive; African-American; Cancer; Communication; Decision making; End of life; Family intervention; Pediatric palliative care