A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
Title
A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
Creator
M.E. Lyon; Wang J
Identifier
DOI: 10.1016/j.jadohealth.2013.10.206
Publisher
Journal Of Adolescent Health
Date
2014
Subject
Adolescent; Adult; Advance Care Planning/statistics & Numerical Data; Advance Directives/psychology; Advance Directives/statistics & Numerical Data; Anxiety/complications; Anxiety/psychology; Depression/complications; Depression/psychology; Family; Feasibility Studies; Female; Follow-up Studies; Humans; Longitudinal Studies; Male; Neoplasms/complications; Neoplasms/psychology; Patient Satisfaction/statistics & Numerical Data; Quality Of Life/psychology; Spirituality; Surveys And Questionnaires; United States; Young Adult
Adolescent; Advance Care Planning; Advance Directive; African-american; Cancer; Communication; Decision-making; End Of Life; Family Intervention; Pediatric Palliative Care
Description
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.
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.
Rights
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Citation List Month
July 2016 List
Citation
M.E. Lyon; Wang J, “A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality,” Pediatric Palliative Care Library, accessed April 27, 2024, https://pedpalascnetlibrary.omeka.net/items/show/10925.