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Original article
Article history: Received July 13, 2013; Accepted October 28, 2013
Keywords: Adolescent; Advance care planning; Advance directive; African-American; Cancer; Communication; Decision making; End
of life; Family intervention; Pediatric palliative care
A B S T R A C T
Purpose: 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 14e20years)/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-Specic Module, the Beck Depression and Anxiety Inventories,
the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness TherapyeIV, 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%e82%). Adolescents anxiety decreased signicantly from baseline to 3 months postintervention in both groups (b 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 (b 8.1; p .0296) were signicantly higher
among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to
Disclaimer: The contents of this study are solely the responsibility of the authors
and do not necessarily represent the ofcial views of the National Center for
Advancing Translational Sciences or the National Institutes of Health or the
American Cancer Society.
Conicts of Interest: The Lyon Advance Care Planning Survey is copyrighted by
the rst author and is available free of charge by request at mlyon@
childrensnational.org. Linda Briggs, MSN, RN, receives no royalties for training
IMPLICATIONS AND
CONTRIBUTION
Family-Centered Advance
Care Planning for Teens
With Cancer is the rst
randomized clinical trial of
pediatric advance care
planning involving adolescents with cancer. This
structured model meets the
World Health Organization,
Institute of Medicine, and
American Academy of Pediatrics recommendations
for early palliative care that
involves the patient, surrogate decision makers, and
physicians, moving the eld
of pediatric advance care
planning forward.
facilitators to use the Respecting Choices tool. This training is provided by the
non-for-prot Gundersen Health System, which does charge fees for the on-line
and face-to-face trainings.
* Address correspondence to: Maureen E. Lyon, Ph.D., Center for Translational
Science, Childrens Research Institute, Childrens National Health System, Room
M7658, 111 Michigan Avenue, N.W., Washington, DC 20010-2970.
E-mail address: maureen.lyon2222@gmail.com (M.E. Lyon).
1054-139X/$ e see front matter 2014 Society for Adolescent Health and Medicine. All rights reserved.
http://dx.doi.org/10.1016/j.jadohealth.2013.10.206
711
bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when rst 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, indepth pediatric advance care planning conversations safely.
2014 Society for Adolescent Health and Medicine. All rights reserved.
Methods
From January 2010 through July 2012, we conducted a small,
randomized, controlled, clinical trial in which adolescent/family
712
Measures
Analysis
Demographic data and diagnosis were collected from patient
report and conrmed by chart review. The second author then
conrmed diagnosis and relapse status. Enrollment, attendance,
retention, and completeness of data were gathered from the
study database. Measures were administered separately to the
adolescent and family by a research assistant who was not the
facilitator.
The Satisfaction Questionnaire was developed and pilottested for the FACE protocol with HIV-positive adolescents [18].
Thirteen items are answered on a 5-point Likert scale, ranging
from strongly disagree to strongly agree, after each of the
three intervention sessions. Higher scores indicate higher
satisfaction.
Five Wishes [30] is a legal document that facilitates expression of treatment preferences and served as a tool to facilitate the
participation of adolescents under age 18 years, but was signed
by the family to be legal.
Analyses used SAS 9.2 (SAS Institute, Inc., Cary, NC). The
impact of FACE-TC on psychological well-being, quality of life,
and spirituality over a 3-month observation period was assessed
using the Generalized Estimating Equation (GEE) models. The
GEE model accommodates longitudinal data with attrition. In the
GEE models, the main effect of time represents the outcome
change from baseline to the 3-month follow-up, and the
outcome change may depend on intervention status. When the
interaction between time and intervention is statistically signicant, the main effect of time only represents the outcome
change in the control group. Outcome change in the intervention
group is the sum of the time main effect and the interaction effect between time and intervention.
Data were missing for two dyads for the 3-month postintervention follow-up. One patient died and another was too
ill to participate. We conducted the 3-month outcomes analysis
713
Table 1
Description of Family-Centered Advance Care Planning intervention [19]
Session 1 Foundation
Session 1 Goals
Session 1 Process
Session 2 Foundation
Session 2 Goals
Session 2 Process
Session 3 Foundation
Session 3 Goals
Session 3 Process
Results
Participant characteristics
We approached 126 potential subjects, 34 of whom declined,
2 of whom had no surrogate, 18 of whom were interested but not
ready, and 10 of whom were ineligible. A total of 31 dyads were
screened for eligibility; one dyad failed screening because the
teen did not know she had cancer. We then randomized 30
dyads: 17 to FACE-TC and 13 to treatment as usual (Table 2).
There were no statistically signicant differences in baseline
characteristics between study arms.
Feasibility
We achieved benchmarks, including 72% of eligible families
enrolled, 100% attendance at all three sessions, 93% retention
at 3-month post-intervention follow-up, and 100% data
Satisfaction/worthwhile
714
Table 2
Baseline characteristics for adolescents with cancer (n 30) and their families (n 30)
Characteristic
Adolescent
Age, years
Mean
Mode
Range
Gender, N (%)
Male
Female
Race
Asian
Black
White
Declined
Cancer diagnosis
Leukemia
Lymphoma
Solid tumor
Brain tumor
Education
In high school/no high school diploma
High school grad/General Equivalency Diploma equivalent
Some college/no bachelors
College or higher education
Income
At or below federal poverty level
200% federal poverty level
300% federal poverty level
>300% federal poverty line
Unreported
Family
FACE
SOC
Total
FACE
SOC
Total
16.5
16
14e21
16.0
14
14e20
16.3
14
14e21
45.4
46
36e62
42.1
38
22e56
43.9
46.0
22e62
12 (71)
5 (29)
6 (46)
7 (54)
18 (60)
12 (40)
1 (6)
16 (94)
1 (8)
12 (92)
2 (7)
28 (93)
1 (6)
7 (41)
9 (53)
1 (8)
6 (46)
6 (46)
2 (7)
13 (43)
15 (50)
0
1 (8)
6 (46)
6 (46)
0
1
13
15
1
(3)
(43)
(53)
(3)
8 (62)
14
2
6
8
0
6
2
4
5
(35)
(12)
(24)
(29)
14 (82)
1 (6)
2 (12)
0
0
2 (15)
3 (23)
10 (77)
1 (8)
2 (15)
0
7 (41)
9 (53)
1 (6)
(47)
(7)
(20)
(27)
24 (80)
2 (7)
4 (13)
0
1
1
10
5
(6)
(6)
(59)
(29)
0
4 (31)
3 (23)
6 (46)
1
5
13
11
(3)
(16)
(43)
(36)
2
1
6
5
3
(12)
(6)
(35)
(29)
(18)
2
1
0
9
1
4
2
6
14
4
(13)
(7)
(20)
(47)
(13)
(15)
(8)
(69)
(8)
Table 3
Descriptive statistics of psychological at the baseline and 3-month Post
intervention
Score
Standard of care
Family-Centered
advance care planning control (N 13)
for teens with cancer
(N 17)
Baseline
3 month
Baseline
3 month
6.8 (8.2)
3.4 (3.4)
2.6 (2.2)
4.0 (5.1)
5.5 (4.8)
5.4 (6.6)
6.3 (5.3)
5.3 (7.7)
10.9 (8.1)
5.8 (5.8)
7.4 (4.3)
5.3 (8.0)
Adolescent
Total
Physical
School
Emotional
Social
Surrogate perception
of adolescent
quality of life
Total
Physical
School
Emotional
Social
Quality of life: cancer
symptom of
adolescents
Pain and hurt
Nausea
Procedural anxiety
Treatment anxiety
Worry
Cognitive
Perceived physical
appearance
Communication
Quality of life:
spirituality of
adolescents
Peace
Faith
Total score
Family-Centered
advance care planning
for teens with cancer
(N 17)
Baseline
3 month
Baseline
3 month
Mean (SD)
Mean (SD)
Mean (SD)
Mean (SD)
71.9
70.2
55.3
75.0
85.0
(17.4)
(23.7)
(25.2)
(19.9)
(11.3)
77.2
77.9
60.4
79.7
86.9
(13.4)
(19.8)
(17.6)
(17.7)
(11.5)
68.7
62.5
58.1
82.3
75.8
(17.4)
(25.4)
(21.6)
(17.9)
(17.3)
76.2
69.0
70.6
84.1
84.5
(10.4)
(23.0)
(15.1)
(14.3)
(10.8)
68.9
65.3
65.9
73.5
75.0
(18.9)
(29.4)
(22.2)
(19.7)
(17.3)
74.7
73.6
73.5
72.2
80.6
(15.8)
(21.5)
(18.9)
(21.0)
(14.6)
61.7
55.3
50.0
69.6
76.5
(16.3)
(27.8)
(17.8)
(14.6)
(17.5)
66.9
57.6
60.1
72.5
81.4
(11.1)
(20.7)
(22.8)
(16.0)
(14.7)
75.7
82.6
81.4
86.3
735.
66.3
82.4
(25.2)
(17.5)
(22.7)
(16.4)
(26.9)
(25.2)
(23.4)
78.1
89.1
79.7
88.0
67.7
71.9
87.5
(28.7)
(12.3)
(20.9)
(20.4)
(29.3)
(20.4)
(16.9)
74.0
70.8
88.5
91.7
71.2
76.9
88.8
(30.0)
(19.9)
(19.7)
(12.8)
(14.3)
(16.7)
(13.8)
79.2
76.3
84.0
91.7
70.1
74.2
91.7
(22.8)
(20.9)
(17.9)
(13.8)
(17.6)
(17.4)
(15.5)
83.3 (15.9)
84.4 (15.2)
89.1 (18.4)
94.4 (8.9)
28.2 (3.8)
13.2 (4.0)
78.9 (13.1)
27.6 (3.6)
12.2 (4.4)
78.2 (8.1)
24.4 (5.5)
11.8 (3.7)
70.8 (7.8)
25.4 (4.0)
9.9 (4.9)
67.2 (14.3)
standard of care (100% vs. 0%) and the advance directive documents were easily found in the medical record at 3-month postintervention. All treating oncologists received an electronic copy
with a process note.
When asked, When do you think is the best time to bring up
end-of-life decisions? intervention adolescents responded,
Before getting sick (19%; n 3), At diagnoses (19%; n 3),
When rst hospitalized (0%); When dying (25%; n 4), or all
of the above (38%; n 6). Only one adolescent reported ever
talking to anyone about wishes for care at EOL before the study.
Spirituality
Total score of adolescents in the FACE-TC group was signicantly higher (b 8.1; p .0296) at baseline and 3-month
follow-up, compared with controls (see Table 3 for means and
SD, and Table 5 for GEE results). Peace subscale scores of adolescents in the FACE-TC group were signicantly higher (b 3.9;
p .0239) at baseline and at 3-month follow-up, compared with
controls. Faith subscale scores of adolescents at 3-month followup dropped signicantly from baseline in both groups, because
the time effect is statistically signicant (b 2.2; p .0466) and
715
716
Table 5
Selected results of Generalized Estimating Equation model
Outcome
Psychological score
Beck Anxiety Inventory
Adolescent
Surrogates own mood
Beck Depression InventoryeII
Adolescent
Surrogates own mood
Quality of life
Adolescent
Total
Physical
School
Emotional
Social
Surrogate perception of adolescents quality of life
Total
Physical
School
Emotional
Social
Quality of life: spirituality of adolescents
Peace subscale
Faith subscale
Total
Main effect of
Interventionb (p value)
9.8 (.0002)
4.3 (.0609)
5.6 (.0212)*
1.2 (.0341)*
3.1 (.3542)
.9 (.6973)
1.4 (.6490)
2.0 (.0392)*
10.9 (<.0001)
5.8 (.0001)
3.0 (.1007)
.9 (.5375)
5.4 (.0268)*
.4 (.8424)
3.8 (.0642)
1.2 (.5007)
98.7
62.5
58.1
82.3
75.8
(<.0001)
(<.0001)
(<.0001)
(<.0001)
(<.0001)
5.9
3.7
13.6
.2
7.2
(.1123)
(.4087)
(.1085)
(.9731)
(.0630)
3.1
7.7
2.7
7.3
9.2
(.6132)
(.3784)
(.7472)
(.2741)
(.0830)
1.5
3.1
9.3
3.6
6.2
(.7339)
(.6043)
(.3674)
(.5193)
(.1552)
61.7
55.3
50.0
69.6
76.5
(<.0001)
(<.0001)
(<.0001)
(<.0001)
(<.0001)
3.8
.3
9.8
2.3
4.0
(.2435)
(.9643)
(.1594)
(.6373)
(.3912)
7.2
10.0
15.9
3.9
1.5
(.2475)
(.3249)
(.0287)*
(.5179)
(.8037)
.8
6.4
2.0
4.3
1.1
(.8741)
(.4889)
(.8445)
(.5586)
(.8464)
Intercept (p value)
24.4 (<.0001)
11.8 (<.0001)
70.8 (<.0001)
1.0 (.6228)
2.2 (.0466)*
3.9 (.3614)
3.9 (.0239)*
1.3 (.3286)
8.1 (.0296)*
1.6 (.4380)
1.2 (.3654)
3.0 (.5389)
The Generalized Estimating Equation results of scores about quality of life for cancer symptoms of adolescents are not included because both time and intervention did
not have signicant statistical effects.
a
Time was coded as 0 baseline and 1 3-month post-intervention follow-up.
b
Intervention was coded as 0 standard of care control and 1 Family-Centered Advance Care Planning Intervention.
* p < .05.
717
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