research-article2015
Article
Wei-Wen Wu, PhD, RN1, Shao-Yu Tsai, PhD, RN2, Shu-Yuan Liang, PhD, RN1,
Chieh-Yu Liu, PhD1, Shiann-Tarng Jou, MD2,
and Donna L. Berry, PhD, RN, AOCN, FAAN3
Abstract
Understanding how cancer symptom distress and resilience contribute to quality of life (QoL) in adolescent cancer
and may potentially help these patients achieve better health-related outcomes. The objective of this study was to
describe cancer symptom distress, QoL, and resilience in adolescents with cancer and to determine whether resilience
is a mediating variable. Forty adolescent cancer patients were recruited, and data were collected via a demographic
questionnaire, the Cancer Symptom Distress Scale, the Resilience Scale, and the Minneapolis-Manchester Quality
of Life Scale. Pearsons correlation, multiple regressions, and the Sobel test were conducted. Both resilience and
cancer symptom distress were regressed against QoL, accounting for 62.1% of observed variation in QoL scores.
The bootstrap result estimated the true indirect effect between .0189 and .0024, with a 95% confidence interval.
Resilience mediates the relationship between cancer symptom distress and QoL. Clinical use of a resilience measure,
for example to use in developing and evaluating interventions focused on enhancing resilience, may be practical for
nurses.
Keywords
resilience, cancer symptom, quality of life, adolescent, mediating effect
Background
Literature Review
of cancer symptom distress can assist health care providers with designing proper treatment plan, facilitating
patientphysician communication, improving patient satisfaction, and identifying hidden morbidities (Varni,
Burwinkle, & Lane, 2005). Nevertheless, Ericksons
(2013) review indicates a lack of measurements related to
symptom distress in adolescents with cancer. To assist
adolescent management of cancer symptoms, regular
symptom measurement during cancer treatment is needed
(Erickson et al., 2013).
Wu et al.
Study Objectives
The study objectives were (a) to describe cancer symptom distress, QoL, and resilience and (b) to determine
whether resilience was a mediating variable between cancer symptom distress and QoL for adolescent patients
currently receiving treatment for cancer in ambulatory
settings.
Method
Design, Setting, and Sample
This cross-sectional, descriptive study was conducted at a
childrens hospital in Washington State from November
2008 to January 2009. Approval to conduct this research
was obtained from the institutional review board.
The findings reported are an analysis of the secondary
objective of the original study (Wu, Johnson, Schepp, &
Berry, 2011). A convenience sample of 40 consecutive
adolescents was recruited. To qualify for the study,
patients had to meet the following inclusion criteria: (a)
be between 13 and 20 years old, (b) be currently undergoing cancer treatment, (c) be able to speak and read
English, (d) understand the study information, and (e)
give informed consent (ages 18-20 years) and assent
(ages 13-17 years). Participants younger than 17 years
were accompanied by their parents while they answered
the computerized questionnaires.
Assenting and consenting participants were asked to
complete questionnaires in the Electronic Self Report
AssessmentCancer Adolescent Form (ESRA-C AF)
electronic survey system on a touch screen computer in a
separate, private room. Parents were present, but participants were encouraged to answer questions independently. The ESRA-C AF was completed once by each
study participant (Wu et al., 2011).
Instruments
The instruments in the ESRA-C AF included a selfreported demographic questionnaire designed by the
authors as well as 3 standardized questionnaires: the
Minneapolis-Manchester Quality of Life Instrument
Adolescent Form (MMQL-AF; Bhatia et al., 2002), the
Symptom Distress Scale (SDS; McCorkle, Cooley, &
Shea, 2000), and the Resilience Scale (RS; Wagnild &
Young, 1993). The software infrastructure and user interface have been described elsewhere (Berry et al., 2011).
The MMQL-AF, designed specifically for adolescent
cancer patients aged 13 to 20 years old, was published in
2002 (Bhatia et al., 2002). The MMQL-AF is a validated,
multidimensional self-report instrument for adolescents
with cancer. The 46 items are reported as acceptable for
adolescents, and the wording is considered appropriate
MMQL-AF
Physical functioning
Cognitive functioning
Psychological functioning
Body image
Social functioning
Outlook on life
Intimate social relations
SDS
Nausea frequency
Nausea severity
Appetite
Insomnia
Pain frequency
Pain severity
Fatigue
Bowel pattern
Concentration
Appearance
Breathing
Outlook
Cough
RS
Possible range
Actual range
SD
No. of items
40
40
40
40
40
40
40
40
40
40
40
40
40
40
40
40
39
40
40
39
39
39
39
1.00-5.00
1.00-5.00
1.00-5.00
1.00-5.00
1.00-5.00
1.00-5.00
1.00-5.00
1.00-5.00
13.00-65.00
1-5
1-5
1-5
1-5
1-5
1-5
1-5
1-5
1-5
1-5
1-5
1-5
1-5
25.00-175.00
2.14-4.93
1.67-4.89
2.00-4.89
1.88-5.00
1.67-5.00
3.17-5.00
1.33-5.00
1.50-5.00
13.00-42.00
1-5
1-3
1-4
1-4
1-5
1-4
1-5
1-5
1-5
1-5
1-2
1-5
1-3
54.00-174.00
3.92
3.43
3.67
3.93
3.96
4.41
3.94
4.11
22.03
1.68
1.73
1.35
1.85
2.18
1.88
2.4
1.64
1.90
1.48
1.15
1.77
1.18
134.62
0.56
0.89
0.74
0.67
0.70
0.45
0.99
0.74
7.10
0.944
0.751
0.662
1.027
1.412
1.067
1.057
0.959
0.928
0.847
0.366
1.012
0.451
25.43
46
9
9
8
6
8
3
4
13
1
1
1
1
1
1
1
1
1
1
1
1
1
25
.91
.84
.86
.84
.77
.78
.83
.70
.84
.93
Abbreviations: MMQL-AF, Minneapolis-Manchester Quality of Life InstrumentAdolescent Form; SDS, Symptom Distress Scale; RS, Resilience
Scale.
mean scores may cause health professionals to misunderstand patients cancer symptom distress level. Individual
scores can serve as the prompt for a subsequent, more
detailed, symptom-specific assessment (p. 352) (Hinds
et al., 2002). They have been applied to research and
found to be a feasible way of addressing cancer symptom
distress and QoL in adults (Berry et al., 2011). Researchers
have decided to describe the most reported symptoms and
dysfunctional QoL categories by the beyond midpoint
ranking rather than via calculation of the sum or mean
score of each scale. A midpoint score was defined as the
score of the third response on the 5-point SDS for each
item and the 5-point MMQL-AF for each category.
Individual SDS items would be counted as beyond midpoint if scores were at or above the midpoint (3 points),
indicating that the counted items would be recognized as
distressed. Individual MMQL-AF categories would be
counted as beyond midpoint if scores were at or less than
the midpoint (3 points), indicating that those counted categories would be recognized as dysfunctional.
Pearsons correlation, multiple regressions, and the
Sobel test determined the relationship among cancer
symptom distress, resilience, and QoL. The researchers
hypothesized that QoL was the dependent variable, cancer symptom distress was the independent variable, and
Results
Sample Characteristics
From December 2008 through February 2009, data were
collected at a hematology/oncology setting and an orthooncology ambulatory setting of a childrens hospital.
Fifty-four eligible patients were approached, with 40
agreeing to participate in the study. Fourteen adolescents
declined participation due to reasons of physical distress
(n = 4), emotional distress (n = 2), not wanting to delay
appointments (n = 3), language barriers (n = 2), concern
about personal privacy (n = 1), no reason given (n = 1),
and parents rejecting for hiding the truth of getting cancer (n = 1). Almost half (6 out of 14) the participants who
had declined participation chose to do so out of physical
or psychological distress. All participants were in cancer
treatment, regardless of cancer stage. The sample included
Wu et al.
Table 2. Beyond Midpoint Ranking of Cancer Symptom
Distress and Quality of Life.
Item
No.
responding
% ranked at
or beyond
midpoint
Beyond
midpoint
rankinga
40.0
20.0
20.0
15.0
10.0
7.5
2.5
1
2, 3b
2, 3b
4
5
6
7
35.0
32.5
25.0
20.0
17.5
15.0
15.0
15.0
10.3
10.0
5.0
2.6
0
1
2
3
4
5
6, 7, 8b
6, 7, 8b
6, 7, 8b
9
10
11
12
13
MMQL-AF
SDS
RS
1.00
.761a (P = .000)
.558a (P = .000)
1.00
.440a (P = .000)
1.00
Table 4. Mediating Effect of Resilience on the Relationship Between Cancer Symptom Distress and Quality of Life.
Sequence
Dependent
variable
Independent
variable
Equation 1
Equation 2
Equation 3
Resilience
Quality of life
Quality of life
Cancer symptom
Cancer symptom
Cancer symptom
Resilience
R2
.172
.567
.621
.440a
.761b
.639b
.277c
.005
.000
.000
.018
Because zero was not in the 95% CI, the null hypothesis
was rejected, and it was concluded that the indirect effect
was indeed significantly different when resilience was
included. Thus, resilience could be confirmed as a mediator. The relationships among cancer symptom distress,
QoL, and resilience is shown in Figure 1.
Discussion
Cancer Symptom Distress
Our findings suggest the commonality of fatigue, pain,
and insomnia in adolescent cancer patients. Of these,
fatigue was the most reported symptom, which is consistent with previous studies on adolescents and young
adults with cancer (Daniel, Brumley, & Schwartz, 2013;
Kanellopoulos, Hamre, Dahl, Fossa, & Ruud, 2013;
Strauss et al., 2007). Fatigue often has no overt signs
(Wesley, Zelikovsky, & Schwartz, 2013) and may be easily overlooked by medical staff (Erickson et al., 2013;
Gordijn et al., 2013; Kanellopoulos et al., 2013; Mort,
Lahteenmaki, Matomaki, Salmi, & Salantera, 2011;
Orsey, Wakefield, & Cloutier, 2013; Verberne, MauriceStam, Grootenhuis, Van Santen, & Schouten-Van
Meeteren, 2012).
Quality of Life
Among all QoL categories of the MMQL-AF, physical
functioning was the most reported dysfunctional dimension. Park et al. (2013) conducted a descriptive study in
Korea with a translated MMQL-AF instrument and
reported similar findings: Adolescent cancer patients
reported the highest dysfunction in physical functioning
while cognitive functioning was ranked as the secondreported dysfunctional category. Adverse cognitive outcomes have been documented by other studies (Haddy,
Mosher, & Reaman, 2009; Kahalley et al., 2013; Persoon
et al., 2013; Sung et al., 2012). A decline in cognitive
functioning may cause poor academic performance,
resulting in poor adaptation to returning to school life
(Gurney et al., 2007). School-based interventions may be
required.
A few of our participants reported body image issues.
Meanwhile, the majority were not concerned about
changes to their physical appearance, perhaps realizing
that appearance is not as important as health. This finding
is consistent with qualitative research conducted by
Wallace, Harcourt, Rumsey, and Foot (2007) involving
Wu et al.
interviews with 6 female adolescent cancer survivors
aged 14 and 19 years who expressed an apparent shift in
perspective and expectation for their appearances. They
report increased appreciation for regaining their health
and had a more positive life outlook. However, other
studies demonstrated the opposite finding: Adolescents
have a negative view of their physical appearance due to
changes resulting from cancer treatment (Huang, Xia,
Sun, Zhang, & Wu, 2009). The mixed findings may be
explained by researchers tendency to focus on signs of
maladjustment (Wallace et al., 2007).
Resilience
In this study, the majority of participants reported moderate to high resilience, which may be explained by a previous study discovering that adolescents with cancer who are
resilient may receive a higher level of social support (Park
et al., 2013; Wesley et al., 2013). Receipt of support has
been associated with social functioning (Smith, Parsons, et
al., 2013). Indeed, participants in our study rated social
functioning as the highest among the 7 MMQL-AF categories. In comparison, less social support was associated with
lower levels of resilience, and outcome consistent with the
study conducted by Rew that uses the same RS as in our
study (Rew, Taylor-Seehafer, Thomas, & Yockey, 2001).
Fifty-nine homeless youth were recruited and reported low
levels of resilience (M = 112, SD = 18), which may be
related to insufficient social supports from family members and school authorities (Rew et al., 2001).
Limitations
First, our study was conducted at a single, U.S.-based
institution dedicated to pediatric care, precluding generalization beyond such a setting. Although information
about the treatment stage was not collected, all participants were outpatients who were receiving cancer treatment in hematology/oncology and orthopedics
ambulatory settings. It is assumed that participants cancer symptom distress and QoL will not vary significantly
with similar treatment stages and treatment protocols.
Second, almost half (6 out of 14) of participants who had
declined participation chose to do so out of physical or
psychological distress. Our sample may be biased toward
less distressed patients. Last, a Pearson correlation determination was required to analyzing the mediating effect.
The strong correlation between QoL and cancer symptom
distress was found, which might be related to similar
instrument constructs between SDS and MMQL-AF.
Future QoL studies performing correlation analysis may
pay attention to this confounding issue common in QoL
research.
Conclusion
Our findings confirm the mediating role of resilience in
the relationship between cancer symptom distress and
QoL. The results serve to increase clinicians awareness
of the importance of assessing and improving patients
resilience.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The authors disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article:
MaLaw scholarship of University of Washington, School of
Nursing; Scholarship of Sigma Theta Tau.
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Author Biographies
Wei-Wen Wu, PhD, RN, is an assistant professor for
Department of Nursing (National Taipei University of Nursing